My Kid is a Damn Nutter
The older one, I mean. The next time I'm at the pediatrician's office (that would be in January for his little sister's 9-month checkup,) I'm going to ask her at what age it becomes reasonable to examine for hyperactivity and obsessive-compulsive behavior. I mean believe me, I understand that two-year-olds are typically a pain in the ass, and I honestly feel that I am above-average when it comes to being patient with him. But let's consider a few examples:
--He rejects the concept of brushing his teeth, and we have to physically restrain him every single night to get it done. At no point has he shown any acceptance that this is going to happen, despite complete consistency on our part.
--He compulsively chants snippets of songs and catchphrases at me all day long, and will say his half again and again nonstop until I repeat what he has said to me, or whatever complementary phrase I'm supposed to say. One typical progression goes (exactly) like this:
Him: "ABC Song."
Me: "A, B, C, D--"
Him: "Big A"
Me: "Big A, Little A, what begins with A? Aunt Annie's Alligator, A, A, A." [Continue reciting this book until about letter I. If I stop, he prompts with the next letter.]
Him: "ABC Song."
Me: [Alphabet song sung to a different tune, from the show "Choo-Choo Soul."]
Him: "Number song." [More Choo Choo Soul]
Me: "1, 2, 1-2-3--"
Him: "Bullet train."
Me: "If I were a car I'd be a race car, and if I were a--"
Him: "Jump jump."
Me: "Jump, jump, Put your hands in the air, Jump, jump, Wave them everywhere--"
Him: "Jumping jacks!"
Me: Yes, I see that you are doing jumping jacks.
If at any point in these scripts I don't respond, he just keeps chanting his last line over and over and over until I do. I have gone so far as to lock him out of the bedroom to try to break the cycle. 20 minutes later I emerged, and he immediately picked up right where he'd left off.
--His newest thing this winter is he won't wear long sleeves. Even if it's 40 degrees outside. I figure when he gets cold enough he'll put on his jacket, right? So far he's still stubbornly holding out, and his elbows and arms are red and chapped by the end of each day.
--He can't be trusted to walk on his own in any store or parking lot, though he desperately wants to, because the instant his feet touch the ground he bolts. He's not even going anywhere, he's just going. If I try to hold his hand he deadweights to the ground, forcing me to pick him up, at which point the kicking to be let down begins. He has never in his life walked while holding my hand, ever.
--One of his favorite activities is "drawing with crayons." This consists of taking each of the 100+ crayons out of the box and lining them up on the table in front of him next to the big coloring book. He does not actually ever draw in the book, but it has to come out with the crayons all the same. When they are all lined up, he is done. Usually he tries to color-coordinate them as well, pulling all the blue ones out first, etc.
It's been especially bad since the baby was born, but it's hard to tell if that's actually a cause or if it just happens to line up with a difficult age. I'm really hoping we're at the nadir here, and he's going to start improving as he approaches 3. But the glimpses of light at the end of the tunnel are few and far between.
If you're concerned about these behaviours I'd definitely be asking. It might just be him being a bit more cantankerous than other 2yr olds, but it could be something like aspergers which is not necessarily that terrible although it could be.
The point is, better to know than not. Perhaps if there is a problem there will be things you can do to make your life and his a bit easier.
I'm sure it's probably just a very active imagination.
ETA: Actually, sometimes I think my husband has aspergers. His social skills are terrible, he's incredibly clumsy and he has some very weird ideas about how the world works. lol So dont worry, even if he does have something like aspergers he could still have a wonderful life and marry a fantastic chick like me and make babies. ;)
I think you're right--some very strange behavior. Especially the crayon thing, and the picking up the song after 20 minutes thing.
Def consult the pediatrician.
Asperger's.
It just waves out at me like a flag.
Sounds like he's a happy kid, though -- a lot of Aspie kids are miserable and belligerent. Of course it's a continuum and comes in many varieties, but I definitely would suspect some kind of autism.
Yes, 2 year olds can be a pain, and weird, but neither of mine ever behaved remotely like that. They were difficult in different ways. :)
However, if he is diagnosed with Aspergers, it doesn't have to mean a lifetime of labels and IEP's. At two, he's the perfect age for learning therapy. A friend of mine has a daughter who, at four, was diagnosed with SEVERE autism. They worked with her intensively and today she is functioning very near to normal, very smart, just a little "off" when it comes to things like accepting changes and understanding social cues.
Ali, it's interesting that you say you suspect hubby is an Aspie. I've thought the same thing about myself. I can be incredibly naive and oblivious, when I really should know better. I had some strange habits as a young child too; in fact the "crayons" thing jumped out at me because it reminded me of myself. I had blocks like Legos and I remember clearly that before I built anything I had to sort them out and stack them Just So. If I ran out time, sometimes that was all I did, sort them out.
Of course, there are many other names for eccentric behavior. ADHD. ADD. PDD. OCD. And when you get down to it, so what, is there ever a "normal" anyway? A lot of "not quite normal" people have just learned ways to cope. Because most of the people in the autism - > ADD spectrum are incredibly bright people that just haven't quite figured out how to manage their blessings, to fit in with the dumbed-down rest of the world.
I'm almost certain I'd have been diagnosed with Asperger's if it had been a choice when I was a kid.
Anyway, I'd definitely get some advice. Not wanting to walk with you could just be fierce toddler independence. (My son used to crawl on the table incessantly during dinner. We finally figured out that he hated having a different plate from everybody else. Once we gave him a big china plate instead of a plastic kid's model, her never crawled up again.) Repeating songs? They all do it. The 20 minutes thing? Hmmmm........
The crayon thing definitely seems odd to me (though I'm hardly an expert). If he were just sorting the crayons by color as a prelude to coloring, that would be one thing... but I think putting them back without actually coloring seems very unusual.
Jeez, I was gonna say he sounds perfectly normal to me. I see a lot of automaton kids who sit docilely in front of the tube or whatever with a blank look on their faces.
Imagine yourself at 14 and the energy level you had at that time and multiply it by 10, subtract any social conditioning about what is acceptable behaviour and you are just at the threshold of being a child.
YMMV but I feel a lot of these diagnoses are more accurately the failure of the child to be convenient to the caregivers or teachers.
I'm sure you've read the Sears books cover to cover and have also read Penelope Leach. Again, you may have a different take, but they can help you sort out a range of behaviors. Especially Leach.
I saw the crazy jumping video you put up and will post some of my own later this week so you can have crazy company.
Another thing to ask yourself: there is a lot of talk about drinking enough water throughout the day to keep your energy levels up, but ask yourself are you drinking enough alcohol? Perhaps not.
Probably just the lingering effect of Monster's visit.;)
Get him checked out. He may have tactile sensory issues as well. You know that feeling you get when you first put on a wool sweater. That is what it feels like all the time to a kid with hypersensitivity. If you get it checked out now and he is identified, an occupational therapist could teach you how to brush his arms to alleviate the problem. I used to do behavioral work with kids on the autism spectrum. It is amazing what can be done if you catch them young.
Probably just the lingering effect of Monster's visit.;)
:lol:
His behaviours are almost identical the the kids of a friend of of mine, who was eventually diagnosed OCD. But they told her at this age it was too young to tell and that some kids behave this way and simply grow out of it when they go to preschool and school and realize it's not what everybody does.
Could be aspergers scale, but it didn't jump out at me when I met him, althoug aspergers doesn't always, and again, he's so young.
no harm in talking to the ped, though. We just had the "is our kid ADHD" talk with ours. The answer was no, he's just badly behaved...... :lol:
I dunno. I was that bad when I was a kid, I really was. And now look at me...
...take whatever meaning from that you wish. heh.
They are all different in a lot of ways.
Thats alot of great interaction with you, the singing.
Does he revert to the singing, etc. if you are playing trucks and cars with him? He might yet be a little young though for this?
My boys around that age liked me to make tons of sounds with the trucks and cars as we played on the floor driving the little toys around.
I made air brake hissing sounds, motor revving sounds as I moved the truck or car, and lowering my voice to change it said things like, "Bye Joshy, I'm going to work now." as I 'drove' the car to where I had a truck parked in a different place on the floor.
They loved that interaction with me.
He is at a very sing-song age. They love to have their parents sing to them at this time. Try mixing it up with some other songs for him that would appeal to him like Old McDonald Had A Farm, you can really have a lot of fun with this song as you make exaggerated animal noises and mix in some laughing and giggling with him.
I remember lightly poking my boys on their chest and belly and laughing while singing the part of- "with a moo, moo here(poke), and a moo, moo there(poke), ... you get the idea.
Is his singing behavior maybe just his means of interacting relationally with you right now? He may just really need time with his dad as far as the singing goes.
Are you gone for extended times due to work where he would develop longing for you?
Some of the other stuff though, I don't know Clod. The bolting could just be headstrong bad behavior. What are his consequences for it?
But I agree with the others, definitely ask about it.
Asperger's.
My very first thought.
Does he revert to the singing, etc. if you are playing trucks and cars with him?
The singing happens all day long, during any and all activities. He will be watching and dancing to one song coming from a musical toy or DVD and trying to get me to sing a different song at the same time. The only time the singing stops for any length of time is when there are a lot of other people around. At his core he loves people and attention. The thing that makes him happier than anything in the world is people clapping and cheering.
Try mixing it up with some other songs for him that would appeal to him like Old McDonald Had A Farm...
Oh no. If it's not an "acceptable" or asked-for song, he screams.
He may just really need time with his dad as far as the singing goes.
Are you gone for extended times due to work where he would develop longing for you?
I'm his mom. :) He's with me pretty much 24 hours a day.
Some of the other stuff though, I don't know Clod. The bolting could just be headstrong bad behavior. What are his consequences for it?
I catch him and pick him up again. He walks holding my hand, or I carry him. Which means I carry him (kicking and fussing.)
I know it's not a popular opinion here, and for any lurkers or newbies - no, I do not have children.
What it seems to me is that you have a very intelligent and articulate son.
He is at an age where he is exploring the giddy boundaries of what he can do to change the behaviour of the people around him.
I like doing this! Wow! If I keep doing this I will make them do it too!
It's almost like a troll, but with no malicious intent - it is all about patterns.
My brother shrieked having his teeth cleaned for years. My parents just manhandled him without trying to find out why. I very much doubt this is the correct response and certainly it distressed my sister and I (and probably caused us some fear of our parents). So I can't answer that one.
But for the rest, I can't see that some sort of request, warning and punishment system can't work. It would simply help him to bring his behaviour into line with what society in general would expect.
Mini-Clod - sing this, sing that
Clod - No, Mummy is busy right now
Mini Clod - NO - SING THIS SING THAT!
Clod - No. We will sing it when Mummy is ready - you'll go into time out if you keep asking
Blah blah blah I know you'll know the Naughty Step and Time Out and all that guff already.
Of course it might be true that you have a child with a disorder that cannot be modified by anything other than drugs, special schools, hospital visits and years of help. Crikey, Clod - I really, really hope not and I hope you look at everything else first.
You might want to try giving behavioural modification a chance - for at least 6 weeks. After all if your son does have any of these conditions, it is what he will have to be taught in the long run. And if he's just exuberant and bright, he'd be better off with them anyway.
Disclaimer - although as I said I don't have children and don't want them, from the age of 6 I watched my mother struggle with my brother, who tested eligible for MENSA when he was in primary school. Everything was a battle. Everything. As an adulty I think a bit of give and take (about not wanting to wear anything but blue) and a bit of ask-explain-threaten-punish might have gone a long way. Instead it all involved me - the middle child - because I hated all the fuss, the special treatment (SO UNFAIR!) and the noise.
It's almost like a troll, but with no malicious intent - it is all about patterns.
You're absolutely right, it's about patterns, but he's not actually demanding that I sing, the way a kid would normally say, "Do this for me!" He doesn't even let me finish the songs the majority of the time. It's just a chant he starts and then gets stuck on. He doesn't get more intense, or more frustrated if I don't respond--he just keeps going. He'll chant to himself if I'm not in the room. I complete his phrases for my own sanity, because so far it's the only way for him to move on from the thing he's stuck on. (He does, however, get extremely frustrated if I give the wrong response.) He's grouped his books into seemingly random units that must be "completed" too--for example, if we read the Curious George firetruck book, we have to read the Tonka dump truck book too. (And it's not because they're both about vehicles, he has dozens of that type. I personally suspect it's because they're both mostly yellow.) Those books cannot be read individually, no matter how many other books we do or don't read.
Wanted to add that I didn't take your suggestions indignantly--I wholeheartedly agree that a lot of kids' problems are directly traceable to pushover parents. We are, if anything, more authoritative with him than we have been with the other kids, because I know he responds well to very defined and immobile boundaries. Give him an inch, he'll want to take a mile. After enough consistency, he's usually pretty good about accepting that this is "just the way things are." Of course, God help us if we then need to change the pattern ourselves, because it isn't happening. :)
I wholeheartedly agree that a lot of kids' problems are directly traceable to pushover parents.
85% of all problems are directly traceable to parents - or something like that.
85% of all problems are directly traceable to parents - or something like that.
I think it's, 85% of all parents forget they're top management.
A lot of this sounds like classic autism behaviour, especially getting stuck in loops and insisting on certain routines.
If it is, it will be a challenge but it's not a disaster. Accurate diagnosis and appropriate management will make all the difference. Best of luck with the little fella.
I see Clod. Wow man, this has all got to be wearing you down.
Get the little guy checked out Clod, definitely.
I've got nothing terribly insightful to add, just that from the description, this sounds like more than just your standard 2 year old nutty behavior and you should discuss it with your pediatrician at the next opportunity.
Maybe I'm missing something in here but I don't really see a problem in here. Kids are kids.
He rejects the concept of brushing his teeth, and we have to physically restrain him every single night to get it done. At no point has he shown any acceptance that this is going to happen, despite complete consistency on our part.
Lil Lookout until he was five. Otherwise bizarrely aware of hygene, just didn't like the toothbrush. He grew out of it.
He compulsively chants snippets of songs and catchphrases at me all day long, and will say his half again and again nonstop until I repeat what he has said to me, or whatever complementary phrase I'm supposed to say. One typical progression goes (exactly) like this:
I remember Lil Lookout doing this. His were television jingles and kidzbop stuff though. I think he was three. He still loops on lyrics but doesn't require any outside intervention unless I'm especially tired of hearing a particular lyric. He is always singing or humming. always.
If at any point in these scripts I don't respond, he just keeps chanting his last line over and over and over until I do. I have gone so far as to lock him out of the bedroom to try to break the cycle. 20 minutes later I emerged, and he immediately picked up right where he'd left off.
Again Lil Lookout. If he asks a question at night (usually a stalling technique) that I don't answer he WILL wake up with the question on his lips.
His newest thing this winter is he won't wear long sleeves. Even if it's 40 degrees outside. I figure when he gets cold enough he'll put on his jacket, right? So far he's still stubbornly holding out, and his elbows and arms are red and chapped by the end of each day.
LL is 7 and hates long pants with a bloody passion. complete freakout. Even visiting in illinois during winter he wears shorts. (but so do I when I can get away with it.) he had to wear jeans for a school function today and it was a 30 minute fight. There is no logical reason other than he just doesn't like them. OK.
One of his favorite activities is "drawing with crayons." This consists of taking each of the 100+ crayons out of the box and lining them up on the table in front of him next to the big coloring book. He does not actually ever draw in the book, but it has to come out with the crayons all the same. When they are all lined up, he is done. Usually he tries to color-coordinate them as well, pulling all the blue ones out first, etc.
2.0 behaves like this. he is only 21 months now but a very very active problem solver. he likes to take things apart and organize the pieces. if left on his own he will take Lil Lookout's big box of star wars toys and line the men and weapons up by shape and color order. He calls that playing. (at least the way he says "playing") He does the same with dvd boxes, shampoo bottles, etc. He'll actually go into the cabinets and reorganize the tupperware into well defined order. strange to me, but it's his thing.
I'm certainly not dismissing your concerns and would certainly support the suggestion to have him tested, but I wanted to point out that nothing you've described is really that out there. Kids are kids and they all have their own quirks and stages. I will say this, though. Everytime (so far) Lil Lookout has picked up a quirk that was really bugging me to the point of being a REAL problem it would fade away on it's own.
chin up, mom - you've got a boy.
chin up, mom - you've got a boy.
Thats exactly what I was thinking! Seemed too simplistic a response though.
Could be. I've been accused of being simple more than once in my life.
Having a kid with a disorder like autism or asperger's does not mean the only way to deal is with drugs and other special means. Unless the problem is severe - and I doubt it, even if there is some of this happening with mini-clod - it usually IS treated with behavioral modification.
Diet modification too. Sometimes odd behaviors in children (and probably adults as well) are caused by allergies or sensitivities to food, such as gluten, wheat products, artificial dyes, etc.
That said, if his quirks don't interfere with happiness, safety and daily success, there's nothing wrong with being a bit of a nutter. :)
That's what I keep telling people who don't understand me! ;)
He does the same with dvd boxes, shampoo bottles, etc. He'll actually go into the cabinets and reorganize the tupperware into well defined order.
That's not a boy, that's a House Elf.
Send him around, will you, the place is a mess.
chin up, mom - you've got a boy.
Well at least I know he'll be good at soccer. ;)
Seriously, I'm eagerly waiting for him to hit three, when all the little kid sports become available to him. We are always looking for ways to burn off the energy. He can choose any sport he wants, as long as it isn't (American) football.
Well at least I know he'll be good at soccer. ;)
Seriously, I'm eagerly waiting for him to hit three, when all the little kid sports become available to him. We are always looking for ways to burn off the energy. He can choose any sport he wants, as long as it isn't (American) football.
My God, you are SO right. My daughter, from about 2 on, pushed every last one of my buttons and drove me NUTS - though for different reasons than your mini-clod. As soon as I got her started in gymnastics, with its intense conditioning (and a few other sports she tried, time to time) she was oh, so much easier to deal with and happier, too.
I noticed something similar with my son. He was having school troubles - even more so than now - and when he started wrestling everything changed.
Not saying that in either case it was an instant cure, but the sports help in so many ways.
I really wonder how different my life would have been if I had been able to play sports.
Well at least I know he'll be good at soccer. ;)
Seriously, I'm eagerly waiting for him to hit three, when all the little kid sports become available to him. We are always looking for ways to burn off the energy. He can choose any sport he wants, as long as it isn't (American) football.
Have you tried stuff that's "too old' for him? Real lego (not duplo) for example? It's possible that he's just super smart and bored out of his skull, so opts for the comfort of interacting with you and knows what pushes your buttons.... are there any activities he gets 'lost' in, even for little bit?
Oh sure, he can focus on lots of things for long periods of time, especially anything musical. He knows how to use the keyboard (the piano-kind, with programmable voices and all that) better than I do. The non-typical aspect would be that he constantly twists back and forth in the chair while he's playing with it, or climbs onto and off of the couch repeatedly while looking at a book, or just tries to make himself dizzy for a half-hour or more at a time. If he's sitting still, it's usually the first sign that he's sick. :)
My favourite game pre-school was to make myself dizzy with the broom. You know, dig it into the ground by lurching round and round it until letting go to get a dizzy "high". I was banned after a while, because Mum thought I was doing it too much. In a file of my oldest memories is being asked to explain the inevitable, resulting Broom Holes in the grass. I felt like a junkie trying to explain away needle marks. I have a picture of me with the broom, grinning like it was my best pal, my hair puts me at about 3.5.
Good luck Clod. Your son does not sound normal. I'll love to respond "Neither was I and look how I turned out!" but then you'll have to be prepared for him to come back in 30-odd years to live with you. I hope he turns out in the best way of not-normal. Like, the rest of the Cellar sort of way :)
My brother in the other hand was the weirdest of all of us. My sister and I loved Tales of a Fourth Grade Nothing and Superfudge because we finally realised we weren't alone. He is 32 now, working for The Treasury and happily married. One of the few things that I think, "If I knew then what I know now" would be to go back to those times and realise at an emotional level that he was family, he was never being sent back and be nicer to him much earlier.
Steven, I love you.
having read all the other responses,
Normal is over rated, maybe you could get a diagnosis of some such, many of us could. I played with him, he seemed OK, he put his toys back in place when I moved them, but he didn't have a fit about it, we built some block towers too.
Cabin fever. It sounds like he's bursting at the seams and needs to get out and do stuff , with other kids. Anybody who knows our kids schedules, swimming, soccer, gymnastics, hockey etc. etc.
At that age I think there was a baby tumbling thing, and swimming of course.
Yeah, I signed him up for one of those baby tumbling classes, at The Little Gym. He enjoys it, but its primary benefit for him has been learning to take turns, stop playing with one item and move onto the next even if he's not ready, etc. It's been good, but for the money I don't think I'll do it again. Much better has been "Inflatable Wonderland," a huge arena full of those bouncy-castle things. It's $5 for an all-day pass for him, and he'll bounce and throw himself around for upwards of three hours. And if he's not tired yet, we can go eat and come back and bounce some more. That place is great. He loves swimming too, but it's not easy to take both kids by myself. I have this notion that I want to avoid using floaties on him, so he can learn to swim on his own from the beginning. But I should probably just abandon that idea, it would be so much easier if he were floating on his own.
the difference between the inflatable place and a gym class is that in the class he sees the same kids again and again and gets to make friends. There's no social aspect to the bouncy place, other than fleeting interactions with strangers. Try to find a playgroup of some sort. if you go regularly to the bouncy place at the same time, you might well find yourself hooking up with other moms with kids the same age and your kids might even play nicely together. Sometimes. This is how our playgroup got started and we (moms)still meet weekly, even though the youngest is now in second grade.
It's better not to have the floaties for swimming if you can avoid it. could you hire a "mother's helper" for an hour to watch foblette on the pool side while you take a parent/tot class with Mini? are evening classes a possibility? could you sing up both kids for the same class and rope Mr Fob in?
That's not a boy, that's a House Elf.
Send him around, will you, the place is a mess.
:biglaugha
He sounds like a normal kid to me. Certainly he wants attention and you should (I never like using that word so forgive me) make a point of giving him one-to-one attention for a good period in the day. I totally dig the singing thing. My 3.5 year old does the same thing.
But please....your child is not a nutter. He will pick up every nuanced negative vibe you have towards him...it's not deliberate, kids just have a very sensitive subconscious built-in 'mummy is annoyed' radar that makes them want to pull your strings more.
If you get cheesed off with him, he will sense it and keep annoying you until he gets what he wants. Give him a little of what he wants. Set your boundaries. If he breaks them, time him to the corner or a stair (don't call it a 'naughty' corner.....kids only end up thinking they are naughty). In car parks, put a harness on him (yeah, I heard the whole 'but they're not animals' argument....it's not much of an argument if your child gets hit by a car).
Give him some responsibility....sing songs together while you both do the dishes.
But remember, the more you resist, the more it persists.
Update: so at his sister's checkup, I got to mention a few things to the pediatrician, and of course she also got to witness again his general behavior when he's in an environment he doesn't like (in this instance, he was hanging off the door handle screaming bloody murder trying to escape the exam room, and giving extra punctuation to his protests when the doctor would look at or touch the baby--not him.) She referred us to an occupational therapist, and recommended strongly that we go. So we have an appointment for Tuesday. I'm kind of ambivalent about whether this lady will be able to help, but I was at least encouraged by the new child-patient questionnaire. It was 7 pages long and included a lot of surprises along the lines of, "Hey! Yeah, he does do that!" Lots of stuff that is not in the typical Autism/Asperger set of symptoms, which he honestly doesn't match up with at all. So at the very least they've dealt with his brand of crazy before. :)
Probably his young brain just needs to catch up with how smart he is...if he's anything like Mom. :)
Keep us posted.
good news. he's probably just acting out because the kids at preschool tease him about the pictures of his mom peeing on the liquor store floor.
I'm tempted to go do it and post the picture just to live up to the hype.
I think he'll always be moody but the only thing wrong with him is that his mind is too far ahead of his brain.
Once his brain catches up, stand back and be amazed. I suspect he's going to need a lot of stimulation to stay interested so plan ahead or prepare to deal with a child who doesn't handle boredom very well.
Just an opinion based on what I've read so far.
Update: so at his sister's checkup, I got to mention a few things to the pediatrician, and of course she also got to witness again his general behavior when he's in an environment he doesn't like (in this instance, he was hanging off the door handle screaming bloody murder trying to escape the exam room, and giving extra punctuation to his protests when the doctor would look at or touch the baby--not him.) She referred us to an occupational therapist, and recommended strongly that we go. So we have an appointment for Tuesday. I'm kind of ambivalent about whether this lady will be able to help, but I was at least encouraged by the new child-patient questionnaire. It was 7 pages long and included a lot of surprises along the lines of, "Hey! Yeah, he does do that!" Lots of stuff that is not in the typical Autism/Asperger set of symptoms, which he honestly doesn't match up with at all. So at the very least they've dealt with his brand of crazy before. :)
You may want to pick up a copy of:
The Out of Sync Child by Carol Stock Kranowitz. I just started reading it for work. It will challenge some folk's behaviorist doctrine unless they realize that biology determines how sensory inputs are processed. We also have to keep in mind that brain science is moving so fast that best practice will struggle to keep up. On a semi-related note, I'm training a kid in fencing with some body-in-space issues. It's interesting figuring out how to get him to find himself in a real world situation rather than a classroom.
Well.
In case I had any doubts that we were doing the right thing by getting him evaluated, the last few days have been the absolute worst he's ever been. He's been completely insufferable and uncontrollable, instead of just a little "off" like he normally is. The hairtrigger emotional meltdowns with no cause (as opposed to the standard daily "going to bed" and "sitting down to eat" and "not getting to run in the parking lot" meltdowns) skyrocketed from once every few days to about 3-4 per day.
We spent an hour with the occupational therapist this morning, and she gave a general diagnosis of
Sensory Processing Disorder (which is the topic of the book Griff recommended, points duly awarded,) with some other red flags (like the lyric-reciting, toy-car-spinning, and the fact that he has a very high vocabulary yet for the most part does not speak in sentences or use pronouns) that may indicate PDD-NOS after further evaluation, which is basically the catchall diagnosis for high-functioning autistic disorders that don't match up with Asperger's or one of the other common ones.
This is not really news to us of course, but it still makes me really sad.
On the one hand, we have caught it relatively early, which is great for treatment options, but it also means that we don't yet know what other idiosyncrasies may develop. As an example, he currently has no muscle tone in his lower face, presumably because he has tuned out those muscles because of constant over- and under-sensed oral inputs. Right now the only outward sign is slackness and drooling, but without improvement, it could lead to greater speech problems down the road, which would impair communication/self-esteem and possibly lead to the more recognizable Asperger's symptoms like non-sociability and poor communication skills. There are specific regimens we're supposed to use to get him to learn how to move and sense his mouth normally, like spray this incredibly sour liquid on his lips and pull on the insides of his cheeks in that typical "funny face" kids do. He thinks the sour stuff is great (it is
painfully sour to most people) but really, really doesn't want me messing with his cheeks (which is exactly why I have to do it, but getting bitten is not fun.) Another thing I'm supposed to do is make all of his toys as heavy as possible, because it will help his muscles and movement if he gets more feedback from the things he is doing. In most cases this means drilling small holes and filling them with sand or rice. He freaked out about the weight belt at the therapist's office, so I'm also working on finding ways to make his clothes heavier, possibly by sewing little bean bags into the legs of his pants.
We will be going to the occupational therapist once a week for now. Twice a week is also an option, but our insurance only covers 60 visits for the lifetime of the patient, and we would burn through them pretty quickly at that rate. But that's
per diagnosis, so the workaround for that is to leave him at a diagnosis of only SPD for now, and then upgrade him to PDD for another 60 visits, but really treat him for both the whole time.
Regardless, I really hope this week was just a bad week and not an indication of his new baseline. It was pretty damn rough.
:comfort: I'm sorry your fears were confirmed but it sounds like you've got a handle on the right way to go now.
The school district will be responsible for the cost of those treatments at some point, make sure any diagnosis is listed on his IEP. This is tough but you're tougher. Keep an eye out for respite care opportunities like local college kids etc... You're in this for the long haul so take care of yourselves and each other.
Clod, I'm having trouble putting the right words to how I feel. I hope you and Mr. Fob are bearing up well. I know that you are an Uber mom so I'm not too worried about the little one. It's the Uber moms who need the support.
Feel free to pm Griff. I probably won't be too helpful, but I'll try.
Fobble, that's a hard reallity to face, and no doubt. but it's good news. it's good that you noticed something wasn't right and didn't play ostrich, it's good that you know you weren't imagining it, it's good that you know you're not alone -if you were, there wouldn't be a diagnosis or treatment plan, it's good that there are lots of things you can do to help and it's good that you have insurance that will pay.
It does suck that you have to rename the diagnosis periodically to get continued insurance coverage, but as Griff said, the school system should take over at some point. Get an IEP as soon as you can -in many places, public preschool is available for kids who need an IEP -start asking now.
I'm sorry you got the diagnosis that you did. It means you now know that you are facing more work at being a parent, and I'm sure that's not something you are thrilled about. But I know you are a good mom, and he's really fortunate that he has you. Like you said, you caught it early and that gives you more options.
I have no insights to add, just that you have always come across as someone who has her head screwed on right. I hope you guys are able to take this in stride and just work with it, and continue to find the joy in life. You'll have more challenges now, but I think you are capable of them.
Feel free to pm Griff.
Absolutely. Make sure you keep this or a similar thread going in case you hit a bump in the road that some dwellar can smooth.
I'm really sorry Clod. I know there's not much I can do, but believe me, I'll be thinking of you.
I hope you guys are able to take this in stride and just work with it, and continue to find the joy in life. You'll have more challenges now, but I think you are capable of them.
I think you'll get the same joy from his progress and growth, maybe even more, even if the steps are smaller.
I'm also thinking that you and Mr Clod, have got to plan and do this together, sharing the work and rewards equally. That mutual support, in a team of equals, is a force multiplier that adds up to the equivalent of three. Add your support here, and there is no way this can beat you... you'll do good. :thumb:
As hard as it is, "having a diagnosis," at least you now know something, and can be as proactive as possible.
Talk to the treatment staff about other funding options and community supports that you can utilize. That 60 visits per diagnosis thing is brilliant.
I think your son is lucky to have you as his Mommy.
Try to keep in mind when the burden seems heavy that your son needs you the most when he acts like it the least.
Your son IS very lucky to have you as a mom.
I don't have any words of wisdom, except to say that what others have said here is (are?) right on.
Same as the others Clod. You identified a problem. You were switched on enough to realise this was not a normal behavioural blip. You love him enough to follow the guidelines, and bridge the gaps in knowledge with good parenting.
You're a great person. Your son was longed for, hard fought for and is still a beautiful human person. Parents get surprised all their lives - some of them really unpleasant surprises. You have something you can work with, and we already know you're prepared to fight against the odds. And hey - normal kids like me end up at home at age 36 battling depression! No loving parent really gets an easy ride.
You have my admiration and (as much as a forum member can) my love. Keep us updated - whether it's pathos, whinging, or downright slap the desk humour, I for one will eat it up.
Clod, I have a very good friend who has an Aspy child who is now about 8 or so. If you would like someone personal to talk with and commo with, who may have gone through some of what you are going through, please let me know and I will hook you up so you can talk directly to another mother.
Drop me a pm if you want the contact info, in case I don't check back here soon.
I was in the middle of reading this thread when I was interrupted. Clod, you are an awesome person and parent. You are wickedly intelligent, grounded, balanced...I admire you for so many reasons. This little boy picked you to be his mom and he knows you can handle it (even though you will need some help. We all need help) I wish I could convey what I mean more clearly---at times of great emotion, I come off sounding like a loon. Anyway---what I mean is this: I KNOW you can do this. Ask for help. He's lucky to have you.
Adding my good wishes to the pile, Clod. It may not seem like it at the moment, but identifying the problem is three-quarters of the solution.
Hugs to you and your family.
I know everyone had so many good words of wisdom.
I like these responses just because they are natural ways to cultivate child development.
As far as diagnosis, experts and public schools they need to get back to the basics. These kids were just fine in school 50 years ago before diagnosis and boxing kids in became some kind of a crusade.
That might seem strange for a special education provider to say but I do believe that kids with normal/high intelligence should just be let free a little more. I hope the current trends in school change alot for the better.
having read all the other responses,
Normal is over rated, maybe you could get a diagnosis of some such, many of us could. I played with him, he seemed OK, he put his toys back in place when I moved them, but he didn't have a fit about it, we built some block towers too.
Cabin fever. It sounds like he's bursting at the seams and needs to get out and do stuff , with other kids. Anybody who knows our kids schedules, swimming, soccer, gymnastics, hockey etc. etc.
At that age I think there was a baby tumbling thing, and swimming of course.
Yeah, I signed him up for one of those baby tumbling classes, at The Little Gym. He enjoys it, but its primary benefit for him has been learning to take turns, stop playing with one item and move onto the next even if he's not ready, etc. It's been good, but for the money I don't think I'll do it again.
Learning how to take turns and knowing when to stop an activity even when not ready is so valuable. Why not work on those skills now because the public schools will so be ready to. I would, if possible go mainstream classroom if possible espicially if he is a bright kid and it seems he is.
the difference between the inflatable place and a gym class is that in the class he sees the same kids again and again and gets to make friends. There's no social aspect to the bouncy place, other than fleeting interactions with strangers. Try to find a playgroup of some sort. if you go regularly to the bouncy place at the same time, you might well find yourself hooking up with other moms with kids the same age and your kids might even play nicely together. Sometimes. This is how our playgroup got started and we (moms)still meet weekly, even though the youngest is now in second grade.
There kind of balance in parenting is so important for development. There should be more of it. More people who see the potential of a kid and let them develop in the most natural way possible. I wish I had been this kind of parent or had someone like them around because there is so much wisdom in what they say. I think. Perhaps a new trend in diagnosis and treating in coming.
Anyway, clod. You will be fine and your son too. Just be happy and play alot and make play a learning experience :)
I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed.
Autism/Aspergers have tons of papers. This is the most recent review I could find. It's not available directly via ejournal, but I am requesting it and once I have it, I'll send you (and anyone else who PM's me) a copy. If you see any other articles you want, just let me know.
Good luck, and please let me know if there is
anything I can do.
Recent advances in autism spectrum disorders.
Charles JM, Carpenter LA, Jenner W, Nicholas JS.
Department of Pediatrics, Medical University of South Carolina, Charleston 29425-5670, USA. [email]charlesj@musc.edu[/email]
OBJECTIVE: This review article provides an overview of the most recent developments in the literature regarding autism spectrum disorders including epidemiology, etiology, assessment, and management/treatment.
METHOD: A review of the recent literature was conducted using Medline and the search term "Autism Spectrum Disorders."
RESULTS: Autism Spectrum Disorders are more common than previously believed (1 in 166), and etiology appears to be multifaceted including both heritable and non-heritable factors. State of the art treatment includes comprehensive medical monitoring as well as behavioral intervention.
CONCLUSIONS: Current and anticipated federal funding, policy changes, and large scale research projects provide promise for increasing knowledge about Autism Spectrum Disorders.
This thread is one of the many reasons this place is amazing.
Correction - the people posting here are some of the reasons this place is amazing.
Since it got bumped, I suppose I should offer an update on things: The hyperactivity is much more under control, now that we have a better idea of what sets him off and what helps him feel more grounded. Turns out trips to the grocery store are weirdly therapeutic because he gets to ride standing up in the basket, and getting that swerving/swinging motion is supposed to be really calming (and the results are definitely observable on our end.) During the especially hellish time period prior to his diagnosis, it just happened that he hadn't managed to go to the store with me in weeks because of a variety of coincidental circumstances. Now I make up excuses to go at least every few days. We eventually had success in making his toys as heavy as possible like we were told to, but there were some failures at first. Let it be known that rice plus white glue will lead to mold. We had to throw out that collection of duplo blocks, but I filled the replacements with steel shot and glue instead, and those have worked beautifully. Also, no matter how confident you are that the thick plastic dinosaur will be water-tight after you seal it with hot glue, you will be wrong. Better to just fill it with steel shot from the beginning. Each time we returned a newly-weighted toy to him, you could tell he was exceedingly pleased with it. The downside is all this hefting weights will only make him stronger when he decides it's time for a flailing meltdown.
I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed.
Part of the reason is it's not an accepted disorder in the DSM-IV. The symptoms and treatments have been well-known for a long time, but they almost always present alongside the autism spectrum disorders, so it hasn't been given its own separate diagnosis. And indeed, he does have an autism spectrum diagnosis as well, but as I mentioned earlier, multiple diagnoses are good for insurance purposes, so for now we're acting like we don't know it's part of a larger problem. :)
As for the other symptoms, not a whole lot of progress can really be expected right away. We are pushing harder on making him say more complete phrases even if we know what he wants, and we're supposed to discourage the echolalia as much as we can. That one is hard for me though, because I am certain that part of the reason he's as social as he is is we have happily encouraged his communication up to this point, even though it's not a typical conversation style. The compromise is that rather than ignoring it, I try to instead act as if it
is a normal conversation. "Oh yes, that's from TV show X. Do you like that show? It is a good show." I can tell he's not happy with this change though, and I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.
Why don't you just get a grocery cart for home? They're free!
I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.
You are such a good mom!
I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.
Clobble you are so insanely awesome.
Why don't you just get a grocery cart for home? They're free!
really barking with laughter.
you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds...... but you could start small:
You are such a good mom!
ditto that!
I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.
ditto that!
you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds......
Is he traveling to New York
for the big race? Or is there a local equivalent?
there's a local equivalent. I think he may have moved on from that, though -he's currently developing very expensive lightweight electric bikes.
Today has been pretty sucky. But that might actually be a good thing.
As with any medical condition that's not very well understood, there are a ton of "alternative therapies" with no medical studies to back them up. Some actually have medical studies to disprove them, and some are just really hard to test. One of the most popular alternative therapies is the Gluten-free, Casein-Free diet, which falls into the latter category: it's really hard to have a double-blind study, because parents can't pretend they don't know what their kid is eating from day to day, and usually the only way to quantify symptoms is by the parents' reports. There have been two major studies, but one showed a correlated reduction in autism symptoms, while the other showed no correlation. Anecdotal evidence on the web seems to indicate in general that it either works astoundingly great, or doesn't work at all--which is reasonable; there are so many forms of spectrum disorders it's not hard to believe there could be different causes for different types. At any rate, it's widely conceded that the diet can't hurt you, so doctors will tell you to try it if you feel like it.
ANYWAY. The theory behind it is that the kid is unable to properly digest gluten (wheat), casein (milk), or both, and the result of partial-digestion is a peptide which, if it were to get out of the intestines, through the bloodstream, and into the brain, would function exactly like an opioid: i.e., autistic kids are actually high as a kite on narcotics 24 hours a day. The thing that struck me when reading the vast amounts of glowing anecdotal evidence ("my kid started the GFCF diet and suddenly began talking for the first time three days later, was potty-trained a week later, was diagnosed as no longer having autism six months later, etc.") was that, just like all opioids, these peptides would be highly addictive--and one of the hallmarks of children who had responded well to the diet was that they utterly craved the offending foods.
Minifob's diet is maybe as much as 50% dairy. He wants 3-4 different kinds of dairy at every meal, and it's always had to be the bargaining element: 'you can only have more cheese after you eat some more X.' I can't think of a single dairy product he has ever rejected.
So we went cold turkey on Saturday. Well, almost--milk hides in freaking everything, and in the process of figuring out which baked goods he can't have (answer: most of them) I forgot to realize that, duh, M&Ms are milk chocolate, and he gets those as a reward for having dry diapers. So he actually had one each on Saturday and Sunday before Mr. Clod pointed out (politely) that I'm retarded.
Sunday morning, 24 hours into (almost) detox, he actually said to me, "No ma'am, no banana," which is significant. No ma'am is what I say to his sister, and for him to A.) realize it could apply to someone other than her, and B.) choose to insert this extra phrase when he's already quite familiar with just saying "no banana" is a big deal. But maybe he was gearing up to saying it anyway though, he has definitely been using more words since going to therapy...
Sunday night he started getting edgy, and today he's been a nutball. In theory, that's actually another good sign, because there's supposed to be a withdrawal period. He hasn't gotten the shakes or anything :), but he does lay on the floor and ferociously scream when I tell him (for the hundredth time) that he can't have any cheese. And his general twitchiness notwithstanding, I'm pretty sure he said this morning, "This is a red spoon." He always identifies his spoon color, but the words "this is a" have never come out of his mouth before.
So. In another couple of days there should either be much more visible progress, or I'll be forced to admit that I've been seeing what I wanted to see for the last two days. I'll tell you this: while it would obviously be the greatest thing in the world to have discovered a magical switch that will suddenly clear his brain and give him an unobstructed path back to normalcy, a totally dairy-free diet is freaking hard to maintain. We basically can't take him to any restaurants if we're going to stick with this. On the other hand, it's not as hard as a dairy and gluten-free diet, so I'll be grateful if we don't have to go the extra mile and remove the second half from his diet as well.
Also: cheese and yogurt "substitutes" are the nastiest things on the planet. Not only did Minifob not want to eat them, I couldn't even stand the smell of them in the kitchen myself.
Good luck Clod. How are his bowel movements generally? We had several kids on that diet when I was working with this population. I don't have any info on it though both because we were kept blind, since we were taking data, and possibly because Dr. Romancyck has a great deal of ego caught up in the B Mod thing so even if one of the Grad students wanted to run such a study it might not see the light of day. We had one kid that I wished they'd tried it on since his bms were horrible and to me it seemed like he had digestive pain.
Clod, I love your approach. You look for evidence-based therapy & try out the low-risk possibilities. Best of luck keeping him away from the moo-heroin.
Is there any information on which dairy peptide might be responsible?
Is there any information on which dairy peptide might be responsible?
I don't know. I know it's the casein I'm supposed to avoid, which is a pain in the ass because even things marked "non-dairy" are actually only missing the lactose, they still have casein in them.
Hi bowel movements have been very soft his whole life. The number of truly solid bowel movements he's ever had is less than ten total.
Sometimes small changes effect great results. The human mind and body aren't quite as well understood as the medical world would like you to believe.
My story is just anecdotal but might lend you some hope of finding a solution, even if this diet doesn't pan out. Super short, condensed version: I was hugely overweight and so mentally ill that I'd pretty much been written off. I changed my diet and started getting a little bit of exercise. Within 6 months I was off of the majority of the meds I had been on and was about to finish high school (something my parents and doctors thought I would be incapable of). Now, 7-8 years later I am in excellent physical and mental shape, have not only finished undergrad but also have a graduate degree and have done pretty well in the workplace.
So anyway, a little conscious change and experimentation (your's at this point) coupled with a human's natural drive to live (your son's) can do wonders.
I remember watching Jenny McCarthy quite awhile ago speaking on Larry King Live about how a change in diet helped her autistic son. She had just published a book about it.
Louder Than Words is the title. I never got a chance to read the book, but thought that it was very interesting.
One of the things that struck deep with me was after he was 'cured' she said he would say to her "remember when I was shy??" He was aware of the differences in his behavior, but couldn't control it.
Many of the positive GFCF anecdotes mentioned that their child could now tell immediately if they accidentally ate the wrong food. One boy took a bite of the wrong cookie, and moments later told his mother, "The bad person is inside of me again."
Minifob bawled today when I told him again that he couldn't have any yogurt. Not a tantrum, he just sobbed. It broke my heart.
Clod, you are an awesome mom. I had a long response written last night and then we had a meltdown and it got lost in the fallout. I think the hardest part is almost over. "They" say the more foods you introduce your child to at a young age, the wider their tastes will be later.
There are definite food issues here in this house and I am having a hard time getting my wife to accept that. She keeps thinking the inch's perennial congestion is due to the need to vacuum.
more later gotta go
I fought for YEARS with doctors and teachers/special ed admins about my son. My sister is a NeuroPsychologist (when my son was little she hadn't gotten her degree yet). She told me immediately that he was displaying Autistic symptoms. He was 3. Three Pediatricians REFUSED to test him before age 5, and blamed me for his behavior.
This is an example of behavior at 3:
It is 11:45am.
Son: Mom. Mom. Mom. Momomomom. MoooOoooom!
Me: What?
Son: (slurring, muffled speech due to multiple ear infections) Lunch?
Me: Yes, I'll make you lunch at twelve o'clock, after Blues Clues.
Son: Bnoo's Cnoos? (breaking into full voice singing) WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
Me: Yes, we are. Go watch Blue.
Son: (runs [on his tip toes] away) HE DA MAIL, IT NEBA FAIL...
Me: (looks at my watch. 11:47.)
Son: (runs back up to me) Mom. Mom. MooooooooM Mommy. Mom. Mommmma. Mom!! MOMOMOMOMOMOMOOM!
Me: What?
Son: I some lunch.
Me: Yes, after Blue's Clues. At twelve.
Son: Twelb?
Me: Yes, on the clock, one two dotdot oh oh.
Son: oh oh?
Me: Yes, after Blue's Clues. oh oh.
Son: Benut Bunner?
Me: Yes, I'll make Peanut Butter and Jelly.
Son: oh oh?
Me: Yes, when Blue's Clues is over. A few minutes.
Son: Kay. WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
Me: *sigh*
And the way he told me he wanted to watch Star Trek: The Next Generation was to sing the intro theme song.
We moved back to the states and got him into the Pre-K program, with the label of "Emotional Disturbance". Still no doc would tell us what we already knew: Autism. Even his teachers were telling me: this kid is Autistic. Echolalia, aversion to change, extreme difficulty transitioning to new tasks, tactile obsession (I made a nylon shirt for myself while I was pregnant, and it was his shirt. He did NOTHING without his shirt. Full on meltdown without the shirt. He would do this thing...put the shirt between his thumb and index finger and rub it...to comfort himself. Til he was 6.
Brushing teeth was asking for fingers to be bit off. I'm not kidding. He could not *tolerate* the feel of the toothbrush rubbing against his teeth.
By 10, after 6 years of occupational therapy, physical therapy, speech therapy and weekly behavior therapy, he was still in special ed, but his teachers were saying that he was too smart to be in special ed, but when trying to transition into regular classes, his behavior was such that it was completly disrupting all the other students.
At 13, we finally got a doctor to diagnose him as High Functioning Austism *and* Asperger's. There was a pilot program starting in our county led by NC-Chapel Hill called TEACCH, and they were starting a program for kids like mine: HFA/Aspies. Full regular classroom integration but each student has a "shadow" in the class with them, making sure they stay on task, don't run out of the room (which mine was known for), writing down homework, etc. Then one of the class periods was HFA class, where they help with the homework, and teach social skills, emotion identification, etc. We waited a year on the waiting list, and he got in the program in the middle of 8th grade. Only one school (elem, middle, high) in the county has an HFA class, so he gets to ride a special (not short) bus, picks up at the driveway, and gets met at the bus by his shadow.
Now at 16 (he just turned last week, I'm surprised I've stayed as sane as I have this long), He's a Freshman, and what used to be Cs, Ds, and Fs (not because he didn't know the material, but because he couldn't focus on the tests or write down his thoughts) he's getting A's and B's consistently.
He's still obviously "off" in social situations (he doesn't know what is appropraite to say and around whom you shouldn't say it) and he's not shy at all. He still does the "martial arts dance" at the end of the driveway waiting for the bus, and sings all the time. Even under threat of "I will send you to your room if you don't stop humming" (he HATES being by himself) he will still do it (because he doesn't realize he's doing it most of the time).
He's trying to find out what his humor is. Unfortunately, he's chosen to emulate mine, but doesn't really understand puns and non-literal ideas, so it's not going so well.
He's 6'2", and pushing 170, and shows no signs of stopping soon. I just bought him a pair of size 13 shoes. He's eating me out of house and hearth.
And although I'm terribly worried about whether he's ever going to be able to live on his own, or how he's going to function at a job (which he's expressed interest in getting), and about how much he's going to get hurt becasue he's SO gullible and a smart (mean) girl will be able to totally roll him...
But I can't imagine him any other way.
All this whole long thing was basically to say: I know what having a special needs kid is like...and at times it feels like you're going to tear both you and your kid's hair out. You'll cry and laugh and try new things and stay up on the research and fight and kick every step of the way. Sometimes you'll win, and sometimes you give up, for a little while (that's usually the crying part). Then you take a deep breath and start over.
I'm here if you need me, I have a great ear and a huge shoulder.
Hang in there, sweetie!
Gee, a treatment plan that doesn't involve any meds. No wonder the doctors never heard of it.
Good work, CF.
Clod---you are a wonderful mother. I admire you.
Ugh. He's been weird. Some good bits, some worse-than-usual bits. Then yesterday he swung from great to terrible immediately after eating lunch (a sandwich on wheat bread.) I started to wonder, and realized I would never really be able to stop wondering... so fuck it. This diet is so hard already, we might as well just go full GFCF. Rip the bandaid off.
So far he's eaten a whole lot of refried beans on corn tostadas, and several varieties of fruit. Turned down the fake-Cheerios in rice milk after one bite, wouldn't even take a bite of the peanut butter sandwich made with gluten-free bread, which I baked my damn self after he went to bed last night. Oh, and Mr. Clod complained about the smell of the bread--not that it was bad, mind you, just "weird." He's since instant messaged me to let me know he can somehow still smell it at work and he thinks he's going insane. Yeah, me too, buddy.
But in the bad-news-that's-good-news department, Minifob was nice and grumpy about his new diet for the Early Childhood Intervention evaluation today, so he qualifies for "services." They want to do a bunch of stuff with pictures, some of which I'm optimistic about, like a posterboard with pictures of all the different foods he's allowed to eat. That will help me as much as him. Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?
Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?
You're going to be doing a
lot of cooking-from-scratch.
Look into foods from Asia -- many cuisines are riced-based. Just watch out for the sauces (soy sauce is notorious for having wheat in it!)
If you're interested, I can hook you up with some non-wheat containing fairly easy recipes from south India. PM me...
wow. all this is making me count my lucky stars, and wishing I had better words, better comfort, better ideas for you.
I'm with you there Cloud. I've wanted to say something, but really just don't have any of the right words. I don't really have any decent advice for Clod and co, but I suspect they're getting plenty anyway.
I will say that gluten free is a lot easier now than it was even just 5 years ago though. A couple of my cousins have GF diets and they don't do too badly.
My best suggestion is to try health food and organic stores. You'll get plenty of GF alternatives there.
This weekend I was browsing the new non-fiction in our local library and came across this book written by a couple of experts in the field.
When Your Child has Aspergers. I read it this weekend, and it seems to be a great resource, especially for friends and family. Concise and easy to understand.
Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?
I feel your pain, having had to eliminate dairy (casein and whey, not just lactose) from our diets when Ripley was born. And Pie is right on, you have to cook from scratch, eat simple/whole foods, and asian foods. It takes a while to get used to (we ate carrot sticks and lentils constantly until we got the hang of things) but then becomes normal. You'll all get healthier too.
I know it doesn't help, but in the spirit of sharing, Mum & I are on a 90% cooking-from-scratch diet at the moment. I love it. It's so much quicker and easier than I ever remember cooking being. In my case probably because I'm not just cooking for myself, and it is my major contribution to the household (Mum & Dad both cook, but they are both difficult to be in the kitchen with when they do).
Of course any leftovers get eaten by three people and none of us work so I know it doesn't compare. But my parents do hate the smell of me boiling up beans and pulses. My Mum has walked into the kitchen numerous times during this process with the patented look of disgust on her face (the mouth turned down one, you know). And Dad chokes & coughs when I am frying onions and garlic. But when it comes to the meal, they enjoy the taste and compliment the food.
All I can say is that side of things does get easier and more pleasurable, and does take less time once it's part of an established routine. And even grim smells become accepted after a while.
Just keep reading what you can get your hands on and keep using Mom-sense. You've been wonderful so far.
So, it turns out "ripping the bandaid off" is, ah, kind of painful. Surprise, surprise. Wheat was just too hard--and we weren't seeing any noticeable improvements like we had with dairy, so we gave it back to him.
But the dairy improvements? Hoo boy.
After his very first foray into sentences with "This is a red spoon" (at 48 hours off dairy,) he has continued to spit out new sentence constructions every single day. In the last two weeks he's used words like now, these, it's, hey, and I for the first time in his life. Overall, we've just been having stellar days around here. He is calmer (not calm, but calmer) and happier than he's ever been. His therapist marveled at his sudden shift in language and has said that by the time we finally get an appointment with the pediatric neurologist (not until April), he may not even qualify for the PDD diagnosis anymore. He still has a lot of the symptoms, most noticeably the echolalia and strict adherence to routine, but the change from my perspective is night and day. He has suddenly started engaging in pretend-play with his toys, is voluntarily wearing long-sleeve shirts on a regular basis, and last night he sat in his chair in a noisy restaurant for upwards of an hour while we visited with a friend from out of town. (We had come in two cars because it hadn't even been a question in our minds that I would need to leave the restaurant with him at some point. The baby was fussier than he was. It was mind-blowing.)
And as a confirmation that it's not coincidental, he did have a tiny amount of dairy last Tuesday, in the form of a white-chocolate-chip cookie. Wednesday, Thursday, and Friday he was terrible, the only bad days he's had since we cleared his system.
As I told lookout in a PM, I am officially a convert. Who knows how many unexplained diseases out there are really symptoms of food sensitivities? The results have been so dramatic, it's all I can do not to accost random people on the street and tell them about it. To be fair, I am still living in a certain state of denial: we were already feeding the kids separately because of Mr. Clod's work schedule, so he and I have not altered our diets at all, though we could probably stand to. But I'm hoping that will come naturally as the kids get older and I lose my motivation for dealing with multiple meals.
That sounds like great progress Clod. I'll bet the relief you're feeling is off the charts atm huh?
I'm really happy for all of you. You're a great mum. Keep up the good work. :)
Wow thats really good to hear. Amazing too.
Fab. U. Lous.
That is awesome news! I am so happy for the whole Fobble family.
That's excellent news, Clod. I am happy for you that you found a possible treatment.
Excellent news, Fob. Amazing progress.
I am so happy you've had a breakthrough Clod.
All I will say (and this may not well be welcome) is continue to keep a chart of food/ behaviour. It will help whether the current diagnosis is correct (as it seems to be) or not. In which case it will be invaluable
At the very least it might identify what he can and can't tolerate in terms of percentage/ amount/ origin. At some point your baby boy will be a teenager and an adult. The better records you keep now - and the food he can tolerate may change - the better he will be equipped for the future.
It's really remarkable that a diet change had such a profound impact. Simply amazing.
So glad to hear that the diet change is working for MiniClod. You're a stellar mom, Clodfobble... keep up the great work! I'm cheering for you, and your whole family :)
I'm kind of bummed these days. If you buy into the seven stages of grief, depression is the last step before a healthy acceptance, so that's good, right?
Of course being in the depression stage means I've finally exited the denial stage. He had his initial screening with the school district for the PPCD (Preschool Program for Children with Disabilities) class, which basically functioned as yet another opportunity for an independent group of evaluators to tell me, "Oh yes, he has problems." There might, just might have been a small part of me that was still quietly insisting that we were still in red-flag territory, that he'd just have a little speech therapy and everything would turn out okay. I can neither confirm nor deny the existence of my denial. At any rate, the only question now is precisely which class would be best suited for him, so we go back for the big multi-hour evaluation in April. End of denial? Check. And either way, all these classes follow the school district's schedule, so we're still completely on our own for the summer. Depression setting in? Check.
Oh yeah, the summer. That time when my stepchildren descend upon my house for 6 weeks straight, throwing both us and them into chaos as everyone's established routines are chucked out the window. We usually send them to a day camp for some number of weeks, but the fact is I am available at home--so the question always becomes, how much money is my sanity worth? And that's just my annual level of stress, this year we get to add in new difficulties like, what the hell would I do with them while Minifob is in therapy? Can I really leave them out in the waiting room for an hour? But can I justify the cost of sending them to camp for a whole week just to avoid that dilemma?
Oh, and to top it off, my Early Childhood Intervention visitor (I refuse to call her a therapist because she does nothing remotely like therapy with him, she barely even interacts with him,) accidentally made me feel like crap. She asked if he was still on "the diet," meaning the full GFCF diet generally recommended for autistic kids. I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.
I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.
http://www.ehow.com/how_2307201_make-gluten-free-waffles.html
that's not a rick roll
clobble....you have to try the gluten free thing. you know it. thats why it makes you feel bad.
Im sorry...im not trying to make you feel bad....but cmon.
:comfort:
I am sorry you are feeling down, Clod. I don't truly know what it is to cope with this kind of situation, but I can imagine it would be something I would not easily cope with. You are doing magnificent, however. Your dedication and strength in this difficult time are showing through even just in your text. Don't give up. Your little boy is a lucky, lucky kid, you know. And you will get through this. Maybe it feels like your patience is beyond repair or that you just can't take another day. If so, remember that every day...every moment is fresh. Take a few minutes every day to just breathe. Take some time for you...do something special for yourself, if you can.
Feel free to use PM if you need someone to talk to.
I can relate to the step kids coming for the summer. We also have my husband's children in the summers and it can be taxing for everyone involved, trying to adjust to the differences in households, trying to recalibrate everyone's understanding of how we do things in our house, etc. And I am available to watch the kids, yet, it is usually a stressful ordeal. Last year I put together a weekly schedule which included themes and activities. I posted these schedules on the wall, so the kids knew what we were going to be doing on any given day. It seemed to help diffuse some of the chaos.
ehow.com/how_2307201_make-gluten-free-waffles
Making the waffles is the easy part.
Trying to get them back in the SPONGE BOB SQUARE PANTS MEETS SPIDERMAN WITH WALL-E AND TICKETS TO DISNEY!! waffle box without miniFob seeing you is the hard part. :-)
Clod - don't let the so-called support people get you down. You know what's best for your son and you know what your limits are. Do your best and ignore the know-it-alls. Your son needs you more than all those bozos put together and he's a lucky kid to have you taking care of all this.
I know this has to be back-breakingly hard - I just hope you and mini-Fob are able to steal a couple moments during the day that can only happen between a mother and her son. Those times can make up for a lot.
http://www.ehow.com/how_2307201_make...e-waffles.html
I currently have two different kinds of gluten-free waffles, one of which was homemade, and two additional kinds of just-dairy-free waffles in the house. He will eat none of them.
What I have available
next is yet another kind of gluten-free baking mix and some yellow food coloring, because if they're bright freaking yellow that may help appease him--but I can't do anything about the fact that the only kind of home waffle iron I could find was either square, or hugely round like a Belgian waffle, and neither of those are the "right" shape.
We did try the gluten-free diet for three days, and I was reduced to tears every single day. I just want proof it's going to be worth it, which is something they can't give me.
It's a lot like the climate change situation.
cant even imagine....sorry if i came off wrong...
we think about you guys a lot....i hope you figure it out clobble
Oh Fob...... :(:(:(
You and yours are always welcome to come up to Michigan for a cooler week or so in the summer if a reasonably cheap (althoug distant) getaway would help
Can you do the gluten-free diet by not doing subsitute foods at all to start? using potatos in various forms for the "stodge" of the meal instead of bread, pasta etc? Does he like fries?
What does he like to eat?
sorry if i came off wrong...
No worries, I wasn't ranting at you. It's just general frustration. Today was actually really good--he started off the morning deciding he wanted cheerios instead of a waffle, so we got to avoid that whole debacle. Someday he'll forget the concept of a yellow waffle... someday.
Can you do the gluten-free diet by not doing subsitute foods at all to start? using potatos in various forms for the "stodge" of the meal instead of bread, pasta etc? Does he like fries?
What does he like to eat?
He's been steadily scaling back since he turned two. Mac & cheese and pizza are gone without dairy... burgers and sandwiches are still okay in general, but most commercial bread products have dairy in them so we have to check... he'll do dairy-free chicken nuggets, spaghetti, and tostadas with refried beans. And that's basically it. Of those, only the tostadas with beans survive going gluten-free. (He already rejected the GF chicken nuggets and GF pasta, multiple times.) You're right in general, most of the people who have done the diet say don't even bother with the substitutes, just find one thing they can eat, and let them have it at every meal for however many months it takes for them to forget what all the good stuff tastes like.
My kids like these
mac and chreese products. The penne is brown rice pasta.
Can you do goat cheese?
Supposedly not, nothing with casein. The one substitute he has gotten used to is rice milk, so we're good for cereal at least. I'll try the mac & chreese things, thanks for the link.
Good luck Clod - I have nothing to offer other than well wishes. :(
My kids like these mac and chreese products. The penne is brown rice pasta.
Can you do goat cheese?
What you need is that packaged up with kiddie TV charaters on the front. Those guys in the blue jumpsuits that he was for Halloween. Then leave it lying around until he's begging for movers' mac (or whatever they were called....)
My toddler got high this weekend.
We had a miscommunication with one of his Sunday School teachers--they rotate every two weeks, and while we'd had a long group email thread with all of them about his new diet, this particular one doesn't ever check her email and apparently was never following along at all. So this Sunday was her day, and she gave him cheddar goldfish crackers for snack. Two whole cups full, because of course after the first half-cup he demanded another one, and another, and after they finally cut him off at four servings he collapsed to the floor in a junkie rage... I knew as soon as I came to pick him up that something was wrong, because he was over in the corner spinning a toy car two inches from his face, and he hasn't done that in weeks.
Anyway, it's been sorted out with that teacher now, and she was deeply apologetic when she found out what she'd inadvertently done. But in the meantime I've got my old nutter back for at least 3-4 days until it clears his system. I had to shut off the water to the kitchen sink at the valve, because he couldn't be persuaded away from the faucets and I was terrified he'd discover the little black water gun handle (who the hell uses that thing anyway? What a stupid feature.) Now he's finally moved on to watching Cars, just like the old days:
[youtube]10XofXCoctw[/youtube]
Ah, hindsight. I'm eagerly awaiting the time when it becomes less bitter, and more funny.
BUT! The silver lining is this event finally convinced Mr. Clod that the dairy thing is real. Before, he was just sort of taking my word for it, in the way that husbands don't question their wives when it comes to the children. But this, he saw with his own eyes. So now he's enthusiastically on board when I start questioning things like whether Minifob's skin lotion has dairy in it (it fucking DOES) instead of just nodding politely.
And in other good news, I think Subsitute Waffle v. 5.0 (that's the new homemade baking mix with yellow food coloring added) has been deemed acceptable. We'll see if he changes his mind in the next few days, but he's eaten three of them so far. I think we finally have a dairy-free waffle solution, and just as a bonus it happens to be gluten-free too.
Clod, you are wonderful.
As is your boy.
I know people here think I hate the kinder, but if you ever make it over here, you are so welcome.
And saying all that, can I just congratulate you for staying sane & not killing him?
Said with love.
And saying all that, can I just congratulate you for staying sane & not killing him?
Said with love.
As a father of three - thats exactly how I feel. OMG - your patience absolutely amazes me - you deserve a crown and prizes and and and stuff.
Hopefully the prize will be hugs and smiles from Minifob. You are an amazingly strong woman Clod - I deal with the "usual" eccentricities with Princess of the Ryche and have to take the occasional deep breath. Can't imagine your level of pure joy when you hear new words or see a pattern broken.
(Re the waffle iron, can you buy the normal sized square one and cut them down to circles, or is that too much additional work? Or do you think he'd notice? Or is he over it?)
oh, clod, you -- you're just incredible to be doing all this.
wish I could send you a bunch :flower: :flower: :flower: :flower: :flower:
Hang in there CF -here's proof positive that the diet effort is worth it. It will get easier.
Motherfuckinggoddamncumslutbitchasswhores...
There's a new food Minifob can't have. By now we know the signs--he eagerly demanded the new food several meals in a row, and lay on the floor screaming and begging for more when I told him we would be having his (old) favorite food instead. This was right about the time that his behavior, which had been steadily recovering since Sunday, took another plunge.
The problem? This food--little spicy tortilla strips that are supposed to go on salads, but I thought they would function nicely as a chip for him too--is supposedly gluten-free and dairy-free. There's a slight chance that the unnamed "spices" on the ingredient list contains something like whey powder or sodium caseinate, and I've emailed the company to ask, but they would be breaking food labeling rules if that's the case. It seems more likely to me that he actually has a problem with something else in the list, and the obvious culprit would be everyone's favorite neuroexciter, MSG. (Did you know MSG directly affects the brain? That's why it tastes so good when it doesn't actually taste like much of anything.) Most sources of MSG are already eliminated by the GFCF diet anyway, but one major exception is canned fruit. There's still plenty of brands out there with no artificial sweeteners, including the ones we've been serving him all along, but I was really hoping I could find just one thing that I could definitively say it was always safe for him to eat without having to check the label every time.
One thing he likes, anyway. It doesn't do me much good to say he can always have raw broccoli.
Shit Clod, are you going to have to grow and can your own food? :smack:
Hang tough, you don't seem to be catching a lot of breaks, and your living it every damn day. But from a spectator's point of view, I'd say you've learned so much, and made so much progress, in just 4 months, it's a tribute to your dedication. Baby steps perhaps, but progress none the less. :notworthy
MSG is the evil.
Hang in there, Clod.
From where I'm sitting, it's just amazing everything you are doing Clod. I'm really impressed with how dedicated you are, and patient too.
Your kid isn't going to thank you, because kids don't do that, but you are awesome and deserve recognition for everything you are doing. I have nothing of any value or insight to add to any of this discussion, so I haven't been posting much in this thread, but you're my hero.
From where I'm sitting, it's just amazing everything you are doing Clod. I'm really impressed with how dedicated you are, and patient too.
Your kid isn't going to thank you, because kids don't do that, but you are awesome and deserve recognition for everything you are doing. I have nothing of any value or insight to add to any of this discussion, so I haven't been posting much in this thread, but you're my hero.
Historian
John Hope Franklin died yesterday at age 94. I heard on NPR that he had been awarded the Presidential Medal of Freedom from President Bill Clinton. They said it was the highest civilian award you can receive.
You know, like, every mother deserves this award. But especially the great ones like Clod here. And Pooka of course.
Hey Clod - Does it make you cry sometimes? Cuz if it does, I just wanted to tell you THAT'S OKAY. You're allowed to get frustrated and angry and sad. You are amazing.
Hey Clod - Does it make you cry sometimes?
As recently as last night. Doing good so far today though. I should get one of those OSHA signs, "_____ TEAR-FREE DAYS ON THIS JOB SITE." :) I just got an email back from the manufacturer of his lotion letting me know that the container I have is pretty old, and newer versions of the product don't actually have dairy in them anymore. So that's nice.
Hey Clod - Does it make you cry sometimes? Cuz if it does, I just wanted to tell you THAT'S OKAY. You're allowed to get frustrated and angry and sad. You are amazing.
What she says. and hugs from across the pond. You RAWCK!
(that's a good thing, 'kay?)
Hey Fob, see if you can get some sympathy/blackmail samples of the new product out of them...... ;)
What a sucky time you're going through. Have you gotten a massage recently? If not, I heartily recommend it.
The older one, I mean. The next time I'm at the pediatrician's office (that would be in January for his little sister's 9-month checkup,) I'm going to ask her at what age it becomes reasonable to examine for hyperactivity and obsessive-compulsive behavior. I mean believe me, I understand that two-year-olds are typically a pain in the ass, and I honestly feel that I am above-average when it comes to being patient with him. But let's consider a few examples:
--He rejects the concept of brushing his teeth, and we have to physically restrain him every single night to get it done. At no point has he shown any acceptance that this is going to happen, despite complete consistency on our part.
--He compulsively chants snippets of songs and catchphrases at me all day long, and will say his half again and again nonstop until I repeat what he has said to me, or whatever complementary phrase I'm supposed to say. One typical progression goes (exactly) like this:
Him: "ABC Song."
Me: "A, B, C, D--"
Him: "Big A"
Me: "Big A, Little A, what begins with A? Aunt Annie's Alligator, A, A, A." [Continue reciting this book until about letter I. If I stop, he prompts with the next letter.]
Him: "ABC Song."
Me: [Alphabet song sung to a different tune, from the show "Choo-Choo Soul."]
Him: "Number song." [More Choo Choo Soul]
Me: "1, 2, 1-2-3--"
Him: "Bullet train."
Me: "If I were a car I'd be a race car, and if I were a--"
Him: "Jump jump."
Me: "Jump, jump, Put your hands in the air, Jump, jump, Wave them everywhere--"
Him: "Jumping jacks!"
Me: Yes, I see that you are doing jumping jacks.
If at any point in these scripts I don't respond, he just keeps chanting his last line over and over and over until I do. I have gone so far as to lock him out of the bedroom to try to break the cycle. 20 minutes later I emerged, and he immediately picked up right where he'd left off.
--His newest thing this winter is he won't wear long sleeves. Even if it's 40 degrees outside. I figure when he gets cold enough he'll put on his jacket, right? So far he's still stubbornly holding out, and his elbows and arms are red and chapped by the end of each day.
--He can't be trusted to walk on his own in any store or parking lot, though he desperately wants to, because the instant his feet touch the ground he bolts. He's not even going anywhere, he's just going. If I try to hold his hand he deadweights to the ground, forcing me to pick him up, at which point the kicking to be let down begins. He has never in his life walked while holding my hand, ever.
--One of his favorite activities is "drawing with crayons." This consists of taking each of the 100+ crayons out of the box and lining them up on the table in front of him next to the big coloring book. He does not actually ever draw in the book, but it has to come out with the crayons all the same. When they are all lined up, he is done. Usually he tries to color-coordinate them as well, pulling all the blue ones out first, etc.
It's been especially bad since the baby was born, but it's hard to tell if that's actually a cause or if it just happens to line up with a difficult age. I'm really hoping we're at the nadir here, and he's going to start improving as he approaches 3. But the glimpses of light at the end of the tunnel are few and far between.
Dude. That's the terrible twos. He should come out of them sometime between 3-4 years old.
Children at that age are damn near unmanageable. You just have to tough it out.
Dude. That's the terrible twos. He should come out of them sometime between 3-4 years old.
Children at that age are damn near unmanageable. You just have to tough it out.
Have you READ the rest of the thread? Seriously?
:headshake
Heh... well, ah,
just in case TGRR is wrong... :rolleyes:
This book has been amazing. It is basically a summation of every single autism-related medical study ever. I read it cover-to-cover in two days. Okay, maybe I skimmed some of the more technical bits, because it does get extremely scientific in some places. But it's laid out well enough for the layperson to understand. It dips into the vaccine debate, including the methodological drawbacks of studies on both sides, but that is just a small section of the book. The most important thing it does is explain which subset of the autistic population seems to respond to which therapy, and why. So now, instead of browsing the internet and finding 50 different treatments and no evidence to back them up except opposing anecdotes that it either dramatically helped a child or had absolutely no effect, I have each one laid out and explained, and can identify myself which ones Minifob might have success with. (The nutritional supplement that counterbalances glutamate in the brain, and has shown success specifically with kids who seem to have problems with MSG? That one's at the top of the grocery list.)
What's more, the author of the book currently practices in--get this--Austin, alongside several other doctors who are convinced of the connection between autism and diet/digestion issues, including Dr. Wakefield. Yes,
that Dr. Wakefield. I've filed an intake form online with their practice, so I guess I'll find out on Monday what kind of a waiting list they have...
Oh, and another thing the book explained: it is the same single enzyme that digests both gluten and casein. Thus, if you have a problem with one (a problem in the opioid sense, that is, not just lactose intolerance or something) you by definition have a problem with the other. Goddamn hippies on the internet could get themselves taken a lot more seriously if they would bother to medically justify their claims, you know?
We are now on day 4 of 100% gluten-free. After two more baking attempts, I found a homemade gluten-free bread mix he will tolerate, if grudgingly. We have not yet had the opportunity to have the "no more Cheerios" battle, so we'll see how that goes eventually. Yesterday's awesome discovery is that he can (and will) eat a normal entree at Chipotle on this diet. I've also come to accept that Minifobette is going to have to be on the diet too, because I can't keep her brother from poaching unsafe foods from her tray or off the floor under her chair. But since we're starting early, she'll never know what she's missing.
Did you hear anything from Dr. Jepson? And how have days 5 and 6 been? I like your attitude with Minifobette - she probably won't figure it out until later in life when you'll be able to keep her food separate from his more feasably. (Don't forget to breathe. You're doing a great job.)
Fob rocks. It just needed to be said again.
This is awesome news!
I may be doing some of this too - my son is showing some ADHD symptoms so we are going to re-examine his diet. Nothing as major as yours though.
What an inspiration!
Did you hear anything from Dr. Jepson?
Things are progressing through emails with the staff, but they are currently scheduling initial phone consults (which do last an hour, so I can at least expect a fair amount of conversation to be had) 4 weeks out. What happens after that depends on how the consult goes.
And how have days 5 and 6 been?
I wish I could find a way to be more ecstatic without sounding ridiculous. The last two days have been
awesome. His behavior has been unbelievable--not even a whine about a single thing, all day today. The last three naps/bedtimes he has just followed me upstairs without a peep when I announced it was time to get ready for bed. And his language usage is through the roof, so much so that the ECI woman who came today told me we'll need to completely rewrite his official program goals the next time she comes, because he's suddenly doing everything we'd been working on. For example, we'd been doing picture therapy to try to get him to consistently identify things by their names instead of sometimes resorting to using the item's color instead, but that's completely irrelevant when he now says to me, "Go downstairs, eat yellow waffle ah jelly. Open the gate, please." At the same time, he is more hyperactive than he has been recently, mostly in the form of running in circles around the house for fun and doing headstands, but he's doing it quietly, and he can be diverted to another task when necessary without freaking out, so he's welcome to run to his heart's content as far as I'm concerned. He's also been lining things up more than he had been, but he doesn't get mad if they get knocked out of place.
We had the Cheerios battle yesterday, and he gave up relatively easily. Still won't eat any of the three cereal options he can have, but he hasn't bothered to ask for Cheerios again, at least. We've also started him on some general vitamin supplements that are supposed to promote intestinal healing. I don't know if they'll do any good, but I've made sure they are harmless in any reasonable dosage, so I don't mind just giving them to him blindly until he can actually get some lab work done, either at the specialty clinic or through his regular pediatrician.
Speaking of his pediatrician, I'm gearing up for a little headbutting with her in a couple weeks. Minifobette is due for her one-year checkup, which is about the time they recommend the MMR vaccine. Most people don't realize that Dr. Wakefield's original study connecting autism and the MMR vaccine was never intended to demonize vaccines, and certainly never intended to become the political touchstone it has. It barely mentioned thimerosol in passing; the main point was that this group of autistic kids had a high incidence of chronic, live measles in their digestive systems, and that measles is known to cause intestinal damage, which is of course the major theory behind all the diet modifications, that these kids have "leaky guts." Getting measles for real would be even more devastating for these kids who are for some reason more susceptible to intestinal damage, so the vaccinations are still in theory a good idea, it's just a question of timing it when their immune systems are strongest, and perhaps not giving them all three diseases (measles, mumps, and rubella) all at once. So anyway, I've special-ordered the three vaccines separately from a pharmacy in Massachussetts, and I'm going to have them give Minifobette just the measles shot at this next checkup, while she's still breastfeeding so my added antibodies will give her the best chance to completely fight it off. They can do the other two at her 15-month checkup; those diseases never affect the gut so they pose no particular risk to her. The office staff were audibly annoyed at having to deal with my questions and my special order, but they complied without a fight, so I imagine the pediatrician isn't going to do much more than maybe roll her eyes when I inform her of my plan.
Please forgive the massive amount of detail, but I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)
I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)
OK guys, we have to be on our best behavior now. Her family is watching!
The information you've posted is really interesting. I have never closely followed the whole MMR/autism thing. The intestinal damage side of it is brand new to me and actually makes a lot of sense. It's like your comment before about how the hippies on the internet would be taken a lot more seriously if they would explain the scientific rational behind their rants.
I'm amazed at what you've learned about diet's connection. Who woulda thunk?
You are doing great!
The intestinal damage side of it is brand new to me and actually makes a lot of sense.
There are literally dozens of diseases that they're beginning to connect to problems with the digestive tract. The specific thing with autism (at least Minifob's brand of it) is that he
also happens to have the inability to digest casein/gluten. A different person could be missing some completely different enzyme, so their hypothetical leaky gut would result in some other protein getting into their bloodstream that is known to cause, say, rheumatoid arthritis, or liver inflammation, or any number of things...
Still in awe and blinded by Clods awesomeness. :notworthy:
In the case of milk protein lactose, it's lack of enzyme lactase that's the problem... so brand Lactaid is just milk with a little lactase added. Maybe the answer is to add the appropriate enzymes?
Clod you're doing your homework and making informed decisions, that makes you immune to eye rolling and the like.
I am so thrilled to hear about the last couple of days! I can only imagine how that makes you feel - Please on the end of a complete sentence? Amazing!!! I am so proud of you for sticking to your guns, doing the research, doing what you know works - You are probably the strongest mommy I have ever heard of - Most would have thrown their hands up and left it to doctors or shrinks at this point. Three cheers for Clod, and for Mini for his progress!!!
just followed me upstairs without a peep when I announced it was time to get ready for bed.
Hell, Mrs Lookout won't even do that. ;)
You're doing great lady.
In the case of milk protein lactose, it's lack of enzyme lactase that's the problem... so brand Lactaid is just milk with a little lactase added. Maybe the answer is to add the appropriate enzymes?
Yes, I have since discovered that you can purchase the appropriate enzyme supplements. But they are expensive, and even the makers of the product tell you not to try to use it as a substitute for the elimination diet. They suggest instead that you do the diet, give your intestines many months to heal, and then slowly begin to reintroduce small amounts of casein/gluten in conjunction with the enzymes, to see if you can tolerate it. It's definitely a possibility for when he's older though, and has the self-control to understand why he's on the diet and why it's important to keep up with it. And maybe they'll be cheaper by then too. :)
Thank you for all of your hard work and congratulations on your breakthroughs with minifob. Way to go supermom!!
Walgreens has a store brand for the lactaid tablets. They're not quite as expensive.
But those are for lactose, not casein.
These are the ones for casein. 1-2 pills per meal equates to anywhere from $22.50 to $45 a month. Not that far off from a prescription copay, sure, but don't forget the insurance deductible, and the occupational therapy copays, and the gluten-free foods which cost three times as much (no shit, $6 for a small loaf of bread, $8 a gallon for rice milk)... plus the fact that you may or may not be able to trick the toddler into taking it with every meal. The most I can guarantee is one dose a day,
sometime during the day.
That doesn't look like it addresses whey proteins either, which I think is the bigger problem.
Fantastic, Fob. You sooo rock. I have more to say about that, but others have said it already so, I'll STFU and grin like an idiot on your behalf :D
$6 for a small loaf of bread
Ouch. Do you have time to make your own? Evidently there's a bread machine now with a
gluten-free cycle. Dunno how good it is.
Clod where are you getting your rice milk? Walmart has Silk and Rice Dream in 1/2 gallon containers in the milk section for less than $3. Silk also comes in single serves, like juice boxes, by the case for like $18.
IMO unsweetened Silk is the closest to cow milk in flavor/texture.
Ouch. Do you have time to make your own? Evidently there's a bread machine now with a gluten-free cycle. Dunno how good it is.
The bake-it-yourself mixes cost about the same, the advantage is they taste better. (That's what I eventually succeeded in getting him to eat, a mix called Bob's Red Mill Homemade Wonderful Bread... I'd say "wonderful" requires a pretty big stretch of the imagination, but it's edible.) If I were to go completely hardcore old-school-grandma-style, I could mix my own flours and buy things like xanthan gum, and then it would be cheaper. But I'm having a hard enough time coming to grips with the fact that I'm going to have to spend 4-6 hours a month baking bread and waffles for the next 16 years of my life. You may recall I don't enjoy cooking, and baking even less so. The things we do for our kids, eh?
Clod where are you getting your rice milk? Walmart has Silk and Rice Dream in 1/2 gallon containers in the milk section for less than $3. Silk also comes in single serves, like juice boxes, by the case for like $18.
IMO unsweetened Silk is the closest to cow milk in flavor/texture.
My grocery store sells Rice Dream quarts for $1.99, no half-gallons. At this point he's still refusing all cereals (that aren't Cheerios) anyway, so smaller packages means less spoilage until he gets back into the groove. On my to-do list is to go check out the local Costco; a dietician friend of my mom's said they've actually got a really impressive selection of special-diet foods. They'll probably have it cheaper.
Back when my wife was a vegetarian, we let my Sam's card lapse and signed up for Costco because of much healthier foods available.
But I'm having a hard enough time coming to grips with the fact that I'm going to have to spend 4-6 hours a month baking bread and waffles for the next 16 years of my life. You may recall I don't enjoy cooking, and baking even less so. The things we do for our kids, eh?
OK here's the plan: Fobette being ready for preschool will co-incide with the beginning of the economic recovery, and those first green shoots will be heralded by companies wanting training videos for their new hires and authoritative voices for their commercials to inspire confidence in the market place. You'll reem in the money and be able to emply a cook to deal with all that special diet crap. better still, you can write his/her salary off as a medical expense on your taxes :D
snip~I wish I could find a way to be more ecstatic without sounding ridiculous. ~snip
The reward, the hard won reward, revel in it! :thumb:
Please forgive the massive amount of detail, but I have a few family and friends following this thread now so I don't have to keep updating everyone individually. :)
No no no no, we want every stinkin' detail, type until your fingers fall off. Moar!
You'll reem in the money and be able to emply a cook to deal with all that special diet crap. better still, you can write his/her salary off as a medical expense on your taxes
Heh... we were talking about that just the other night actually, how if we find a winning lottery ticket on the street the first thing we're doing is hiring a full-time chef. :) But you better believe the medical expenses are getting written off next year. 7.5% is a high threshhold to meet, but a lot of ancillary costs count, like paying for daytime care for your other kids so you have time to deal with the one kid's therapy.
Oh, be still my beating heart...! I have discovered a completely GFCF cafe just a few miles from our house which specifically caters to children.
And there are hints that they sell "family portions" to go, like I could maybe order 50 of their chicken nuggets and freeze them at home for future use. Assuming they're any good; we'll be finding that out soon.
AND if nothing else, they have a little retail pantry section too, and they sell two Minifob-approved snack foods (Glutino pretzels and Kinnikinnick animal crackers) at prices cheaper than the health food store I've been buying them at.
Awesome!
As time goes on, you will find more and more resources. It's hardest when you're just starting!
Having some nearby alternatives for the days that there is no time, or you're overwhelmed, is fantastic. Even the days you don't need them, just knowing they are there is comforting. :thumb:
Wow, clod! What are the odds? I am so pleased that the world is finally realizing there are people out there with DAILY special needs. How is the little Fob? And how are you?
I commend you for all the work you're doing to help your son.
I'd like to offer a food option that you may not have discovered in your quest for gluten-free foods -- kasha, aka buckwheat groats.
[list][*]Buckwheat is grown totally without pesticides or herbicides.
[*]Buckwheat is a fruit and unrelated to wheat. . .
[*]Buckwheat products are safe for celiac sufferers.[/list] . . .
For people who struggle with wheat allergies and gluten intolerance, buckwheat is ideal. It has plenty of protein and B vitamins and is rich in phosphorus, potassium, iron, and calcium.
. . .
More here.
And especially since you've taken him off milk products, another great aspect of kasha is that,
[r]ich in potassium and calcium, buckwheat works with sodium to regulate the body's waste balance and builds and maintains strong bones and teeth.
Kasha is really quick and easy to cook, has a wonderful nutty flavor and smells like popcorn when you're cooking it, so it might really appeal to kids. I don't follow the directions on the box, but have created my own
kasha pilaf recipe, though if your kids have any objections to onions and/or mushrooms, it's easy to just leave those things out and make just plain kasha. There are more recipes
here.
Wishing you all the best!
Today was Minifob's evaluation with the school district, and it has been officially recommended that he be placed in the PPCD class next August (he's not eligible until he turns three, which is 2 days before school lets out for the summer.) But the evaluators did note a significant improvement from when they saw him just 2 months ago, pre-diet. Now I need to go meet the teacher and visit the classroom, to make sure it's a place I'm actually willing to put him 4 hours a day, 5 days a week.
In the meantime, I've heard a disappointing anecdote from my Early Childhood Intervention coordinator about Thoughtful House, the specialty clinic we're on the waiting list for. She says she had a family with an older autistic child who had begun experimenting with some enzymes and nutritional supplements on their own until they could finally get their appointment. They had some success, and sure enough, when they saw the doctor he confirmed that these treatments were indicated by the test results, and from now on they could purchase said supplements out in the lobby. The parents pointed out that the ones they'd been using listed identical ingredients to the ones in the lobby, and cost $30 instead of $200. The doctor told them that they could not vouch for supplements from other distributors, and would not treat him at all unless he was on their own brand of products. :eyebrow: I'm going to keep my initial phone appointment and see if perhaps there was a misunderstanding, or maybe these parents were talking about a single specific drug rather than generic vitamins, but I'm extremely wary.
This is one of the things that has pissed me off from the very beginning of all this research: fucking everyone is selling something, and it completely undermines their credibility. Oh yes, the GFCF diet works wonders--just buy our $80 instructional DVD, and order our wide variety of gluten-free products shipped right to your door... it's like, I don't know, the medical community should research this shit, so they can actually recommend legitimate treatments to their patients, and the patients won't have to weed out information on their own from shysters on the internet. For the record, the GFCF diet has been no less than a miracle for us, my kid is leagues better now than he was even three weeks ago, and you don't have to pay me a goddamn thing to tell you so. I take every opportunity that I can to say it for free, in fact, because I think helping people is a good thing.
The good news is, I talked with his pediatrician yesterday at Minifobette's 1-year checkup, and she is supportive of the diet, if not as enthusiastic about it as I am. She also said she is able and willing to perform some of the basic testing that is part of the biomedical protocol--for example, testing for yeast in the stool. If she finds yeast, she can treat it with an anti-fungal, regardless of whether she actually believes it is contributing to his autistic symptoms. I couldn't name any of the other blood tests off the top of my head, but she said to bring a list of the tests/treatments to his next appointment, and she'll happily proceed through it until she gets to a test she doesn't know how to do or a treatment she can't get on board with.
Sounds like you have a great doc there, Im sure that helps.
snip~ For the record, the GFCF diet has been no less than a miracle for us, my kid is leagues better now than he was even three weeks ago, and you don't have to pay me a goddamn thing to tell you so. I take every opportunity that I can to say it for free, in fact, because I think helping people is a good thing.
This thread, thanks to all your hard work, has become a light in the forest for other parents desperately looking for solid information.
snip~ I couldn't name any of the other blood tests off the top of my head, but she said to bring a list of the tests/treatments to his next appointment, and she'll happily proceed through it until she gets to a test she doesn't know how to do or a treatment she can't get on board with.
Cool, what a great help to have someone with not only the knowledge but the power to actually help.
Good work Clod! Scammers are pretty thick in the autism community and given the individual differences you're probably best off being the expert on your kid.
A humorous anecdote in the life of an autistic kid:
At the rehab center where he has his occupational therapy, the administration has apparently decided to put cameras throughout the building. Maybe because they want to safeguard against sexual harassment suits or something, with those physical therapists touching people all over and whatnot... but at any rate, all the occupational therapists were letting us know that there's a slight chance we'll be getting a call at some point from some uninformed administrator reviewing the tapes, and could we please tell them that yes, our child normally screams in horror when people come near him, and when the therapist picks him up and flings him into a pile of beanbags, it's not torture, it's therapeutic.
Ha ha ha, that's great. Politically Correct clashes with real world solutions.
there was an item on the news while we were away about a couple who's autistic son was "cured" by their aggressive early intervention and their refusal to give up. he had speech therapy, physical therapy and diet adjustments. hang in there, you're doing the best you can and it's not just a blip on the chart that you're already seeing benefits from your hard work.
Here's another five families:
http://www.autismyesterday.com/trailer.html
There are dozens, if not hundreds of recovery stories out there. The sad thing is, some of them have been out there since the early 90s, but no one bothered to listen until that airheaded harpie Jenny McCarthy demanded the spotlight about it. (And don't get me wrong, any publicity for the cause is probably a great thing in the end. She's just, ah, not the greatest spokesperson, you know? I've talked to some people who have actually been turned away from dietary interventions simply because she's the loudest voice pushing them right now.)
Thought this might interest you.
I alluded to this in a random comment in some other thread, but having become so thoroughly educated on the symptoms and causes of autism, we started noticing things about Minifob's little sister that we never would have thought twice about otherwise (and indeed, didn't think twice about back when it was Minifob exhibiting the exact same behaviors...) As a sibling, she has a 10-30% chance of being autistic herself, depending on who you ask.
When we put her on the diet alongside Minifob--out of necessity, because otherwise he would swipe her unsafe foods--nothing really happened. But she's still breastfeeding, and in the week leading up to her vaccination, I decided to go ahead and put myself on the GFCF diet, just on the off-chance that it might help her fight off the disease in some small way. And she totally changed. She became more talkative and more playful, while before she was our quiet "observer" baby. And she almost completely stopped doing this odd little gesture she does when she's around people she doesn't know, where she sticks her arm up beside her face to physically hide from their view. It's not like she was exhibiting symptoms before--she has good eye contact, she smiles and interacts, she points, she says a handful of words. But these are all things that Minifob did too. And given how she responded to the diet, we started doing some other food challenges along the lines of things we've already discovered Minifob has mild behavioral and digestive problems with (nothing as severe as the gluten/casein reaction, but it's apparently quite typical for autistic kids to have lesser allergies as well.) Sure enough, I can get completely undigested food to come out in her poop, just like he has when he eats the wrong foods. So at the very least, I am convinced she has similar digestive problems, whether or not they are ultimately bad enough to affect her neurologically. We're now experimenting with giving her 1/4 doses of his enzymes to see if she improves the way he has.
At least group therapy sessions do offer discounts. I saw a special on Discovery awhile back that featured a woman with six autistic kids. What kind of person does it take to say, "Hmm, I have five autistic children, I think I'll pull the trigger one more time and see what happens?"
What are the other foods? Where do you get the enzymes?
Tomatoes and Oranges are the big culprits, and other fruits to a lesser degree. This is consistent with foods that have high levels of phenols, and the thing that digests them is PST, Phenol Sulfur-Transferase. High-phenol foods give him (and her) mild diarrhea with undigested bits of the food in it, and in his case, they lead to extreme hyperactivity and visual stimming (shaking crap in front of his eyes, staring at things very up close,) but do not seem to increase the tantrums or decrease language usage or sociability.
We've been using
this enzyme so far, but we're hoping that as his digestion settles he'll be able to scale back to a combination enzyme like
this one, because that will include a smaller dose of the phenol enzymes plus some of the enzymes Undertoad was asking about that digest gluten and casein, in case he has accidental infractions through playing with playdough or kissing an Aunt wearing the wrong face lotion, stuff like that.
so, clod, now your sig reads 8,065. Is that the number of words left to write in your autism nutrition book?
I was just planning on publishing this thread in its entirety. Oh, did I forget to mention I was going to take everyone's content without consent?
Actually, I've been trying to find a time to get a good video of him, so you guys can really see what a completely different kid he is now.
That's a reminder of a place long ago and far away.
Yeah, it's on hold indefinitely. Maybe in another couple of years I'll have time to get back to it. :) I actually hope to have something new to put in my sig file soon. Waiting on Mr. Clod to take care of some stuff I'm not tech-savvy enough to handle on my own.
In other news, the National Autism Association knows their audience. When you join (I didn't, but my mother did,) you get a free gift: a copy of the Animusic DVD--you know, that CG music video compilation where the complex mechanical robots play synth music. Minifob watched the whole thing practically without blinking.
Those are great, I have them all. :D
Thought you might find
this article interesting.
There's a dedicated hippotherapy place here in Austin, I'm surprised they didn't mention it in the article.
Can I be a cynic for a minute? I'm sure the shamans were great and all, but I bet it also really helped that while in Mongolia he probably had to eat Mongolian food, i.e. no dairy or wheat.
Can I be a cynic for a minute? I'm sure the shamans were great and all, but I bet it also really helped that while in Mongolia he probably had to eat Mongolian food, i.e. no dairy or wheat.
Didn't the Mongols invent yogurt? I suspect there's some dairy in Mongolia.
On the other hand, we live with a lot of manufactured chemicals in modern society. I bet there's a lot fewer in Mongolia.
Yak, reindeer, and goat would be vaguely dairy but I doubt the chemical composition would be the same.
My kids have never reacted to goat, sheep or buffalo dairy products - where as they get rashes, intestinal problems and/or bad attitudes from cow... although not nearly as bad now as when they were younger (40% tend to outgrow dairy sensitivities).
Also, but unrelated to food sensitivity, IGF-1 is identical in humans and cows. Google IGF-1 and cancer if you don't know what that means.
So here's what I've been doing with my spare time recently: I started a
GFCF cooking blog. Feedback eagerly welcomed.
Outstanding! Man, all that shit looks delicious, I'm giving those recipes to anyone I think might feed me. :D
Great site, Clodfobble! Feel free to post my kasha recipe from post #167 if you'd like. For the kids, reduce the proportions of onions and mushrooms by half and only add them to half the prepared kasha so the kids can have theirs plain. I really think you'll like it. Well, I hope you do, because then there'll be one more thing you can add to your "safe to eat" list!
Nice site! I would even eat some of that stuff.
I suddenly have a craving for some brownies and frosting.
Just fyi - the original/vegan Earth Balance spread is gluten and dairy free, and tastes about a million times better than Fleishman's unsalted.
Thanks jinx! I'll look for it at the store.
Not sure if you've heard this/tried this yet, but I found this today and thought of you:
By Dr. Joseph Mercola
I have treated many children with autism and developmental delays over the past 10 years. Most have had excellent responses to the No-Grain Diet that I advocate for adults.
However, many treatment regimens for autism call for a gluten- and casein-free diet. Gluten is the major protein found in wheat and casein is the protein in milk.
Over the last six months I have come to realize that the major reason why autistic children need to avoid milk is because it is pasteurized. The pasteurization process turns casein into a very dangerous molecule that can further precipitate the brain injury. If the children are fed real raw milk this will not occur.
I have recently started recommending this to my autistic patients but have not received any feedback yet. However, I recently received an e-mail from two independent researchers and parents of autistic children who have been getting tremendous results with this approach.
The approach involves fermenting raw milk with kefir grains. If you are interested in fermenting the raw milk with kefir grains please read this comprehensive article.
The e-mail mentioned above follows:
"Dr. Mercola,
My colleague, Mary Helen, and myself have been feeding our children daily raw milk--either the raw cow's milk, or the raw goat's milk.
In addition to raw milk, we also have been fermenting the raw milk with kefir grains. The changes in our children are incredible!
However, we cannot spark any interest among other parents with autistic children, because they are deadly afraid of milk's theorized opioid effect.
In August 2002, we began to research opioids and their behavioral effects. It is almost a tragedy that this fallacious theory as the explanation for autism's symptoms had to be challenged by two mothers and not some research scientist. If autism wasn't such a serious problem, the opioid theory as provocateur of autism's symptoms is almost comical.
How parents of autistic children were ever sold on the idea that opioids caused those symptoms exposes the politics of research and the rejection of logic.
What should be embarrassing for medical scientists is that the one thing that probably can explain some of the behaviors seen in autism is hyperammonia, and in all the literature ever written on autism, there are only about three doctors who gave it the attention it deserved.
If you have never tried the real kefir grains, then you are in for a treat. Actually, the first time we tried them, we all experienced an elevated temperature and cleansing, presumably due to real detoxification. In any event, our families have greatly benefited from raw fermented milk products.
You will have to see for yourself. As mothers, we will always pursue optimal health and wellness for our families; but to also improve and possibly recover the cognitive functioning of our autistic children, that is our heart's desire.
The pasteurization of milk has damaged the gift of life and health. Even heating milk above 100 degrees to make yogurt causes protein cross-linking where amino acids become fused together. Poor lysine really goes through a beating!
You will never heat milk again after studying heat treatments, nor will you want pasteurized beer, pasteurized soy sauce, pasteurized fruit juices or pasteurized eggs.
The foundation for this paper is all on the 'autism-challenge;' a list that was created for autism research. It is where all this unfolded--one article at a time.
Sincerely,
Linda Carlton and Mary Helen Brauninger"
continues:
Part II:
Over the last six months I have come to realize that the major reason why autistic children need to avoid milk is because it is pasteurized. The pasteurization process turns casein into a very dangerous molecule that can further precipitate the brain injury. If the children are fed real raw milk this will not occur.
I have recently started recommending this to my autistic patients but have not received any feedback yet. However, I recently received an e-mail from Linda Carlton and Mary Brauninger, both independent researchers and parents of autistic children, who have been getting tremendous results with this approach and have compiled a paper on the topic.
The approach involves fermenting raw milk with kefir grains. If you are interested in fermenting the raw milk with kefir grains please read this comprehensive article.
Their informative paper follows:
Heat-Killed Bacteria's Role in Inducing an Innate Immune Response and its Possible Link to Autism
By Linda Carlton and Mary Brauninger
Introduction
Autism, a childhood disorder whose behavioral symptoms usually manifest within the first few months of life, has been recently linked to environmental etiology. This paper presents the hypothesis that autism may be the result of a disease created by man due to the aberrant use of chemicals, drugs, vaccinations, environmental toxins and poor nutrition.
History and Today
The first known cases of autism seem to have appeared around the 1940s in America. There were several programs of change occurring during those years: the chlorination of water, the pasteurization of milk, and newly established immunizations to protect the health of the public, children and adults alike. (Marr and Malloy 1996)
All three of the above-mentioned programs were initiated for public safety in the control of bacterial and viral diseases. Thimerosal, found in many vaccines, is an organomercurial antiseptic that is anti-fungal and bacteriostatic for many nonsporulating bacteria and is used as a topical anti-infective or as a pharmaceutical preservative.
Other methods employed today to eliminate or control bacterial growth include low or high temperatures, chemicals, gases, microfiltration, bactofugation, sanitation and flavors. (Champagne et al 1994) Pasteurization is a process that stops fermentation in which the medium is brought to up to temperature levels sufficient enough to cease fermentation and kill bacteria. Vaccine programs also use this method of heat-killing bacteria and viruses to induce an immune response or tolerance to disease without infecting the subject.
It is commonly known that raw milk will sour, but pasteurized milk will putrefy. The idea that putrefaction of the stools causes disease (i.e. intestinal autointoxication) originated with physicians in ancient Egypt (Chen and Chen 1989). The toxic process, however, was reversed by the consumption of lactic acid-producing bacteria that changed the colonic microflora and prevented proteolysis (Chen and Chen 1989).
Autointoxication is an ancient theory based on the belief that intestinal waste products can poison the body and are a major contributor to many, if not all, diseases (Ernst 1997). By ancient tradition, lactic acid bacteria (LAB) are involved in the production of fermented foods. German scientists found that foods rich in LAB constitute one quarter of the German diet and are characterized by a safe history, certain beneficial health effects, and an extended shelf life when compared with raw materials (Hammes and Tichaczek 1994).
Microflora--'Early Life Studies'
In Finland, a double blind study revealed that when pregnant and lactating mothers and their babies were administered LAB, the immunoprotective potential of the mother's breast milk was increased (Rautava et al 2002). The study found
that the amount of anti-inflammatory transforming growth factor beta2 (TGF-beta2) in the milk of mothers receiving LAB as compared to mothers receiving a placebo was significantly higher (Rautava et al 2002). Rautava documented that breast-fed babies, unlike bottle-fed babies, have a microbic intestinal flora characterized by a marked predominance of bifidobacteria and LAB (Coppa 2002).
A breast-fed, full-term baby has a preferred intestinal microbiota in which bifidobacteria predominate over potentially harmful bacteria, whereas, in formula-fed babies, coliforms, enterococci, and bacteroides predominate (Dai and Walker 1999). It is unlikely, however, that a lower ability to ferment carbohydrates is a major cause of increased risk of diarrhea in formula-fed babies, but individual short chain fatty acid (SCFA) production may be important (Parrett and Edwards 1997).
In essence, the formula-fed baby develops a much different microflora than that of a healthy, full-term, breast-fed baby.
Autism & Ammonia--'Behavioral Symptoms'
In 1989 Drukker documented the first case of a patient with autistic-like symptoms found to also have abnormal blood ammonia. Drukker reported that the subject had symptoms of dementia, amnesia, and cognitive disorders and reportedly 'misdiagnosed' as autistic.
Later in 2002, Cohen found that by an approximate one-third reduction of GABA and ammonia levels for an autistic patient, there was noticeable improvement of verbal/language skills and a reduction of repetitious, ritualistic, self-stimulatory behavior (stimming).
LAB, lactitol, and lactulose have all been clinically shown to reduce blood ammonia (Loguercio et al 1987, Vince and Burridge 1980). Ammonia is produced by intestinal-bacteria (Vince and Burridge 1980). The largest amount of ammonia is generated by gram-negative anaerobes, clostridia, enterobacteria, and Bacillus spp (Vince and Burridge 1980).
Gram-positive non-sporing anaerobes, streptococci, and micrococci formed modest amounts of ammonia while lactobacilli and yeast formed very little ammonia; therefore ammonia may be predominantly formed from bacterial cells in the colon (Vince and Burridge 1980).
Gluten & Casein
Laboratory studies have provided evidence that casein, gliadins, and glutenins are hydrolyzed or degraded by fermentation with LAB, providing better digestibility and cereal tolerance. Dietary lipids influence the gastrointestinal microbiota and, specifically, the population of LAB (Bomba et al 2002).
The favorable protein utilization and body mass increment on fermented milk diets are attributed to a better digestibility of proteins in these products (Vass et al 1984, Chebbi et al 1977). A great deal may depend upon the dough acidification or quality of specific LAB species, live or heat-killed during processing, whether bleached or unbleached flour is used, pasteurized or raw milk in the processing of consumer goods.
Several autism studies have hypothesized that the behavioral symptoms in autism may occur due to opiate-like activity. Opiates are sleep-inducing drugs, and opioids are naturally occurring peptides with similar effects. An example would be that of warm milk, which induces sleep through a natural release of peptides into the system.
In autism, there are characteristic symptoms of sleeping disorders. In fact, a review of the literature on the behavioral effects of opioid-like peptides failed to include any of the common characteristic symptoms described in autism. Children with autism have been documented to have increased urinary peptides (Whiteley and Shattock in 2002). These peptides are broken down either by host bacteria or natural fermentation. These specific peptides were derived from dietary sources, in particular foods containing gluten and casein that are known to produce opiate-like affects (Whiteley and Shattock 2002).
Studies preformed on the effects of beta-casomorphin-7 indicate they activate a histamine release in vitro in the presence of copper (II) (Lodyga-Chruscinska et al 2000). Skin tests with opioid peptides naturally occurring in cow's milk (such as beta-casomorphin-7 and alpha-casein) showed wheal and flare reactions similar to histamine and codeine that were observed in all children (Kurek et al 1995, Kurek et al 1992).
Beta-casomorphin-7 and alpha-casein are noncytotoxic histamine releasers in humans (Kurek et al 1992, 1995). The bioactivities of peptides encrypted in major milk proteins are latent until released and activated by enzymatic proteolysis, e.g. during gastrointestinal digestion or food processing (Meisel H, Bockelmann
1999).
The proteolytic system of LAB can contribute to the liberation of bioactive peptides (Meisel H, Bockelmann 1999). LAB were shown to liberate oligopeptides from beta- and alpha-caseins that contain amino acid sequences present in casomorphins, casokinines, and immunopeptides (Meisel H, Bockelmann 1999). The further degradation of these peptides by endopeptidases and exopeptidases of LAB could lead to the liberation of bioactive peptides in fermented milk products (Meisel H, Bockelmann 1999).
Autism Microflora
According to recent laboratory findings by Finegold in 2002, some cases of late onset (regressive) autism may involve abnormal flora. The fecal flora of children with regressive autism showed much higher clostridial counts than that of control children, not unlike those studies done on breast-fed and infant formula-fed babies (Finegold et al 2002). Finegold found a total absence of non-sporulating bacteria in the autistic children; in effect, thimerosal, by definition, targets such strains.
continues:
part III:
The more popular among diet choices recommended for autistic children is the casein-free and gluten-free diet. While an elimination diet may avoid the offending proteins, it also removes all dietary sources of LAB. Elimination diets (just as in infant formulas replacing mother's milk) have inherent gaps that create a need for supplementation of vitamins, minerals and amino acids; but it is also the absence of LAB that makes these diets problematic.
In 1983, Siegenthaler suggested that under certain conditions cultured milk, rather than fluid milk, can be used for infant formula and child nutrition as well as for school milk programs. Inappropriate handling of pasteurized milk is often responsible for a high bacterial count and organoleptic defects (Siegenthaler 1983).
The advantage of LAB fermented milk is the low pH created by the high lactic acid content that detrimentally affects food spoilage and pathogenic organisms in milk (Siegenthaler 1983) resulting in a longer shelf life of the fermented product at ambient temperatures (Siegenthaler 1983). Fermented milk products contain the enzyme lactase that facilitates digestion of residual lactose even after ingestion (Siegenthaler 1983).
Proinflammatory Cytokines
In 2001, Jyonouchi tested innate and adaptive immune responses in children with developmental regression and autism spectrum disorders. She found that children with autism produced higher levels of proinflammatory and counter-regulatory cytokines without stimuli than controls. Her results indicate excessive innate immune responses in a number of autistic children that may be most evident in TNF-alpha production. A fermented-milk, kefir, contains a substance that enhances IFN-beta secretion, the active substance that was identified to be sphingomyelin (Osada et al 1993-94).
The gastrointestinal system is continually subjected to foreign antigenic stimuli from food and microbes (Schley and Field 2002). Intestinal epithelial cells respond to lipopolysaccharides from gram-negative bacteria (Vidal et al 2002) and observations suggest that gram-positive organisms from lactic acid bacteria temper this reaction and prevent an exaggerated inflammatory response (Vidal et al 2002).
The reason why I quoted this big old long article instead of just the link is that you have to sign up for a bunch of spam to get to the article, and I wanted to spare ya'll that. :)
Source page here:
http://articles.mercola.com/sites/articles/archive/2003/07/05/pasteurized-milk-part-four.aspx
Summary
Sixty-plus years have passed, and autism still remains a mystery.
Through the efforts made by modern technology to control bacteria and disease, the destruction of non-pathogenic bacteria has disabled our ability to battle disease.
The attempt to artificially replace mother's milk has created a flawed and harmful bacterial ecosystem in our offspring. Many rural societies provide a diet that contains sufficient quantities of non-pathogenic bacteria. Dietary proteins are broken down through a process of fermentation with non-pathogenic bacteria.
A feasible solution would be to ferment foods as has been practiced for many centuries rather than elimination of casein and gluten. Scientific studies have found that the use of antibiotics were futile in the attempt to control harmful fecal bacteria; however, non-pathogenic bacteria has been clinically shown to be effective in studies done on other diseases with far worse conditions.
Autism is a behavioral disorder defined by characteristic symptoms that we must compare with other diseases or conditions to lead us to a stronger association. Heat-killed bacteria induce an innate immune response; however, only live bacteria can repair mucosal barriers to temper immune responses.
Linda Carlton is an independent researcher and mother of an autistic son. Mary Brauninger is an independent researcher and mother of five. Two are autistic.
That's the end of the article.
Thanks, OC, that had a lot of good information in it. I've read of many parents who have said that after an initial period of healing, their kids were able to tolerate goat's milk/yogurt/cheese, though I'm not sure if they were all referring to unpasteurized goat's milk or not. The Specific Carbohydrate Diet people (
www.pecanbread.org) are big into making your own yogurt at home with a machine and a starter culture, so that's definitely got the good bacteria in it.
Thanks jinx! I'll look for it at the store.
Np.. although the Smart Balance ("Light - now with flax oil" variety only - all others have whey) might be easier to find.
Check out today's turkey chili... nom nom nom. :yum:
That does, indeed, look really yummy! I may be hitting the grocery store on my way home today.
Researchers find first common autism geneResearchers have found the first common genetic link to autism and said on Tuesday it could potentially account for 15 percent of the disease's cases.
Three studies, two in the journal Nature and one in Molecular Psychiatry, suggest changes in brain connections could underlie some cases.
While the findings do not immediately offer hope for a treatment, they do help explain the underlying causes of the condition, which affects as many as one in 150 children, according to the U.S. Centers for Disease Control and Prevention.
"These findings establish that genetic factors play a strong role in autism spectrum disorder," National Institutes of Health acting director Dr. Raynard Kington said in a statement.
"Detailed analysis of the genes and how they affect brain development is likely to yield better strategies for diagnosing and treating children with autism."
. . .
We visited his PPCD classroom yesterday, which left me with mixed feelings. It was encouraging to see how well everything was run, and the total of three adults had what seemed to me to be a large number of kids completely under control. I was left feeling confident about putting him in their class next August. At the same time, it was awkward for me to see his classmates--mostly the discomfort of having to mentally group him in with kids who were obviously worse-off than he is, even though most of them clearly had other disabilities besides autism. But of the kids that I was guessing were autistic, some of them were more proficient at certain things than he is, so I can't claim he doesn't need to be there. (And yet, I still feel the need to remind myself that it's not a fair comparison because they are all older than he is, some by a full year or more, and they are all accustomed to the classroom routine already. It's hard to stop that "precious snowflake" mentality even in the face of direct evidence to the contrary... like my kid is totally going to be the best student in his remedial class, you know? :right:)
The other good news is there are 3 or 4 other kids in the class who are all on the GFCF diet, so I don't need to worry about explaining how to do it or why it's important for him; they know all about it. And here's another stupid little thing that made me happy: it was plain that 100% of these kids have issues getting their hair cut just like Minifob does. Every single one of them had either a "Hair By Mommy" cut, or the "Just Pin Him Down and Buzzcut It Every Ten Weeks" style. In all objectivity, Minifob had the best-looking hair of any kid in the class, hands-down. I've developed quite a talent, if I do say so myself.
I have to constantly remind myself to take the stress items in chronological order: 1.) getting the stepkids set up for summer vacation, 2.) Minifob's birthday, 3.) Family reunion wherein I am expected to host and plan most activities/food and at least two relatives will be staying at my house, 4.) actual occurrence of summer vacation with the stepkids, and only then 5.) Minifob's first day of (screaming at his abandonment in) school. Oh, and somewhere between steps 2 and 5 there will be a formal evaluation of Minifobette, and I will probably not be thrilled with the results. :yelsick:
juat a reminder because I know you already know this, but it's easy to lose sight of......
Don't judge the learning environment solely by the other kids in it. the best learning (IMO) is non-competitive. it's about improving the skills of the individual. Individuals may have similar learning disabilities, but that doesn't mean they have the same learning abilities, and that's what really matters. Some kids with autism do pretty well in mainstream schools. Many don't. Some do great is specialized programs. Some don't.
OMG,
this is unbelievable.
They are neighbors Sarah Fisher, Danielle Harway and Kelly Plaster. All three filed court papers asking that Spencer, his sister Olivia, and mom and dad be restricted to their own home and driveway.
The Trussells said there were no issues until Gary Trussell confronted another father on the cul de sac whose son was picking on Spencer.
It didn't go well.
Sarah Fisher reported the Trussells to Child Protective Services. She called Gary Trussell's employer, Continental Airlines, where he's a captain. She also made a call to 911, claiming he couldn't control his young children.
But the San Diego sheriff's deputy who responded declined to write a report. CPS dropped the case as unsubstantiated, and Continental Airlines stood by their longtime employee.
"I'm offended that someone would try to involve my employment, my profession in this matter," Gary Trussell said.
He has one firearm that's locked up. It was issued to him by the Department of Homeland Security for his job. He's a former lieutenant colonel in the Marines, who served his country for 25 years.
:mad2:
The spanish rice looks really good Clob. If your boy likes mexican so much, maybe he would like the nachos we make - although most people just think they're weird. Basically they're corn chips topped with refried beans (or canned pintos cooked in salsa until you can mush them a little) and cooked winter sqaush. I buy the frozen bricks of squash and cook them down in a little water or chix broth. If I'm not adding a bunch of other veggies (mushrooms, peppers, avocados etc) I put a litte sugar and cinnamon in the squash and then sprinkle more cinnamon over it before I pop in the broiler to crisp it all up.
Thanks! Yeah, his one favorite meal that survived the shift is refried beans on corn tostadas. (He still calls them "beans and cheese" even though there hasn't been cheese on them for months.) I'll have to try the squash mixture--although I'll probably have to sell him on it as a "cheese dip" at first. :) I also read somewhere that one woman uses spaghetti squash (the kind that you tear out of the shell with a fork and it separates into these little strands like spaghetti) as the "cheese" on her kid's pizza. Another said she used grated polenta.
Recently I've had to take some serious steps back to evaluate myself in all this. Since January I've lost 15 pounds, a combination of stress and not having the energy to find stuff to feed myself on this stupid diet. It's at the point where Mr. Clod has officially stated that I could stand to gain some weight back. I have also undone thousands of dollars of childhood orthodontic work, as my nighttime teeth-grinding has finally resulted in my jaw slipping back to wherever it was before they did that whole metal contraption in my mouth that repositioned it--so now my jaw clicks again, whenever I move it around. And a couple of weeks ago, I had a severe dizzy spell that lasted over two hours and finally resulted in my calling the paramedics because I was by myself with the kids and was really sure I was going to pass out. The paramedics couldn't find anything wrong, and their continued questioning about something that might have caused a "panic attack" well and truly pissed me off, because that particular week happened to be the freaking pinnacle of Minifob's entire existence, the best days he'd ever had. It wasn't a fucking panic attack, I was dizzy. When Mr. Clod got there, he insisted on taking me to the hospital to have basic tests run, because he personally was convinced it was a nutritional deficiency, but everything checked out okay.
But then I started thinking about it... you know how when you're working really hard on a project, you go and go and go and when you finally get a vacation, you suddenly get sick as a dog? I think that's kind of what happened, because that week really had been so good, everything was coming together and I had just begun feeling genuinely optimistic that he might have a full recovery within another year or two. But obviously there's a lot of work to do yet, and the paramedic episode forced me to recognize that I can't sustain this level of stress for that long.
So I've been working really hard on getting things off my plate, identifying which things I can safely refuse to even look at. We need to replace one of our cars in the very near future, and I have completely abdicated that task. Mr. Clod knows our budget, and he'll show me the final car before he signs, but I'm not allowing myself to spend even one minute on used car searching. And I told him to tell his mother that I simply will not discuss the question of Minifob going to stay with her in the summer of 2010 until my calendar actually says it is 2010. I'm still looking for other things to get rid of, but right now it looks like the best I can do is thwart anything new coming my way.
There's a reason they tell parents to put on the oxygen mask first.
I think what happens is that during periods of high stress, your body goes into overdrive to keep you going and neglects some of its own basic ongoing needs - sort of like [COLOR=dimgray][/Star Trek][/COLOR] diverting power from life-support to power the shields [COLOR=dimgray][/Trek][/COLOR]. When the stress is relieved, your body then goes back to normal but normal is now compromised and the piper must be paid.
I think cutting back and remembering who the captain is is a good start.
You are doing a good job and are wise to do periodic checks to make sure all the goals are in the right order and receiving the proper allocation of resources.
Oh, Clodfobble, do not wobble
when you're busy, and get dizzy
some chocolate you must gobble
Don't neglect your awesome self
don't waste away, or turn all gray
Minifob needs you in decent health
That's probab;y the worst pseudo poem I ever written. It's quality is not a reflection of yours. perhaps your awesomeness is so powerful it sucks awesome from poetry written about you?
dr monster agrees with beestie that you are doing the right thing, and prescribes chocolate (eaten in secret) and much silliness in public. trust me on this.
I may just have to up and send some prescription-strength Beestie Balls to House of Clod to aid in the replenishment of parental strength.
They're chocolate-covered, you know. And they have just enough elixir to get the job done.
I really feel for you, Clod.
After my father's transplant and death last June, I similarly reached a stage where I . could . not . cope . with . one . more . thing.
Unfortunately, that 'one more thing' was my mother's own anger and depression. It's taken months for me to get back to a frame of mind where I can .swallow. my own bitterness and anger and try to help her.
Burnout is a terrible thing. You are a wise woman to recognize it for what it is, and to get help.
Clod, you have done, and are doing, a fantastic job. The problem is you're too smart. You know there is more information out there, there will always be more information out there, but you'll never be able to assimilate it all, so don't make yourself crazy/sick trying.
Deep down you know you're winning, you've got a handle on it now. So let the whole family get used to the routine... and then you can progress at a saner pace for a bit.
Maybe it's our fault too. We love you and want to give you all the support and encouragement need, but don't let us push you into thinking you can fly, OK?
No reason you can't sneak a Hershey bar when they ain't looking. ;)
Ah, see, but actually, milk chocolate has milk in it, and I'm still staying GFCF myself until I can wean Minifobette because it has noticeable effects on her. I take your point, though. Rice Divine makes a dairy-free ice cream with dark chocolate and coffee beans. :)
Hopefully some of your family and friends that you mentioned pointing this thread out to will be able to give you a helping hand as needed. ::cough:: ;) You are definitely doing the right thing (as usual :D) focusing on what can be put off. One of the most important things the Fobblets need is a healthy mom, so t's OK to let things slide occasionally. You aren't being a 'bad' mom/wife/friend/family member. By taking care of yourself, you are taking care of all of them.
My heart goes out to you, but really I wish there was something more tangable I could do for you.
you need a massage. a professional one,including facial. Mother's day is coming up. just sayin'
I am totally pumped about today.
First off, Minifob woke up with a dry diaper, which he's never done before, so potty-training might not be as far out in our distant future as I had thought. Then, we went to our first outing with a local playgroup I joined. His therapist agreed that it was really time to start pushing him on the socialization with kids his age, now that he can be taken to new places pretty reliably (as long as they're kid-safe places to begin with, and not china shops. :)) He did an awesome job--didn't outright acknowledge any of the other kids, but played happily alongside them with only the barest of sharing issues, and left peaceably when it was time to go. And I got along great with the mothers I got a chance to talk to--one woman did seem a little freaked when I told her Minifob was autistic, like maybe it was contagious, but the rest of them were open and interested. And one of them... well, her boy is only 17 months, but I'm telling you now, he's autistic. I didn't say anything specific to her about it, but I can tell she already suspects something anyway. She was very interested in my conversation with another mother about what Minifob was like when he was younger (i.e., not displaying any of the "classic" symptoms they tell you to look for on the PSAs, but all the weird things he did do,) and what we were doing to treat him now. Not that I would wish this on anyone else, but it's nice to feel like you might be able to help out someone in the same boat.
And now, the little dude is taking a nap. Joy! I already rescheduled his therapy appointment next week so that we can make it to another playdate near us.
Wow Clod. That is so awesome. It must feel absolutely amazing to get out and do "normal" things with him. And like you said - the possibility of helping others through your experience - bet you didn't go there with that in mind! Next time he takes a nap, I'll send juju your way that it will coincide with Fobette, so you can take one too =)
Sounds like a fun day was had by all Clod. *smiles* Like Queeny says, must be nice to do the normal stuff :P When a little'un has an illness/condition/special needs, it can take over a little, especially when the diagnosis is pretty fresh. Can be hard work not letting that become their 'identity', especially around other people. You sound like you're handling it so brilliantly though. Kid'll do great with parents like you.
That.
Rocks.
In too many ways to count. Congratulations on how far you've all come.
Next time he takes a nap, I'll send juju your way that it will coincide with Fobette, so you can take one too =)
Oh they always coincide, by design. It's just that Minifobette actually sleeps, while Minifob usually just does calisthenics in his crib until I come and set him free again. I used to give him reprieve after about an hour and a half, but now I make him stay in until Minifobette wakes up, no matter how long that is. Otherwise he'll just wake her up, and that's no fun for anyone.
....
I have to constantly remind myself to take the stress items in chronological order: 1.) getting the stepkids set up for summer vacation, 2.) Minifob's birthday, 3.) Family reunion wherein I am expected to host and plan most activities/food and at least two relatives will be staying at my house, 4.) actual occurrence of summer vacation with the stepkids, and only then 5.) Minifob's first day of (screaming at his abandonment in) school. Oh, and somewhere between steps 2 and 5 there will be a formal evaluation of Minifobette, and I will probably not be thrilled with the results. :yelsick:
I watch this thread in awe as you deal with all this stuff so magnificently, Clod! I have nothing much to add not being a parent'n'all but you DO have to believe that looking after yourself is a major and integral part of looking after everyone else. So I'd humbly suggest offloading some/all of the family reunion duties listed above. Just this once?
ETA: I love LOVE the way you're writing the recipes! You rock!
So I'd humbly suggest offloading some/all of the family reunion duties listed above. Just this once?
Yabbut, in all honesty, how? I have to do the cooking because none of the other relatives have any concept of cooking GFCF (most of them don't even know my kid's autistic yet.) Once I plan a menu and buy the ingredients, they can help me make it, sure, but the planning is the hard part. I'm working on offloading the activities section of things, but that has hazards: my cousin coming from North Carolina keeps talking about how many great outdoors things there are to do around here. Which is true--in the Spring. He has apparently been away for long enough to completely forget what 100 degree weather feels like.
Talk's cheap, the weather will slow the cousin down for ya. :haha:
Yabbut, in all honesty, how? I have to do the cooking because none of the other relatives have any concept of cooking GFCF (most of them don't even know my kid's autistic yet.) Once I plan a menu and buy the ingredients, they can help me make it, sure, but the planning is the hard part. I'm working on offloading the activities section of things, but that has hazards: my cousin coming from North Carolina keeps talking about how many great outdoors things there are to do around here. Which is true--in the Spring. He has apparently been away for long enough to completely forget what 100 degree weather feels like.
Well done on offloading the activities - once you've delegated leave it to them (that's the most difficult thing about delegating!).
Can you politely ask the two relatives who're expecting to stay with you that they make arrangements to stay somewhere else?
I dunno, but I think that's what I'd try to do.
Good luck anyway.
They're staying here because they're both dead broke right now (through no fault of their own, they're generally upstanding contributing members of society)--another relative bought their plane tickets too. If they didn't sleep at my house, they couldn't come at all.
They're staying here because they're both dead broke right now (through no fault of their own, they're generally upstanding contributing members of society)--another relative bought their plane tickets too. If they didn't sleep at my house, they couldn't come at all.
I thought that might be the case ... All I can do is send you supportive vibes ...
Tiki reminded me (not her intention with that thread, I'm sure :lol:) that I finally got an updated video on Minifob's progress. Behold!
[youtube]BLnWlLO8p6A[/youtube]
What a difference from
this. Yay you. :notworthy
You know, when they're grown and don't call often enough, you'll have a ton of ammo for the guilt trip you lay on them. :haha:
Amazing. :thumbsup:
And they're both adorable.
Wow! Most excellent. By the way, I am keeping up with your blog. I can't wait to try the sweet wine fish. :thumb:
A slightly off topic question: Do you notice a difference, physiologically, or mentally for yourself being on this diet?
In myself, no. I have lost weight, as I've mentioned, but part of that is also because I am frustrated trying to find things to eat for lunch if I don't have leftovers from the night before, so half the time I end up just not eating. On the other hand, they say the older you are the longer it takes to clear your system--other people's anecdotes seem to indicate I'd need to be on it for a full six months before I saw any possible effects.
And they're both adorable.
Thanks! I'm pretty fond of 'em myself.
Your kids are too cute! Well done Mom.
Did you notice how Minifobette seemed to try to "smile" when I said I was going to take a picture? These are the tiny socializaton cues I am desperately clinging to these days for her. It took her a long time to really fight off her measles shot, but she's finally back to normal poop now for several days in a row, so I'm letting myself be hopeful (not to mention looking forward to weaning her.) She's still borderline, socially, but in the last week or so she's really stepped up the progress again.
Wow Clod. Made me cry. Absolutely amazing. (You, and the progress.) Congrats. Keep up the great work!
Seriously adorable!
Clod, I was inpressed with how fast he leaned over to put an arm around minifob when she made motions to get off the chair.
Been reading your blog. Really good! Y'know, when my mum was trying to cook for me on weird and wonderful diets, a site like this would have rocked her world. Well done.
Gorgeous kiddies btw. :)
And the emotional roller coaster, it just keeps going...
Minifob's still having constant, terrible diarrhea. It got briefly better right after we started the diet, but then slowly eased back into the horror it's always been. On the one hand, his massive cognitive and behavioral improvements do confirm that we're taking good steps overall, but on the other hand, I know he can't really get better until his digestion is functioning properly. I've been living and breathing his food diary for weeks now, experimenting with one thing after another... and I think I've got it narrowed down to the most horrible possibility. I think it's the rice. (Yes, it is possible to have an intolerance for rice, for the record.)
So that's lined up as my next experiment, removing one of only two major substitute grains left in his diet. I technically started already tonight, because he refused to eat any kind of dinner--either because he's getting sick, or because he loaded way the hell up on rice-flour birthday cake this afternoon. :) Happy birthday, kiddo. Maybe next year you can have a cake made of quinoa flour or some crazy thing.
rice? oh fuck! But happy birthday, minifob!
Gotta hand it to you Clod. There is no quit in you.
I remember when this discussion first started. Boy did I not get it. I think I get it now.
I'll say it again. You are one good Mommy.
And I plan on making your shepherd's pie this week!
Clod, I just gotta say I am constantly amazed at what you are doing.
Rice? I guess that leaves lard, whiskey and cigars. :rolleyes:
One for the desperate: you can make flour from acacia seeds / wattle seeds. Australian Aborigines used to make a kind of bread from it. I have no idea if it is suitable for minifob, but certainly, it MUST be cooked: in the raw state it contains anti-nutritional components. You MIGHT be able to get it at health food stores.
Just FYI, FWIW, which might not be much.
Best of luck.
Rice? I guess that leaves lard, whiskey and cigars.
[size=1]Whiskey is a grain alcohol, it's full of gluten...[/size] ;)
Oh honey. I feel for you on the Birthday stuff. I don't know, but I may have already mentioned some of Ma's heroic birthday efforts over the years. My personal favourite (for giggle value...it tasted awful :P) was the jelly (jello) made from green seaweed.
Also, word of warning: arrowroot is not a good baking substitute for flour.
[eta] I haven't followed all the details of diet, so forgive me if this has already cropped up, but how is he with oats? If they're ok for him, you can make some great oat based party snacks.
Pure, wild oats are technically gluten-free. However, there is basically no such thing in this country as harvested oats that have not been contaminated with gluten as part of the processing. I could grow them in my own backyard, or buy them from very specific expensive
retailers, but that's about it. Most oat recipes still require finer-ground flours to fill out the texture, so it's just a nutrition additive at that point.
You're... you're gonna sow your wild oats?
Can we watch?
:lol: I don't have many left, I'm sorry to report. That was called college.
And actually, I may be able to use oats as a substitute for small amounts of breadcrumbs, which could be very helpful if I can no longer use crushed up Rice Chex. It just won't help me bake a loaf of bread.
I am in awe, clod. Great Praise to you indeed.
We had our first appointment at Thoughtful House today. I couldn't be happier with the way things went.
First off, the office is nothing like a doctor's office. The "waiting room" is like a living room full of toys, including a Wii, and the "exam rooms" are carpeted, with bookcases and couches and more toys. No tables with rolled paper, no scales, no fluorescents. The doctors are automatically familiar with such practices as casually blocking the door with their chair, so there is no need to constantly pull the child away from it.
Then we got over an hour of dedicated face time with the nutritionist. I had been a little unhappy at the idea that we would supposedly be having all these tests ordered at this appointment, but then the followup appointment to discuss results and act on them wasn't for another six weeks. But it turns out the tests really do take that long, and I will be anything but idle in the meantime. Aside from a huge packet of information regarding a variety of dietary things, this is what we walked away with:
--Immediately discontinue his vitamin/mineral supplements and his probiotics for two weeks, to prep for the lab testing. (They will confound the results otherwise.) This has the added benefit of finding out if the coconut contained in them is giving him problems--a likely possibility, because we had to stop the coconut yogurt after it made his diarrhea even worse (I wouldn't have thought that was possible, but it turns out it was.) In addition, don't let him eat any fruits or nuts for two days prior to collecting the samples.
--To keep up the "you must take your medicine every night" routine, and to anticipate the high probability that the lab results will show a massive yeast overgrowth among other things, we will instead be giving him apple cider vinegar in his little med syringe instead. This does not kill yeast directly, but it breaks down the mucousy housing material, so to speak, thus making the anti-fungal more effective if/when it is eventually prescribed. Good for the digestive tract even if it turns out he has no fungus after all.
--It's likely he doesn't have a problem with rice itself, because if it were a food sensitivity we should have seen the improvement within a day or two. Instead what we saw was sudden, massive black poop after five rice-free days. This is indicative of a change in the bowel's general equilibrium, which makes it likely that it was the yeast in the rice bread that he was specifically craving. So he can have rice back, but not his rice bread sandwiches for now. No problem, I've already gotten him to accept the idea of a sandwich made with his waffles instead.
--After two weeks, we take the poop and pee samples and FedEx them off to the labs. Then begins the real fun: a full bowel clean-out. Variable doses of magnesium citrate until he has reached his target of pooping at least once an hour, for as many days as it takes. I have been warned that terrible, horrible things may come out of him at this time, of a size that I could never, ever have imagined could be contained in his tiny body. He is not done until what is coming out is basically clear liquid.
--General examination of his diet shows that he needs more protein than he's getting, especially early in the day. If I can't get him to eat bacon and eggs in the morning, I need to start putting protein powder in his waffles. And, if I'm up for it at some point before the next appointment, I should really do a trial of removing corn--as in, the tostadas and tortilla chips he eats every day. Yeah, uh, we'll see about that one. Not right now, that's for sure.
How are you going to get him to take the magnesium citrate?
Pin him down and squirt it in the back of his throat with a syringe, just like his nightly vitamins. It's easier if I have Mr. Clod to hold his arms while I sit on his midsection, but I have on several occasions successfully done it by myself. I basically straddle his chest with his arms pinned inside, and hold his head still between my knees. It's quite a workout for me--first off, I'm working the hamstrings like crazy because I'm too heavy to actually sit on him, so I'm basically holding myself in a squat a few inches off the ground, and then second, with nothing to pin his hips behind me he can kick the crap out of my back and occasionally lands a good one to the back of my head--but it's surprisingly effective for him. He doesn't fight the nightly vitamins at all anymore, though he makes it clear that he still wants Mr. Clod to hold his arms, even if he's applying no pressure. If the magnesium citrate doesn't taste bad, he shouldn't fight me on those after the first few times either.
Pico: have you ever
given a cat a pill? :lol:
Did anything come of your concern that they might want to put him on expensive proprietary supplements... or is that down the road a ways still?
I just saw something about apple cider vinegar...
here. May or may not be anything useful there. Pretty potent stuff though. My dad used it to (over) treat a toe nail fungus... figured if a little was a good a lot was better... his nail fell off.
Oh, and have you tried gram/chick pea flour yet? Supposed to be very high in protein but gluten free...
Stay strong.
Oh, and have you tried gram/chick pea flour yet? Supposed to be very high in protein but gluten free....
Clod, if gram flour ends up being approved, I have a variety of recipes that might be useful.
Hell, Clod. Try getting him to sip it with a straw and tell him its pop. It is fizzy. Put ice in it.
I shudder just thinking about it. I had to to drink a whole bottle once. I was nauseaus at the time. It was pretty hard to keep down.
Did anything come of your concern that they might want to put him on expensive proprietary supplements... or is that down the road a ways still?
Nothing so far--they have some of the GFCF magnesium citrate, and she showed me the exact product I was supposed to use, but she told me it was stocked at standard health food stores and it would be cheaper there.
Oh, and have you tried gram/chick pea flour yet? Supposed to be very high in protein but gluten free...
The All-Purpose gluten-free flour blend I use is primarily chickpea flour, plus some tapioca flour and I think a little potato starch. It's what I make his waffles out of, but apparently it's not high enough in protein for what he needs. I found hemp protein powder at the store, which she said was the best choice if I could find it. Pie, I would imagine my flour blend would work in any recipes calling for gram flour. I'm always willing to take recipe suggestions. I did try to make dosas, but they didn't come out so pretty. :)
Hell, Clod. Try getting him to sip it with a straw and tell him its pop. It is fizzy. Put ice in it.
I shudder just thinking about it. I had to to drink a whole bottle once. I was nauseaus at the time. It was pretty hard to keep down.
This is the kid who basically won't drink anything except water. The highest concentration of juice he'll stand is about 2-3 Tablespoons in a full glass of water (and that's exactly one flavor of juice, mind you.) Telling him it's a soda will fall on deaf ears, I assure you. :) Plus, we're supposed to keep the doses very small but steady throughout the day. An adult might take the whole bottle, sit on the toilet all night and be done, but that's too extreme for a kid so small--hence the once-an-hour rule, no more no less.
Wow. At least it's a short term regimen. :eek:
Keep grinding it out Clod. You are a brilliant Mom.
You are a brilliant Mom.
So say we all.
:2cents:
We are trained to disregard anecdotal evidence.
A mother, saying that feeding her kid different food caused a change in behavior in that kid, is NOT anecdotal evidence.
A responsible mother is a researcher performing a 24x7x365 study on that kid. The MD who sees that kid once a month, he cannot offer intelligent opinions on the daily happenings in that house.
The difference might be that a university researcher etc. is bound by legal/professional/ethical constraints to adhere to the scientific method, peer review etc. and that is as it should be. And we don't know what kind of crackpot this kid's mother might be--it could be one of those people who think the Bible will heal your terminal illness or whatever.
But I can tell you that in my household, I trust my childcare researcher (Pooka). When the doctors said our baby was "collicky" we were like "WTF is collicky?! That isn't even a medical concept, it just means they don't know or care to look into it." So Pooka journaled everything baby ate, and every event in baby's life, until we had the DATA to form a conclusion: baby had acid reflux. We had to tell the doctor what the problem was. The medication caused an IMMEDIATE and obvious difference in baby's whole outlook on life. A total PERSONALITY change, as she wasn't IN PAIN constantly anymore.
A doctor wouldn't know that. A doctor isn't with your kid 24/7 to see that.
Here is something else I know: Clodfobble has never done anything that suggests in the slightest that she isn't a supremely logic-driven individual. I know that. And if Clodfobble reports observations made in the laboratory of her domicile, then I have to accept that as legitimate research. In fact, I am bound by my belief in a logic-driven universe to do so--to NOT do so would require me to make an exception to some set of facts that I have already verified as accurate.
Earlier I was thinking about how when my brother was severely hyperactive as a kid, the doctor told my mom "Stop feeding him sugar." That helped. Would any doctor tell you that, today?
Earlier I was thinking about how when my brother was severely hyperactive as a kid, the doctor told my mom "Stop feeding him sugar." That helped. Would any doctor tell you that, today?
To be fair, I think a lot of the pediatricians have just given up because they don't think the parents are going to listen anyway. I mean come on, a "Nachos" flavor Lunchable has
more sugar in it than a pile of
20+ gummy bears. It is amazing what utter crap passes for food these days, especially for kids.
I think pediatricians these days know that it's a
myth: sugar doesn't actually cause hyperactivity.
It can cause skin irritation though.
I think the bigger culprits for hyper activity are probably the food colourings that tend to be found in a lot of confectionary (hence the term 'kiddi-crack' for smarties :P)
"Good research shows that if you follow that diet, perhaps 5% of young kids with ADHD got a little bit better," Dulcan tells WebMD. "But the problem with the Feingold diet is you can't keep a child on it because it eliminates things kids really like."
Yes, you just
can't take away those things they really like, because, you know, they
really like them. Discipline is
just mean, y'all. This doctor is a tool.
Those symptoms may cause a child to not feel well or disturb their sleep, which may indirectly affect their behavior.
Well, as long as it only
indirectly affects their behavior, that's totally different. Nothing you can do about that. :rolleyes: You know what? When I'm sick, I'm bitchy. The fastest way to stop me being bitchy is to
get well. Does the flu have a neurological component? No. Does it still make me bitchy? Yes.
Edit to add: Sorry, I'm more irritated than I thought and have more to say on this subject. So 5% of ADHD kids got better on the Feingold diet--how many got better in the control group? Was it zero? I bet the parents of those 5% don't give a shit that the other 95% need additional things to help them, they're pretty fucking happy that their kid is in the 5% that got better. You know what else has a success rate of anywhere from 2%-7%?
Chemotherapy.
But the problem with the Feingold diet is you can't keep a child on it because it eliminates things kids really like.
Yeah, and meth addicts really like meth.
Those symptoms may cause a child to not feel well or disturb their sleep, which may indirectly affect their behavior.
Yeah, and meth addicts are only knife-fighting with hallucinations of giant spiders because they haven't slept in sixteen days. So, when you think about it, meth isn't actually bad for you. And since they like it so much, can we really tell them they shouldn't be doing it?
My doctor wants me to do something for my heart, but I don't want to give up taste.
Face it, it's hard to be healthy.
Retards.
what's up with your heart?
I was quoting the shit I hear on food commercials... just strikes me as ridiculous things to say, similar to the tool doctor above.
"Our diet has changed more in the last 50 years than in the previous 10,000"oh right, sorry. The only commercials I ever hear are on an alternative rock radio station, where the closest they get to food commercials is beer and drinks with more caffiene than Starbucks ....and combinations thereof :lol:
I think pediatricians these days know that it's a myth: sugar doesn't actually cause hyperactivity.
As a bare fact I believe this is true. But I am shouted down by parents who KNOW their children get hyperactive sugar highs.
The article is wrong. It takes an example of one type of food myth and applies it across the board. Children are more hyped up by parties than sugar? Yes. Therefore, no food causes behavioural differences. Err, no.
Lazy, lazy journalism.
It's also part of the underlying attitude that children are
bad. They are no longer properly controlled. Our parents would have walloped us if we behaved like that. Damned liberals and their food-based excuses - just bring back the birch.
In this country the right wing press like that line. YMMV.
All other health issues aside, I believe that children
do eat too much sugar and mothers
have become more lazy about their children's diets. I'm going on what I see day to day, what I know about nutrition from 20 years of dieting. And I mentally applaud the mothers I see who feed their children rice cakes and carrot sticks. But they are in the minority.
The above does not apply for children in Minifob's situation - this thread is an eye-opener. It's made me check myself when judging the screaming kid who is ruining the one meal out I've treated myself to in a month. It does not change my mind about the two year old in a buggy eating a "share-size" pack of Wotsits at 11 o' clock in the morning.
Does the flu have a neurological component? No.
I've seen some studies that indicate the flu does directly afect the brain. The investigation started after some apparent sleep-walking-suicides of people (esp children) taking certain antiviral medications; the final results are not yet in.
All other health issues aside, I believe that children do eat too much sugar and mothers have become more lazy about their children's diets.
Thank goodness for all the hardworking fathers that take care of their kid's diets, then. :right:
Sorry, just a pet peeve coming out there. Bad parenting is usually blamed on the mother, but when you look, the father is usually either worse or completely absent. /rant.
As a bare fact I believe this is true. But I am shouted down by parents who KNOW their children get hyperactive sugar highs.
Those parents have been tested in blind studies. The parents go away, half the kids get sugar, the other half get sweetener. The parents come back. And they can't tell whether their kid has had the sugar.
You know what else has a success rate of anywhere from 2%-7%? Chemotherapy.
OK let me point out that the second quote on that page has turned out to be exactly incorrect since the statement was made (25 years ago), and the third quote directly contradicts the first one... why are they spoon feeding you this bullshit, and why the fuck are you eating it?
I mean, if you believe that, are you buying the shit they're selling, the whole point of the rest of the site? $89.95 colon cleansing powder! Better buy it... a dirty colon is bad for your health! How do they know it works? Not through unreliable "science" -- just try some and see if you don't feel
energized! If so be sure to invest $138.95 for their whole-body cleansing kit.
Cancer mortality has been cut right in half in the last 30 years. Life expectancy doubled in the last 150 years. Not through bullshit websites. Science.
SCIENCE!
[COLOR=Wheat]I dunno, I just wanted to say that.[/COLOR]
I have to say that as far as sugar goes, Aden clearly gets 'hypo' when he drinks softdrink. His behaviour changes almost immediately, and then he gets grumpy when he's coming down off that high. Simple solution for us is to water down his softdrink or simply not allow him to have it. We've also been working on getting him to be aware of his changes in behaviour so that he can regulate his own behaviour now that he's getting a bit too old to just say he can't have it (or will be soon anyway).
We pretty much don't have softdrink in the house though, and when we do, the kids mostly are only allowed to have it in the mornings. Never after 4pm or so.
Of course, it could be the preservatives and/or colouring they put in it too, but either way, softdrinks are frowned on here.
As for kids being allowed to get away with bad behaviour simply because they're hypo from sugar (if that's what their parents blame it on), then bring back the birch for the parents. They should a. not allow the child to have the food that they blame, and b. they should still be disciplining their child. Otherwise it's like saying, "Oh he likes playing with fire. We can't stop him even though we know he'll get burnt or possibly burn someone else" Duh! Yes you can stop him. You're his parents! It's your job!!!
SCIENCE!
[COLOR=Wheat]I dunno, I just wanted to say that.[/COLOR]
SCIENCE!Those parents have been tested in blind studies. The parents go away, half the kids get sugar, the other half get sweetener. The parents come back. And they can't tell whether their kid has had the sugar.
Hang on a second. They compared sugar to artificial sweeteners, another substance that is widely suspected to cause behavior problems? Did they ever compare sugar to nothing, or artificial sweeteners to nothing? For crying out loud, when most parents say "sugar" makes their kid hyper they're really talking about artificial sweeteners to begin with. How many shelf products (cake mixes, cans of frosting, sodas, candy bars) are made with real sugar anymore?
Cancer mortality has been cut right in half in the last 30 years.
Not according to the
American Cancer Society, who say that rates didn't even start going down until the early 1990s, and since then they have dropped 18.4% in men and 10.5% in women. And the majority of that drop is due to prevention (i.e. smoking rates are down and breast cancer screenings are becoming more common and more advanced,) not improvements in chemotherapy.
But whatever, cancer is not the point. I only brought it up to illustrate that there are many drugs out there with similar rates that are considered "effective." It was an especially bad choice because there are a wide variety of chemo drugs with varying effectiveness, and most of the time its only goal is to extend life a few more years, not cure the disease.
Life expectancy doubled in the last 150 years. Not through bullshit websites. Science.
And yet, the rates of a crapton of other things are inexplicably rising at an alarming rate, including but not limited to autism, Celiac disease, life-threatening allergies, rheumatoid arthritis, Crohn's disease, type 1 diabetes, and all types of thyroid disease. Science works very hard, no doubt, but it's not the God you want it to be.
And yet, the rates of a crapton of other things are inexplicably rising at an alarming rate, including but not limited to autism, Celiac disease, life-threatening allergies, rheumatoid arthritis, Crohn's disease, type 1 diabetes, and all types of thyroid disease. Science works very hard, no doubt, but it's not the God you want it to be.
I still challenge the notion of these types of diseases actually being on the rise as opposed to them having always been as prevalent but undiagnosed. The problem with this is of course, that it's very difficult to come to a solid conclusion.
I can say though, that in my family, we have a history of gut and digestive problems and it's only recently (over the last ten years or so) that a family tendancy towards Barretts disease is becoming apparent which is also coupled with several members of the family being diagnosed as Celiacs. It could be that because our diet has changed over the last 20 to 30 years and this has caused these family members with a predisposition to exhibit enough symptoms to follow up. Or that they're financial enough to go through the process of finding out instead of just putting up with it. Or it could be that something particular to my family's particular gene set doesn't like something that has been recently introduced to our diets.
Knowing my famly history though, I'm inclined to believe these two particular diseased have always been there. They just weren't diagnosed. That seems to be the concensus among the family also...and there are a lot of us, so it's not a bad study group.
Isn't it true the type 1 diabetes has been attributed to a generally more sedentary lifestyle with a high sugar diet in general?
That's type 2. Type 1 is autoimmune, when the body suddenly begins attacking the pancreas. It is unexpectedly triggered in childhood, and requires immediate and lifelong insulin dependence. Type 2 is when the pancreas is just tired and worn out after years of abuse, and can often be controlled with an improved diet and exercise.
Both types are on the rise, but of course everyone can see why Type 2 is going up--diet and crappy lifestyle, as you said. No one can explain why Type 1 is surging.
I still challenge the notion of these types of diseases actually being on the rise as opposed to them having always been as prevalent but undiagnosed. The problem with this is of course, that it's very difficult to come to a solid conclusion.
Challenge it all you want, there's scientific data to refute you, which even Undertoad acknowledged was convincing. Autism is the only one that's political; the medical community generally agrees about the rest. Type 1 diabetes and life-threatening allergies can't linger undiagnosed for years because they kill you, in ways that make it very obvious what you died from.
Hang on a second. They compared sugar to artificial sweeteners, another substance that is widely suspected to cause behavior problems? Did they ever compare sugar to nothing, or artificial sweeteners to nothing?
I don't have a cite.
Not according to the American Cancer Society, who say that rates didn't even start going down until the early 1990s, and since then they have dropped 18.4% in men and 10.5% in women. And the majority of that drop is due to prevention (i.e. smoking rates are down and breast cancer screenings are becoming more common and more advanced,) not improvements in chemotherapy.
Cancer is hard, because if you survive other problems you eventually wind up with it (1 in 2 probability). It's not what you die of, it's what you survive. You have to go by five-year relative survival rates for a close to accurate measure. These statistics have roughly gone from 50% you will die from this thing (in 1975) to 33% you will die from this thing (in 2004). A remarkable achievement in 19 years.
And yet, the rates of a crapton of other things are inexplicably rising at an alarming rate, including but not limited to autism, Celiac disease, life-threatening allergies, rheumatoid arthritis, Crohn's disease, type 1 diabetes, and all types of thyroid disease. Science works very hard, no doubt, but it's not the God you want it to be.
Science has identified them for you. It will take longer to fix the problems. Nevertheless it has a MUCH better success rate than shitty websites selling colon cleansers.
It is of course entirely possible that the website is both promoting a scientifically sound theory on diet and also trying to sell colon cleansers.
Science has identified them for you. It will take longer to fix the problems.
Absolutely, and I have faith that in the long run science will prevail. But just like cancer patients who are willing to participate in very experimental trials, I don't personally have the time to wait around, and neither does anyone else with a child diagnosed with autism or ADHD. I will balance unverified information on the internet against what common sense says is safe to try, and if it works for my kid, you better believe I will add my voice to those spouting the unverified information. Think of it as calling science's Tip Line, and giving them leads in the case.
Nevertheless it has a MUCH better success rate than shitty websites selling colon cleansers.
Nyuck nyuck nyuck... :)
It is of course entirely possible that the website is both promoting a scientifically sound theory on diet and also trying to sell colon cleansers.
It's entirely possible that an ice cream shop could provide you with something actually nutritious, but that doesn't mean you should eat all your meals there.
Think of it as calling science's Tip Line, and giving them leads in the case.
They go into greater detail on that in this video:
The Limits of Science
[youtube]DQaF4YXCXsc[/youtube]
Clod you are doing science on your child, period. You are using the scientific method: you're investigating to form a hypothesis, you're testing your hypothesis with experiment, you're analyzing the results.
You're only testing with a sample size of one, so your findings only apply to one, but they can provide new questions for new hypotheses for a broader population.
That is true UT, but I think the sample of one is, by far, her top priority. If what she does helps others with their research or ideas...... great.
Clod you are doing science on your child, period. You are using the scientific method: you're investigating to form a hypothesis, you're testing your hypothesis with experiment, you're analyzing the results.
You're only testing with a sample size of one, so your findings only apply to one, but they can provide new questions for new hypotheses for a broader population.
And while I'll admit I'm probably more rigorous than most (oh,
ow, my arm hurts bending all the way around like that to reach my back...) I would submit that many, many parents out there do the same thing with their children, carefully monitoring the results of their day-to-day activities--if for no other reason than to make our own lives easier. Nobody knows a kid like his mom, and if generation after generation of mothers say that sugar makes their kid hyperactive and poorly behaved... well, I know I'm not imagining what I see in
my kid, so I'm inclined to take their word for it when it comes to their kids, too.
Mothers take this shit seriously.
It's confirmation bias. Like the vast majority of people, the vast majority of mothers are not critical thinkers or trained scientists, and will make assumptions based on their perception and their understanding of the world.
But it turns out that chocolate doesn't give you acne; it turns out going out in the cold doesn't cause you to catch a cold. There are thousands of beliefs that mothers have, that we all have, that are wrong. There is evidence all around us, that we can't see because we don't allow it in our brains.
Science demands an even more critical view of the child than the mother's view. It will only include unbiased, double-blind, direct observations and will throw out intuition, emotion and previously-held beliefs.
Science demands an even more critical view of the child than the mother's view. It will only include unbiased, double-blind, direct observations
[gathered during a single one-hour snapshot of the kid's life]
and will throw out intuition, emotion and previously-held beliefs
[established through hours and hours and hours of direct observation gathered day after day, year after year, 24/7/365 by someone who is absolutely obsessed with finding the answer to that burning question that drives them on past sleep, past any concerns of themself and their own needs, that person who isn't concerned about grant money, or finding an academic bit of trivia, but who actually needs a real-world solution that will actually WORK and produce visible results] .
But, yeah, sure. Mothers don't know what's going on with their own kids. They're probably just "hysterical" ...
http://www.ncbi.nlm.nih.gov/pubmed/7963081
This study tested the hypothesis that commonly reported negative effects of sugar on children's behavior may be due to parental expectancies. A challenge study design was employed, in which thirty-five 5- to 7-year-old boys reported by their mothers to be behaviorally "sugar sensitive," and their mothers, were randomly assigned to experimental and control groups. In the experimental group, mothers were told their children had received a large dose of sugar, whereas in the control condition mothers were told their sons received a placebo; all children actually received the placebo (aspartame). Mothers and sons were videotaped while interacting together and each mother was then questioned about the interaction. Mothers in the sugar expectancy condition rated their children as significantly more hyperactive. Behavioral observations revealed these mothers exercised more control by maintaining physical closeness, as well as showing trends to criticize, look at, and talk to their sons more than did control mothers. For several variables, the expectancy effect was stronger for cognitively rigid mothers.
[SIZE=1]maybe you can study your own response if you eat a bowl of dicks[/SIZE]
UT, you're most certainly correct, but MAN!
:bolt:
Further research took on the challenge of testing sucrose and aspartame effects by comparing them to saccharin as a placebo. It was found that “even when intake exceeds typical dietary levels, neither dietary sucrose nor aspartame affects children’s behavior or cognitive function” (Murray 1994).
[SIZE=1]maybe you can study your own response if you eat a bowl of dicks[/SIZE]
I have heard that aspartame can cause problems. How is that a control?
D, they could have given them all sugar. The moms were the focus of the test, not what the kids actually did. The study hinges on the mothers' understanding of what was given to the children.
That's type 2. Type 1 is autoimmune, when the body suddenly begins attacking the pancreas. It is unexpectedly triggered in childhood, and requires immediate and lifelong insulin dependence. Type 2 is when the pancreas is just tired and worn out after years of abuse, and can often be controlled with an improved diet and exercise.
Both types are on the rise, but of course everyone can see why Type 2 is going up--diet and crappy lifestyle, as you said. No one can explain why Type 1 is surging.
Challenge it all you want, there's scientific data to refute you, which even Undertoad acknowledged was convincing. Autism is the only one that's political; the medical community generally agrees about the rest. Type 1 diabetes and life-threatening allergies can't linger undiagnosed for years because they kill you, in ways that make it very obvious what you died from.
Well just because UT is convinced is no reason for me to be also. I can think for myself as well. ;)
Although you may be right in saying that
the medical community generally agrees about the rest there is still no actual proof that most of these diseases didn't exist previously [eta: in the numbers that are now being diagnosed], and it's going to be impossible to ever know for sure simply because there isn't the historical data available.
While I understand your point of view and somewhat agree, I remain skeptical. That's all I'm trying to say.
Medical research is a massive industry with stakeholders from all arenas vying for the money offered by governments and other organizations as you know. I think it'll be another 50 years or more before we really know if what we
think is going on now actually is.
Something that has been gnawing at my mind also is the fact that so many kids have been diagnosed with certain behavioural issues and put on medication to regulate and control those issues, and yet the number of teen suicides is on the rise.
Logically, if we’re heading in the right direction with these things, shouldn’t that figure be falling?
I know mental health issues aren’t the same as physical health issues, but they’re linked.
Well just because UT is convinced is no reason for me to be also. I can think for myself as well.
Yes, but he's read
the evidence. Have you? There is historical data available, there is "actual proof." But you have to look at it to come to a conclusion.
I think it'll be another 50 years or more before we really know if what we think is going on now actually is.
Better hope to God we're wrong, in that case. If things are the way we think they are, and nothing changes between now and then, in 50 years we'd be looking at an autism rate of 78%. There's a reason people are shouting that we can't afford to wait any longer on figuring this out.
Something that has been gnawing at my mind also is the fact that so many kids have been diagnosed with certain behavioural issues and put on medication to regulate and control those issues, and yet the number of teen suicides is on the rise.
Logically, if we’re heading in the right direction with these things, shouldn’t that figure be falling?
I know mental health issues aren’t the same as physical health issues, but they’re linked.
I certainly agree that's a sign that they're doing it wrong. Medicating the kids is not the long-term answer. Finding the root of the behavioral disorders is.
Clod, he's read the book you recommended and that's great.
I'm not going to argue with you. I just wanted to express a point of view.
I wish you luck with your quest. I think you're doing a great job of informing yourself.
I think you're doing a great job of informing yourself.
But don't you see, that's the point. I didn't inform myself until I had to. Until it was too late. I had the exact same "it can't happen to me and my family" attitude that most people have. All I can do now is try to inform others.
Ask yourself this: if, God forbid, three years from now Max is diagnosed, how will you feel if you didn't inform
yourself? I know exactly how you will feel, because I feel it every freaking day. You don't have to reach the same conclusions I have, not at all. But every parent owes it to their children and themselves to honestly look at the evidence.
It's funny you would post that, because I was just this instant thinking the same thing. But I've been reading your thread and all the information you've presented, and I'm 10 times more informed than I was previously.
I thank you for that.
There are just some things that you're convinced of that I'm not, and possibly never will be. I don't have and surely can't be expected to have the same perspective as you Clod. Just for the record though, I'm not suggesting that what you're saying is wrong. I just don't believe we have enough evidence, and you have said yourself there needs to be more research done by independant sources such as government. I wholeheartedly agree with this.
We all need to protect our children.
What? Someone is actually thinking of the children?
No one can explain why Type 1 is surging.
All autoimmune diseases are on a rapid rise. Do a google search on the rise of autoimmune diseases. Lots of opinions. No proven answers.
Which is another reason why so many people are of the opinion that autism is also an autoimmune disease, rather than a neurological deformity that one is "just born with." Helps a lot with the treatment if you know what you're trying to treat. :)
Interesting, Clod. I didn't know that.
[SIZE="4"]Oh happy days!![/SIZE]
We nailed down the final piece of the puzzle in Minifob's unending diarrhea.
It was all because of the... coconut. We had suspicions, because when we gave him this new (awesome, wonderful, and now can-never-be-eaten-again :() coconut yogurt, his poop actually got worse. I wouldn't have thought such a thing was possible, but it was. But it's not like he's having coconut all the time, we mused to ourselves--oh, wait, what's that? There's coconut in the vitamins he takes every single day? Well, what an opportune time for the nutritionist to tell us to go ahead and stop all vitamins for two weeks so we can get a baseline on his pee and poop tests.
And sure enough, three days later we had real, solid poo! :turd: I was still leaving room for the possibility that it was something else in the vitamins causing it, but then we gave him a piece of his (old and stale at this point, but it was all we had) birthday cake, which had coconut sprinkles on top. Diarrhea came back. Hyperactivity came back. Now, a little over 48 hours later, all is well again. VICTORY IS MINE.
Thursday is sample collection day. Then we do the "proctologist's special," and then we can start him back up on some different vitamins that are not tainted with the aforementioned big hairy nuts.
In other news, a friend of mine's husband has been diagnosed with Celiac disease, and they're pretty sure the 9-month-old baby has it too. So I'm helping her get acclimated to her huge new lifestyle change. Now, if I can just get the other friend whose son has a number of behavior and digestive problems to put her kid on the diet, we'll be at an even 50-50 in the Sunday school class. :borg:
*cheers* yey. Any victory is sweet Clod. I know it's shit that that's another nice thing taken off the diet sheet. But damn, yuo must feel pretty good right now.
Oh, and hey Jim? Thanks for politely but firmly kicking my ass back in
this post. I needed it, and you were right. So thanks.
Oh, and hey Jim? Thanks for politely but firmly kicking my ass back in this post. I needed it, and you were right. So thanks.
He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real American in this house.
He's just trying to recruit anybody he can with his hippy rabbit-food propoganda. No thanks, mister! We eat real Americans in this house.
Fixed it for ya!
Anything new, Clod?
Well, we're still in the midst of his full intestinal cleanout. (I screwed up and gave him fruit just before the original lab sample collection date, so I didn't end up getting that taken care of until yesterday.) The poop is still a-flowing in a neverending torrent, but at least he doesn't mind the taste of the magnesium citrate, so I'm only nominally holding him down when I give it to him. We're up to 3 Tablespoons every couple of hours with no end in sight.
In other news, I got to be all bitter a few days ago when some insurance paperwork arrived in the mail. The neurologist (whom we had to go see as a formality back in April for an official diagnosis by someone qualified to do so) billed my insurance $500 freaking dollars for what was, no exaggeration, less than 15 minutes of time spent with us, 90% of which was me describing
again all the behaviors that I had just thoroughly described to his nurse. But because he's a "real doctor" and he's only charging people indirectly rather than straight out-of-pocket, no one thinks that's a fucking scam.
Yet when I pay less than $120 for over an hour of face-time with a biomedical nutritionist, and I walk away with no less than twenty pages of information specific to my son's current symptoms, including recipes tailored to his known sensitivities, plus then receive several followup emails from the office reiterating all the next steps we talked about at the visit, and replies to my direct questions about things that have come up while following those instructions in the last two weeks... oh no, those people are "so expensive" because they refuse to deal with insurance. I am
thrilled to pay Thoughtful House out-of-pocket. So far they have earned every penny of it. And it's so disgusting that people can't put two and two together and realize they
are ultimately paying for the ridiculous doctors' fees that go through insurance. Anyway, I'm done with that rant now.
We're going to start a cool new thing next week at the occupational therapy clinic. It's called
auditory integration therapy, and it's based on the same principal as all of the other sensory stuff we've been doing, that audio signals are not being interpreted correctly by the brain, and with the right input it can be retrained to function along normal pathways. You use this set of 20-30 CDs that sound just like normal elevator music, but they actually do funky stuff with specific frequencies being played at certain intervals--including the really high and low vibrations that most people can't even hear, but studies have shown the brain is still picking up on them. Ideally you listen to them through headphones, because that directly resonates the bones in the inner ear and makes the strongest connections, but some benefit can still be achieved if you play them over a speaker in a room, as long as the room is pretty quiet and the speakers are of high enough quality to play all the extreme frequencies. I assured our therapist that I do, in fact, have audio equipment up to the task. :) Unfortunately the discs are pretty expensive, since they're meant to be purchased by therapy offices rather than individuals, and I've been told that the copy-protection on them is extremely good. So we're going to do the full set over time in her office, and in the meantime I'm going to order a single disc for home use and see what kind of benefits we get from playing them through the speakers.
But the real reason I want one for home use is for Minifobette. She's inching closer and closer to having her own diagnosis, and one of her traits is definitely auditory defensiveness (as opposed to Minifob who was all about the tactile defensiveness, refusing to wear long-sleeve shirts or have his hair cut and such.) She screams and covers her ears at specific noises that aren't especially loud or grating, but they freak her out every time. Like when the water is running in the downstairs sink, or whenever this one character is talking on a particular Elmo DVD. He can be on the screen just fine, but as soon as he talks she throws her hands up and starts shrieking. Supposedly the misinterpreted audio signals are causing her to hear certain frequencies much louder than they actually are. Auditory Integration Therapy has been shown to help all kinds of autistic kids, but of course the greatest benefits are seen by those who have obvious auditory sensitivities. Anyway, it's going to be hard enough to get one kid to sit there with headphones on for any length of time, but two would be extremely difficult. So hopefully we'll get at least some benefit by just broadcasting it in the room while they're playing together.
But
man I wish I could see what those waveforms look like...
Edit to add: Oh yeah, crazy story about one of the series of AIT discs: the discs all have different music on them, since the music itself isn't really what's important, and a handful of them have nature sounds like whalesong and stuff. The people who developed these particular CDs said that at first, the groups of autistic kids they were testing them on were freaking out and hated the ones with dolphin sounds on them, and they got one of the older ones who spoke well to explain that the dolphins sounded "upset," that she could tell they were "locked up in prison." So they scoured audio libraries until they found dolphin sounds that were definitely recorded out in the ocean instead of from dolphins in captivity somewhere, and the kids did a complete 180 and said they liked the sounds now. The engineers swore they couldn't hear any difference between the two kinds of dolphins, but all the kids agreed that the ocean dolphins were "happy."
Edit to add: Oh yeah, crazy story about one of the series of AIT discs: the discs all have different music on them, since the music itself isn't really what's important, and a handful of them have nature sounds like whalesong and stuff. The people who developed these particular CDs said that at first, the groups of autistic kids they were testing them on were freaking out and hated the ones with dolphin sounds on them, and they got one of the older ones who spoke well to explain that the dolphins sounded "upset," that she could tell they were "locked up in prison." So they scoured audio libraries until they found dolphin sounds that were definitely recorded out in the ocean instead of from dolphins in captivity somewhere, and the kids did a complete 180 and said they liked the sounds now. The engineers swore they couldn't hear any difference between the two kinds of dolphins, but all the kids agreed that the ocean dolphins were "happy."
I'm tellin' ya, it's a superpower.
Wow - glad to hear the mag citrate is tolerable for him - I cried at the thought of you having to restrain him like that. And I'm sure you're glad that part is almost over!
Agree about "real doctors" vs. people like Thoughtful House - sounds like they know exactly what they're doing because that is ALL they do. I'd rather pay them for their true understanding than him for what he read out of a book who knows how long ago.
And love the AIT - it makes sense - hope it works with both of them! My mom's house cleaner (wow, that sounds snobby) has a son who is blind and autistic - my mom suggested piano lessons - my old piano teacher has raised her own autistic daughter for twenty something years, so she knew what she was getting in to - the most patient, kind, loving woman, who gets truly happy and excited when she sees half an ounce of progress - and the kid is THRIVING off of it.
Music really is the best invention ever.
How expensive are the audio cds?
About $50 each. Not bad, really, unless you're trying to get the whole set. For some of the programs, you're supposed to do the entire set in order, progressing from one to the next. Therapy offices usually buy these, because they're more intense and thus more effective. With others, though, all of the discs pretty much serve the same purpose, the only reason you'd want more than one is to mix it up and not let your kid (or their brain) get too used to one exact set of sounds. They say you can help drag it out by putting the tracks on random, plus we have a little visualization app on our DVR that will randomly select different themes and patterns each time a song comes up, so I think one or two discs will go pretty far for us. Plus, you're only supposed to listen for a maximum of 30 minutes at a time, and some parents say their kid gets awfully fidgety after about 15 anyway.
Wow - glad to hear the mag citrate is tolerable for him - I cried at the thought of you having to restrain him like that. And I'm sure you're glad that part is almost over!
Agree about "real doctors" vs. people like Thoughtful House - sounds like they know exactly what they're doing because that is ALL they do. I'd rather pay them for their true understanding than him for what he read out of a book who knows how long ago.
And love the AIT - it makes sense - hope it works with both of them! My mom's house cleaner (wow, that sounds snobby) has a son who is blind and autistic - my mom suggested piano lessons - my old piano teacher has raised her own autistic daughter for twenty something years, so she knew what she was getting in to - the most patient, kind, loving woman, who gets truly happy and excited when she sees half an ounce of progress - and the kid is THRIVING off of it.
Music really is the best invention ever.
Yup. To all of this, but especially to the music stuff.
It's funny, because coincidentally we just signed both kids up for a weekly music class over the summer. It's one of those "mommy and me" style things for preschoolers, except instead of incorporating gymnastics or art, this one focuses entirely on music. Both the kids enjoyed the demo class we attended, but I was still on the fence until I saw in their scheduler that they offer a class just for developmentally-delayed kids--including the use of
social stories and picture schedules, so it would seem they actually know what they're doing. That sealed the deal for me right away. My only complaint was that they hadn't advertised this anywhere that I had come across, it wasn't even mentioned in their own brochure. If they advertised this thing in the right places, I guarantee you they'd have enough people for 2-3 classes, at least. I emailed the information to our therapist in case she wanted to pass it on to any of her other clients, so hopefully it'll be a good chance to meet other parents in our area--confidentiality laws prevent us from meeting anyone through our therapist or school district, even if both parties are interested in doing so.
Aaaaand it's official. I have two children with autism.
Fuck autism.
Anyway, we had our next visit at Thoughtful House yesterday, the first one with the actual doctor, and it was just as enlightening and encouraging as the nutritional consult. We expected the stool tests to show yeast, and they did show a moderate fungal infection, but surprisingly they also showed a strong bacterial infection. I didn't realize that was possible, the two being natural enemies, but apparently they have either created their own equilibrium or are simply colonized in different sections of his gut. Furthermore, the culture showed exactly zero beneficial bacteria inside him, despite the fact that we've been giving him acidophilus supplements every day. So either my supplements are crap and dead on arrival (no way to know for sure, but it is a reasonable-quality brand,) or the infection is bad enough that the good bacteria have no chance of survival in that environment. So starting today he is on a prescription for a strong antibiotic, to be immediately followed by an antifungal drug. After that comes new, much stronger probiotics, and a collection of vitamin and mineral supplements to address the other nutritional deficiencies his tests showed.
But meanwhile, the tests also came back showing extremely high levels of lactic acid, but low-to-normal levels of a substance called pyruvic acid. Taken together, these readings indicate that he may have a relatively rare subset of autism (about 5-10% of the autistic population) that is caused by a mitochondrial disorder, which is genetic and incurable. (This would be the same type of autism that
Hannah Poling has, by the way.) So if the mitochondrial disorder is confirmed, it means it would be impossible for him to ever make a "full" recovery, i.e. one where he could stop taking his medicines or go off his diet. However, it's still possible he could have a "managed" recovery, where the continued medicine/supplements and dietary restrictions would allow him to be indistinguishable from peers. It all depends on how severe the disorder is and how it would manifest over the rest of his life--many people live with mitochondrial disorders for decades and don't even know it. At any rate, confirming it would at least give us a clearer picture of how to proceed with some aspects of his treatment, so we had another round of blood testing today, and should know the results in a few weeks. A word to the wise: blood draws on an incredibly strong 3-year-old are not advisable, especially when they have to take eleven damn vials. He knocked out the needles so many times, I had to restrain him for twenty minutes to get it all done. My muscles were shaking afterwards from the workout, I kid you not. But once he was free he got over it within two minutes, so that was nice.
Meanwhile, Minifobette has started her intake procedures with Thoughtful House, and will get her own occupational therapy sessions once Minifob starts school in August. Whee.
So... Hanna Poling's parents won their vaccine injury case - with the CDC admitting that because of her mitochondrial disorder, she was injured by vaccines and developed autism... although I don't think they have decided on the monetary 'award' yet (but Bailey Banks (mmr injury) will receive over a million dollars over his lifetime for the care he will need because of vaccine induced ADEM leading to autism).
What does that mean for you guys?
Fuck autism, cancer, coma...
Edit: Are you getting your probiotics out of a refrigerator at a popular health food store that goes thru stock quickly - and checking for the freshest date? That shit dies quickly in the bottle...
Are there any hippy farms around you that make goat yogurt? That might be the better route despite the 'dairy' connection... actually a lot of people believe that the milk sensitivity thing is limited to only some types of cows ie. holstein bad / gurnsey good.
It means if we want to, we can put together the medical evidence (assuming the mitochondrial disorder is confirmed) and join the 5,000+ other pending mitochondrial cases on the Vaccine Court's docket. I'm not going to hold my breath on getting to the front of the line though.
Is a class action inappropriate because of the level of documentation needed?
It means if we want to, we can put together the medical evidence (assuming the mitochondrial disorder is confirmed) and join the 5,000+ other pending mitochondrial cases on the Vaccine Court's docket. I'm not going to hold my breath on getting to the front of the line though.
I know it's the probably the last thing you want or have time to do.... but their care is gonna get [more] expensive. The time will pass anyway...
Oh bollocks, fobble, that's and extra kick in the knackers, so to speak. You sure do have your work cut out for you. You're doing splendidly so far, though, those are two lucky kids.
Is a class action inappropriate because of the level of documentation needed?
I honestly don't know. I know "Vaccine Court" really is its own independent body, so the same civil lawsuit rules don't apply.
I know it's the probably the last thing you want or have time to do.... but their care is gonna get [more] expensive. The time will pass anyway...
Oh, we'll look into it, but I don't know what's actually involved. Maybe it's as simple as filing documentation, or maybe we'd actually have to hire a legal representative to argue our case, or something. Honestly, with Minifob there wasn't an obvious, demonstrable regression, his symptoms were already showing up by 3-6 months old. With Minifobette, on the other hand, there was a distinct loss of speech and social skills at 12 months. So she might have more of a case than he would anyway.
Edit: Are you getting your probiotics out of a refrigerator at a popular health food store that goes thru stock quickly - and checking for the freshest date? That shit dies quickly in the bottle...
Are there any hippy farms around you that make goat yogurt? That might be the better route despite the 'dairy' connection... actually a lot of people believe that the milk sensitivity thing is limited to only some types of cows ie. holstein bad / gurnsey good.
The new probiotics are refrigerated from the start, yes. The old ones supposedly only had to be refrigerated after opening, which never made sense to me, but that's what they said... They actually sell goat yogurt at our grocery store, but Minifob reacted poorly the first time we tried it. They say he might eventually be able to tolerate it after more time. I've got to say, though, the stuff tastes pretty tangy. He wasn't a fan. If I wanted to go really hardcore I could buy a yogurt machine and use my own starter cultures to make almond milk yogurt...
You can make yogurt from almond milk? How much is a yogurt machine?
My understanding is you can make "yogurt" out of any liquid that can be thickened and has a decent sugar content to feed the starter bacteria. Yogurt makers are about $40 to $60 bucks depending on the brand, but the real work is getting the containers completely sterilized before you start so you don't grow nasty bacteria alongside it. I know Griff's wife makes goat yogurt from their goats, maybe she would have some pointers. :)
Hi Clod, The yogurt recipe I have for goat milk yogurt is a vanilla yogurt with sugar and vanilla so it tastes yummy. It also has non-fat dry milk to help it get thick. You can probably skip this part if you don't mind it a little runny. We don't know how well the almond milk will set anyway.
I don't know if there's a milk-free starter. I just use store-bought cow's milk yogurt. It only takes about 2 tsp of starter for a gallon of yogurt so it's not much dairy. Or, assuming you get a successful batch of non-dairy yogurt, you can use a little of the first batch to start the second batch and that will be virtually dairy-free.
As far as cleaning the jars goes, I probably don't do as well as I should but it wouldn't take much to do better. I clean the jars with hot, soapy water then pour in boiling water (while they're still hot so they don't crack) then pour it out using a canning grabber so you don't burn your fingers. To improve on that, put them in a stock pot of water and boil for 10 miinutes or so just before putting in the yogurt mix and sealing.
To grow the culture, I fill a canning pot with 90 degree water and put the sealed jars in. (The yogurt recipe has you heat up the yogurt mixture to something like 120 so the contents will be close to 90 degrees by this point). Then put it in the oven with the light on and the door propped open a little. It's a little tricky to find the right environment to keep the temp close to 90 degrees (I think 90 is the right number). That's where the yogurt makers earn their keep. The recipe says it takes 4 - 6 hours but mine seems to take 8 - 12 hours to set up. It will set up a little more after it cools off in the fridge too. Now, if we've already decided that it probably won't get thick, I'm not sure how to tell when it's done. It'll probably get a slimy texture like, um, runny yogurt. And taste a little tangy.
I don't have the recipe with me but if you want, I can post it when I get home. It's probably similar to most yogurt recipes. Let me know how it goes.
I just found this on another site: (Is it our Shawnee?)
"THANKS to Nancy LC on another Board , a recipe is available the following are her words of wisdom:
Non-dairy yogurt Recipe
Ok, I gotta post this because I'm getting asked how to make this in several forums and I keep repeating the instructions. Instead, I can link to this!
I have a Salton Yogurt maker that makes 1 quart of yogurt, so this recipe fits that yogurt maker nicely.
Here's the steps one takes for making anything into "yogurt".
1) Kill the bad bacteria in your starting medium (milk, coconut milk, whatever). For non-milk products you can usually just boil it.
2) Add gelatin or pectin if you want it to get a yogurt like consistency, otherwise, if it isn't milk, it'll have more of a kefir like consistency. A thick liquid.
3) Add your bacteria food (something with sugars in it, like 1Tbl honey, pureed pineaple or banana). Mix well.
4) Cool to 90-100 degrees.
5) Add culture and incubate for 4-24 hours.
6) Pour into a clean container and refrigerate until it sets up.
================================================
__________________
~Shawnee
MAINTAINER since Aug. '01 "
Thanks, Pete. I suspect the almond milk will set pretty well, because it gets thick in the container unless you regularly shake it up. I'll have to look into the best starter culture to use--maybe I can just open up one of our current probiotic pills and dump it straight in? I have found that almond milk gets kind of brownish-grayish when you cook it, so I may end up using hemp milk or Dari-Free (powdered potato milk) instead to keep it from being so darn unattractive.
In other news, I am mailing the following letter to our pediatrician today:
Dear Dr. _______,
I have a lot of lingering frustration over things I didn’t say at our recent appointment, both because I was too tired from the earlier labwork with [Minifob], and I was in a hurry to let my mother get back to work. Let me start off by saying I completely understand your skepticism of the biomedical treatments for autism, and skepticism is an excellent trait in a doctor. You do not want to be treating your patients on hunches and faith. But at the same time, it’s hard not to take it personally when you effectively insinuate that the things I am telling you I see in my son must be either coincidence or imaginary. I assure you, I am giving every treatment offered by Thoughtful House the same careful consideration I would give to any medical treatment, weighing the risks and evidence available. I am being rigorously objective in my daily documentation of both [Minifob's] and [Minifobette’s] symptoms, and whether each one improves or not with any given treatment. What’s more, I am taking videos, so that others can judge the difference for themselves:
Before the GFCF diet: http://www.youtube.com/watch?v=10XofXCoctw
After the GFCF diet: http://www.youtube.com/watch?v=BLnWlLO8p6A
I know that when you repeatedly say, “We really like M*****,” (his occupational therapist at ***** Rehab,) what you are really telling me is, “I approve of occupational therapy as a treatment, and it has studies to back up its effectiveness,” and the implication is that you don’t approve of the biomedical protocol (despite the fact that it, too, has many recent studies to back up its effectiveness, and you have biomedical books on autism on your own shelf in your exam room.) I know that you are not actually endorsing M***** herself, because the truth is you don’t know M*****—if you did, you’d know that she strongly supports the biomedical treatments, she knows that they make her own sensory integration treatments far more effective, and she has been particularly blown away by the immediate and complete change [Minifob] showed when I implemented the diet as strictly as I have (he and [Minifobette] are not just gluten-free and casein-free, by the way, but also following the Feingold rules of no artificial colors/flavors/sweeteners or preservatives.) Within two weeks, M***** was asking me to write down all my resources and tips for the diet so she could give it to her other clients who were struggling with implementing it. In fact, [Minifob’s] sensory issues, which improved only very slightly with therapy from January through March, completely disappeared after going on the diet, and now we are only keeping the regular OT appointments as social interaction practice for him, and in anticipation of [Minifobette] needing the sessions for herself once [Minifob] starts PPCD in the Fall. Because again, I know occupational therapy is effective at what it does, so I know [Minifobette] will definitely need some OT despite already being on the diet. But M***** and I both also know that the therapy will be quicker and more effective, because I am treating the other aspects of her autism simultaneously.
In addition, everyone involved in [Minifob's] PPCD program was also in favor of biomedical treatments before they ever met us, including the school psychologist and all four professionals who performed his assessment. When I told [Minifob's] teacher that he is on the GFCF diet, she said, “Oh wonderful, that means he’ll be one of my good kids.” They all know this stuff works because they work with autistic children every single day, and they know who is getting better and who isn’t. [Minifob] is not just “a lot calmer,” as you have acknowledged—he leapt straight from gestures and echolalia to 3-4 word spontaneous manding, with no learning curve in between; he started making eye contact with strangers; his physical and visual stimming are way down; his tantrumming is down to the level of a normal three-year-old, and the causes of those tantrums are now logical (because I have told him “no,” for example, rather than because he can’t get his cars to line up exactly right.) In the last two months he has already met half of his IEP goals, before ever setting foot inside the classroom. The one thing that has gotten worse is that the overall quantity of his echolalia has skyrocketed, but I suspect that is because he is now eager to talk, but hasn’t learned the social contexts of conversation yet.
I know that you have particular distaste for the idea that a yeast infection is somehow the root of autism, and rightly so—there is no one root of autism for even a single autistic child, let alone all autistic children. Yeast infections are championed by dirty hippies as the cause of everything from toe pain to cancer, and they clearly are not. But that doesn’t mean there is no such thing as a fungal infection—my husband has chronic ringworm on his legs, and it is treated with anti-fungal creams, and of course vaginal yeast infections and infant thrush are very real maladies. The truth is fungal infections are just one common comorbid condition of autism, along with many other gastrointestinal problems. Not all autistic children have chronic digestion issues, but mine do, as I have mentioned many times. And as it turns out, [Minifob's] stool and urine samples didn’t show a significant yeast infection, so the doctors at Thoughtful House obviously are not recommending that we treat as if he has one. What they did show is a strong Clostridium bacterial infection (another common comorbid condition, but one that doesn’t happen to have been picked up as a battle cry by dirty hippies, so it doesn’t get the same negative association.) Perhaps your position on this information will be 1.) the test results were inaccurate or falsified (again, they came from your own preferred lab down the hall,) or 2.) the infection is real, but it has no association with his autistic symptoms. But even if that were the case, why wouldn’t I want to treat an infection in its own right? I’d like my son to stop having chronic loose stools, even if his autistic symptoms don’t improve one bit. However, at every step of the way, when we have adjusted any aspect of his food intake or digestion, his autistic symptoms have changed as well (either for better or for worse; it is often a case of trial-and-error, not steady improvement,) so I am personally quite confident that treating his intestinal infection with an antibiotic will be no different. (I know you have suggested Lactobacillus acidophilus as a first step for both [Minifob's] and [Minifobette's] digestive problems—and that is also something recommended by the doctors at Thoughtful House—but he has been taking multiple doses daily for months, yet his labwork showed zero colonization of beneficial bacteria.)
The party line is that “early intervention” is the key, but what does that actually mean? It’s early, I’m ready to intervene—what specifically do you suggest I do? We had to wait four months to see the pediatric neurologist, and his assessment was, “Yes, [Minifob] is autistic. Come back when he’s 4 or 5 years old, and I can put him on antipsychotics.” How is that early intervention? Similarly, the allergist we were referred to for [Minifobette] basically refused to do any testing on her at all since she was so young and hadn’t had an anaphylactic reaction to warrant it. It was only by sheer demand on my part that he gave her a skin prick test for a total of three foods before we were ushered out. He, too, suggested we come back when she is several years older. Do you think his attitude will have changed in the last six months? Meanwhile, the waiting list for ABA therapy is over a year long, and I cannot afford $40,000 a year regardless. Occupational therapy has already outlived its usefulness for [Minifob], and I am confident that [Minifobette] will only need a few months of it herself. So what other options does that leave me? So far, not a single treatment advocated by Thoughtful House has had any risk at all—and so far, we have seen extremely positive results with every step. I’m not sure what it is that you want me to “be careful” of. If you think I am being given false hope, all I can say is the results have been quite real so far, and I have the behavior logs and the videos to prove it. If you are afraid I will be scammed out of money, you should know that insurance is reimbursing me at the standard out-of-network percentage, and what’s more, their pricing is at a fair, up-front hourly rate, which equates to an actual hour of face-time with the doctor, and is quite a bit less than, say, the pediatric neurologist, who billed my insurance $500 for less than 15 minutes of time, 90% of which was me re-describing the same symptoms I had just given in great detail to his nurse. If you are afraid we will end up agreeing to something more risky like chelation drugs, I will admit that it is a possibility in the future, after careful consideration of the prerequisite lab test results, and whether Thoughtful House has continued to earn our trust with successful treatments. But a quick search of antipsychotic drugs shows there are far more known side effects and risks for those treatments, especially in children, and the neurologist was apparently ready to dole them out like candy to my son without any additional information or examination of him. So who should I be more careful of, again?
As for whether [Minifob] may or may not have a mitochondrial disorder, my question would be: do you think the tests showing extremely high levels of lactic acid (coupled with low pyruvic acid) were just wrong, or is it merely that you think the doctors at Thoughtful House won’t know how to properly treat the condition if the additional testing indicates he does have it? “Those guys,” as you referred to them, are all real medical doctors, not osteopaths or naturopaths. They came from a variety of other medical backgrounds, including surgery, gastroenterology, etc., and were all compelled into autism treatments because they have autistic children. Did you know that? Almost every single person who works at Thoughtful House in any capacity has at least one autistic child. They have each been compelled to completely redirect their careers, and focus all their efforts on studying, refining, and providing the autism treatments that they personally witnessed working miracles in their own children, just as I have been compelled to tell everyone I meet about the dramatic changes I have seen in [Minifob]. These changes are neither coincidental nor imaginary, and multiple professionals outside of Thoughtful House have agreed with me on that. It is a travesty that legitimate medical work has gotten tied up by the inherent politics of the situation. In fact, I have volunteered to participate in several of their currently-running medical studies, even though it means [Minifob] may sometimes receive a placebo at first and delay his treatment by a few weeks, because I know published studies are the only way to prove what everyone in that office, everyone in the PPCD program, and all the occupational therapists at ***** Rehab already know to be true. In twenty years, the biomedical protocol (the genuine set of proven treatments—gastrointestinal, immunological, and toxicological—not the silly anti-yeast, cranial-sacral, balance-your-chi nonsense that people mistakenly associate it with) is going to be the standard accepted treatment for autism. When [Minifob] was first diagnosed you were adamant that I seek out “good sources of information” (and of course I knew even then what the ‘bad sources’ were that you wanted me to avoid,) such as Autism Speaks. Are you aware that even Autism Speaks now advocates the use of the GFCF diet? As the evidence accumulates, things necessarily change. Medical knowledge is a constantly evolving thing: we laugh at what we thought was true thirty years ago, and it is utterly foolish to think we won’t still be laughing at many of today’s assumptions in another thirty years.
Please understand I’m not angry—you are a good doctor, and I have no intention of leaving your practice in search of someone who already agrees with me, because that would defeat the purpose. Instead I plan to demonstrate to you that I’m right about this, however long that may take. I look forward to sharing my children’s continued improvement with you.
Sincerely, [Clodfobble]
[/QUOTE]
That's the best bitch slap I've ever read! Your intelligence and abilities are boundless. :notworthy
I think we need to replace the phrase "kick 'em in the c*nt" with "Clodfobble 'em". WTG
I just hope she reads it. I made myself cut out several bits about her personal failings, but I'm afraid there's still a decent chance she's going to toss the whole thing in the trash after the first few sentences. I actually included a photo of the kids to try to counteract that temptation, because it's a lot harder to just throw away a picture of cute kids, right?
God, and then I saw
this today. Made me cry. This woman says a lot of what we're all thinking but never say, if you're curious.
Oh shit, but somehow I missed
this!! As of June 10th, just one month ago...
Connecticut is now the thirteenth state in the country to enact comprehensive autism insurance reform.
The Connecticut law requires insurers to provide coverage for behavioral treatments, including Applied Behavior Analysis (ABA) therapy, of up to $50,000 for a child who is less than nine years of age, $35,000 for a child who is at least nine years of age and less than thirteen years of age, and $25,000 for a child who is at least thirteen years of age and less than fifteen years of age. ABA therapy is recognized as an effective, evidence-based treatment for children with autism.
My insurance is headquartered out of Connecticut (which is the only thing that matters, not what state you live in.) This is me. We are now covered. Fuck,
that's why my insurance suddenly started reimbursing us for the Thoughtful House claims, when I had been told awhile back I was welcome to submit the forms, but it wasn't gonna happen...
Hey, could y'all do me a favor? Go
here, and just do a quick entry of your name and click Send. This will send a fax to Nancy Pelosi's office urging her to include autism in the H.R. 3200 healthcare bill, and basically make a nationwide version of the Connecticut law I just talked about, superseding the remaining 37 states that still don't cover autism treatments in one fell swoop. Or, if you really feel like being proactive, you can call her at (202) 225-0100 and bitch her out for specifically excluding it in the first place. :)
Done, Clodfobble! And keep up your good work, to think if everyone were as proactive as you.
We are now covered. Fuck, that's why my insurance suddenly started reimbursing us for the Thoughtful House claims,
when I had been told awhile back I was welcome to submit the forms, but it wasn't gonna happen...
But of course, you submitted them anyway. And eventually, they started paying them. And why? because of people like you.
Clod you're amazing. You really are. Wtg girl.
Done, Clod. :thumbsup:
It wouldn't accept my address. We get that now and then. We're about to be re-addressed for 911, so maybe that'll work.
I got a "thank you" email from Autism Advocacy that ended with...
P.S. You may receive a response from Speaker Pelosi's office about sending your message to a different email address. Please know that we are keeping on track and continuing to send these emails to her! Thanks!
I'm not sure how I'm suppose to respond if I do get that message from Pelosi?
Guess I'll worry about it, if and when, it happens. :cool:
I just figured do nothing: sounds like the organization takes care of getting them to The Nance.
Man, what a smack-yourself-in-the-forehead moment I've had. You think you're so good at this, you've totally settled into the diet and you completely have a handle on it... Okay, so, both the kids are on calcium supplements since they're not getting any dairy. They make these little gummy bear vitamin things for kids these days, but Minifob refused them for some reason, so he gets a liquid that we can administer against his will rather than something he has to voluntarily chew. But Minifobette liked them, so that's what she's been taking.
The label says:
This product contains no artificial colors, flavors, preservatives, wheat, gluten, milk, eggs, peanuts, tree nuts or soy.
Great, right? Nope. Notice what's missing from that list? Artificial
sweeteners. Sucralose is the number one ingredient. So having realized that, I took her off them, more out of curiosity than anything.
On her second day without them, she began nodding and shaking her head yes and no for the first time. The day after that (today,) she said her very first word ("bear") since losing all her words three months ago (none of which, incidentally, were "bear.") As an added confirmation, Mr. Clod and I have a running agreement that I won't tell him when I experiment with the kids' diets/supplements/etc., and he will tell me when he thinks the kids are being particularly good or bad, as an objective comparison to how I think they're being. He has mentioned three times in the last two days that she's being remarkably interactive and playful.
Even when you know it's real, it's so hard to believe it sometimes. Now I've just got to figure out what to do with a 3/4ths full economy-size jar of calcium gummy bears.
Now I've just got to figure out what to do with a 3/4ths full economy-size jar of calcium gummy bears.
You could give 'em to a visiting family of dwellars? Don't let the kid see, though, since she's already asking for her "bear" back.
:lol: I didn't even think about that. She's not regaining her speech, she's just jonesin'.
You can have my whole stash of gummy bears and a lot of other random half-used vitamins when you come to Austin.
You're right, it doesn't. But even the most rigorous of scientific testing can only prove very strong correlation, never causation. I could give her the gummies back in a few weeks and see if she regresses, but I'd only be doing it to prove a point to you and risking my kid's brain isn't worth that.
I know you think I've gone off the deep end, but I'm not demonizing the items themselves--if I believed these things affected all children across the board, I wouldn't be offering them to Flint's kids, now would I? Incidentally, Minifob's allergy blood tests will be back in soon. I'll let you know if they confirm my personal finding that he has a correlated behavioral reaction to coconut, peaches, oranges, cashews, peanuts, egg, and tomatoes. (And just for the record, I'm predicting Minifobette's blood tests, when she gets them in a few months, will show a reaction to pears, peaches, oranges, cherries, mango, kiwi, and pineapple.) We'll verify my observational testing methods together.
You know, I've always had mild ADHD symptoms, and my mom is convinced i've got super-mild aspergers (i've got an uncle who is majorly aspergers among other things), and i've always been a majorly picky eater... i oughtta do some research into all this diet-affecting-brain some myself.
(And just for the record, I'm predicting Minifobette's blood tests, when she gets them in a few months, will show a reaction to pears, peaches, oranges, cherries, mango, kiwi, and pineapple.)
Forgot one after the edit time window: annatto.
Correlation does not imply causation
So, do you think she's doing something wrong based on incorrect assumptions? What would you be doing Tony? Based on what information?
In fairness, it's entirely possible it's a different ingredient in the gummy bears that she has a problem with. But I have absolutely no doubt at this point that the gummies were no good for her.
Correlation does not imply causation
So, do you think she's doing something wrong based on incorrect assumptions? What would you be doing Tony? Based on what information?
Haven't you heard? The best thing to do is take no actions, at all, ever.
Especially when based on careful, rigorous observation.
Now I've just got to figure out what to do with a 3/4ths full economy-size jar of calcium gummy bears.
I bet they'd be great for bath tub art. Dump them in the water, let them warm up and dissolve just a little, then press on the the tub sides and backsplash in interesting patterns.
I'm saying she doesn't know whether the gummi bears had an effect. She may have no other alternative than to discontinue things after which an effect is shown. But she has done what I thought appropriate; she fairly backed off of
Even when you know it's real, it's so hard to believe it sometimes.
"Correlation doesn't prove causation" means you don't know it's real and you mustn't believe it.
I guess sometimes it comes down to whether you've got "something to prove" or you're just trying to live your life and do good things.
I noticed a correlation between the times I ran out of tinned tripe and so fed Pilau just on dry kibble, and the times he did and didn't have the shits.
I generally don't feed him with tinned tripe now. He's much better. Correlation doesn't necessarily imply causation, but nor does it necessarily discount the same.
My daughter said two more new words this morning, UT. One of which was to tell me that she had "pooped," which is even more developmentally significant than just naming nouns. Remember that before I took her off the gummies, she had not spoken a single word in three months.
This means that on a standardized developmental speech scale, she has gone from a 9-month-old to a 15-month-old in the last two days. What do you think, can I safely say the gummies were having an effect now?
If you (and others) didn't have such strong evidence, and if you had never told me, I would never in a million years have guessed that food could have such a profound impact on mental health. I really might start listening when people tell me I should eat right (/eat something healtier than grease, starch, and cheese)
No. Correlation does not imply causation. It's a data point, not proof in any sense.
Understanding this principle is one of the historical keys to modern science btw. Understand that I'm not saying the gummis don't have an effect. I'm saying the effect is not proven.
You have correlated a change in behavior with a rather small change you made a few days ago. Less than a quarter teaspoon of artificial sweetener. What of the changes you made two weeks ago? Last month? Not all changes will show immediately; if dietary changes are of fat-soluble substances, they will stick around in the body for quite some time. (Sucralose is considered not fat-soluble, so that is a point in favor of causality.)
Are all behavioral changes necessarily overnight? What to make of the time before the gummis arrived?
The human body is a pretty complex thing. Michael Pollan points out that thyme, if taken in large quantities by itself, promotes cancer; but in small quantities WITH other foods, helps prevent cancer, because it contains large amounts of different anti-oxidants. He points out that our obsession with single points of nutrition is actually unhealthy, and it's the complete diet that must be looked at. The simple "X is good for you/Y is bad for you", which our culture currently promotes, is not enough explanation. Perhaps X and Y combined is a natural and beneficial diet.
BTW, this is a relevant cookie:
If a person (a) is poorly, (b) receives treatment intended to make him better, and (c) gets better, then no power of reasoning known to medical science can convince him that it may not have been the treatment that restored his health.
-- Sir Peter Medawar, The Art of the Soluble
Toad, you're starting to sound like TW here. "If you don't test every widget with a multimeter you are only guessing" or some such.
It is a valid scientific method to change one input variable and see what happens to the output. That's what Clod's doing with her kids diet.
Causality only seems like a minor point dar. It's the whole point. If anyone can find one trained scientist that agrees with Clod that she has demonstrated proof, bring them.
Meanwhile I agree with Clod that she should avoid the gummis, and that she can't reintroduce them in an attempt to prove causality.
After having a mild heart attack, my Dad started drinking his coffee black. He would swear omitting cream & sugar from his coffee caused him to lose weight, completely disregarding other changes to his diet and lifestyle.
But, in Clod's case she has been closely monitoring every god damn molecule that her kids ingest, for a long time. She's also been monitoring output and behavior.
So unlike my Dad, and unlike UT's examples, Clod has valid results of what works for her kids. And that's what this is about, not medical research, just what works for her kids. Go Mom. :thumb2:
Tony is right about correlation != causation, etc. etc. etc.
But Clod knows her baby. And if she has to eliminate 5 things that might be causing a problem to get one real problem -- maybe that's worth it? To get her baby talking again?
If anyone can find one trained scientist that agrees with Clod that she has demonstrated proof, bring them.
See, this is where you're getting TW-like. AFAIK, Clod is not intending to submit any papers to the NEJoM. She doesn't need to be 100% sure that the vitamins are bad for her kids. If she's pretty sure, she's going to yank it.
If you've got a dozen lab rats (workers), you can provide proof. When you're one mom, you're just looking for improvement. Clod's making pretty much everything her kids eat from scratch. Do you really think it would be a good use of her time to do double-blind tests on her kids vitamins?
And now I've just made myself start missing LabRat.
There's just no benefit to suggesting that she should be constantly second guessing herself. It's non-constructive criticism, really. Of course she could be wrong... and it seems like she'd pick up on that not too far down the road, even without a double-blind study and some peer review...
See, this is where you're getting TW-like. AFAIK, Clod is not intending to submit any papers to the NEJoM. She doesn't need to be 100% sure that the vitamins are bad for her kids. If she's pretty sure, she's going to yank it.
If you've got a dozen lab rats (workers), you can provide proof. When you're one mom, you're just looking for improvement. Clod's making pretty much everything her kids eat from scratch. Do you really think it would be a good use of her time to do double-blind tests on her kids vitamins?
And now I've just made myself start missing LabRat.
THIS. She spends every waking moment of her day trying to get both of her kids to have ANY semblance of "normalcy" she can even begin to approach. If an expiriment appears to work for her, so be it.
E-mail sent to Pelosi Clod.
You are an amazing woman, and I for one am very proud of the strength you continue to maintain, and the strides you continue to make. Hugs to you.
I'd like to hug her too, but Mr Clod might not understand... worse yet, he might. :blush:
I am saddened by these replies, but I'll take them at face value as my problem, and will no longer post in the thread.
Dear Autism Advocate,
HEALTH CARE REFORM UPDATE: Things are moving VERY quickly in the House now with health care reform and we need you to be ready to act at a moment's notice and give it everything you've got!
Last night, The House Energy and Commerce Committee passed an autism amendment offered by Congressman Mike Doyle (D-PA), Chairman of the Congressional Autism Caucus and member of the House Energy and Commerce Committee, to H.R. 3200, the America's Affordable Health Choices Act of 2009 - the House health care reform bill that is currently undergoing markup in the Energy and Commerce Committee. His amendment would set up national training initiatives on autism.
We anticipate that Congressman Doyle will introduce a very important amendment to the bill tomorrow that will seek to end autism insurance discrimination once and for all. When that happens, we will need you to be ready to call following our direction as fast and furiously as possible. We will need to make a loud statement that want this amendment to be attached to the bill.
Our children deserve appropriate healthcare that provides them with access to the medical treatments and therapies that can help them live more productive and fulfilling lives. Keep every one of them in mind as we make our way through this next stage in the process. They are counting on you!
Stay Tuned!
Elizabeth Emken
Vice President, Govenment Relations
Autism Speaks
I am saddened by these replies, but I'll take them at face value as my problem, and will no longer post in the thread.
Oh stop pouting. You're talking about the principles and procedures of valid medical research, while Clodfobble, not having the time or resources for that, is trying to do the best she can for her kids, RFN. :p
I am saddened by these replies, but I'll take them at face value as my problem, and will no longer post in the thread.
Just like you, I support what Clodfobble is doing as a mother for her own children and am blown away by her dedication. One of the main purposes of this thread is to show support for her and what she's doing, and I absolutely support her. I have a strong gut feeling that she is right. But I also support your point that scientifically speaking, she hasn't proven anything. I think you are a valuable contributor to this thread because you bring an impartiality to it. It needs that.
I have no idea how she's been taking your posts, but I haven't had the impression that she was hurt by them. She can speak up if she was. You shouldn't bow out.
I am saddened by these replies, but I'll take them at face value as my problem, and will no longer post in the thread.
Please don't go away, Undertoad. I never got a chance to kick you in your stupid balls.
You can kick me in a different thread.
I liked your cookie. mmmmmm
You can kick me in a different thread.
I dunno, Toad. Getting kicked in the thread really hurts.
You can kick me in a different thread.
Clod knows you support her. Don't disconnect on this.
Sorry Toad, didn't mean to make you sad. I totally agree with your point, I just feel like you're trying so hard to prove your point in a thread that I don't think is about proving a point - I think it's more about hearing how Clod's trial and error is going, and what she has learned from her experiences, and how it is making her life a teensy bit easier to cope with each day, not whether it's a valid proven scientific point.
Please don't leave.
It's cool UT, I get what you're saying and I'm not offended. We should bump the Vaccination & Epidemic thread to keep the science debate and personal support separate.
(And then I can tell you in that thread exactly what happened on the day when my daughter was 12 months old and stopped speaking. Hint: I was in the pediatrician's office, and I consider it the biggest fuckup of my life, because while I hadn't had time to do all the research I've done by now, I had done enough that I should have known better.
On second thought, I actually should stay out of that thread, because I'll admit right now that nothing anyone can say from this point on will ever convince me I'm wrong about vaccines, because I watched it fucking happen right in front of me. I am the very definition of a closed mind on the subject.)
I'm sorry too T, I didn't mean to make you sad either. This whole subject tends to make me extra bitchy I guess... pisses me right off actually. Nothing personal.
I consider it the biggest fuckup of my life
:hugs Clod:
You're doing the best you can do, and a damn good job of it. Don't carry that guilt around.
Well, too late for that. :) But I figure I can redeem myself by making them better, and spreading the word to help other kids while I'm at it.
Hah, little late on this one. Sorry:
Gummis were just one data point. But wasn't it one data point in a series of others? The other foods/consumables that, when discontinued, marked an improvement, or vice versa. Stopping them wasn't just a dramatic shift; it was a dramatic shift which mimicked the other dramatic, food-related behavior shifts.
I guess the point is that IMO one's children should not be by default a clinical trial; every meal is a trial enough, from the sounds of it. Prior to the full-on hard-proof scientific method is a period of observation and field work, after which a hypothesis can be formed and specific studies can be done.
On the other hand, part of the understanding Clod is working on seems to be that the triggers are very distinct from person to person, even two siblings from the same parents. By nature sample sizes will, at this stage, be small, and the changes overlapping.
Goat Milk?
Most experts claim that the best kefir is made from raw goat’s milk, but cow’s milk also works, even if it has been pasteurized. If fact, people have made kefir from soy milk, coconut milk, and even fruit juices. But kefir grains differ in the combinations and proportions of bacteria and yeasts they contain, so not every grain is compatible with every food.
It sounds like the starter for kefir is pretty vigorous and should be free of nasty grains etc. I'm going to put Pete on this when we get milking again next summer.
You can get kefir at Whole Foods.
Reminds me, I was just reading about some woman who is working hard to get camel milk introduced to the USA. Apparently there would be decent market for it in the immigrant communities. And it's supposed to be extremely healthy so it might catch on elsewhere. She just has to go through a bunch of government red tape first.
You can get kefir at Whole Foods.
We get it at Wegman's, unless you mean the starter?
I mean, kefir that is packaged and flavored specifically for kids.
Reminds me, I was just reading about some woman who is working hard to get camel milk introduced to the USA. Apparently there would be decent market for it in the immigrant communities. And it's supposed to be extremely healthy so it might catch on elsewhere. She just has to go through a bunch of government red tape first.
from the WSJ
RALEIGH, N.C. -- Millie Hinkle first tasted camel milk in the United Arab Emirates about 10 years ago. She had no idea the salty drink, still warm from the camel and served in an ornate bowl with a side of walnuts, would become an obsession.
"It has taken over my life," said the 57-year-old practitioner of natural medicine as she cruised down a tree-lined road here in her white SUV emblazoned with a camel.
In some countries, camel milk is called "liquid gold" for its healing and nutritional qualities. But camel dairy is not widely available in the U.S., in part because the animals don't like to be milked. Lauren Etter reports from Raleigh, North Carolina.
Ms. Hinkle has drained her savings, slashed the number of hours she spends at her day job and started a company called Camel Milk USA. Her goal is to bring the milk, reputed to have healing and aphrodisiac powers, to the U.S. where it's been hard to get mainly because camels weren't listed in rules governing the sale of milk.
Still warm from the camel? *ack* I think I'd have to warm up to that a bit myself.
Wiki definition of
apraxia, a common symptom associated with autism.
1. SCIENTIST FIRST TO CHARACTERIZE NOVEL SYNDROME OF ALLERGY, APRAXIA, MALABSORPTION
Newswise — A landmark study conducted by Children's Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described. The new study, led by Children's Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten- sensitivity and nutritional malabsorption.
"While it is critical to treat verbal apraxia symptoms that often include severe delays in expressive speech production with speech therapy, we need to start asking why these kids are having these problems in the first place so that we can identify mechanisms we can actually target to treat the cause of the symptoms," says Dr. Morris.
Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others.
All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. "The sample size is still small and should be interpreted with caution," says Dr. Morris. "However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group".
Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report.
"While data from a case series is by no means conclusive, the results clearly point to the need for further attention to this poorly understood disorder, and a placebo-controlled study to investigate the potential role of vitamin E and omega 3 supplementation in this group of children," says Dr. Morris.
She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place. However, Dr. Morris does advise families to work closely with a physician rather than trying promising but unproven interventions on their own.
In the mean time, however, Dr. Morris's study provides the essential foundation for identifying the children who may need these treatments.
"By identifying these early red flags of the syndrome, we've provided a way to get these kids treatment at the earliest possible moment. While 75 percent of the time kids identified as late bloomers really are just that, 25 percent of the time there is a true pathologic condition. To miss it is to miss critically valuable time for early intervention. If a child has all these symptoms, chances are they are going to fall into the 25 percent who have a condition that needs further evaluation and treatment."
ABOUT CHILDREN'S HOSPITAL & RESEARCH CENTER OAKLAND
Children's Hospital & Research Center Oakland is Northern California's only freestanding and independent children's hospital. Children's is the leader in many pediatric specialties including neonatology, cardiology, neurosurgery and intensive care. The hospital is a designated Level 1 pediatric trauma center and has the largest pediatric critical care facility in the region. Children's Hospital has 190 licensed beds, 201 hospital-based physicians in 30 specialties, more than 2,611 employees and an operating budget of $312 million. Children's research arm, Children's Hospital Oakland Research Institute, is internationally renowned in bridging state of the art basic science and clinical research for the treatment and prevention of human disease. With about 300 staff members and an annual budget of approximately $50 million, CHORI is ranked among the top ten research institutes in National Institutes of Health funding to children's hospitals. CHORI is a leader in translational research, providing cures for diseases, developing new vaccines for infectious diseases and discovering new treatment protocols for previously fatal or debilitating conditions such as cancer, sickle cell disease and thalassemia, diabetes, asthma, HIV/AIDS, pediatric obesity, nutritional deficiencies, birth defects, hemophilia and cystic fibrosis.
A
new study against the dietary treatments puts a rather desperate spin on things:
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation.
Apparently constipation isn't a GI symptom anymore.
Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.
"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."
So, wait, they are hardcore self-selecting themselves to specific foods (you know, wheat and dairy--never in the history of autism or childrearing in general has there been a kid who self-selects himself to broccoli) and this is leading to constipation. Thus, getting them to eat different foods would relieve this constipation. That sounds like... getting them to eat different food would be a good thing?
"For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky."
I'm sorry, what? It's dangerous and risky to make my child eat fruits and vegetables instead of bread and cheese? This shows how desperate people are getting--the one thing doctors have
always conceded is that there is absolutely no harm in trying the diet. The only meaningful nutrient you might miss is calcium, and the reality is most normal kids don't get enough calcium either, which is why calcium supplements come in fucking gummy bear format. I saw an NBC medical correspondent make a complete fool of herself with her insistence that this "proves it," "case closed," "there is absolutely no link, we've proven it." Real scientists know one study is just one study, and you never ever call something definitively closed. That is the purpose of science, to constantly search for more information and new ways to look at it.
How many old studies exist that prove no link between smoking and cancer, I wonder?
So are they now saying that the case is definitively closed on children in general eating a more healthy diet being a good idea ???
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
Apparently constipation isn't a GI symptom anymore.
Just to be the devil's advocate, it sounds like they're saying the
frequency difference was not statistically significant. The fact that more of those "symptoms" were constipation (rather than diarrhea, etc.) in the autism group
was significant.
At issue is what they intended "However," to mean.
It sounds to me like they are saying that a symptom of autism, strong preference for routine, specifically in food choice, is causing the constipation. I doubt they'd caution against enforcing a varied diet, as opposed to a restricted one. "Not just bread and cheese" is different from "no bread or cheese". Though I do know that it can be hard to get a child to eat something else if they know that what they want is available.
Without calling out any particular restricted diet, they
can be dangerous and risky (though that's an extreme case), meaning you have to be very careful when using them, not that you should never use them. Without evidence supporting a link between diet and autism, and with the possible danger of a poorly crafted restricted diet, they reccommend against.
Edit: I do wonder whether the 77-72 GI number includes the 34-18 constipation number.
From HM's link:
A vegan couple were sentenced Wednesday to life in prison for the death of their malnourished 6-week-old baby boy, who was fed a diet largely consisting of soy milk and apple juice.
“No matter how many times they want to say, ‘We’re vegans, we’re vegetarians,’ that’s not the issue in this case,” said prosecutor Chuck Boring. “The child died because he was not fed. Period.”
He was six weeks old, and they were (apparently) giving him soy milk instead of soy formula, which are entirely different substances, yet both are vegan. I know from experience that it says right on the box of soy milk--and every other milk substitute on the market--that it
is not intended for use as a baby formula. It was not the vegan diet that killed him, it was his retarded parents.
"Without calling out any particular restricted diet" is disingenuous because there are only three major diets that are recommended for autistic children: gluten-free/casein-free, Specific Carbohydrate (whose chief difference from GFCF is it allows non-cow milks,) and Feingold (which removes nothing but artificial additives, colors, flavors, and preservatives.) Your average experimental parent is not fashioning some diet out of their ass, they are following one of these three.
It sounds to me like they are saying that a symptom of autism, strong preference for routine, specifically in food choice, is causing the constipation.
Routine food choices do not by themselves equal constipation. My son still eats about ten foods or so pretty much every day, but his digestion is no longer a problem. The majority of people on this planet rely on staple foods that they eat at every meal. It is
what one routinely eats that causes (or does not cause) constipation.
Edit: I do wonder whether the 77-72 GI number includes the 34-18 constipation number.
I also wonder how they classified the strength of the symptoms. My stepson has constipation at least once a month. That is not the same as a child who has chronic, daily constipation with visual bloating and distension of the stomach.
And
another one has just come out in the UK. Once again, the authors conclude there is "no link" despite their own data showing that
There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.
Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."
Oh, but the professor who ran this study? He's a British vaccine official.
This actually gives me great hope. If they are running at such a fever pitch to prove what they already assume to be true, and this is the best they can come up with... it is a tacit acknowledgement that they are losing the battle.
It's by no means certain, but there are two representatives in Congress (Rep. Chris Smith R-NJ, and Rep. Carolyn Maloney D-NY,) who are pushing extremely hard for a special hearing on the autism epidemic in front of the Energy and Commerce committee before the new health care bill can be passed. This could come to a head even sooner than I'd expected.
Oh, and thanks a ton to you guys who helped contact Nancy Pelosi a few days ago:
Dear Autism Advocate,
Thank you so much for all of your hard work over the last few weeks as you have continued to call, email, and fax Speaker Pelosi’s office.
THIS JUST IN!...House Speaker Nancy Pelosi has heard you loud and clear! We are now in a very constructive dialogue with the Speaker's office about the importance of ending autism insurance discrimination.
Thank you again for your patience, your perseverance and for recruiting your friends and family to make these calls.
Me too! Apparently my email went through despite the system issues.
Clod, I've been reading this thread and following the food blog, and I have a question:
Can one be on a GFCF diet AND go low carb?
I'm noticing rice, beans etc in the diet, and I can't eat those, because I'm insulin resistance diabetic. (And if I'm going to go GFCF for the autistic cub, EVERYONE is.) I just don't know how I can go low (under 150g a day) carb with this stuff.
I wouldn't think it would be too hard, most carbs are already eliminated on the diet in the first place. Is corn okay for you? Rice and corn are the main grain substitutes in pre-packaged items, but when you're cooking things yourself there are a ton of flour options--garbanzo/chickpea, amaranth, quinoa, teff, tapioca... I don't know if any of those are low-carb or not. But really, there's nothing that you have to eat on the diet, only things that you have to avoid. Meat, fruits and veggies are really what it's all about. If you're following a super low-carb diet, you're probably already eating most of the right stuff already, you'd just have to eliminate dairy.
I know, tell me about it.
It is possible to sneak things while they are at school--but its better to go out of the house to a restaurant or whatever to get it, or else they will certainly hunt it down and eat it in the middle of the night.
Speaking as a insulin resistant person myself, let me plug the quinoa. Great, great stuff. It's my go-to for rice replacement.
do you make it just like rice, pie? what's it taste like? can I get it from the grocery store?
i use soy flour for most my flour needs, and crunched up pork rinds for breading. I haven't been worried about fat or calories, just carbs, and I've lost 15 pounds in 3 months, doing NOTHING differently but keeping carbs to 150g per day.
Now that there are all these studies (and clod's own positive results) with the GFCF thing, I'm really considering trying it. But I know for a FACT that my husband is not going to go for removing cheese. we go through about 3 lbs of shredded "fiesta" blend, a container of parmesean, a block of slices, and a 24 pack of string cheese per WEEK.
Does he do the grocery shopping? Not much he can do about it if he doesn't. :) Seriously though, Mr. Clod was resistant too, but as long as dinner tastes good, he just kind of stopped noticing that it never happened to have dairy in it... plus he gets his fix while he's out at work. It's really about how resistant your son will be, and how determined he'll be to hunt down dairy if you take it away. Maybe your husband can keep a minifridge out in the garage with a lock on it.
Yep, you can make it like rice -- either 2:1 water-to-grain in a rice cooker or on the stove, or boil in lotsa water till it's cooked enough, then drain. I prefer the latter method myself, as it has a tendency to stick when cooked in my old scratched up rice cooker.
It tastes a little nutty, I think. I have successfully made several great pilaf dishes with it, and tabbouleh (as a sub for cracked wheat) and generally to backstop stir-fries and curries.
Keep in mind that it's not a 'low carb' grain though. It's low glycemic, but not low carb. And it's not wheat. ;)
i went to this WONDERFUL store today to look for it and it was FIFTY TWO grams of carbs for a 1/2 cup!! 52!
My dietician says low glycemic or not, my carbs have to stay at 150 below, not "net carbs" or fibre carbs, but total carbs. Period.
*sigh*
I guess I don't understand. If you're already eating that few carbs... what are you eating that does have carbs? It would seem to me like you're already the majority of the way there. All you'd have to do is give up dairy, not hunt for carb substitutes, because you're already not eating carbs, right?
Yeah, but my diet right now is meat and cheese, with fruits and veggies.
Most of my carbs are fruit/veggie based.
Example of my day, today:
Low carb slim fast. 6g
2 sticks string cheese for snack. free
4 wasa crackers + lunch meat and deli cheese, 45g
flavored water, 3g
snack: 1 green apple + cheese or strawbs and truvia + cheese or 1 cup cheese puffcorn. 15-20g
dinner: 2 pieces of fish, big slab o watermelon, 20g OR 1 low carb tortilla with chicken breast + cheese and hot sauce, 25g.
dessert: 4 blocks dark choc with orange peel: 20g OR more fruit (stawbs, melon, apple), 15-20g
Well, I can't find a replacement offhand for a slim fast drink. Carnation instant breakfasts are gluten-free, but I haven't found yet whether they'd be dairy-free. I also don't know how the carbs would line up. (But then again, if your son's not drinking them, and doesn't want to drink them, you could just keep them for yourself.)
The snack could change to anything like carrot sticks, celery with peanut butter, pickles, coconut/soy milk yogurt.
I don't know what wasa crackers are, but
these are a good GF cracker substitute, then just make sure the lunchmeat is a gluten-free brand and use a dairy-free dressing (probably something mayo-based) instead of cheese.
Your second snack is already good if you just take away the cheese--substitute peanut butter for the apple, or coconut/soy yogurt. Instead of cheese puffcorn you could try
these.
Fish and watermelon are okay, and there are gluten-free tortillas. I can't remember the brand name right now, but they're rice-based.
I don't know about your particular brand of dark chocolate, but there are several dairy-free options for chocolate as long as it's not specifically "milk chocolate." And of course more fruit is always okay.
Got another video of his progress posted last night.
[youtube]Yyw8C5tO8H8[/youtube]
The name thing is a particularly huge step. It's hard to explain, but it's kind of like an acknowledgement that there is him, and there is the world, and admitting they are separate is the foundation to social interaction. And aside from the awareness of identity, it's also a direct response to a question that has no practical purpose other than social interaction. "What's your name?" is actually a terrifying question to many autistic kids.
I lost a friend this week. Not a good friend, but an old one, someone I've known since 7th grade.
We haven't kept in touch very well, and when we have gotten the chance to, it's been obvious (to me anyway) that we have less and less in common each time. She's been going to medical school, and is just now finishing up her fellowship as a child psychiatrist. I've worked several vastly different jobs, gotten married, had some stepkids, had some kids; and she's... been in medical school some more.
When she emailed me out of the blue the other day, I knew exactly how it was going to play out, but I couldn't stop myself. She's a child psychiatrist. Her whole career is (I was guessing, and I was right) completely devoted to believing the exact opposite about my children's condition than I do. She asks, "So what's been going on in your life?," and my only options are 1.) bald-faced lie, don't even mention my kids have been diagnosed and pretend I've been skipping along happily these last seven months; 2.) tell her what's been going on, but leave it at "they're showing a lot of improvement" and let her believe it's due to whatever she wants; or 3.) tell her.
Number 3 is the only ethical choice, as I see it. I feel an overpowering need to tell people what I know, what I see happening before me every day, because it is a freaking crime that people, especially medical professionals, don't know it. The debate of what causes autism aside, people must be told that there are treatments, that children can and do recover from this nightmare. And yet, I know that no one will let you put the causation debate aside, because there are only two sides--either autism is completely genetic, and there is no recovery; or it is caused, and there is recovery. Any acceptance of the possiblity of recovery by definition puts you in the camp with the crazies.
So the question became, "is this friendship worth it? Do I care enough about it to keep my mouth shut, or do I let it fall victim, knowing that every parent that stands up to her is one more drop in the eventual flood, and maybe as an old school friend my word might even count as two or three drops before she permanently writes me off?"
Well, the answer was no, this friendship was pretty insignificant as far as those things go, so I went with my conscience. I told her, in a very casual and optimistic way, what a truly miraculous change we've seen with biomedical treatments. And as I expected, she has not replied. (And no, there is no chance this is just a delayed response--when we catch up with each other, we always get at least 8-10 emails back and forth in the course of just a couple days, before drifting apart again for another year or two.)
But like I said, I'm not really upset about the loss of this friend. The real problem is that I'm not sure how far I'll go. My relatives and three close friends have been supportive, but I've studiously avoided the topic with everyone else I know (which to be fair, isn't that many people,) because I'm sensing a big self-destructive streak in all this, and I can't figure out what's ethical and what's me just slashing and burning my old life out of frustration with this new life I didn't ask for. I spend all my social interactions now desperately hoping that the topic doesn't come up, so I don't have to find out how many friendships I'd be willing to sacrifice. I'm pretty sure the answer is "any and all," because I just can't handle any negative people in my life right now. Seriously, who wants friends who feel compelled to basically call you a liar to your face?
Does your friend have an open mind? Does she at least respect your intelligence and experience?
If the answer to both of these questions is "no", well, it is regrettable, but you aren't losing much of a friend. You did better to keep your conscience and integrity, IMHO.
Well, her lack of a response would seem to indicate "no." :) The problem is, I've found that many, many people who would otherwise respect your intelligence and experience are ridiculously quick to write you off once you join the "wrong" side of the debate. You're right, I don't want those people as friends... but on the other hand, I do kind of want at least some friends.
Send her a link to this thread. It's all documented her, including people questioning your views and proof of your progress.
And what good are friends if you can't borrow ten bucks or get 'em to babysit. :haha:
Well it sure seems you have a ton of virtual friends backing you up right here. We have all seen the progress - how can we possibly dismiss it when we've all seen the proof? I say send every doubter a link to this thread, and if they still don't believe, tell them to Eat A Big Bowl of D*cks.
Send her a link to this thread. It's all documented her, including people questioning your views and proof of your progress.
I already sent links to the videos in my email to her. You've got to understand, she's a child psychiatrist, she's not going to be convinced by any amount of evidence on this topic. You guys are way,
way more open-minded than the rest of the population, I assure you. And don't kid yourself, the only difference between my friend and, say, UT or Happy Monkey, is that those guys are willing to politely make an allowance that maybe dietary stuff has had some impact specifically on my one child, they just maintain it in no way translates to a larger causation fingering vaccines. But the people who have done the research, on
both sides of the debate, know that halfway-house theory can't stand on its own. If the diet works, vaccines play a role. They know it, we know it. Think about it: why else would anyone fund studies to prove that autistic children
don't have a higher incidence of digestive problems? That's really the most important avenue they can think to explore? Unless of course the dietary link is more important than it appears to the average person--and it is. That's why they steadfastly
cannot discuss or accept biomedical treatments in any way, shape or form. It doesn't matter how many videos I have of my son, or whether we even attain the holy grail of getting his neurologist to admit in the next year or so that he no longer qualifies for a diagnosis of autism--which he will only do couched in terms of, "well he must never have had autism to begin with," you mark my words--they will not believe. Because if you believe even one iota of the diet, if you believe that my son has made even one single step forward due to anything other than behavioral therapies, then you've stepped into the vaccination mud.
You may note that TheMercenary, the only medical doctor on this board that I'm aware of, is supportive of my general situation, but has not chimed in with regard to my son's alleged improvement. And based on his posts in the Vaccination & Epidemic thread, I'd say he's actually one of the more open-minded doctors I've met. He at least takes the line of "nothing's proven, we need more research," rather than "we have 16 studies on it and that's all we'll ever need." But let's ask him: have biomedical treatments improved my son's condition, or not? He will not give you a straight answer. None of them will, because they know exactly where that line of thought leads.
I don't understand why doctor's are so anti-biomedical treatment? Is it because then their cohorts won't get paid for therapy and prescriptions?
And I understand causation is VERY important to discover, but in the meantime, THE BIOMED ROUTE IS WORKING FOR GID. LOOK PEOPLE! WHO GIVES A RAT'S ARSE WHAT CAUSED IT AT THIS POINT - IT'S WORKING.
/rant off.
I don't understand why doctor's are so anti-biomedical treatment?
Because it invariably leads to the conclusion that vaccines are playing a role in triggering/worsening autism. If biomedical treatments gain wider acceptance, vaccination rates will plummet. And while they may or may not scramble to find ways to make the vaccines safer, it will be decades before vaccination rates go up again, and in the meantime children will be dying of measles and pertussis again. I've even talked to some doctors who do genuinely believe that vaccines do cause autism--but they still figure 1 in 100 kids being autistic is better than 1 in 1000 babies dying of measles.
Holy Hell. It's a no-win situation then. Friggin politics to sell more vaccines. Amazing. My sympathies, and keep fighting the good fight. You're a much stronger woman than I.
BTW, I've recently been in touch with an organizaiton called Best Buddies, that sets up one on one friends for those with special needs, learning disabilites, etc. including autistics. I'm working on getting a program going here in Colorado - I'll keep you posted.
Also the friend whose autistic son started piano lessons: the teacher said he has perfect pitch. When she plays he hums along. He's now learning to play chopsticks on his own.
but they still figure 1 in 100 kids being autistic is better than 1 in 1000 babies dying of measles.
I know you're just making a point, not about the actual numbers.... but just for the record we were down to
0.2 per 100,000 just prior to the measles vaccination introduction.
Ah well, there you have it. 1 in 100 kids being autistic is apparently better than 1 in 500,000 kids dying of measles. That also assumes that the treatment of measles will have improved in no way since 1968.
I think I can participate in this thread in the social matter --
Loss of friends over changes in one's belief system? Let me tell you my story. For many years, I was a hardcore Libertarian and worked inside the L party to try to develop it and to angle politically. My then-wife was 100% with me on that, and so most of our friends were fellow L party travelers and their associates who enjoyed the ride.
After a decade of believing and working and developing friendships, I began to realize that although it had many good points, the hard core libertarianism also had deep flaws as a school of thought. Once I started to be at odds with some of the oft-repeated mantras, it all sort of broke away and over a period of two years I found myself no longer in the group-think.
Then, as a result, I lost most of my friends over a period of that two years. And it was also probably the first crack leading to my divorce -- although I consider the divorce the best thing to happen, so I'm not sure that matters so much.
One of my current best friends (and being all anti-social, I have like six friends, and two I'd regard as "best") is one of the hardest-core libertarians in the country. But just like I learned about marriage, real friendship overrides philosophy somehow. The disagreements become part of why we're friends.
Do I have a conclusion here... no I guess not... but I should say, Clod and this goes for you jinx too, although I am not directly in your belief system, I want to remain efriends, because to me you are beautiful people and when it comes to beliefs, we all struggle to understand, the struggle is the beautiful part. And intellectual honesty requires me to admit I may be wrong, as well so what does it matter?
I wish all my friends saw it that way, Toad. :) It would also help if the disagreements I have with them were more philosophical and less concrete. If you watched some libertarians physically hurt your child, and then deny it ever happened, it would take on a whole new light. I can still be friends with people who continue to raise their own children as libertarians, but I'm still taking my kid to the hospital, even if it's run by fascists.
Do I have a conclusion here... no I guess not... but I should say, Clod and this goes for you jinx too, although I am not directly in your belief system, I want to remain efriends, because to me you are beautiful people and when it comes to beliefs, we all struggle to understand, the struggle is the beautiful part. And intellectual honesty requires me to admit I may be wrong, as well so what does it matter?
The topic is fascinating to me... and infuriating... I get obsessed with it. I've been reading about it for 10 years and have no real answers.
I'm ok with disagreeing for the most part UT. Fuck, if I'm wrong, and vaccines are harmless and the greatest medical advancement ever - well that's good news isn't it? I could make a Dr. appointment and get my kids all shot up and move on, knowing they are the picture of health.
If I'm right though, well that thought is pretty terrifying.
:::kicks Undertoad in his stupid balls:::
Allergy test results came in the mail today, by the way.
Incidentally, Minifob's allergy blood tests will be back in soon. I'll let you know if they confirm my personal finding that he has a correlated behavioral reaction to coconut, peaches, oranges, cashews, peanuts, egg, and tomatoes. (And just for the record, I'm predicting Minifobette's blood tests, when she gets them in a few months, will show a reaction to pears, peaches, oranges, cherries, mango, kiwi, and pineapple.)
Coconut: yes
Peaches: [COLOR="Red"]no[/COLOR]
Oranges: yes
Cashews: yes
Peanuts: double yes (get to that in a minute)
Egg: double yes
Tomatoes: yes
I am quite frankly stunned that peaches came up negative. I am now certain that they would mark positively on an IgE panel, however. Here's the thing--there are IgG allergies (officially known as "sensitivities") and IgE allergies ("true allergies.") The two big differences are 1.) IgG causes digestive distress, while IgE is the typical itchy eyes/rash/wheezing/sneezing response, and 2.) IgG can fluctuate over time, and a damaged digestive system is going to react poorly to more things than a healthy one, so there is a chance to heal, while IgE is usually a lifelong immune dysfunction. Both can cause behavioral symptoms.
Because the assumption behind all of this is that we're more concerned with digestive problems, they do a comprehensive IgG panel for 118 different foods, and an IgE panel for the most common allergens, plus any you choose to add. (You can add as many as you want, but it's $7 per food, so it's best to be moderate.) Minifob's tests came back with both an IgG
and an IgE reaction to eggs and peanuts, but peaches weren't on the IgE panel, only the IgG.
Anyway, what is really useful about all this is not confirming what I already knew, but alerting me to things I didn't know. The number one highest-ranked allergen, almost off the scale? Garlic. Go figure. I'll have to check the seasonings on a few of his chips, but as far as I know he's not eating any garlic anyway. Other very high results (everything's on a severity scale, the above suspected ones were also all in the highest range):
Things he won't eat, or has never had: Cantaloupe, Honeydew, Watermelon, Carrot, Green Peas, Lentils, Safflower, Cottonseed, Flaxseed, Walnuts, Hazelnuts, Brazil nuts, White Beans
Gluten, Oats, Rye, Wheat: no shocker there
Sesame: there are small amounts in one type of GF pretzel he eats
Mustard: sometimes has a small amount on hamburgers
Pinto beans: this one's the kicker. He eats pinto beans (in the form of refried beans) every single freaking day, sometimes twice a day. I'd have no idea if it were making him worse than he could be without it, because he's never without it. I'm pretty sure I've seen refried black beans at our grocery store though, so I'll switch him out and see what happens.
There's a handful of others in the lower ranges, but I'm not going to worry about those for now. We're totally safe with corn, chickpeas, most fruits and vegetables, and all meats, so I'm happy about that.
The more you know, the better equipped to do what's best, and less likely to be blindsided. You go, girl.:thumb:
I am amazed by both the irrationailty and dogmatism described in Clod's post #437 (not Clod's, the position she is describing).
Maybe Autism is caused by genes, maybe vaccination, maybe both, neither, mixtures, other etc.
Maybe is treatable by diet, maybe behavioural therapy, maybe both, neither, mixtures, other etc.
As far as I can see, there is NO necessary connection between treating it with diet and believing it was caused by vaccination. These beliefs may often be found together, but they are conceptually independent.
It amazes me that anyone, especially a helath professional, could be so dogmatic. Medicine is an empirical science. Try things, see if they work.
There is widespread evidence - largely anecdotal, but lots of it - that diet helps. That is perfectly compatible with autism being genetically caused. What is so hard about that?
Clod, regarding the allergy tests, have all of you in your family gotten this testing? I am interested whether or not perhaps these sensitivities and allergies are present in sibling/parents. And I wonder how many of us have these s/a on a lower scale, but we just never find out?
I'm sorry you lost your acquaintence. I don't want to see you isolating yourself from others in the "real world" (as opposed to us, your e-friends) because that sense of disconnection will wear you down faster than if you had a better support group. Not that we're not your support group. *sigh* You know what I mean.
Clod, regarding the allergy tests, have all of you in your family gotten this testing? I am interested whether or not perhaps these sensitivities and allergies are present in sibling/parents.
It's been shown that siblings and parents are more likely to have allergies (and other immune disorders) in general, as well as more likely to have digestive disorders. Colon cancer, specifically, runs very commonly in families with autism--I've had two direct relatives die of it--and they also think in a lot of cases that people who die of colon cancer may have actually been undiagnosed celiacs.
But as for whether we've been allergy tested, no, we haven't bothered with it. A doctor has to order the IgG test out of a specific lab, and most GPs and other family doctors would rather refer you to an allergist than commit to some lab they've never heard of. And allergists are always focused on IgE sensitivities, because digestion is simply not their expertise. The allergist we saw for my daughter at the beginning of the year told me, "Well, whatever you think she's reacting to, just take her off of it." He basically refused to do any significant testing on her. My kids' doctor isn't going to make non-autistic adults patients just to order some tests for us. Usually, to get an IgG test ordered, you have to go to an osteopath or a naturopath, because they're the ones who buy into the whole digestion-is-crucially-important concept of health. So we'd have to go find a whole new doctor to visit, and of course pay for the test out of pocket (insurance doesn't like this sort of broad shotgun testing without "reasonable" medical cause.) Not worth the effort, since we're obviously not having inexplicably recurring diarrhea, so whatever sensitivities we may have can't be that bad. :)
Well thank God that's over.
Last month when we reviewed Minifob's initial lab tests, you may recall that they showed a bacterial as well as a fungal infection in his digestive tract. So he was prescribed first an antibiotic, to be followed by an antifungal. But fungus is a fighter, and a standard course of antifungal drugs is 21 days, so add that to the 10 days of antibiotics and we've just now finished going through those two medications.
On the antibiotic, he was great. Moderate improvement in all areas. Hooray! Then, we started the antifungal, and he was immediately nasty. This was okay, because it's expected: part of fungus being a fighter is that it immediately and aggressively spores outward if something is killing the colony. So when treating any fungus (skin rash, vaginal yeast infection, whatever,) the symptoms will get a little worse before they get better. But he didn't get better. There were a few random tolerable moments, but for the most part he was hyperactive, emotionally unstable and generally defiant for basically the entirety of the last three weeks. Plus, his language went down the toilet. It was pulling teeth just to get him to use nouns, forget about the complete sentences and spontaneous speech he had been tossing about with ease before we started this treatment. This was, as you can imagine, incredibly demoralizing for me, as he basically lost everything we'd gained over the last three or four months.
But Friday night was the last dose of the antifungal, and today he's back! Happy, polite, and talking up a storm. I wouldn't say he's better than he was before we did the antifungal though, at least not yet, and that's a bit of a problem. I'm pretty sure they're going to tell me that the fact that he never "broke through" and got better while on the antifungal means that he still has a lingering fungal infection. But at the very least they can't tell me that until we go in for our next followup appointment, so I'm safe for another 2 and a half weeks... and in the meantime I have a good kid again, just in time for Flint and Pooka to meet him!
And in Minifobette's news, her initial appointment has been scheduled for September 29, so in the meantime we're left to continue experimenting on our own. One thing we've discovered is Undertoad may have been indirectly right about the calcium gummies--just a few days after her random burst of speech, most of the gains were lost again. So I was left floundering with this new data, until a few days ago when I accidentally forgot to add the new calcium supplement (a pure powder) to my most recent batch of waffles, where I had started sneaking it in so we had one less vitamin to deal with at night. Minfob's just been getting the powder mixed in with the rest of his vitamins until we can use up this calcium-less batch, but I hadn't managed to get Minifobette started on anything yet--and suddenly her language is making huge gains again. Based on this, my best guess is it would seem she has a problem with calcium itself. Online searching brings up a few anecdotes of autistic kids who were unable to process excess calcium, and buildup can cause a host of health problems, including things like kidney stones. So we're just going to keep her off of all calcium supplements for awhile, and hope that her little dairy-free bones don't start snapping like twigs if we happen to be wrong. :)
:::kicks Flint in his stupid balls:::
:::exits thread again:::
[aside] Do other people have smart balls? I find that idea scary and yet a little enthralling at the same time [/aside]
Monnie, for some guys, it's the only brains they got. </snark>
Clod, hopefully they'll test her for serum calcium levels too. Do your kids get daily sunlight? Vit. D3 is crucial for calcium usage in the body.
Two steps forward, one step back. But still, it's progress! :thumb:
Clod, hopefully they'll test her for serum calcium levels too. Do your kids get daily sunlight? Vit. D3 is crucial for calcium usage in the body.
They do go outside pretty much everyday, and usually upwards of 30 minutes (although a decent amount of that is in the shade...) But insufficient presence/production of Vitamin D is one of the more common problems, so they may have us supplement it after they've tested her levels, I don't know.
source
Clod, just so you know, being on a Gluten free diet, or even trying to eat healthy foods, is now considered a mental illness.
Eating disorder charities are reporting a rise in the number of people suffering from a serious psychological condition characterised by an obsession with healthy eating.
The condition, orthorexia nervosa, affects equal numbers of men and women, but sufferers tend to be aged over 30, middle-class and well-educated.
The condition was named by a Californian doctor, Steven Bratman, in 1997, and is described as a "fixation on righteous eating". Until a few years ago, there were so few sufferers that doctors usually included them under the catch-all label of "Ednos" – eating disorders not otherwise recognised. Now, experts say, orthorexics take up such a significant proportion of the Ednos group that they should be treated separately.
"I am definitely seeing significantly more orthorexics than just a few years ago," said Ursula Philpot, chair of the British Dietetic Association's mental health group. "Other eating disorders focus on quantity of food but orthorexics can be overweight or look normal. They are solely concerned with the quality of the food they put in their bodies, refining and restricting their diets according to their personal understanding of which foods are truly 'pure'."
Orthorexics commonly have rigid rules around eating. Refusing to touch sugar, salt, caffeine, alcohol, wheat, gluten, yeast, soya, corn and dairy foods is just the start of their diet restrictions. Any foods that have come into contact with pesticides, herbicides or contain artificial additives are also out.
The obsession about which foods are "good" and which are "bad" means orthorexics can end up malnourished. Their dietary restrictions commonly cause sufferers to feel proud of their "virtuous" behaviour even if it means that eating becomes so stressful their personal relationships can come under pressure and they become socially isolated.
"The issues underlying orthorexia are often the same as anorexia and the two conditions can overlap but orthorexia is very definitely a distinct disorder," said Philpot. "Those most susceptible are middle-class, well-educated people who read about food scares in the papers, research them on the internet, and have the time and money to source what they believe to be purer alternatives."
Deanne Jade, founder of the National Centre for Eating Disorders, said: "There is a fine line between people who think they are taking care of themselves by manipulating their diet and those who have orthorexia. I see people around me who have no idea they have this disorder. I see it in my practice and I see it among my friends and colleagues."
Jade believes the condition is on the increase because "modern society has lost its way with food". She said: "It's everywhere, from the people who think it's normal if their friends stop eating entire food groups, to the trainers in the gym who [promote] certain foods to enhance performance, to the proliferation of nutritionists, dieticians and naturopaths [who believe in curing problems through entirely natural methods such as sunlight and massage].
"And just look in the bookshops – all the diets that advise eating according to your blood type or metabolic rate. This is all grist for the mill to those looking for proof to confirm or encourage their anxieties around food."
Your source is a Guardian Article? With a couple of quotes and a term coined 12 years ago. As far as I can see, it does not suggest that being on a gluten free diet or trying to eat healthily is a mental illness, just that there is a term for people who do obsess about eating healthily to the point where it causes harm.
I'm pretty sure OC was rolling her virtual eyes at it, not actually agreeing with the article. :)
oh, ok, sorry, it looked to me like she was mocking you. mybad. still a very bizarre interpretation to take from that article.
I wouldn't mock Clod. I'm actually outraged that these fucks that are poisoning us are trying to say that those of us who want to make our own food choices FFS are mentally ill. Well fuck them. Assholes!!!
That's clearly not what they're saying Onyx. Healthy eating is one thing; obsessing about restrictive diets to the point of self harm is something entirely different. And, I am confused as to how 'these fucks' are poisoning us ?
I can understand what Oc's point is somewhat. A lot of people who just make certain choices without even obsessing over them are viewed critically by some members of society.
I know a lot of people around me think my choice to eat organic food as much as possible, and to minimize additives and keep to a whole food diet as much as possible think I'm obsessive, but I don't think that's the case.
When it comes down to it, most of us have pretty crap diets and have far too many preservatives and additives in our food and it's becoming a big problem when you look at the increasing numbers of people dying from bowel cancers and other conditions brought on by a diet high in sugar, salt and preservatives, not to mention highly processed foods with no fibre what so ever hardly.
I don't think the article was actually criticizing people who make alternative food choices though.
Healthy eating is one thing; obsessing about restrictive diets to the point of self harm is something entirely different.
Sure, but the question is, is self-harm really so likely that it warrants a scare article? From a nutritional standpoint, it is much, much easier to become malnourished by avoiding all meat than by avoiding
sugar, salt, caffeine, alcohol, wheat, gluten, yeast, soya, corn and dairy... pesticides, herbicides or... artificial additives
I personally know several people who avoid all of the above. (There are indications that soy and corn can pose similar problems to gluten and casein for some developmentally-delayed kids, and in some cases may actually have a much larger effect than the first two.) Most of them started the diet as a treatment for their kids, but they have ended up taking the whole family along for the ride, and everyone is healthier for it. Of course you can become malnourished following any diet, but this article seems to indicate that it's likely to happen when you restrict the above things, and that just isn't the case. Where is the medical classification for an unhealthy fixation on eating only crap food? Lots of people suffer from that.
I think it depends what perspective you read the article from. I didn't actually see it as a scare article so much as an 'oh, so there's a new lable for people who make themselves sick over food' type of article. Mind you, I know nothing about the publication, so I'm taking what's written there at face value.
I think there are people out there who do make themselves sick because they restrict their diet so much (without informing themselves properly) and I can definitely see how it can be socially isolating. No more dinner and drinks with friends, no going to your friends house for a BBQ etc.
Actually the article says they start off by restricting those things, but that for the obsessive they keep refining that down and engaging in further restrictions. Even to the point of damaging relationships or becoming malnourished.
Obsessive behaviours around food can be damaging. It's not really about what diet someone's on, so much as it's about how they relate to food. I think there is something to be said for the idea that we live in a society that encourages obsessive relationships with food.
In the UK this news period is called "Silly Season" because there's so little news to report. All this article is doing is recognising that some people have reached this extreme and noting who is likely to be susceptible.
There's a lovely family at our pool and the mother -lovely woman- could probably be diagnosed with this. her family tolerate her obsessively healthy habits, and eat regular food when not in her presence. But last year she wouldn't allow them to attend the pool social functions because she knows they'll eat hot dogs when she isn't looking, and people started avoiding her on deck if they had food because she'd walk over, read the label and tell them how awful it was. And she really isn't that sort of unpleasant person, but her healthy eating obsession took over for a while and affected the social interactions of her entire family. i haven't spoken to her much this year so don't know if it's still the same.
[youtube]YUNssEtAwr8[/youtube]
Gawd, the fun just never stops around here.
We had a follow-up with the nutritionist to discuss his staggering allergy results. She confirmed that yes, that number of very-strongly-rated intolerances is unusual, even for an autistic kid. She also had me go all the way back through his food/behavior logs with her to be sure: a lot of these are definitely new sensitivities within the last couple of months. He used to eat peanut granola bars all the freaking time without a problem, then they slowly started causing more and more of a reaction until now they are an instant ticket to diarrhea and poor behavior.
What this means is that his digestive tract is so damaged that going GFCF, while helpful, has not been enough to allow it to heal on its own. His stools got better when we forced him onto all new foods, but they gradually got worse again as these new foods leaked through his damaged intestines into his bloodstream, where the immune system said, "WTF, GTFO!" and started attacking it, thus developing a sensitivity to this new food. Every time we put food into his system, we run a significant risk of developing a sensitivity to it, and the only solution right now is a strict rotation diet, where he does not eat a food more often than once every 4 days.
So each day gets its own grain, protein, etc. I'm still hammering out the details around what he will and will not eat, but the bare bones look something like this:
Day 1 - Chickpea flour, Turkey - His current waffles and sandwich bread are chickpea flour, so this is pretty much his daily diet right here already. Waffles for breakfast, turkey sandwich for lunch... and probably a turkey sandwich for dinner until I can get better ideas.
Day 2 - Amaranth flour, Chicken - The pumpkin bars I alluded to in another thread were a test run with amaranth flour, to see if he could taste it (it's one of the yuckier flours, and he already rejected amaranth waffles long ago.) He couldn't. So that's a pumpkin bar for breakfast, chicken nuggets breaded with Lay's potato chips for lunch... and chicken nuggets for dinner until I can get better ideas.
Day 3 - Corn, Sunflower - Sunflower is the only nut that he doesn't have a severe problem with yet, but he's more likely to eat that than beef, so we'll start here for now. Corn is super easy, with tons of snacks like Fritos, Tings, tortilla chips, Kix cereal, Chex cereal, popcorn, etc. My next "bar" attempt is going to be a sunflower butter (like fake peanut butter) bar. We'll see how that works out...
Day 4 - Sorghum Flour, Pork - I made a new loaf of sandwich bread last night with sorghum flour, so we'll see if he is willing to have ham sandwiches on it. I could in theory blend it with tapioca flour to mitigate the taste, but tapioca flour is already in his chickpea flour bread. Maybe potato flour. Oh, but potatoes are in the breading of his chicken nuggets on day 2 (of course it's a theoretical breading I haven't tried yet, so maybe he won't like it anyway.) At least he can have bacon on these days. I'll just feed him bacon all day long.
But believe it or not, the above is actually the preferable solution. Given his ongoing problems, at this point we've earned ourselves a side trip to the gastroenterologist, and I've been reading up on the messageboards about the common procedures and treatments others have had to do. I have learned they will likely do a pill cam procedure, which will take pictures as it travels all the way through him and tell us exactly what parts are damaged and how. Small intestine damage is treated with different meds than large intestine, inflammation is treated with different meds than infection, Crohn's disease gets its own special protocol, etc. So that would be a relatively easy thing. The nightmare scenario is they tell me he is just too damaged to heal on his own, even with medications, and that he has to do a stint on the elemental diet; i.e., nothing but liquid fortified with amino acids and vitamins all pre-broken-down, the same sort of thing they give to coma patients through a feeding tube, so his digestive system has a chance to be totally left alone for awhile.
Make him eat nothing but liquids for some length of time? Well okay, I have the resolve to do that, if I have to. Hell, it'll be easier than trying to come up with real food he can eat. But try to send him to school while he's doing this? Let him spend every snack time and lunch period sitting in the nurse's office? I just don't know. Maybe he'll just take a few weeks off, unless they tell us we have to do this thing for months... But hey, maybe we'll get lucky and the rotation diet plus meds will be enough, right? Gotta think positive.
Someday, when you're babysitting your grandchildren, you'll have to write a book about your journey.
Hugs, clod, just hugs ... :grouphug:
I thought about you guys Friday when I stopped my my best Austin buddies house and was invited to try an amazint GFCF cake... she said it was a mix she bout at whole foods... Pamala's I belive was the lable.
Hang in there! You are an amazing mother and I know that you are unrelenting in your quest. Your children are blessed to have you and will one day be so grateful for all you go through to give them the best.
Thanks - hey by the way, I tried making bacon in the oven this morning the way you suggested, and it came out perfect! I will never make bacon on the stovetop again. And, he ate the sorghum flour bread at lunch without a second glance. Hooray!
Clod my heart breaks every time I read this thread. It's so fucking unfair. My mum spent years following this and that new restrictive diet for me. Changing the household's diet to match as much as was feasible. The worst was when i was diagnosed (wrongly as it happens) with Total Allergy Syndrome. I think they also call it Multiple Alergy Syndrome: which is what your lad's reactions sound like (apart from the autistic spectrum symptoms).Diets took over everything. And at the risk of repetition, it's just so fucking unfair. Robs parents of joy and ease in their little-uns.
If I had a faith I'd send up a prayer. I just really hope you find whatever combination of food/action/medication that will help your lad soon so you all can get on with the deeply important business of having unhindered fun.
Clod, will he eat fish? There's substantial evidence out there that omega3s have significant effects on autoimmune conditions... I will look for some links.
This article (
Omega-3 fatty acids in inflammation and autoimmune diseases) discusses the effect of omega3s on multiple inflammatory-upregulated disorders, many of them involving the gut.
Another one (
Dietary modification of inflammation with lipids).
Yet another (
Omega-3 fatty acids in inflammation and autoimmune diseases)
I can help you get a hold of any of these articles (or any others you might want).
Omega3s are also available in
high-quality supplement form if he doesn't like fish. I personally take 1g of EPA/DHA every day for diabetes-related systemic inflammation... My mom takes 2g/day for Crohn's disease, and my husband takes 2g/day to help with his psoriasis -- we don't want that to evolve into rhumatic arthritis! Check out LEF's ingredient list for any of his banned substances... They're one of the few suppliers I know that are this thorough.
Kudos to you, lady.
The worst was when i was diagnosed (wrongly as it happens) with Total Allergy Syndrome. I think they also call it Multiple Alergy Syndrome.
been there, done that. I had drops to put under my tongue, but because i showed allergy to those, drops to take before those :lol: Did you ever do the "just lettuce" elimination diet? *shudders*
Clod, whatever happens with this, I am thankful that you're his mom. He's getting the best chance he can.
Pie - he's not supposed to eat any fish because there's just too high a risk for mercury contamination at any level. But he does take an EPA/DHA supplement--or rather, he's supposed to, it's the next one in line for him to be ramped up on. We're a couple of days on the new zinc supplement now with no bad reactions (to the contrary, his cognition was way, way up today, it was awesome,) so the fish oil capsules are next. Problem is they taste like ass, so we're still working on how best to get him to ingest them without having him spit nasty fish oil all over his clothes (because believe me, that smell does not wash out. I had to throw away a set of my daughter's pajamas after she accidentally drooled some all over herself. The kind she takes tastes okay, but that's because they mask the flavor with orange--which he's allergic to.) He's also on large doses of Vitamin C for immune support as well.
Neat! The ones I take have a rosemary flavor. The gelatin capsules gave me 'fish burps' for a few weeks, but that faded with time. I don't notice them at all now.
They do have fish oil capsules now that are coated so that they dissolve in the small intestine instead of the stomach (at least I think that's how they work). I am taking them now and I got them from Sam's Club. They have no smell or taste and no burping.
I should note he doesn't actually swallow the capsules--if we could teach him to swallow pills it would be a miracle indeed. (I'm actually saving empty capsules from some of the ones I open so he can start practicing with them someday.) I prick the fish oil capsules with a pin and squirt the oil into a little medicine bottle with a dropper. I can only do about three-days'-worth at a time though, and I have to store it in the refrigerator, because it can spoil once it's out of the capsule.
I thought about you guys Friday when I stopped my my best Austin buddies house and was invited to try an amazint GFCF cake... she said it was a mix she bout at whole foods... Pamala's I belive was the lable.
Hang in there! You are an amazing mother and I know that you are unrelenting in your quest. Your children are blessed to have you and will one day be so grateful for all you go through to give them the best.
Good grief... I must have had a tugging distraction at my desk ( a wee boy distraction)... so sorry for the amazing amount of misspellings... its a wonder you could make sense of it all...
Have you tried polenta on your kids yet? if so how was it recieved?
Not yet. I have a pre-cooked tube of it sitting in the pantry, but I haven't gotten around to using it yet. Neither one of them is big on mushy textures though, so I don't suspect it would go over easily.
I make a tofu polenta lasagna that is really good. My mom used to slice polenta really then and pan fry it and serve it with real mapel syrup... thats call mush... but its good.
can you crisp it up? I seem to remember my sister trying it and she said it was most palatable spread on toast then lightly broiled like cheese.
this from wikipedia:
Cooked polenta can also be shaped into balls, patties, or sticks and fried in oil until it is golden brown and crispy; this variety of polenta is called crostini di polenta or polenta fritta. This type of polenta became particularly popular in Southern Brazil as a consequence of Northern Italian immigration. Similarly, once formed into a shape it can also be grilled using, for example, a brustolina grill.
I make it sometimes, the kids love it. Italians call it polenta, PA Dutch/amish call it mush, it's the same thing though.
My family is from Brazil... growing up we ate a cheezy polenta patty... it was called an "arepa"
Today's the day I send my little one off to school for the first time.
Oh, except someone at the school screwed up and didn't get our transportation forms sent to the bus department, so they'd never heard of us when I called yesterday wondering why we hadn't been given a pickup time yet. They're getting it sorted out, and she promised she would have us on the bus route tomorrow, but there was just no way it could happen today (they wouldn't have a carseat on the bus for him, for one thing.) So today I have to take him to the school and pick him up myself, which is no big deal, except for the potential for a tantrum in the hallway as I leave. But I honestly think he'll be so starstruck that he won't notice me back away like a ninja, and then he can have all the tantrums he wants with the classroom door closed. But it will only work once, so they'd better get him on the bus tomorrow or suffer the consequences.
Ugh, it's always something, huh Clod?
I hope his first day goes well!
Thanks, Shaw! The dropoff went great, anyway. He stared at me long and hard when the teacher said, "Do you want to say bye-bye to Mom?", but then the aide started to let the door close and he turned without a peep. We'll see how he is in another couple of hours... :)
...he won't notice me back away like a ninja...
Ask any real ninja--that's how they roll.
lol in
my mind.
A ninja with a stroller.
picturing our old stroller *squeak* *squeak* *squeak* *squeak* as we roll away like a ninja.
Who, me?
He had an awesome day! The folder notes from the teacher said he whined about me at various points but didn't resort to tantrumming even once. He barely ate one or two bites of lunch, but I think that will get better as he gets used to everything. No word yet from the bussing department though, so it's looking like he'll have to be driven again tomorrow.
The last few days have been freaking outstanding in general. It's either the new zinc supplement, the reintroduction of the digestive enzymes (we had to go off them for awhile to get accurate labtest results,) the auditory integration therapy, or some combination of those three. But whatever it is, we're keeping it up, because his speech has been through the roof.
So glad to hear he had a great day. He's going to be just fine, as I've always suspected. Keep doing the great work, Clod.
Mah-vellous news. Good for you, Clod!
Yay Clod and Mini! :cheerldr:
Day three, same news? You constantly bring a tear to my eye Clod, this time one of joy! Soooooo glad to hear that horrible regressive spell is over. Woo hoo!
Well, ah, mostly. Day 2 he had some "angry moments," according to his folder, but he recovered quickly. This morning they finally got our bus paperwork sorted out... and he was a lot more terrified of the bus than I thought he was going to be at this point. It's big and noisy and all that. The lady was nice though and re-seated another little girl so that he could be put in the carseat right next to the front window, so he could see me waving. But yeah, he was pounding on the glass screaming, "Mommy!" the whole time. It was sad. I think he'll be okay with getting dropped off this afternoon, but mornings may continue to go poorly for another few days.
any chance mom could ride a bus with him and comment on how neat and wonderful it is? Just thinkin out loud
Nah, I'd have to bring the baby and her carseat for one thing, and then I'd have to walk home (carrying it and her) because the bus has other routes for other schools it has to get on with.
A bus - not that bus. Just to ride on with mom and mini - heck maybe even dad. Just to be on and ok with.
I'm sorry if you've already posted about this, or tried it:
Amy's organic brand has some Gluten and Dairy free products that might be worth checking out. I noticed one of their meals while at a local "farmers market" store.
In case you hadn't heard of it/seen it, thought I would share.
http://www.amys.com/special_diets/index.phpHow's it going, Ms Fobble? I hope the silence means nothing horrible to report.....
Oh, it's going well, I'd been meaning to post an update on things but I've been busy getting used to the new school routine... speaking of, he loves school! Runs to meet the bus everyday, and often whines at the end of the day when he realizes school is over. We were very impressed with everything we saw at parent information night; our school district's program is really great.
First, the great news is his lab tests came back showing no sign of mitochondrial dysfunction whatsoever! This is great, but weird, because he still showed high lactic acid levels--which was what led to the suspicion of a mitochondrial disorder in the first place. One other explanation was a zinc insufficiency--it's very unusual for the levels to get so high just from a lack of zinc, but not impossible, and my kid is certainly very unusual. The lactic acid levels came down slightly when we put him on 15 mg/day of zinc (which is the 100% daily recommended allowance,) but it was when we added another 20 mg that we saw the big cognitive improvement. So big, in fact, that we went ahead and started his sister on it, just to see what would happen. She is doing better on it as well, though not as dramatic an improvement as his. We won't know how much his lactic acid has continued to come down until the next round of blood tests, but at this point we've marked that issue as tentatively settled and moved on to the next one.
The next issue of course being the perennial one, his digestion. The doctor agreed with the nutritionist that his number of food sensitivities was stunning, especially considering at least half of them had definitely developed just in the last couple of months. After a review of his reactions to the antibiotic (great) and antifungal (terrible,) the conclusion drawn was: the antibiotic was the right path to take, but if his stools never totally improved while on it then we didn't go far enough; meanwhile, the antifungal was ineffective against whatever strain he's got in there--enough to make it struggle a little and give him the classic die-off reaction, but not nearly effective enough to just kill it. So ultimately in the future we will likely need to try another round of a different antifungal, but in the meantime we're starting with what we know works, a longer course of antibiotics. We're about a week into it now, and are finally seeing some solid stools again. The other thing we're supposed to add in another day or two is this product called
IgG 2000 DF, which is basically straight immunoglobulin antibodies in powder format. It's one step below
IVIG, and of course a lot easier to administer. The hope is that this should bring his digestion back from the brink and allow him to go off the rotation diet soon, and start eliminating some or all of his sensitivities over time.
Another thing his blood tests showed was he has exceedingly low Vitamin D levels, despite the fact that he goes in the sun every day and gets 100% of his daily allowance (400 IU) in his multivitamin. (Good prediction by Pie on that one!) So we've bumped him up to a concentrated liquid D3 supplement, 1500 IU/day. Haven't seen a big external change from it, but it's basically impossible to overdose on D so we went ahead and put his sister on it as well, and she has reacted extremely positively to it.
So the current rundown of meds is this:
1500 mg Vitamin C (immune support)
2000 mg fish oil (immune support)
4 tsp apple cider vinegar (digestive support)
1 tsp multivitamin powder
1000 mg Calcium
1 1/2 tsp Metronidazole (antibiotic)
5 drops Vitamin D3 liquid
Probiotic capsule (because even if it's only in him for a few hours before the next antibiotic dose, he needs all the help he can get.)
20 mg Zinc
Epsom salt lotion (magnesium sulfate)
**IgG 2000 DF - starting soon
The multivitamin and antibiotic get split into two doses, morning and evening, and the Vitamin C and apple cider vinegar get split across all his juice cups during the day. Minifobette is on a reduced list of some of the above, including finishing off the multivitamin supplement that Minifob can no longer take because it has coconut in it.
I'm really hopeful about the IgG supplement. The first sign that we'll know it's working is if he gets sick right away, because that will be an indication that his immune system is actually functioning appropriately and starting to fight off all the inherent chronic infections he has going on, rather than attacking itself. (That's one of the other signs that he has an immune dysfunction in general, he doesn't get sick. Not ever. Everyone else in the house can be horribly ill, and he's totally fine. He had a few colds as a baby, and a Roseola infection at about 18 months, and that was it. Nothing since then.)
Excellent news. So happy for you that the school is working
1500 mg Vitamin C (immune support)
2000 mg fish oil (immune support)
4 tsp apple cider vinegar (digestive support)
1 tsp multivitamin powder
1000 mg Calcium
1 1/2 tsp Metronidazole (antibiotic)
5 drops Vitamin D3 liquid
Probiotic capsule (because even if it's only in him for a few hours before the next antibiotic dose, he needs all the help he can get.)
20 mg Zinc
Epsom salt lotion (magnesium sulfate)
**IgG 2000 DF - starting soon
Now to figure out how to get all that into one yummy cookie. :D
We're still practicing the pill swallowing. He'll do it on accident sometimes, because I'm starting with the smallest of (empty) capsules, but he doesn't get what I want him to do yet, he mostly just tries to chew it. What I need to do is just knuckle down and give him a real capsule, because then if he chews it there will be an immediate negative consequence in the form of nasty medicine powder flooding his mouth.
Yeh it'll taste really bad and he may NEVER let you try that again.
Try training him with frozen peas. I had issues learning how and thats what my mom did. I eventually "got it"
Fight to overcome autism gets major boost, higher priority
Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.
President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.
We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism.
Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.
Minifobette's labwork came in, which means we can begin the real work of getting her healthy again.
Some numbers are better than Minifob's, but most are worse. The good news is she does not have a vicious bacterial infection like he did (and still does, based on current symptoms,) but she also shows zero good bacteria colonization, despite being on strong probiotics for months. Mild fungal infection, which if we're lucky will be knocked out by a single course of antifungals (not the case with Minifob, but here's hoping.)
But her other metabolic numbers are farther off. They show a significant need for carnitine, which is typical in kids with low muscle tone and delayed physical milestones (definitely her, and definitely not her brother.) Her lactic acid level is also too high, so they're going to do the same bloodwork he had to rule out a mitochondrial disorder. But most distressing is that 5 of the 8 detoxification markers are extremely high (all these levels they're testing for are various substances in the
Krebs Cycle.) This is typical of kids who had a single large regression (Minifobette,) rather than weirdness slowly creeping in over time (Minifob.) It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up, just that we know the cycle's broken, so whatever goes in definitely isn't going to be coming out. But she's far too young to see if chelation drugs can pull anything significant. The only option right now is to try to raise her glutathione level so her body can maybe do some of the work itself after all, but realistically it will be a stopgap measure at best until she's older. IV glutathione is the most effective option, but it's not really a viable one. So we're going to try a transdermal (skin cream) compound first, and test her again in a few months.
Meanwhile, we decided a few weeks ago to just rip the bandaid off, and put her on an elemental diet. This is a liquid formula that is 100% pre-broken-down amino acids and nutrients, so the digestive system gets to take a complete and total break. No more allergens, nothing barreling through and agitating open wounds or adding to the inflammation, just time to heal. It's a very safe and effective treatment, but parents usually exhaust other options first because taking away all food is, of course, not pleasant. But we figured better now than later. For one thing, she's so young there's no social aspect to food for her yet. For another, as long as she's under the age of two, the law says our insurance has to cover it, no questions asked. The formula runs a little under $600 a month, so that's important. The hope is that within 2-3 months max she should be healed and digesting normally, and then we can start reintroducing foods. With any luck this will allow most if not all of her food sensitivities to go away as well--no more pooping completely undigested fruit! We're still hoping it won't be necessary for Minifob, but if he doesn't respond to this latest (third) round of very strong antibiotics, we're going to start running out of options soon.
It was hard to get her started--she refused it for 30 hours straight, and then I broke down and fed her real food for dinner that night because she was literally staggering. But the next morning I went right back to offering only the formula, and from then on she drank it without complaint. And within a day or two she was drinking it eagerly and being much more energetic and happy all around than she has been in a long time. I feel pretty sure that whatever else is going on, she is in less pain now than she was. Unfortunately her poop hasn't improved yet--it's different, which is something, but it's still mostly liquid, very green, and there are still the occasional mystery white globs. No idea what the white globs are--they say they don't think it's the same as the white poop you get with liver failure. It might be dead yeast colonies, but they're infrequent so we've never been able to run a test. The nutritionist told me that even though the input is liquid, she should be having completely normal, solid brown turds (not the word she used) on this diet, so we'll know when we get there.
It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up
If there are heavy metals in her system, where do you think they might have been coming from? If I remember correctly from pictures of your house, it's pretty modern. Do you think it's environmental, or food, or something else?
Are you even saying here that you think there may be heavy metal poisoning?
The amino acid liquid diet is amazing. I hope it works well!
Trace amounts of stuff are everywhere--soil, carpeting, air, and especially tap water. It's not at the level of eating lead paint or anything, this is the little stuff normal bodies just process right out. But if you don't process it, it builds up, and eventually gets to dangerous levels. If you've already broken the system, for example, 4 vaccination shots will get you to a symptomatic level of aluminum. (You get trace amounts of aluminum drinking sodas in cans, too, not that she's ever had a soda.) Most cities' tap water would get you to dangerous levels of several things in just a few months of drinking it. Cheap bed mattresses commonly use arsenic as a flame retardant. Or if you have a single piece-of-crap toy from China with lead in it, chewing on that one toy could do it. We're constantly taking it in and peeing it out, no harm done. But if you couldn't pee it out, you'd be in trouble.
I do think she has some buildup, but we'll obviously test to be sure. And once we know she's high in, say, arsenic, we can get appropriate test kit(s) that we can use on stuff around the house to help us figure out where it's coming from and hopefully get rid of the offending item.
Clod - nothing to say here, but wow, crikey. Your kids are so lucky to have the determined powerhouse that is you for a mum!
Just a few happy thoughts and hugs for you Clod.
It's become obvious that I seriously screwed up.
2 and a half weeks ago, we were invited to a birthday party of one of Minifob's classmates. The invitation proclaimed GFCF cupcakes would be available, so we were excited to say we could actually attend. I was pretty sure they would be made out of rice flour (as most pre-made GF items are,) which is one of the things he has a digestive sensitivity to, but I figured we could handle a day of extra bad diarrhea for the opportunity to actually practice social skills and pretend he has friends in the real meaning of the word.
Well. As you can tell from the tone of this post, that was a poor decision. It occurred to me too late that they were almost certainly made with real eggs, which he has a true allergy to, and a pretty strong one at that. I'm so used to making everything myself, I actually forget to think of all the things he can't eat--I forget that normal people don't make their bread products with potato starch by default like I do.
So. Full-on screaming and flailing tantrum within 30 minutes of eating. Needless to say, he couldn't participate in the rest of the birthday party. So much for social interaction. But it continued for 5 straight days. And since then he's been borderline--he'll mostly behave in the house, but I can't take him out in public. Confirmed that the hard way when I tried to let him walk with me to the mailbox like we'd been successfully doing for a couple months now, and had to do the neighborhood walk of shame carrying him all the way back to the house shrieking at the top of his lungs.
Cognitively he's still pretty much where he was, it's just his behavior that's regressed 6 freaking months. His teacher says he's suddenly having some trouble with changes in their routines, things he has been fine with since day one of school. Yeah, tell me about it. Obviously the egg is long out of his system, but the doctor's theory is we reinflamed his intestines by pouring allergens through it just as it was trying to heal, and he'll need extra time to recover from that. Great. No more fucking birthday parties, kid. Sorry.
Meanwhile, the rotation diet seems to have had no effect; we are still losing foods at a regular rate. Pears and fish are the latest casualties. We're down to about 9 foods total that he can eat.
We're beginning the process of getting certain things documented (blood tests and whatnot) so the insurance company will cover the elemental formula for him. The blood tests will also hopefully give us a clue as to which particular steroids or anti-inflammatories he might respond best to. He'll probably be on the liquid diet with his sister by Thanksgiving.
:( I'm so sorry to hear this, Clod. What a let-down!
So sorry Clod. How awful for you.
Oh, Clod! And you have worked so hard. :( I am sorry. I wish I had better words of comfort, but I hope he heals quickly.
I can't even imagine how hard it would be to restrict ALL foods from a kid, but I think it's the right thing to do, the fastest way to heal him and move forward. Sending you strength and patience vibes.
man, clod. that totally blows. Poor little guy, poor family.
Speechless, Clod. I hope and pray for a successful outcome for your kids. I wish I had a magic solution to this. I am constantly amazed at your resolve.
Sorry this suck so bad, but you are AWESOME!
Nah, see, I may be awesome during the weeks when my kids are making progress... but times like this, I swear to God I'm shoving him in front of the TV for upwards of 3 hours straight every day just to make him be quiet(er). It's not my proudest moment.
um... clod... for many parents that's the norm. If the kids are lucky, the parents suggest they might want to do their homework while they watch. trust me on this. People Invite my kids over for marathon platdates and when i say "are you sure?" they say hell, yeah, they'll probably just watch TV or play video games most of the time".
Clod, you should seriously ease up on your self. It's not like you're shoving him in front of the TV for three hours just to qui -
Umm lemme finish reading your post.
j/k you know I think you are the 2nd best mom I know.
um... clod... for many parents that's the norm. If the kids are lucky, the parents suggest they might want to do their homework while they watch. trust me on this. People Invite my kids over for marathon platdates and when i say "are you sure?" they say hell, yeah, they'll probably just watch TV or play video games most of the time".
eek.
I send them into the yard to play. We don't have a TV or Video games. Not even tetris or pong. I feel guilty about sending them outside to play instead of teaching them how to do something useful.
yup. I hear ya. of course it means mine are awesomely behaved on playdate because they get to look at the box with magic pictures.... :lol: ...and that is also invaluable for road-trips.
It's become obvious that I seriously screwed up.
And you probably will again, that's life. After the crap you've been going through, the things you've had to learn, much of it on your own breaking new ground, it's a fucking miracle you haven't made more mistakes.
I think you've done a miraculous job, and I worry people don't realise how much you've sacrificed, how much of yourself you've put into the battle... especially the people closest to you. From what you've written about what friends/family have said and done, or at least proposed to do, they don't get it... and don't appreciate your efforts.
I know your personal life is none of my business, but you've laid out so much in this thread, I'm concerned what toll this lifestyle is taking on you. Yeah, I know you don't have a choice, some might, but you don't. But please don't be too tough on yourself, you don't need or deserve that... mkay?
I think I forgot to mention, I did find a local support group of biomedical moms awhile back. We have a messageboard, and meet in person once a month--in the late evening, after we've all put the kids to bed, because if there's one thing these women understand, it's that Daddy can't do the bedtime routine by himself. :) They've been pretty invaluable.
Cool, there's nothing like support from someone that's walked a mile in your(similar) shoes. :thumb:
What Bruce said, squared!
I don't even know what to say Clod other than wow, dammit, and here's a hug. (And you more deserve the three hours of TV time if it gives both of you a break.)
I'm very emotionally ambivalent about the last two days.
By some accident of calendar cramming, yesterday was both the day we started Minifob on the liquid diet, and his checkup with the neurologist, who hasn't seen him since April.
I was stoked about the neurologist appointment. Because this is a guy who, while not a sanctimonious know-it-all like the pediatrician, did waffle on the possible effectiveness of the GFCF diet when I told him we had (just barely) started Minifob on it last time we saw him. So I was very excited to bring him back and show him our amazing progress.
But we didn't even get to see him. The assistant lady (I don't know exactly what she is, but it's somewhere between the nurses who take your height/weight and the doctor himself) was suitably impressed with his gains, and asked a lot of interested questions about his dietary stuff... and then said that was pretty much it, we didn't need to come back unless something drastically changed. As if they saw this all the time, as if they hadn't told me 6 months ago that this wasn't going to make a difference. She just smiled and shrugged and said, "Whatever you're doing, it's working, so my advice is don't change anything." Maybe she was sparing me any discouragement from her humbug boss living in denial, or maybe she was protecting him from me. :)
But at any rate, Minifob's no longer a viable candidate for any of the neurological drugs routinely prescribed for autistic kids. Good to know.
Meanwhile, the liquid diet's going okay. He's not enjoying the drink mix, but he's willing to bargain individual swallows of it for things like another 5 minutes on SesameStreet.org, or another blow on the bubble wand. And when he isn't being specifically reminded about food, he's been in a really stellar mood. He's not making it as hard on me as his sister did, not by a long shot.
Anyway, I finally got around to putting together a new progress video last night. Mr. Clod made fun of me for the final title screen, ("You don't have to go all Oprah about it...") but I told him he could bite me. :)
[youtube]MOUDn2pxyXc[/youtube]
...and for Mom of the Year... [SIZE="1"]the envelope please[/SIZE]... Clodfobble!
Excellent. Great work. You -as ever- have me in awe of your resiliance, resourcefulness and just general go-get-em-ness.
I expect you've seen
Elana's Pantry Clod, but maybe others following this thread in search of information haven't ...
Yes, both Elana and
Ali are regular bookmarks of mine. Next in line to check out is
Karina, but I only have so many hours in the day to slog through blog archives. :)
Yes, both Elana and Ali are regular bookmarks of mine. Next in line to check out is Karina, but I only have so many hours in the day to slog through blog archives. :)
It's not so much that I think you need to know this stuff, as that this thread may be a useful resource for others treading your path .. here's another link, to "
Gluten-Free girl ..."
And, by the way, Clod did I ever tell you that you're a marvellous, MARVELLOUS wonderful mum? Huh? Did I?
My daughter wants to be a nun!
Thanks, to all of you. I get uncomfortable when people start trumpeting my mothering skillz, because really, I'm not that amazing. At least I don't think I am. It's like lumberjim said, I'm plenty dysfunctional just like everyone else. And I'm not putting this stuff out there to make people aware of my situation personally, but rather the overarching situation of everyone I spend time with these days.
Lots of parents have to go above and beyond to care for their kids, the only thing that makes me different is I'm doing it against the advice of a lot of people. You guys start giving me all this credit, and my first thought is, "No! Didn't you see? I didn't do this; his doctor did this--despite the fact that 90% of other doctors say he's a quack!" It would be easier if I could feel only joy at his progress, rather than this undercurrent of betrayal. But I think the sense of betrayal also makes me fight harder for him, so I guess that's good too. Well, good for him. And good for my massage therapist's pocketbook. :)
OK so here's how it is clod. There aren't any bad parents on the cellar that I've noticed. And there are many good parents here, that I've noticed. I like to include myself in this group even though I know for sure that half of the stuff that happens in our day-to-day existance would win "suprisingly-different parenting" awards at best.
but you really have gone above and beyond for your kid. there are many autism-scale kids in our school and their parents are mostly not involved beyond saying "yup, whatever you recommend" And this is a school that attracts proactive parents. I dread to think what happens in the other schools in the district.
...anyway, we know you're not posting here to receive accolade, but it's impossible to read your progress and not say anything. It is wonderful, you are wonderful, and don't worry, karma will come back and bite you in the ass at some point. I bet your dress will be tucked into your knickers at minifobette's wedding and no-one will notice until the pictures are developped.....
Monster nailed it. There may be, "Lots of parents have to go above and beyond to care for their kids", but how many are there that are doing it by becoming the pharmacy's best customer? In fairness, because they may have been mislead, and probably because they haven't done the work involved to know better, rather than taking the easy way out.
Monster nailed it. There may be, "Lots of parents have to go above and beyond to care for their kids", but how many are there that are doing it by becoming the pharmacy's best customer? In fairness, because they may have been mislead, and probably because they haven't done the work involved to know better, rather than taking the easy way out.
Very true
you deserve all the accolades you can get clodfobble. :)
That she marches on against the pressure is what I admire. There are no experts in the field and more than a little cash grabbing going on. She is rolling the boulder to the top of the hill on her own and one day it'll stay put.
That she marches on against the pressure is what I admire. There are no experts in the field and more than a little cash grabbing going on. She is rolling the boulder to the top of the hill on her own and one day it'll stay put.
That's so beautifully put griff.
Treating toddlers for autism boosts IQ later
[LIST]
[*] 17:18 01 December 2009 by Bob Holmes
[/LIST]
Toddlers with symptoms of autism can show dramatic improvement if they are given early, intensive therapy. The finding, from the first randomised controlled trial in such young children, should settle the question of whether early screening and treatment of autism are worthwhile.
I snagged the article in
Pediatrics; let me know if you'd like me to send it to you.
Yeah, I saw a writeup on it; they used a Denver model of relational interaction based off the older method of "floor-time." Which is all well and good, right up until you find out how much it costs... Admittedly, since it only takes 15 hours a week to be effective rather than the 40 recommended for ABA, the savings are relatively tremendous--it's like being allowed to buy a yacht for 60% off. :)
Heya Clod -- how are the kids doing on the 'elemental diet'? Is that working?
I hope everything is still going okay with school!
Clod, you've got your kids on elemental diets? That's interesting because I'm reading a book on Crohn's that recommends Total Enteral Nutrition as a means to remission.
Yes, both of them are on the elemental diet, specifically a brand called Elecare. It's been moderately helpful for the girl, who started a little over 8 weeks ago, but it's been absolutely fantastic for the boy, who will hit the 3 week mark tomorrow. We started on a Tuesday... by Thursday he was drinking it without bargaining, and by Friday he wasn't asking for real food at all, even when he saw my stepkids eating some of his favorite foods for lunch (we did try to keep him away so he wouldn't be jealous, but he got in the kitchen anyway.) By the time he went back to school on Monday, he was perfectly content to pull out his two drink bottles at lunch and snack time. Also, that morning he walked in and spontaneously greeted all his teachers and classmates by name, which previously he wouldn't do even with prompting. That's one more IEP goal checked off the list, and his speech and cognition have just continued climbing as the days go by.
Minifobette's been progressing, but it's of the three-steps-forward-two-steps-back variety. In the first few days after starting it, she was showing very big gains for her, with better eye contact, showing curiosity, and babbling constantly instead of being mostly silent. But then it sort of melted away again. We blamed the antifungal that she had just started, because often the antifungals can make you worse before they make you better. But she didn't ever get better, and when the course of antifungals was done, she only very slowly began getting some sounds back--she's still not where she was in those first few days. Plus, she's still having totally liquid poop, which is obviously bad. Minifob was having it too after he started the formula, but then I adjusted some of his supplements and added a vitamin called biotin, and his very next poop was 100% solid. Hooray! So I'm about to add biotin into Minifobette's cocktail to see if it does the same for her, but I have to wait a few days because we just started a different thing before the biotin did its magic on Minifob, and I'm trying to keep her variables as separate as I can.
Dar, have you ever heard of the
Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods.
Yay! So glad to hear that there's progress!
Dar, have you ever heard of the Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods.
No, but that's good info for an in-between choice.
How's the flavor of the Elecare?
Weeeell... The unflavored kind is super nasty. If you ever had your kids on baby formula, it's a lot like that. The vanilla flavor is okay--not great by any means, but mostly tolerable. Those are the only two flavors that Elecare comes in, but there's another brand called Neocate that comes in at least a half a dozen flavors, and supposedly those are better according to some of the other parents. I think they even have a chocolate flavor.
I'll start with something that tastes good. I can always fall back to the nasty stuff if I have to. :D
Are you going to be able to get it covered by insurance?
I don't know. I see nutritionist next week.
Is it expensive?
Oh yes.
My three-year-old requires 1500 calories a day, which translates to 24 cans/month = ~$800. I think an adult male requires around 2500 calories, or around $1300/month.
We had to do a little dance with our insurance to get it covered as medically necessary, but in the end we were destined to win because many states (including Connecticut, where they're based) legally require them to cover it for anyone under the age of 12, as long as you have a medical doctor's prescription.
These formulas were originally developed specifically to treat Crohn's disease, so I'd imagine you have a really good shot at getting it covered as well. But the nutritionist's recommendation probably won't be good enough; you'll need to get your gastroenterologist to write an official prescription for it. (This would only be for insurance purposes, though, anyone is allowed to order it online.)
I think an adult male requires around 2500 calories, or around $1300/month.
Holy crap. I'll definitely look into insurance.
Make sure you always reference it as a "complete nutritional formula," and not a "special dietary food," because one is covered and the other never is.
Another reason why I love the Cellar!
I'd post this in the "What's making you happy" thread, but I already posted in there once today. This blog post of my newest fan almost brought me to tears:
The new Gluten free diet and my daughter
I'm loving this site. SERIOUSLY. Loving it! She's has videos of her son before and after the diet... The video of her son (before the diet)- is SO similar to my daughter. Screaming, running, spinning, yelling, walking on her toes, hands flapping, all of it.
And only TWO weeks into this diet ( that I've worked so hard on) she showed me that she needed her diaper changed by lifting her dress and patting her diaper!!! Then sat on the potty ( that she'd been taking a part and throwing around the house since I bought it months ago). And later on, she pretend played with a small stuffed toy chicken, we have, jumping up and down on her alphabet blocks!!!
...
She's in there- I saw it today- and she's coming out.
This is a momentous day- December 18th, 2009. A day of miracles.
You're a hero! Or is it heroess? Heroer? Heroine?
Aw fuck it, you done good. :notworthy
Oi Clod! You missed out this bit ...
It's the best gf ( gluten free) site I've ever seen.
First of all, she's brilliant, second- she's fabulous and third- did I say brilliant?
You rawk! We know it, she knows it, and soon the world will, too! :thumb:
Close to tears Clod, amazing.
Big breakthrough with Minifobette!
As I mentioned a couple weeks ago, she'd sort of slipped back down into silence the longer she was on the liquid diet, and we couldn't figure out what was going on. I realized that if nothing else, it had been quite awhile since we'd done a full cleanout on her with magnesium citrate, and that's always been something she responds well to. So we started it... and stuff just kept coming out, and coming out, but in relatively small quantities. And along with the small bits and pieces of terrible stuff, she was losing clear liquids too, and you can't keep that up for very long without a risk of dehydration. So we took the nuclear option--on Christmas Eve, no less--and went at it from the other end with an enema (yes, they make them in pediatric sizes.)
Oh. My. God. The stuff that came out of her was truly unbelievable. She won't sit on the toilet, so you just have to squirt the bottle up there, and let her hang out in the bathtub until she's done. (And then get out the hardcore disinfectant to clean the tub.) First, there was the green liquid, which is what we normally see in her diapers... but then came the bright yellow mucous, the sheer quantity of which seemed to defy the laws of physics. When she was on the antifungals, we would see a little bit of this stuff come out, but never ever like this amount. Twenty minutes later, she was a changed kid. Tons of babbling and awareness. We've continued to do enemas every 3-4 days on her, and she's doing better and better. We're still seeing the mucous, but less each time. At this point she's pretty much back to where she was in the first few days of the liquid diet. We now have about ten words that she'll say with prompting, though none of them have become voluntary yet.
I don't know how regularly we'll have to keep doing the enemas once we get this particular buildup of mucous conquered, nor do we know for sure what caused it in the first place. Usually mucous is a sign of infection, and our best guess is that the liquid diet fed the pathogens to such a degree that the medications were powerless in the face of such a monstrosity. But if you can't kill it, I guess it works just as well to physically force it out, right? It's clear that the enemas get the cognitive results we want, and are a thousand times more effective than the laxatives, not to mention way cheaper ($1.74 a bottle? Are you kidding me?) so I'll be keeping a stock in the bathroom cabinet from now on. I worry on occasion that I sound like such a cruel mother, but then over the holidays my mother-in-law told me that when she was a kid, her parents would routinely give her enemas for constipation, as there weren't as many medical laxative options back then. They're certainly not fun, but they get the job done, and in the long run they're more gentle on the system than habitual use of any medication.
In other news, now that Minifob's having really solid poop again, we were able to do his chelation challenge test. I should hopefully have the results back in another few days, but I'm feeling a lot more optimistic about them than I was. The day after the challenge dose was an incredibly good day for him, and what's more, the weird cyst that he's had in his neck since he was a year old has suddenly shrunk by half. (It's hard to see in photos, but you can see it a couple of times in
this video, most notably at around 40 seconds.) Neck cysts are another one of those things that are inexplicably very common in autistic kids, though I've never heard anyone specifically say theirs went away with chelation. Anyway, I'll post the results when I get them, as I promised to tw.
It's sooo much more fun to be going forward. :thumb2:
And just think, when they get to be those nasty teenage creatures, most mothers have to rely on the, I carried you for 9 months, plus I wiped your nose & ass. But you'll have so much more guilt inducing ammo. ;)
Yay for the steps forward! It's remarkable that an enema can cause speech improvements. I understand the connection, but still, it's not something I would have ever expected.
Good news! We just re-ran Minifob's full IgG allergy panel, plus a handful of IgEs. After 3 months on nothing but elemental formula... we've gone from 27 foods ranked 3+ (most severe,) down to just 3! Walnut, sesame, and garlic. All pretty easily avoidable. There are a handful of mid-range foods we'll still be avoiding to be on the safe side, all of which are nuts or beans, but at least we can see the numbers are trending downward, and we got back those all-important fruits, vegetables, and cooking oils.
Oddly enough, his IgE allergies kind of got worse... on the one hand, his egg and peanut numbers got less severe, but on the other, new IgE allergies showed up for both milk and soy, despite the fact that he hasn't had a molecule of either since before the last time we ran the tests. We weren't going to be giving him either of those foods anyway, so he can be allergic to them all he wants, but it seems weird to me.
But overall, this is concrete proof that the whole elemental ordeal has made a difference for him. I mean, we've seen cognitive and behavioral improvements on it, but it could never be a permanent solution, so I was always afraid that we'd just lose all those gains again when we eventually had to reintroduce foods. But now we know it's (mostly) safe! Hooray!
Also, we ran Minifobette's numbers for the first time. The only foods she ranked at 3+ are pork, soy, and garlic (what is it with my kids and garlic?) Also, she technically has a cow's milk allergy, but it's not like we were going to be giving her that anyway.
Humorously, while I was searching for my previous posts in the thread regarding his allergies, I came across this one by Juniper:
Diet modification too. Sometimes odd behaviors in children (and probably adults as well) are caused by allergies or sensitivities to food, such as gluten, wheat products, artificial dyes, etc.
Right there from the beginning, on page 2. Clairvoyant, she is.
Excellent news! Wow - I'm so happy for all of you.
:juggle: Many less balls to keep in the air... excellent.
So do you just slowly add food back in or... what now?
Yeah, we start with chicken broth (homemade only, boiled with the bones, and no added starches,) then after increasing amounts for about a week, we move up to heavily steamed, pureed veggies, then bananas, then harder-to-digest fruits, then actual meat proteins. No more than one new food every 4-5 days. Meanwhile we taper off the formula to balance how many calories they're getting from the other stuff.
We already started with Minifobette. She drank a little of the broth at first out of curiosity, but after the first day she refused it. But she's always been the picky eater, very opposed to anything new, so I didn't think it was from digestive pain. When I make the big batch of broth, I freeze it in ice cube trays, so I can thaw as many tiny servings as I want and save the rest. We started adding one melted cube of broth at a time to her formula cups, and by now we're up to four, which is like 1/2 cup at a time, so she's holding steady at a total of 2 cups per day. Poop is still terrible, but adding the broth didn't change it in any way, so that's something I guess. We've obviously given up on the elemental formula fixing her digestion outright.
Monday is butternut squash day (version 2.) Version 1, I tried to give her a tiny piece of heavily steamed squash, about 1 cubic centimeter--and before she could even swallow it, she projectile vomited all over me. But it couldn't have been a digestive reaction to it, because like I said, she didn't even swallow it. It was just nausea from the new, unexpected taste. At this point she's so sensitive she can even tell when I switch to a new batch of broth. So instead I'm going to try putting a tablespoon of truly pureed, watered-down butternut squash in her formula along with the chicken broth, and slowly build up the flavors. Hopefully after that goes on for awhile she'll tolerate a semi-solid piece of it, and we can start scaling back the number of formula scoops in her cups until she's just drinking chicken broth and water.
The big thing we have to watch out for is the overlap schedule--we can't take away all of the formula until she's got a good amount of bananas going at least, because with just chicken broth and veggies she won't be getting any meaningful carbs (unless we used a starchy vegetable like sweet potatoes, which we're supposed to avoid in the beginning as they're harder to digest,) and baby brains need sugar far more than adult brains do.
Sounds like you have a good plan. Well organized and thought out. Looking forward to reading the updates.
New autism study in Houston
Doctors have suspected a link between autism and digestive problems for years. Now Houston researchers are testing a drug with such potential, that the Food and Drug Administration has fast-tracked it. Scientists believe it may improve autistic behaviors.
Cool. Sounds like they're giving the kids digestive enzymes. The article just says "the study medication... helps her digest protein," but they don't say which proteins. Gluten and casein are, of course, two major proteins. I know two kids who are just taking large amounts of DPP-IV (the enzyme that breaks down gluten and casein) instead of being on a GFCF diet. But there are also different enzymes for carbs, fats, and phenols (fruits & vegetables) which help different autistic kids to varying degrees. Minifob takes a broad-spectrum combination enzyme that has helped quite a bit over the months, while Minifobette is a phenol girl, all the way. She can eat meat hand over fist, but give her just a few bites of fruit and it's coming right back out again unless she's on the enzymes.
That is so fascinating. It's like a friggin detective job.
Yeah, there's a reason I have a stack of notebooks detailing every bite of food, every bowel movement, and every behavioral change the kids have had for over a year now... :)
Sadly, the part that excites me the most is that if enzyme products (as well as some of the other helpful supplements) do get classified as things you could be prescribed by a doctor, then we could get insurance coverage for them. Several of them cost more than a monthly copay.
What do you think about the papaya enymes? I imagine MiniFobette would be a no go. Are there any naturally occurring sources of these enzymes? Have you checked Standard Process?
Yes, Minifob's multi-enzyme contains papain, and the
same company makes formulations without it as well for those with specific allergies. Standard Process is a quality company in general, but a lot of their products actually contain gluten, and they won't certify any of them as completely gluten-free because of cross-contamination problems. Houston Enzymes not only certifies GFCF (as well as soy, starch, artificial anything, etc.) but they make them in chewable form for kids, which is a big help for us.
Many foods have some level of naturally-occuring enzymes, but it's a crazy web to figure out which foods help digest which other foods, and certain cooking processes destroy the enzymes altogether. Plus, eating papaya at every meal is less than ideal. :) Ideally, your body ought to be generating sufficient levels of enzymes by itself, but of course that's not always the case.
Goddamn I hate waiting for lab results.
I mean, on a grander scheme, I like the fact that our doctors base their decisions on confirmed lab work. On the other, there are times when I am quite capable of interpreting the familiar symptoms, and I don't want to freaking wait for some piece of paper to tell me what I already know.
Case in point: Minifob has been having a major regression into his old OCD symptoms. We've suspected for awhile, based on specific improvements while on particular antibiotics, that part of his puzzle includes an autoimmune disease called
PANDAS. Basically when PANDAS kids are exposed to strep, instead of getting a sore throat or a fever, they get OCD symptoms instead. Anyway, this flareup gave us the opportunity to test his strep titers to confirm it, which is great and all, but in the meantime I had to live with three weeks of severe door obsessions while I got an appointment with the doctor, went to get the bloodwork, waited for the results, and got another appointment with the doctor to go over the results and get the antibiotic prescription called in. And then the medical assistants were all off for Good Friday, so I don't get the antibiotic prescription called in until Monday. Pbbbt.
Meanwhile, we have
also been waiting on stool test labwork for Minifobette to confirm that her 14-day course of Flagyl did not, in fact, clear up the aggressive bacterial infection she developed while on the liquid diet. I knew it hadn't, but again, all I can do is scoop the poop into the little vial with the plastic spoon, FedEx it off, and wait 4 weeks for everyone to get their shit together (ha ha ha) and find the misplaced results so they can finally tell me, "Oh, look, she's riddled with
Enterobacter cloacae. She needs more antibiotics."
...And then the medical assistants were all off for Good Friday, so I don't get the antibiotic prescription called in until Monday. At least I only have to make one trip to the pharmacy, right?
OH
MY
GOD
I'd've gone postal by now.
You deserve a sainthood for sure.
It's okay. Other than the sudden OCD, Minifob is doing just awesome. Since we started the DMSA, he has gotten much better at conversations, started making spontaneous comments, ("Daddy, you need a shirt!"), and taught himself to read.
The autism community likes to use the "pieces of each kid's puzzle" metaphor, but I actually prefer to think of it as one huge game of whack-a-mole. Minifobette still has way too many moles up right now for us to be able to know much. When we took her off the liquid diet, I was ready to call the whole thing a huge failure for her--but then, the moment she got back on real foods, she started having solid brown poop (she'd been explosive liquid green for months before and all during the elemental diet.) So obviously it did something good for her, despite the infection... that's apparently one mole down we didn't even know about because it's been hiding in the shadow of the big ass bacterial mole. Smash that fucker down, and the board might be mostly clear, or there might be others, you just never know.
It's okay. Other than the sudden OCD, Minifob is doing just awesome. Since we started the DMSA, he has gotten much better at conversations, started making spontaneous comments, ("Daddy, you need a shirt!"), and taught himself to read.
The autism community likes to use the "pieces of each kid's puzzle" metaphor, but I actually prefer to think of it as one huge game of whack-a-mole....
I love the imagery here :D. You RAWCK Clod, as I think I've said before, but it's worth saying again (and again). Here's sending you Vibes of Patience and Determination (just in case you need any ...).
Today was a good day.
First, Mr. Clod managed to take the whole day off from work, so he could stay with Minifobette while I took Minifob to his two separate doctors appointments. And while he was here, he did like 4 hours of work clearing overgrowth in the back yard. Awesome.
But aside from not having to drag the girl-child along, the doctors appointments went really, really well. The first appointment was with an EarNose&Throat guy, because despite 20 days of Zithromax (total, not all in a row) we just can't seem to kill this strep infection. I was worried because 1.) Minifob's tonsils are not super-inflamed at this exact moment (the pediatrician who most recently saw them said, "certainly very large, but some people just have large tonsils..." :rolleyes:), 2.) as always, he has no fever, which usually gets us dismissed out of hand, and 3.) we've never seen this guy before, so he has no baseline to compare current OCD behaviors to the previous lack thereof. But this doctor was not only willing to take his behavioral history into account, he mentioned on his own that in his experience certain inflammatory diseases can lead to neurological symptoms, and that in fact, maybe it's coincidence, but he's removed tonsils from more Asperger's kids than he can even count. (Because of course the Aspie kids are far enough down the spectrum that they can actually speak up and say, "Hey, I'm in fucking pain here," but I digress.)
Anyway, long story short, he won't commit to removing the tonsils yet, but he'll do an adenoidectomy for sure. If, on the day of surgery, the tonsils look worse than they do now, he'll take them too. It's scheduled for the Monday after his 4th birthday party. I'm a little nervous about the anesthesia (though I've done my research on which are the best options for someone with his metabolic problems,) but overall I'm really excited that for once, there is a definitive solution to a problem: no more adenoids/tonsils, no more places for the strep to live, from now until forever. And if we do have to walk away with the tonsils still intact, at least we'll know that the hidden locale is eradicated, and any future infections will be in a place that a normal doctor can see the inflammation.
Then the second appointment was with the developmental optometrist. The joyful part there was he did the whole exam without any kind of complaint. He played the "eye games" and held the "camera" up to his face and stuck his chin in the focusing machine and even let the optometrist shine the refractor in his eyes. He downright enjoyed it, which I absolutely did not expect! End result is that he'll be getting glasses: first, to correct the astigmatism she found, but secondly, to give him a very slightly farsighted prescription for therapeutic purposes. The goal is that his eye muscles will have to deliberately relax in order to see through this ever-so-slightly "wrong" prescription, and she pointed me to a number of studies indicating that this can not only slow the onset of nearsightedness in children genetically predisposed to it, which he most certainly is, but it can also significantly reduce visual self-stimulation in children on the spectrum (poking the eyes, examining items peripherally or at an extremely close range, deliberately shining lights in the eyes, etc.) There are other tricks one can do with the lenses, such as giving them a prism shape that would warp the field of vision for a normal person, but for someone who is already seeing the world like a funhouse mirror, will make everything look normal. But we have to wait until he's able to take more detailed vision tests before we can determine if that's something that can help him.
But he looks so dang cute in his tiny wire frames! :)
You were overdue for a good one, congratulations.
On his best behavior... :idea:maybe he's allergic to his sister.
The birthday party was a huge success! I couldn't be happier. The perfect number of kids showed up, everyone was well-entertained and well-worn-out, the weather was beautiful, and to top it all off I got to socialize with a mom who told me she's just decided to start their dietary journey, and we're going grocery shopping together in a couple of weeks to help her get started.
Here's a look at the awesome not-cake I made, and the even awesomer birthday boy. (And hey, a free cleavage shot, as a reward for putting up with this endless thread...)
5:45 AM tomorrow morning, we arrive at the hospital for his adenoidectomy, and hopefully tonsillectomy. That'll be fun, no doubt. I expect to be scarce for several days...
That not-cake rocks. Boobies too. Surgery not so much, hopefully the results will make it worthwhile. Good luck to all concerned
Thanks! I'm actually kinda sad about the boobies, they are a pitiful excuse of what they used to be. Almost worth having another kid just to get the gigantic nursing boobs back. [/but not quite]
That not-cake looks delicious! And mini-fob has grown up so much! I still think of him as a little toddler. Great job, Clod. Also, good luck with the surgery.
But those of us who get to keep the nursing boobies also get to keep the baby belly too....
But those of us who get to keep the nursing boobies also get to keep the baby belly too....
I never had the kids but have the boobs and the belly ...
Oh, and well done Clod! Can you do my birthday not-cake too? Srsly, you could probably start a business right there!
Looks fantastic! I actually have a Pineapple and a watermelon at home - may pick up some grapes and try to replicate/duplicate your creation.
You are doing an amazing job! Hope all goes well with the surgery.
oh, and what Limey said.
Srsly, you could probably start a business right there!
He's a cute kid, Clod. Get the Chloroseptic ready.
Hope the surgery went well.
Surgery went great! They did not, in fact, end up taking out his tonsils, but the surgeon said they just weren't inflamed at all and he couldn't justify it. The adenoids, on the other hand, were large enough to be blocking 50% of his airway, so aside from the infection they were almost certainly interfering with his sleep as well.
Immediate post-surgery was fairly unsettling for me, though. Even with the lightest of anesthesia drugs (which the anesthesiologist was a total dick about, but in the end he agreed not to use the drugs I told him were unsafe for my son, which is all that matters,) he still hadn't woken up an hour after surgery, even with the nurse physically shaking him, and we had to resort to wiping him with a cold wet cloth to force him out of it. At that point he leapt outward in a confused rage, one eye more dilated than the other, drooling profusely, with his head lolling about uncontrollably. But after another half hour of restraining him in my arms and trying to convince him to drink some water, he was finally clear-headed enough to travel to a real room and watch his favorite DVD for another hour with only moderate yelling.
When it was time to go home, I sat in one of their wheelchairs while continuing to restrain him, and a kind nurse wheeled us all the way out to our car, and then helped me force him into his carseat. Halfway home, he threw up all over himself... and from that moment on, he was basically fine. We got home, he calmly changed clothes and ate a big meal, and happily played for the rest of the day. The surgeon called that evening to see how he was doing, and seemed sort of bewildered at my description, especially after seeing how he was in the recovery room. What can I say, he's a kid of extremes.
Less than a week later, we've seen a huge reduction in the OCD behaviors that led us to this point, and he's back up to his peak. I'm very happy with the way everything turned out. Meanwhile, I've compiled another progress video. He's begun teaching himself to play songs on the toy saxophone:
[youtube]HjUBerqFQ6I[/youtube]
Jeez, what a horrible experience, but I'm glad it all turned out positive. Our kid has had tubes put in twice, and it's been unsettling for me to be in the recovery room when he wakes up, but nothing like what you had to go through. Just 5 minutes or so of inconsolable crying and some minor thrashing around.
I'm glad you are seeing big improvements!
Just had a chance to watch the video. So he's reading some at his 4th birthday? That's pretty impressive. My kids knew their letters before entering kindergarten at age 5, and could read and write their names, but reading for them (and their classmates) wasn't anywhere near that advanced yet. Based on my experience, I think Minifob is almost 2 years ahead of most other kids in reading.
He's looking good in that video. Sitting still and focusing.
Clod, glad to hear everything went well.
your doctor story reminds me of a former cow orker. BIG guy. 6'5" easily 230 lbs of solid muscle. he had to have his knee put back together and because of previous experiences he warned the doc that he needed A LOT of the knock out juice and it could only be a particular type and he absolutely must be restrained otherwise he would have a involuntary violent reaction. He gave the warning, his wife gave the warning, and his mother who is a surgeon gave the warning. They were all ignored of course.
They hit him with the first med and it only made him twitchy and shaky so they gave him a second even though he was begging for them to listen to what they'd been told. When they hit him with the first try he sat straight up hit the doctor breaking his nose. At that point they restrained him and jammed him full of whatever the hell they should have used the first time around and out he went.
the doctor wanted to press charges but the nurses all verified the numerous warnings and requests the doctor had received so it went nowhere.
So glad to hear that Clod. Hope things improve as he heals.
So he's reading some at his 4th birthday? That's pretty impressive. My kids knew their letters before entering kindergarten at age 5, and could read and write their names, but reading for them (and their classmates) wasn't anywhere near that advanced yet.
Yeah, but the funny thing is, for a lot of kids on the spectrum, reading early is actually expected. He knew all his letters, upper and lower case, and the (multiple) sounds they made, at 18 months. I want to say more than half of the kids on my local biomedical messageboard were starting to read at 3. Yet at the same time, he can't
write any of his letters, or shapes, or anything. The only thing he can do with a crayon is imitate a rough closed-circle shape. That's more than 2 years behind where he ought to be.
Anyway, the reading (and the saxophone playing, for that matter) are both nice, but for him, the spontaneous commenting on what he sees in the pictures is far, far more impressive.
Clod - what terrifying experiences for you and him. Really glad you're out the other side of that, and seeing such great positive results so soon!
Clod, fwiw, that's my kids too. especially Thor and Hebe a bit. reading early, drawing/writing skills of a drunken sloth.
That play video -with the train track- struck me as a regular 4yo. nothing seemed odd. WHat you're doing is working.....
WHat you're doing is working.....
We're pretty happy with the results for him so far. :) Still not getting a lot out of Minifobette, sadly. Round after round of antibiotics, and the stool tests keep coming back just riddled with bacteria. She does better when she's on them, but we always lose it again when she goes off them. At this point I think we're going to change tack and focus on aggressively addressing her immune system instead, in the hopes that if we fix that she can kill the infections off herself. But that might translate into a weekly needle in the arm, which would suck. We'll see...
Craziest fucking thing happened today.
Okay, so, you may recall a bajillion posts ago I talked about how Minifobette couldn't seem to tolerate calcium supplements? Didn't really understand what to do with that information, other than not give her the calcium supplements, so I just sort of shelved it and moved on. Well a couple weeks ago I got hooked up with a series of research papers on the apparent subgroup of autistic kids who can't process calcium, the biological mechanics behind it and the typical symptoms and all that jazz. Long story short, the treatment is high-dose vitamin K, plus a few other things you're supposed to do alongside the K to mitigate some side effects.
So we started her on the K, and saw big improvements in both speech and awareness. Speech therapist was very impressed with the change. Hooray! But I was waffling on the necessity of the supporting supplements. They're just supporting, right? But two people on the K treatment discussion board stressed that if nothing else, you absolutely need to be doing this electrolyte drink (made from salt and potassium chloride; basically homemade Gatorade without the colors and sugars) alongside the K, because otherwise it will dehydrate the shit out of you and/or cause weird water retention problems. But Minifobette is really, really picky about her drinks, and I was unconvinced I could get her to drink it anyway. She was drinking plenty of plain water, I rationalized, and I just never got around to ordering the container of potassium chloride.
So today, we went to our local pool, and while we've been several times already this summer, this time the kids got into this whole drinking/spitting game with the pool water. Both of them had to have swallowed at least a quart, despite me telling them repeatedly to cut it out. And as we're leaving, Minifobette is just talking up a storm, doing fucking fantastic. They're always happy after a couple hours of water exhaustion, but this was different.
After we got home she peed a ton, like 3 or 4 diapers bursting at the seams. And still more talking. Curiouser and curiouser. This continued to nag at me, until tiny hints of memories and seemingly useless facts started to coagulate. It couldn't possibly be! But it is:
Last year, the district converted all our pools to saltwater. A search of our MUD website confirms that our saltwater pools are salinated with the more expensive, but higher-quality chemical combination of... magnesium and potassium chloride. My daughter guzzled therapeutic pool water.
That's bizarre. Then again, so is your life.:)
awesome. now get bust with that fobbleaid.....
Or I could always just take her back to the pool. The pool passes are paid for, and it's not like I can stop her from drinking the pool water anyway, right? :)
Kind of hard to regulate the dosage, though.
Plus she gets to drink all the other kids' pee!
I just love to hear whatever you find that makes Mini better, and I particularly love they way you tell the story! :)
Plus she gets to drink all the other kids' pee!
Bingo!
Hey Clod, are you getting any kind of inkling what could have caused your kids' autism? Sometimes knowing the "cure" will give insight into the disease. What the heck could be out of kilter in kids' bodies that causes autism symptoms, and that vitamin K and Gatorade fixes?
Wow Clod, That is a fortuitous discovery. It makes sense that without adequate electrolytes nerve functions would be impaired.
You, umm, should write a book. ;)
Wow Clod, That is a fortuitous discovery. It makes sense that without adequate electrolytes nerve functions would be impaired.
You, umm, should write a book. ;)
who would'a thunk
seriously potassium and magnesium rocks!
it helps calcium absorption
helps with muscle cramps too
I second the book idea. Srsly, you almost have to do that...
In your free time, of course.
It makes sense that without adequate electrolytes nerve functions would be impaired.
Supposedly, the electrolytes aren't so much an autism thing, they're just an issue because we're depleting the crap out of them with the high-dose Vitamin K (to account for the calcium buildup, which is--or can be--an autism thing.) How high-dose, you may ask? She gets 12 drops per day, and one drop is 1250% of the RDA. Anyway, by replenishing the electrolytes, we're really just making the K more effective at doing its thing, which is breaking down and removing her excess calcium. This ties into her digestive issues, because calcium is a primary building block of mucous, which her gut is apparently full of. Suck out the calcium, and you start to break down the mucous, after which point we can (in theory) try going after the bacteria again once its cute little slime shield is down.
Funny thing about the book idea, do you have any idea how many books are out there written by parents who have completely recovered their children? "Autism recovery" on Amazon gives 57 book results, about half of which are personal memoirs about specific children. The problem is no one reads them unless they already have an autistic child. But maybe I'll try to convince my son to write his own book about his experiences, eh?
Hey Clod, are you getting any kind of inkling what could have caused your kids' autism? Sometimes knowing the "cure" will give insight into the disease. What the heck could be out of kilter in kids' bodies that causes autism symptoms, and that vitamin K and Gatorade fixes?
Experts in the field have written entire books answering just the small part of what we know with regard to that question. If you want, I can send you the paper that focuses on just the calcitriol problem. But that's by no means the whole disease, and it's not even part of every kid's disease.
The complexity and varied causes of this disease give me the sense that there is something much greater that is going on here, though I have no idea what it might be and I feel any attempt right now to identify it would be just more looking at the leaves of a handful of trees rather than the forest.
I suspect that the more you uncover and confer with other parents who have these issues with their kids the bigger the picture will become and common underlying causes will be revealed.
Most researchers agree we're actually looking at a collection of different disorders, probably as many as 15-20. The "something much greater" is that so far, every piece they can pin down appears to be directly or indirectly immune-system-related.
There's a huge research initiative at Autism360.org, where you are encouraged to create a profile for your kid detailing every specific symptom they suffer from, every treatment that helped/hindered, and which symptoms each treatment affected. The goal is to have enough profiles to one day be able to use it like a social media system, where you can search for kids whose symptom profiles are an exact match to yours and see what treatments were effective for them.
That's great idea, but as you've related here, many parents won't even admit there's a problem. :(
Out of nowhere this evening, my son gave me a hug and said, "I love you" for the first time ever. :joylove:
not out of nowhere.
good for you, mommie.
Out of nowhere this evening, my son gave me a hug and said, "I love you" for the first time ever. :joylove:
Wow!
I'm overjoyed for you!!!!
Out of nowhere this evening, my son gave me a hug and said, "I love you" for the first time ever. :joylove:
Now you've made me happy!
Out of nowhere this evening, my son gave me a hug and said, "I love you" for the first time ever. :joylove:
That is so utterly
Awesome!
That's great to hear, Clod. Hopefully it's the first of many, many times.
Fantastic! And I agree, it wasn't out of nowhere, it was out of all you do for him.
Only the first time he's verbalized it, not felt it.
For Clod ... sorry its so long...
Sailing Program Provides Therapy on the Waves
Dani Buckley was not about to get on the sailboat.
"Being the mean mom that I am, I said, 'We’re gonna go,' " recalled Julie Buckley, Dani's mom. "We had about to lift her onto the boat."
And so the mother cajoled the daughter on board George Saidah's sailboat, part of the Heart of Sailing Foundation's fleet. The organization, which turns 5 this month, has introduced 10,000 children with developmental disabilities to the joys of sailing.
Dani and Julie have been sailing with Saidah and his crew for two years, in Florida. The nonprofit has chapters in 11 other states as well as Canada, France and Puerto Rico.
Dani was diagnosed with profound autism when she was 4. After years of intensive biomedical therapies researched by Julie, a pediatrician who now specializes in autism, Dani currently has what Julie calls "autism in recovery."
The 11-year-old is a gifted, mainstreamed student, but still suffers from low muscle tone and above-average anxiety. On the boat, her worries disappear. She even steers.
Heart of Sailing places children in the captain's seat, offering them a level of responsibility they are not often granted on land.
"They are in charge," Saidah told AOL News. "It's a whole opportunity for them to do things that they've never done before." And for their parents to realize just how much their children with disabilities can accomplish.
"The family is usually very impressed with what their kids are doing," said Saidah. "It opens their eyes in terms of how much they're able to do. The parents are usually the ones that are holding back the kids. They don't want them to fail or have a bad experience."
Julie knows what he's talking about. She nearly had a heart attack when Dani took the wheel.
"She was driving the boat. I was having chest pain that she was going to bump into something, and George was just having her drive the boat right in. He was much more confidant and trusting than I was."
George is confident about Dani because George used to sail with his cousin Emile. Emile has a developmental disability, and sailed with George all the time when they were young. If Emile could do it, Dani and other kids could, too.
And so when George, a successful software entrepreneur, retired in 2004, he rounded up his Indiana sailing friends and their boats. They sailed the kids out to sea, and the program took off.
Julie said Dani has reaped multiple benefits from Heart of Sailing, and has returned to the program several times since her first reluctant sail.
"It's good for her balance. It’s good for her strength," Julie said. "It’s been a wonderful tool to help with anxiety and confidence and trying something new."
Julie said the program also has benefited the rest of the family: herself, son Matthew, 15, and dad Dean.
"From a family standpoint, it’s just nice to be able to go out somewhere and do something where you're in public ... and to have it be completely accepted. You can relax and really enjoy," she said.
Saidah said this family experience is part of the program’s goal: to encourages families to let go of their child-centric worries, and instead to celebrate their child’s abilities and enjoy life as a family. Everyone benefits.
"When [the parents] relax, and the tension between the kids and them relax, then the kids are performing much better," he said. "When they are in public, they are afraid of the public that is going to look at them, saying something to them that’s going to hurt their feelings.
"Here on the boat, nobody cares. Just let go."
LinkThat's funny that you posted this just now... last week we got to participate in a similar thing, where the kids were able to ride in boats (motor boats though, not sailboats,) and be pulled behind in inner tubes, or waterskis for the ones who were big enough. Minifob loved it. Since that day he has switched back from taking showers every night to taking baths, so he can play with his boats in the water.
In other news, Minifob has officially had his first experience with ABA, which is a type of intensive behavioral therapy. We've stayed away from it so far both because of cost (anywhere from $20,000 to $60,000 a year,) and because I really prefer methodologies that are social/relationship-based, rather than treating my child like an animal to be trained. (Quite literally, ABA therapy most often uses tiny pieces of food as rewards for preferred behavior. It's intensive and the result is automatic obedience, not necessarily understanding.) But one of our local places offers some very small, short-term clinics for specific skills, as an alternative to their broad 20-40 hour/week programs. These include the feeding clinic for picky eaters, the potty-training clinic for the poop withholders, and the medical compliance clinic, aka sitting still for IVs and learning pill-swallowing. They've done these so many times in an isolated setting that they have them down to a complete art.
Last night, after just two 30-minute sessions during the day, Minifob swallowed all his smaller medicines in pill form. We're doing a couple more sessions today and maybe tomorrow, to get him up to the giant fish oil capsules, but at this point it's safe to say he is officially done with syringes of nasty sludge. And the greatest part is that insurance should cover part of it, and the rest will pay for itself in a few months, since the chewable forms of a couple of his medications were twice as expensive as the capsule form.
WTG Clod. You truly are amazing.
snip~ We've stayed away from it so far both because of cost (anywhere from $20,000 to $60,000 a year,) and because I really prefer methodologies that are social/relationship-based, rather than treating my child like an animal to be trained. ~snip
Sometimes ya just gotta do what works. ;)
I wish I had known about the picky eater clinic 6 years ago.
thats awesome Clod! Glad to hear it!
I wish I had known about the picky eater clinic 6 years ago.
They do actually get some neurotypical kids in there. But realistically, most parents aren't willing to pay thousands of dollars to watch someone break their child's spirit. :)
I like that they are offering the short-term clinics for specific skills. It seems like a much more humane use of the methodology.
Absolutely. I'm not against the concept as a whole, but I think for most kids the social approach is going to be more effective in the long run, for most skills.
They do actually get some neurotypical kids in there. But realistically, most parents aren't willing to pay thousands of dollars to watch someone break their child's spirit. :)
Ah, well, I didn't realize it was that harsh. Still, I think a diet of velveeta only could have been avoided, but here we are at age 11, and it remains the same. I love her, but her bio-mom could have been more helpful in that area.
:eek: Just Velveeta? srsly? Have you talked to bio-mom about it? what does she say?
I think I oversimplified. She will eat most things as long as they have velveeta, ketchup or gravy on them. But she will not touch fish or seafood of any kind...and no beans. There is no talking with bio-mom. There is talking to bio-mom then a screeching fit always results, no matter how she is approached. Both of us have tried many times. I try to avoid her, these days.
I am sorry I don't mean to threadjack. Maybe I should start a step-mom thread.
Go right ahead, I've got stories for that one too. :)
I think I oversimplified. She will eat most things as long as they have velveeta, ketchup or gravy on them. But she will not touch fish or seafood of any kind...and no beans. There is no talking with bio-mom. There is talking to bio-mom then a screeching fit always results, no matter how she is approached. Both of us have tried many times. I try to avoid her, these days.
I am sorry I don't mean to threadjack. Maybe I should start a step-mom thread.
Um, that's normal......
My 12yo dau won't eat any fishy things either. or bread things. or mushrooms. or beans unless they'e Heinz baked beans. Or fruit-flovored anything. She only drnks milk, water and tea. No pop, no juice, no nuttin'...... it goes on
You know what? That is really a relief to know that. Neither of the boys are nearly that picky and they are younger. I was worried there was some kind of weird scary psychological thing going on with her that we couldn't figure out. Of course, I guess divorce and remarriage of her parents is weird scary psychological. But I figured she was so young when it happened, we would be mostly through alot of that. This makes me realize I should be more sensitive about it. I guess I need to think on this some more.
Yeah, I'm with monster. Some kids just won't eat that stuff. My 16 yo was/is one of them. She seems to be growing out of it but is still not one to take a chance on a new food. When I was a kid, I was the same way. Some textures/flavors were just unbearable. Even today I internally curse anyone who puts bell peppers in tomato sauce. Now I just suck it up and minimize the portion.
Yeah, kerosene, to give you another reference point, the kids who go into the feeding clinic often start out only willing to eat toast, chicken nuggets, french fries--and literally nothing else. Or sometimes it's textural, like they'll only eat mashed potatoes, applesauce, sometimes a banana, and nothing else.
For my stepson, it's barbecue sauce he wants to put on everything in order to make it palatable (including mandarin oranges, of all god-forsaken things. :greenface) But as long as he's eating the green beans, barbecue sauce or not, we don't care.
I wouldn't eat steak, chicken, eggs, salad, seafood, or a number of other things until I was in my 20's. Then I learned those foods were awesome, my mom was just a horrible cook.
Then I learned those foods were awesome, my mom was just a horrible cook.
I can identify with that, but as a youth I wasn't given a choice.
, chicken nuggets,.
My son's friend, who is autistic, had to have nuggets that were the right
color. Sometimes he just wouldn't eat for days.
Even today I internally curse anyone who puts bell peppers in tomato sauce.
That's not abnormal, Griff. That just means you have good taste. :D
I can identify with that, but as a youth I wasn't given a choice.
I can identify with this.
Our daughter will eat anything. Our son is fairly picky. If he asks very nicely and respectfully, we'll let him pour himself a bowl of Cheerios instead of eating the same food as the rest of us at dinner. If he criticizes dinner in any way, no cereal for him. He needs to find a way to choke dinner down or go to bed hungry.
The boy loves to try new food and likes most of it. He hovers around when I'm cooking asking to try the ingredients... He would order the portabello gorganzola salad over anything on the kid's menu.
The girl, not so much. She won't eat most animals, just chicken, and just certain ways. She likes all fruit, likes quite a few vegetables, but prefers them raw. She would live off popcicles, black beans, and mashed potatoes if I let her.
You know what this is? Fucking bullshit, is what it is. It's been just over 6 weeks since we had the adenoid surgery, when the doctor "just couldn't justify" taking the tonsils too because they weren't inflamed at that exact moment in time. Well they're already swelling up again, which we knew to go looking for because we've had another damn regression in behaviors. But rather than drag him into the doctor's office again, we managed to get in there with my digital camera and get a photo of it (Mr. Clod did the honors; I was on toothbrush-gagging duty.) So I'm going to email this to the doctor's office tomorrow and see what they say. I'm betting we'll be back in the pediatric surgery unit before school starts. But hey, the deductible's already paid up, right?
Damn, sorry to hear that. Poor kid.
This morning, I had a medical doctor look my son in the face and tell him that he could stop acting autistic if he really wanted to.
I am not fucking joking, not even a little bit.
But it's okay. Because I have reached out to my friends, and gotten connected with a new pediatrician (who has an autistic child) who is going to refer us to a new Ear Nose & Throat doctor (who has an autistic child.) Did I mention that we go out of our way to see a pediatric dentist who has an autistic child as well?
We'll take care of our own, and everyone else can go take a flying fucking leap.
This morning, I had a medical doctor look my son in the face and tell him that he could stop acting autistic if he really wanted to.
...
I hope you punched him in the side of his fucking brainless head.:mad2:
This morning, I had a medical doctor look my son in the face and tell him that he could stop acting autistic if he really wanted to.
I am not fucking joking, not even a little bit.
But it's okay. Because I have reached out to my friends, and gotten connected with a new pediatrician (who has an autistic child) who is going to refer us to a new Ear Nose & Throat doctor (who has an autistic child.) Did I mention that we go out of our way to see a pediatric dentist who has an autistic child as well?
We'll take care of our own, and everyone else can go take a flying fucking leap.
I am so sorry. I would like to point out though that you are a far better person than I'll ever be. If were forced to witness that the doctor would still be in surgery and I'd be in jail.
Clodfobble rocks.
As Flint would say ...
Wow! that is unbelievable. I'm with lookout - please post bail.
Positive strep culture for the freaking win. No, screw you, Dr. Jeffrey Kahn of Austin Ear Nose & Throat.
[size=1]Part of me desperately wants to go back to this guy just so I can shove the lab results in his face (the labs he didn't see the need to even run.) But the smarter part of me realizes this is counterproductive, that I don't want to humiliate the guy who's going to have a scalpel in my son's mouth. Gotta just move past it, take my strep results to the new ENT and get my son better...[/size]
Heart goes out to you ... I have twins with autism and have family members tell me the same thing. "All you have to do is MAKE them behave; you spoil them too much, you give in to their bad behaviors." Uh, ok, so I am a bad mom, that's the problem.
I'm joining the queue to slap that doctor. WTF?
Our nightmare summer from hell is almost over: we are back on the surgery schedule for a tonsillectomy. And when I say nightmare from hell I really mean it: at his very worst--i.e., about 4 weeks spanning July and August--we were experiencing roughly 5 tantrums a day, each about 30 minutes. The level of aggression during these meant that my only option was to lay with him on the bed, restraining him in a hug until he calmed down again. Meanwhile, my 2-year-old daughter basically gets to sit there and watch her mother pin her screaming brother to the bed. I'm sure that's been fantastic for her emotional development as well.
This whole time, his bad days and worse days have been directly correlated to the size of his tonsils. He tells me every single day that his throat hurts, and that he wants to go back to the hospital. He then reiterates all the details that he remembers from the last time he went to the hospital for the adenoidectomy--the pajamas he wore, the nurses he saw, the toys in the waiting room, the hospital pajamas, the oral medication, the IV, the special mask... and the feeling better. Today he basically promised me in broken phrases that if I would let him have another IV, he would be calm and not fuss at all.
But today we finally saw our new doctor, who gets it. We have (yet another) antibiotic prescription for symptom relief until the surgery on the 15th. In addition, she has ordered x-rays for his sinuses, because she suspects that a chronic sinus infection is actually what keeps re-seeding his tonsils after every round of antibiotics. If the x-rays confirm that, she will also do a sinus wash during the surgery, which involves (highlight for grossness) [COLOR="White"]sucking all the pus out of his sinuses with a giant needle,[/COLOR] then flushing them with an antibiotic fluid.
This woman is my hero. I almost started crying in her office when she dismissively said, "Of course I believe you. We're going to help him."
You are the most awesome woman
Well, she's got no choice, she's doing what she has to do... but she shouldn't have to do it, and wouldn't, if the mother fucking doctor did his god damned job.:mad:
I feel for you clodfobble. After reading your post,tired for you too. I am glad for the good news though, I am sorry for the hassle and the pain you all have to go through just to get to the right outcome.
You are amazing. Your chronicles are helping me think about how I need to relate to parents, thank you for that. g
[COLOR="Gray"]I was going to do this in a pm then decided public kudos were/are well deserved.[/COLOR]
Clod - I'm constantly amazed at all the challenges you unwaveringly (sp) overcome.
Your posts have led me to keep keep track of those who are really helping vs those who are just going through the motions. The latter are systematically removed and replaced.
I really don't know how else to say this, but you repeatedly inspire me to keep on fighting when everything I'm dealing with seems so overwhelming and my efforts futile.
Thank YOU.
Your chronicles are helping me think about how I need to relate to parents, thank you for that.
On the subject of relating to parents, a friend of mine wrote this a week ago in reaction to a bad experience with another parent in her son's mainstream class. She gave permission to others to share it, and ultimately was asked to read it in person to the entire teaching staff at her son's school. It's really beautiful.
As a mom with a child with autism, I want pretty much what every parent wants
for their child. I want him to have opportunities to learn new things and
experience life as normally as possible. This means he needs to be in a regular
general education classroom for as much of the day as he can tolerate. It also
means that sometimes he may melt down in the middle of that gen ed classroom.
My son is very smart. At two he was reading and writing words like storybook,
and at three; Wellness Education. In Kindergarten his classmates were in awe
that he could read everything written on the board and even around the room on
the first day of school. He could do all the school work, but he could barely
talk. He couldn't hold a conversation or ask a question, but he loved school
and his classmates.
Academically he needs to be with his peers. Behavior is one of the big issues.
He is impulsive, so if he thinks of something he will jump up and do it. He is
compulsive about doors, he loves to open and close them over and over. He does
this when he is anxious or there is too much going on around him. When this
happens he may melt down into crying and screaming if you try to stop him from
playing with the door.
This year my son starts 3rd grade. Last year he learned his multiplication
facts while his sister was learning hers. He learned in two weeks at the
beginning of school, while she took most of her 3rd grade year like all the
other kids in her class.
My son talks a lot more now. He can ask questions and comment, but holding a
regular conversation still is beyond his capability. He loves school, and he
loves friends even though he doesn't really know how to play with them, but he
is learning. He understands everything that is said to him, and he feels
other's emotions around him. He is very sensitive, and gets very upset and hurt
if he thinks you are mad or disappointed in him. He needs to be in a regular
classroom to learn and grow. Being around typical kids helps him learn typical
behavior even if he can't always maintain that. He learns so much from his
typical peers, and I believe they learn so much from him.
My daughter is a better person for having a brother with special needs. She has
more compassion and empathy for people. She realizes that people can see the
world very differently than she does, and that is okay. She has learned that
being embarrassed by her brother isn't nearly as important as supporting and
encouraging him when he is upset. Kids in an inclusion classroom get to learn a
little part of these things too. Academics are important, but don't we want our
kids to learn to be better people too?
It is hard being a mom with a child with these incredible assets and also some
incredible needs. It is hard to walk into a general ed classroom with typical
kids putting away their supplies and talking to friends from prior years,
parents talking with other parents, and you know they will soon see that your
child is different. It is hard because these parents look at your child getting
upset because he can't open and close the door, yelling out that he doesn't want
to sit in his chair, getting up and running around the room and they have a
horrified look on their face or they turn away and avoid looking at you or your
child. You know that they are wondering why this child is in their child's
classroom. You know that it will probably be this way at every party or event
you have to attend. You hope that their child will teach them over the year and
change their attitude, because kids usually get it much sooner than adults.
My child will have a good year. He is happy and loves learning. I believe
there will be at least a couple of kids in his room that he will consider his
friends. I will work hard this year to be an 'inclusioned mom'. I will try
hard to reach out and talk to the other moms and get to know them. I will try
to foster a sense of openness so they feel free to ask me questions and learn
more about my son. I realize that it is my responsibility to educate where I
can, and allow everything else to wash off me like water off a duck's back. My
son seems to be better with this than I am, but I am learning. Thanks for
listening.
Thanks for posting that. I'm glad to have read it. That should be handed around to every parent in every class with a special needs kid.
In less than 5 years, that will be every class.
Dr. Jeffrey Kahn of Austin Ear Nose & Throat should be made aware of what his incompetence has caused in some way.
You're a fighter Clod, I admire the crap out of ya.
Damn right and next time you see your friend tell her that I'd like to share her letter with some people out my way. PM if you prefer.
She's already said she's happy to share it with anyone who needs to read it, or I wouldn't have posted it on the open internet. Feel free to pass it on wherever necessary.
Just when you think you know at least one tiny thing for sure...
Fragile X is one of the few testable, confirmed genetic diseases, present from birth, that accounts for approximately 5% of autism cases. Some parents do not try biomedical treatments because they have had the genetic testing and know for sure their child has Fragile X, and many more parents assume they shouldn't bother with the genetic testing because their child is responding to biomedical treatments.
Except it turns out that, quite surprisingly, the symptoms of Fragile X actually
respond to antibiotics.
Ethell and her colleagues in 2009 found that minocycline lowers the levels of matrix metalloproteinase 9 (MMP9), an enzyme present in the normal brain whose levels and activity are over-expressed in the fragile X mouse. MMP9 inhibits development of structures called dendritic spines, tiny mushroom-like projections at the ends of synapses that allow neural cells to communicate. Lowering the amount and activity of MMP9 strengthens the dendritic spines and improves the establishment and maintenance of circuits in the brain.
Lessons for the day:
1.) If a parent says something is working, don't fucking dismiss them. Figure out
why it's working.
2.) Overuse of antibiotics may have even more significant implications for our population beyond breeding superbugs.
Dear Clodfobble:
I'm sorry I have taken so long to
acknowledge your great work here and your even greater work as a Mom. You're awesome.
I'm tired of being awesome. I want to be normal, and smile, and sleep on occasion.
Sleep would be especially useful tonight, as I will almost assuredly be pulling an all-nighter in the hospital tomorrow night. If I'm lucky, they'll decide non-stop screaming is bad for his throat healing, and sedate him again in the evening.
Oh God.
My heart goes out to you. It really does.
:heart-on:
We're home from the hospital, and tonsil recovery is going well! We're still having to do some pain management with the hydrocodone prescription, which makes me very anxious and I can't wait to get off it. A supposedly 4-hour dose lasts in his body for about 10 hours, which is inherently concerning, but we are very careful not to give him more until we're sure the previous dose has worn off. Without it he's in agony, but with it he is scratching obsessively at his neck and feeling nauseous. But enough cognitive improvements have already begun to peek through that he's starting to accurately report where his pain level is (as opposed to the binary scale we're more used to, either playing happily or screaming on the floor about needing to eat Rice Chex,) so that's helpful.
The other new thing is he's noticing smells for the first time in his life. He keeps talking about this smell and that smell, and sniffing things curiously. The funniest example was the first night we were home: Mr. Clod keeps a stash of little candy bars in the cabinet that he can usually be found snacking on before dinner is ready. (To make up for all that healthy food I make him eat nowadays, you know.) Anyway, he had just eaten one, and a minute later wandered over to answer Minifob's call for someone to fix his transformer truck again. As soon as he got near, Minifob startled and said, "You ate... that cookie!" with wide eyes. Before he could respond Minifob decisively walked away, wanting nothing to do with him until the smell wore off. We're both very pleased that he was so offended/uncomfortable with Mr. Clod's food choice. :)
In other news, MTV has a show called "World of Jenks," and in each episode the host/filmmaker spends a week living with someone whose life is completely different from his own. During
this episode he spends a week with a high-functioning but dependant 20-year-old with autism, and it's a nice, in-depth look at what this kid's real life is like, if you've got 22 minutes to spare. Touching but sad. We've sufficiently altered Minifob's trajectory at this point that we can be certain this will not be his future, but Minifobette's is still too short to know.
She may be on the verge of a big breakthrough though--she's suddenly started having semi-formed bowel movements for the first time in 4 months, which is fantastic. I was actually on the road when the first one happened, and Mr. Clod sent me a photo on my phone. Because of the recent tonsil chaos, we've not been able to be as meticulous about changing only one thing at a time for her, so we're not actually sure if the improvement is due to the recent removal of some potential allergens from her diet, the switch to a new type of digestive enzyme (which is also doing somewhat better for Minifob as well,) or the start of yet another antibiotic round. But we'll have a chance to figure it out soon, and meanwhile we've seen a huge jump in language, up to about 30-40 words. It could keep going up, or it could plateau again in a couple weeks, we have to wait and see.
It's nice to hear an upbeat post from you. :D
Doors - aha!
Explains why a pupil in my previous class was obsessed by them.
G either had to be at the front of the queue to open them, or at the back to close them.
There were other symptoms of course.
As always, thanks for such personal insights into your life.
This week I read a mystery novel which featured an autistic child - purely because of you. The author's eldest child is autistic. It was a decent story as much as anything, as well as opening up the various symptoms and the way a mother feels about them. It wasn't amazing, but if you're interested it's Eye Contact by Cammie McGovern.
I doubt you have any spare time though!
Today was a weird day.
It started off with a fantastic parent-teacher conference, in which the teacher confirmed what we've believed for awhile now, that Minifob will absolutely be ready to be mainstreamed by Kindergarten, most likely with minimal or no support. We haven't had him officially evaluated since the pediatric neurologist told us there was no need to come back late last year, but I'm feeling confident that we're going to lose the diagnosis entirely within another year or two. He has full conversations with me now, can relate stories about what happened to him at school that day, and will casually correct me when I get small details wrong. The teacher marveled at how far he's come in the last year and a half, "but he's one of my diet-vitamin kids, so it's not really that surprising." She's not legally allowed to tell me anything about any of the other kids, but of course I know the other biomedical moms in the class, and we all agreed to mention at these conferences that we'd like our kids to be mainstreamed together into the same classroom, so they'll start out with someone they know on the first day--and also so we can have our own little enclave of class party food trays, too. :)
But later in the morning, things went south as I spent no less than 45 minutes on the phone with the insurance company, arguing over a claim that we originally submitted back in July. By now, about half of their call center employees remember me when I call. This one had the decency to acknowledge that the error this go-round was clearly theirs, and made no sense whatsoever. The claim has returned to the mysterious people "in the back" for a second appeal, and I have updated my notes to reflect a new call back date in 21 days. So it goes.
Things continued sharply downhill after that, as Minifobette once again designated today to be a Day for Screaming. She's teething, and really coming into her own with regard to the autistic version of the Terrible Twos. I've actually been shocked at how many of Minifob's old traits have suddenly appeared in her, when up until now she's been the polar opposite of him in pretty much every way. She's turned violent and sleepless, and her language has taken a nosedive again too, but I'm really, really hoping that this is mostly due to the teething pain, and she'll come back around when it eases up. You know that numbing Orajel stuff you can put on babies' gums? It
infuriated her. I put it on once and she completely freaked out at the sensation, shoving her hands in and trying to claw off some imaginary thing at the back of her teeth. I hadn't clipped her fingernails recently, so she actually made herself bleed doing this. Fan-fucking-tastic.
Then unexpectedly this evening, I got a
FutureMe email that I wrote one year ago, inspired by
this thread. It served to again highlight how far Minifob has come... and again how Minifobette has just inched along. We've been treating the two of them for almost the same amount of time, more than half her life in her case, and she doesn't have very much to show for it. I've gone back and looked at Minifob's initial school evaluation from April of 2009, and I'm certain that Minifobette is still going to rank lower when it's her turn in another month or two. Of course there's no way to know how bad off she would have been without treatment, and the general rule
is that kids who have a severe regression (Minifobette) are significantly worse off than those who are weird from very early on (Minifob.) But I want two recovered kids, not just one. I guess with one in the bag, though, I'll have more time and resources to devote to the other, so there is that.
Well, the only thing I can think of to say is that at least you don't suck at relationships.
Dat true, and also the ability to deal with insurance, medical, and educational professionals, with out going postal. No mean feat, that. :thumb:
Hang in there Clod ... You are doing a great job. There is so much to deal with, that many times it seems overwhelming, but you ARE doing it all.
It's the little things that show you times are changing.
This morning I had to get back on the phone with the insurance company because they denied a random claim on the basis that one of my codes was no longer considered valid by the American Medical Association. Turns out it was the diagnosis code that they were suddenly taking issue with, which was especially strange as we file, oh, a half-dozen claims a month with this code. The code is (or was) 299.0, autistic disorder.
In the most recent code updates, the AMA saw fit to distinguish this into two new categories: 299.00, autistic disorder current or active state, and 299.01, autistic disorder residual state.
It's a fundamental acknowledgement that kids are recovering. Of course they don't say this to journalists, and they don't say it to ignorant pediatricians, and they don't say it to the parents who are still not seeking effective treatments for their kids. No, they only say it to the insurance companies, because of course they're going to want to know if they shouldn't have to pay for a procedure if the condition is residual...
Time flies and drags at the same time. It was one year ago this month that we took away all of Minifob's food and put him on an elemental formula diet. During the three months he was on it, he gained 4 pounds, having not gained any weight at all for at least 6 months prior to that.
But since going off the formula, he has again not gained a single ounce, despite the fact that he eats 5 adult-sized meals a day. No weight gain in 8 months is something even mainstream pediatricians can believe in. So happy anniversary, he's going back on formula. Not exclusively; we're hoping to supplement his food with 3 drinks a day, which would be about half of his expected nutrient intake. The good news is we can switch to a less super-hypo-allergenic brand, since he'll be having real food alongside it anyway. This means that a.) it will taste better, and b.) it comes ready-made in liquid form in a brightly colored juice box thing, instead of a can of powder I have to spend all day scooping and mixing. With any luck insurance will still cover supplemental medical nutrition like they covered complete medical nutrition.
In other news, baking soda is my new best friend. Our gastroenterologist recommended it for suspected reflux, said it was both more effective and safer than prescription meds like Zantac. 1/2 teaspoon mixed in water twice a day, and Minifobette is sleeping much, much better at night. She eagerly drinks the stuff and asks for more. And at the same time, we've started to get a few 2-word phrases out of her. Hooray for less stomach pain!
we can switch to a less super-hypo-allergenic brand, since he'll be having real food alongside it anyway.
Isn't the reason he hasn't gained weight, that he's not getting the nutrition out of it? Or he's not getting most of the nutrition from it?
Yes, it's because he isn't able to absorb most of what's passing through there (which is also why his body keeps telling him to eat, eat, eat. It's full but it's not nourished.) But taking away all food is psychologically and socially difficult, so we're okay with the idea of letting him continue to eat food while he's getting the formula nutrients as well, even if he's not getting much out of it.
The hypoallergenic nature of the formula is a separate concept from the nutritional side--having everything broken down is good for absorption, but it's also what you need if you're having allergic reactions to every food that passes through there. The allergies were our primary concern the first go-round, though the nutrient absorption was obviously a bonus. But since his food reactions have been holding steady (not great, but steady,) it's okay if he keeps eating food, and if the formula has, for example, sugar and grape flavoring added to it.
Minifob has a conversation with Mr. Grasshopper.
[YOUTUBE]yqQz2S7zNSM[/YOUTUBE]
I no longer have to explain to people in public that he's autistic. We are getting closer.
OK, Mr. inappropriate here. I know this is about Minifob's awesome recovery and that he is the star of the show, but I can't get over what a lovely voice you have, and I'm really a visual person, not an audial one. Still, I could listen to your voice all day. Unless you were saying stuff like, "Would you take this to the compost?" or "Did you email so and so about the Dingus?" "Have you seen the checkbook?"
That would probably get old. Even with your voice.
Well if you know anyone who wants to pay, it is indeed still for sale. Schedule's pretty wide open...
I'm saving my quarters...
No matter how much you adore that voice, there are some doctors, somewhere, that are sick of it. :haha:
Clod it's wonderful to see and hear him.
On a complete aside, I'd have sworn at the beginning of the clip he was saying Mummy not Mommy. I thought - what? A British-American? He clearly said Mommy later though.
His progress is a tribute to you.
And yes, you do have a lovely voice.
Yeah, his vowels still wander around a bit. Plus, so much of his speech is/was learned by imitation, I wouldn't be surprised if he'd specifically picked up a bit of the "Mummy" sound from watching Charlie and Lola. He also thinks that the name of the dog (Sizzles, which they say sizz-ouws) is in fact Scissors.
Thats perfectly normal though - Friends kid calls his big sister "Cake" her real name is Cait, as in Caitlin.
What he is doing is nothing short of amazing and is a testament to what an great mom he has.
You should have heard what my brother did to "truck".:rolleyes:
You should have heard my first grade rhyming story when I had to find a word to rhyme with "luck."
After just 3 weeks of supplementing with 1-2 boxes of the elemental formula a day, Minifob has already gained 2 1/2 pounds. Hooray! A full day's worth of calories would be 7 boxes, so he's not even getting that big of a daily percentage out of it, but it's been enough to take the edge off his hunger as well. We're down to just three large meals and one snack a day.
Also,
technology is so useful. I personally haven't used the app, because 1.) I don't have an iPhone and 2.) I'm quite used to my stacks of notebooks anyway and wouldn't want to bother adapting my own shorthand. But I know some folks who are less obsessively organized, and this has been extremely helpful for them.
Oh, ha ha. Joke's on me.
"What's that?" says Mr. Streptococcus. "You think you can destroy my lovely Tonsil Towers Condominiums, and raze my Adenoid Townhouse to the ground? Well fuck you, Clodfobble. We'll just start slumming it up on Ocular Beach instead. How you like them apples?! Merry Christmas kid, Santa brought you a raging case of Pink Eye."
Hope the pinkeye makes the world look Rosy for them.:(
... a raging case of Pink Eye."
or as one of my guys called it last year cajunkintheeye. Sorry Clod...
:lol: The nice thing is it doesn't really hurt, he just gets a little frustrated over the extra crusties. On the other hand, the symptoms are gross and quite visible, so our trip to the inflatable bouncy place had to be postponed. But I'll still take cajunkintheeye over agonizing throat pain any day.
Oh, ha ha. Joke's on me.
"What's that?" says Mr. Streptococcus. "You think you can destroy my lovely Tonsil Towers Condominiums, and raze my Adenoid Townhouse to the ground? Well fuck you, Clodfobble. We'll just start slumming it up on Ocular Beach instead. How you like them apples?! Merry Christmas kid, Santa brought you a raging case of Pink Eye."
1 -- my sympathies.
2 -- your description sounds like dialog from lost reels of one of our favorite movies,
Osmosis Jones. I give it five stars. You, and probably minifob, would love it.
Aaron Donnell, an allergist and pediatrician at Children's Memorial Hospital and Illinois Masonic Hospital, said that if parents have questions about attention-deficit disorder, he tells them that skin- or blood-testing won't help, but they can try removing gluten, sugar, dyes or preservatives from the child's diet. "At least half get some improvement by adjusting their diet," he said.
From
this article in the Chicago Tribune. Sounds like a significant statistic to me.
Most doctors familiar with the subject believe ADHD, as well as some forms of social anxiety, to be at the mildest end of the autism spectrum. It's the same types of brain damage, just less of it.
Clod, it is shit like
this that pisses me right the fuck off.
If we aren't TOLD what is in a product, how can we avoid it??
I am SO pissed off right now!!
How can it be certified organic if they are using artificial GMO sweeteners in the FOOD?
*growls*
ETA:
In 1998, Monsanto applied for FDA approval for a monster molecule, “based on the aspartame formula” with one critical addition: 3-dimethylbutyl
This says that 3-dimethylbutyl is
Suspected:
Neurotoxicant HAZMAP
Respiratory Toxicant RTECS
Skin or Sense Organ Toxicant RTECS
NIOSH
I fucking hate people.
Sucks, but remember, USDA organic is meaningless and has been since the gov got involved. It was a way for big agri biz to get a piece of the 2 or 3% of the market share they felt they were losing to genuinely organic products.
I do my best to stay away from anything sweetened artificially and also organic labels - I dont trust them at all.
I agree - organic is for suckers.
We had a parent meeting after class yesterday to follow up on an out of control kid (too many environmental issues to list). Anyway the child's doc tells mom to reduce sugar... which apparently means load her up with aspartame... go team! So now even if Mom had a higher functional literacy the government want that shit in her food.
No added sugars or sugar substitutes. No artificial flavorings or colorings. No preservatives. No GMO's. No chemical additives whatsoever.
I follow those rules and believe that most of my food is reasonably healthy, as are my children. Sometimes, the only way to find products that follow these rules is by checking the organic market. I work two jobs, I'm not adverse to a little processed food, I just want it without all the crap in it. Ie: I buy
Chicken Nuggets for a treat for my kids. At $7 a box, they are definately just for emergencies/treats. But I don't insist on only eating organic foods...I know the labels and the FDA lie.
Jackasses...
I found it interesting that they originally submitted their request during a democrat administration but didn't get it approved until there was a republican in the white house. Not that democrats aren't corruptible too, but republicans (and especially the ones now) always seem to let corporations do whatever the fuck they want, food (or any other safety for the public) be damned. Pretty soon 'snake oil' is going to get FDA approval too...just wait and see.
We have started buying the "organic" milk in the grocery store. It was something that I was a little hesitant to do because it's more expensive, and I wasn't sure there was any difference.
Then we did a side by side blind taste test. It tastes noticeable better than regular milk. It's remarkable, really. The 1% organic milk tastes as creamy as the 2% regular milk. Maybe even a little creamier than that.
I don't know what the "organic" label means for milk. I don't approve of antibiotic use in livestock, and certainly not growth hormones for increased milk production. If the "organic" label means those things aren't happening, then I'd be happy.
The organic label may not mean those things Glatt. There are some farms that have stricter standards than USDA organic who are not certified organic.
Stonyfield Farm and Butterworks Farm are two good dairies. Organic Valley is a giant behemoth wearing the organic disguise. (According to a pretty easy-going organic farmer I know)
When my kid eats organic strawberries, he poops poop. When he eats non-organic strawberries, he has very loose stools with giant, quite recognizable chunks of undigested strawberries. The organic label on a processed product can mean something, or it can mean nothing. But when it comes to fresh produce, the definitions are clearer and more meaningful.
It's not just pesticides on the outside, either. Buy a regular banana, and an organic banana, and place them side by side on your counter. The regular banana will spoil in half the time. The chemical fertilizers they use to make them ripen faster are still inside the fruit speeding up the process, even after it's off the tree.
The bananas also taste differently.
So then, fruit labeled as organic in the grocery store produce section can be considered legit?
If that is so, I will try some.
It's hard to identify true organic foods - I would guess that larger chains would be more likely to carry certfied organic foods. In a farmer's market situation, it can be tricky, because...just like the FDA, people lie.
Here are some questions to help you identify the real organic farmers from the scammers -
How to find a true Organic farmer<---this is a word dc.
Thanks Stormie, I saved that.
The best thing to do is talk to the produce guy at your grocery store. You ought to be able to get a feel for how seriously they take the process of vetting their organic suppliers. For example, one of our produce sources is a kind of enhanced CSA (we are given a certain amount of flexibility in what we want to order from the local farms each week, it's not completely on the whims of what's available.) A lot of the stuff they include isn't actually certified organic, because the process to get certified is suprisingly expensive. But this thing is run by a bunch of dedicated hippies who have personally visited each farm they source from, and confirmed for themselves that organic practices are in use even if the certification isn't in place yet. Likewise, they have refused farmers who are certified, but have other practices the hippies disagree with for one reason or another. I have decided I trust these people with my food, and certifications don't have to enter into it.
Ha...I like your store. My store employs stupid 20yr olds. Its a waste of time to ask them any question.
ETA: Ummm, not all 20 yr olds are stupid, like most the ones that post here.
Clod, it is shit like this that pisses me right the fuck off.
If we aren't TOLD what is in a product, how can we avoid it??
I am SO pissed off right now!!
This is bad news for me. Nutrasweet/aspartame makes me violently ill. I wonder if it will affect me after it's filtered through a cow.
I can't drink too much aspartame either. My son has no problems with it though, but he can't have too much sugar. He monitors that pretty closely. He also has the gift of being able to stay up all night on a diet coke. ( gift = sarcasm ) I just wish it worked like that for me.
I have to write a Social Story for Tiger this week (my homework)
Searching the internet for examples - yes, I'm struggling.
Then I thought to search the Cellar and of course this thread came up.
Hurray for the Cellar!
Still struggling though.
His autism-spectrum diagnosis is generally accepted but not medically/ officially confirmed. His "Statement" is mostly about speech and language issues, although it does touch on food and social skills. But he's certainly "high functioning".
So the suggestions made by his Speech Therapist aren't completely appropriate. I'm going to try to talk to Mrs P (teacher) before next Thursday (next appointment) because I know she's familiar with both Social Stories and the cub.
This is all about giving me a toolbox of skills for when they cut his hours with the ST so I need to understand this, as opposed to getting it right once and getting a pat on the back.
When social stories are done right, they're awesome. Most of them suck. See PM...
Sundae, I'd limit the story to one situation at a time. I haven't done a lot with them but we have one successful bathrooming story in place right now. The child didn't feel safe using bathrooms away from home, so the story keeps coming back to "I'm safe".
Griff, part of my trouble is coming up with an appropriate story.
Tiger doesn't seem to fit into the right boxes.
I'm not criticising the idea, or the system, it's just the stories I've read are all over the place. That's a technical term.
Clod sez some of those on the web aren't the best examples.
She's going to email me some that worked.
When I have a good example, I'm sure I'll be able to apply the idea better.
I will become A Teller of Stories.
Thanks for your input.
I really shouldn't have wasted half a day "out there", I should have started at home.
We mostly only used them to help him know what to expect in a new situation, rather than to teach a specific skill. But either way, most generic ones are just bad cartoons and imperative statements, and that ain't gonna cut it.
The school Special Educational Needs and Disabilities Co-ordinator had a scheduled meeting with me today.
To help me with the Social Story and have a general catch up.
She came into the classroom, took away the instructions I'd been given AND the draft copy of the Story I'd written, and said she's get back to me tomorrow.
I had actually asked for her help, not a critique, I'll get that off the Speech Therapist on Thursday.
The SENDCO hasn't even looked at the notes I keep on the Tiger. No-one has. I could be writing down any old shit. "Tiger was happy today! It was all, like, double rainbows! Yay! I'm not sorry about his finger!"
Clod, you helped me realise it was about learning to use the format, not immediately coming up with a necessary Social Story. Because at present I'm not sure that's up to me. Although you'll see that given the above, I am ambivilant as to where the boundaries are drawn.
Mrs P just read the exmaple and nodded and said (sounding dubious to me) "Okaaaaay."
But what can I do?
I love my job.
I love the school.
This is a challenge and I will overcome it.
Just as a minor moan, I kinda wish I'd been able to come into this without being known to the staff (apart from the fact I wouldn't have the job!)
I feel I've been dunked a little bit.
No spare time to interact with the teacher/ TAs unless I start before they do - and that is their downtime before the day starts anyway. And no real time for questions/ discussions except my halfhour lunch, which would be fine by me - except shovelling in food - but given their other commitments, not really fair on them.
I get a detailed timetable every day, but usually my 1:1 time with Tiger is up to me.
Sometimes it's hard to gauge what time will be least distracting for him/ will make him most amenable. The class timetable is scheduled so group work/ reading and choosing time is split evenly. I have to shoehorn in time with the cub and still ensure he enjoys the sessions.
Good news there though. He has now started approaching me asking if we are working together. I think this might be because he does enjoy our sessions. I've made them as sensory as possible. And of course he appreciates routine. Sadly, I had to make some time up the other week because I was ill (well, I volunteered to) and he became used to me being available in the afternoons. Only one week, but it grieves me that he is now asking after lunch whether we will work together...
Anyway.
This all sounds like MOAN, MOAN, MOAN.
Maybe it is.
but maybe everyone needs a moan now and then.
This is something I am delighted to be working on, and I know it could never be a journey of a single step.
Everyone is friendly and would probably be horrified to know I'm probably not as secure as I appear.
SG, no-one (and I do mean no-one) is as secure as they appear. Remember that.
I will become A Teller of Stories.
Thanks for your input.
I really shouldn't have wasted half a day "out there", I should have started at home.
I agree with you! You are a great story teller.
Social stories are short, concrete,relevant.
They can be about sharing, helping, saying please, a specific feeling, waiting in line at lunch, what do do when the bell rings, being quiet in the library, any any thing you think is will apply to his situation.
This website has some examples. I find them too wordy but this one has great photos. It does state this is for an older verbal child. You could modify it, take the references to the other motorized objects out and just put labels or one short sentence.
http://www.child-autism-parent-cafe.com/using-public-restrooms.html
I like these. They are basic and you can tweak them.
http://www.polyxo.com/socialstories/Thanks for those Sky.
Also had great help from Clod via email.
Yesterday the SENDCO came and took my draft Social Story from me and as yet hasn't returned it.
Given that all I wanted to do was talk through it with her, this is not particularly helpful.
The good news is I thought about it and worked on it for a couple of days (on and off) so can rewrite it in an instant if I don't get it back before Tiger's Speech Therapist comes tomorrow.
I also have one I think is more relevant, and regardless of what the SENDCO says about the first one I will submit the new idea as a virgin product to the Speech Therapist. That way I get get her perspective from scratch.
I have a horrible feeling Mrs L will just dash in at the last minute with "corrections" which is not what I want at all.
Guess what? Mrs L had in fact "corrected" my first draft.
And she had it to me by the generous time of 13.15. The Speech Therapist arrives at 13.30.
And she had split it into two separate issues, because she knew what I was trying to get at, but it was a bit jumbled.
The fact she split it into two issues - I will wear my coat outside, and I will share my toys and games - means she didn't see what I was trying to get at at all.
The coat statement was a descriptive sentence - Tiger loves his coat and associates it with the good things in life - mostly running and sometimes falling over. And being allowed to raise your voice.
The point was trying to get him to do some non-physical work with me before outside before he went on the obstacle course each day.
AND she used a completely different way of writing it out, using a single icon for every word, making it into a full page which looked like cave paintings. Which is NOT helpful as a preparation for going into a meeting with someone who has asked me to do it another way entirely.
So. Very cross.
Obviously the Social Story was jumbled to her, so it's nowhere near perfect. I wasn't expecting it to be. But I did not "submit" it for grading and certainly not to be rewritten, I asked to sit down and speak her her about it. Twice in 5 days. I have the benefit of working with Tiger daily - she made assumptions in her rewriting based on the statement made in July 2010. Not good practice.
I'm not saying she doesn't know her job.
I'm saying she doesn't listen.
And she doesn't work to a timeframe that is reasonable for other people.
I would far rather she had said, "I really don't have time this week. Can you speak to the ST at your appointment. I'll schedule a catch-up with you the week after, so if you have any more questions at that point I can help."
AND.....!
(not about Mrs L this time) the Speech Therapist didn't show up either!
No word to me, but then the Office was empty all afternoon - for all I know the ST could have been trying to call me.
Oh and finally - I was promised worksheets for the cub.
I was supposed to get them as usual last Thursday but the ST forgot. Fine, it was a mistake, of course it happens. But she said she would put them in the post. I asked at the Office every day - nothing. In the end the secretary suggested I ask Mrs L, as it may have been in with the info she gets from County, which comes in a sealed wallet through the internal post (because it deals with sensitive issues for some children).
Mrs L said not to worry, she could get me some photocopied from the regular visiting ST.
Again, got them today at 13.15.
One workbook, way below Tiger's current competancy.
No, I don't expect her to be psychic, but if she didn't know she should ask. I'm in the same place every single day until 13.00 at least, I'm easy to find. It didn't occur to me that there are many different levels of worksheets. Of course there are. But I'm learning on the job.
I'm happy to work as hard as I can.
I just don't deal with frustration very well. And today I felt like I was playing Blind Man's Buff. In Wellingtons and gardening gloves.
My GRRRRR is now over.
I've been working on prepositions using a whiteboard and pen.
He likes my drawings and the stories we make up about them. So it's all a part and parcel of teaching pronouns anyway, talking about the Fat Old King and the Skinny Witch or the noisy female cat and the quiet male dog.
All out of my system.
Tomorrow is another day.
And after all in that extra hour I got the see the Jelly Party which I would have missed otherwise.
using a single icon for every word, making it into a full page which looked like cave paintings.
:eyebrow: I don't know your Tiger cub at all. But from what you've said, this sounds way below his functioning level... some kids need this kind of thing, no question. Minifobette still does. But not a verbal child who is inclusioned.
Okay.
All my Grrrrrs were resolved and I left school yesterday feeling soothed and settled and most of all - positive.
I had a 30 minute session with Mrs L which went SO well.
I do wish we could have had it before I supposed to see the Speech Therapist (who did leave a message apparently, but it wasn't passed on. My teacher got the apology for that rather than me, but I'm happy to accept it) but due to circumstances it turned out okay.
The confusion was due to the fact Mrs L expects to see the issue in the first sentence.
This is not clear in the notes I was given or in the examples I've read, but it does explain why she thought the coat was the important point.
The icons were simply to introduce me to a program called Communication through Pictures (or somesuch).
It is highly adaptable and you can remove or change icons at will, meaning there might only be one per line, or the icon is larger than the text, or text larger than icon etc. It is based on the idea that children on the autism spectrum are visual learners and I can see it can be used in so many ways.
I came away from the session so much better informed - not just about what I was trying to do re social stories, but also about Tiger's behaviour. No, she doesn't know him, but I was ignoring the fact that she has far more knowledge of children with his type of condition than I have. The worksheets were unsuitable, but she fully supported the ideas I'd been using and came up with some wonderful suggestions.
I don't feel bad about venting here.
I needed one to one time with her, and once I had it things changed completely.
Thanks for letting me hijack a little.
Since you are new at this, like you said promoted from within rather than coming in unknown, she probably is underestimating you. She doesn't know how hard you've worked, seeking advice outside on your own time and all. You probably should be more aggressive on keeping her up to speed with what you're doing. You know, I may be wrong, but it almost sounds like she doesn't really care if there's good results for the kid, as long as you're putting in the time with him that's prescribed.
Oh, and don't doubt you're doing ok, 'cause you're doing great.:thumb:
I keep starting to write an update, and then get bogged down in trying to explain all the backstory, and include all the details, and before long I run out of energy and just give up. So I'm going to try to just stick to bullet points and see how far I get.
--Both my kids have spring birthdays, which means their annual ARD meetings happen right about the same time. This is a legal proceeding where the school and I have to agree on their educational goals for the next year (since it's generally accepted that they won't be following the standard curriculum and/or need additional skills taught, all special ed students have an Individualized Education Plan, or IEP.) We have thus far managed to avoid having an adversarial relationship with the school, although that's rare and probably can't last forever, because their primary concern is to spend as little money on my kids as possible. We may have to escalate from passive-aggressive to plain-old-aggressive soon, as I want the after-school bus to take Minifobette to therapy rather than home, and they are thus far refusing. They have no legal standing for this and they know it (and it's only 7 miles, fer Chrissake,) but they are stalling, and I may be forced to put up the money for a legal advocate to prove to them I'm not backing down.
--Minifob's ARD is not complete but has so far been more amenable than his sister's. He is being fully mainstreamed with minimal support options being kept open, but no aide or resource pullouts anticipated. He's been inclusioning in the class of his future Kindergarten teacher since February, so she's very much in a position to know if he can hack it socially/academically while also not disrupting the class, and the answer is he definitely can. He came home the other day and showed me how his "big friends" taught him how to play Rock Paper Scissors. I'm so proud of my little monkey.
--We go to see our new gastroenterologist tomorrow, the one who's in the top of his field and has a very long waiting list. The bad news is, as a gastroenterologist who only sees autistic patients, he is under a huge amount of political scrutiny, thus it's pretty much a given that any child who walks through his doors is going to have to get scoped. He has to document beyond a shadow of a doubt that any child he treats does, in fact, have intestinal disease and damage. On the other hand, our overly detailed medical records get to contribute to the growing body of proof, so we get to feel good about that I guess. How much insurance is going to cover is debatable, but we figured if we were going to hit our out-of-pocket maximum, we might as well do it early in the year and get the second kid done for free. I'm really, really excited to see what our overwhelmingly comprehensive pre-appointment lab work shows. Some of the tests included things any other doctor would be far too terrified to test for... like measles antibody titers. If the titers are sky high (that is, enough to indicate not just basic-level immunity but rather current infection,) then he will do a series of biopsies during the scope to try to document the presence of live, vaccine-strain measles infecting the gut. In that case, we would not only get to add to the growing body of evidence, we could also be prescribed antiviral meds that could dramatically improve their symptoms (likely only Minifobette's, but you never know.) Of course all the other standard GI meds will be at our disposal too, including (hopefully) long-term antibiotics for Minifobette. We're not even going to discuss the current mucous situation with her; suffice to say it is horrifying.
--One of the fascinating things I witness on a daily basis is the difference between various autism sub-communities; not just biomedical vs. traditional, but things like Asperger's vs. "regular" autism. I find myself increasingly pissed-off by the Asperger's message board, because these are people who have convinced themselves that they have miniature Einsteins, and they are not at all interested in helping their children improve their very real deficits. Instead, every failing is cited as further evidence of their brilliance, and they send dozens of messages back and forth each day on topics like how to get it in their child's IEP that he doesn't have to turn in homework, ever, because he has a disability and it's not fair to make him do it. Or how to make the school pay for his private sports team membership, because it's critical to his social development, which is part of his disability and therefore the school's problem. People like this are the reason that there's not enough money to drive my daughter a couple extra miles to the desperately-needed therapy that I'm already paying for.
--On a similar note, the stupidest thing you can ever say to someone who tells you their child is autistic is, "Wow, congratulations!" Yes, I have actually been told this by well-meaning but idiotic people. Twice.
I'll be writing Annual Reviews all week for my kids. We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.
Side note my Russian friend is going to attempt to build a fencing program for kids with autism for his new salle. Sounds like a big challenge.
We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.
Your kids are lucky to have you fighting for their side. Our teacher is a truly excellent teacher who cares very much about the kids under her care, but she leaves all the fighting up to the parents. She's not necessarily on the school's side either, but she is painfully judicious in what she will and will not say in certain situations.
Your fencing friend will have a challenge in teaching the class, but the customer base is most definitely there. I bet his program is full within a couple weeks of announcing it. We're all used to paying thousands of dollars for therapy, so sports team fees are nothing by comparison, and we're desperate for social activities where our kids won't be totally mocked and singled out. A couple of different martial arts places around here have just realized that, and as each new program gets announced, the parents pounce on it.
It is very hard to hit the right note. If you over-sell a behavior issue to get an aide you're suddenly giving ammunition to the more restrictive environment types who haunt these meetings. The whole thing can be a tooth grinder.
Why, oh why, can nothing ever be fucking easy?
The appointment with the GI doc went very well--he said Minifobette had some of the worst bloating even HE has ever seen, but nonetheless she is a "classic" case and Minifob is far more interesting from a clinical perspective--but regardless of the details, he can help them both. He made a point of confirming with me before we begin this process that what I want is for him to treat their digestive disease. Most kids show cognitive improvements alongside the digestive improvement, but some don't, and the only thing he promises is to correct the digestive disease. I said sure.
BUT THEN... I mentioned as part of their medical history that Mr. Clod's aunt has a rare genetic condition known as malignant hyperthermia. It's a muscular reaction to certain anesthetics, including an instant seizing of the heart. It is frequently fatal, but they brought his aunt back with the crash cart during whatever routine procedure she was having a couple of years ago. Anyway, we don't know if the kids actually have the gene for it, but after his aunt's event we were told to always mention that it's "in the family" anytime someone is having anesthesia.
We had of course mentioned it during Minifob's two previous procedures, and the anesthesiologist at that time just sort of took it in stride and never said anything more about it. I'm now being told that this was because he was at a major hospital--the best children's hospital in the state, supposedly--so they just took whatever precautions were necessary, no sweat. The kids' planned colonoscopy/endoscopy procedures are being done at an ambulatory surgery center, the staff of which is far less comfortable with the possible risk. Our doctor can't do our procedures at a full-scale hospital, because his schedule in Texas is literally to fly in Monday morning, spend all day in pre-op consults, all day Tuesday doing 8 kids' procedures back-to-back at the ambulatory center, all day Wednesday doing post-op followups, and fly out Wednesday night. We can't go to a different doctor because none of them will touch us.
So we have two options. One, fly both kids to New York and have their procedures done through his main office there, where he has more flexibility with scheduling and location. Or two, get Mr. Clod tested for malignant hyperthermia via a muscle biopsy. (Can't test the kids, because it's apparently only reliable past the age of 9 or so.) Assuming he tests negative (which is the statistical likelihood, despite it being a dominant gene,) then the ambulatory center will do the procedures on the kids. The problem with option two is that there are only 5 locations in the country that can even DO the muscle biopsy test, all in medical universities. And setting aside the cost of a plane ticket for him, and the fight to get the test covered by insurance, so far two of the five places have already said they couldn't do it for him any sooner than July.
We're continuing to look into our options. But seriously, God. I've done my time, I've worked plenty hard enough. It's someone else's turn now, yeah? (Actually, I'm thinking right about now is when I get cancer.)
Why, oh why, can nothing ever be fucking easy?
Because you won't sit down and take no for an answer.
Fly the kids to New York, have a mini vacation first.
I'm sorry, although those words seem so useless in this situation
Where in New York? like, the city? Skyscrapers and everything?
A city called Far Rockaway, not sure where that is compared to the Empire State Building. :)
don't get cancer. win the lottery. [/goodvibes]
A city called Far Rockaway, not sure where that is compared to the Empire State Building. :)
Far Rockaway? Seriously? That's more in the mid Atlantic than New York, but ok. It's practically at the end of the A train. Look to the lower right @~4:00 (Funny aside, the A train was where my late father wanted his ashes left so he could ride the subway forever. It's a very long train line)
http://www.mta.info/nyct/maps/submap.htm
I guess it is a short hop from JFK though. But from the rest of the city it's aptly named.
After a week-long maelstrom of countless phone calls, it's all been settled. Mr. Clod is going to Minnesota on May 9th to get a big chunk taken out of his leg at the University. It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected--but I honestly think he's kind of happy that he can be the one to do/endure for the kids, for once. Testing is done immediately, so we'll have confirmation that we can go ahead with the kids' procedures before he even gets back on the plane. We got ourselves approved for an "in-network exemption" through insurance, which means it's completely covered, and my mom is giving us air miles she was never going to use for us to fly him up there. It's worked out as well as it possibly could have, considering.
In other positive news, my mother-in-law gave my daughter something similar to
this for her birthday. This is nice not because of the item itself, but because she got it "from a friend with an autistic child, and I guess he'd grown out of it." This is the first time she's acknowledged Minifobette's autism in any way, even indirectly. Giving a toy that is at least nominally "meant for" an autistic kid is a huge step for her.
very good news, big missing chunk aside.
Good to hear the extraneous bullshit is working out, you've got quite enough on your plate without that. Oh, and go granny. :D
That's awesome that you figured out the testing, and it's covered and the miles are free. Way to go!
It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected.
Get the shark attack stories ready......
9 more days. Come ooooooon May 17th...!
Part of the deal with this whole colonoscopy/endoscopy/pill cam procedure--wait, did I mention the pill cam? I didn't. It travels all the way through them, taking a photo every 30 seconds that is transmitted to a little box they wear on a belt until it passes. This enables the doctor to see damage in the small intestine, the vast majority of which is inaccessible by even the longest scopes. Irritatingly, despite the advanced technology of a freaking wireless digital camera the size of a pill, it does NOT in fact have any sort of "channel" function on it. The camera broadcasts indiscriminately, and the boxes pick it all up. So any two children who are having the same procedure done must stay at least 50 feet apart from each other for a minimum of 8 hours, lest their boxes pick up the other one's photos. So Minifobette will come home to chill after her scope, while Minifob will have to spend the rest of the day out playing minigolf and arcade games with daddy. So sad for him, I know.
ANYWAY, part of the deal with this whole procedure is that we don't want to miss anything that may be held partially under control by their considerable number of digestive medications. So we were told they absolutely must be off all of them for three weeks. No probiotics, no antimicrobials (sure, why not give Minifobette's infection the chance to become sentient,) and no digestive enzymes (Minifob didn't want to absorb any nutrients from his food anyway.) The girl has at least held steady at her usual "not on antibiotics" nastiness, though we've had to double up her normal dose of laxatives to keep it moving... but the boy is falling apart. On Friday I got an email from his teacher noting his downward spiral and asking what had changed for him. We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills. She said that he is spending most of the lunch period trying to lay across the bench, a movement he does to put pressure on his abdomen when it hurts. He's also verbally stimming almost nonstop (chanting the time on the clock every second as it ticks forward, fixating on chains of syllables in falsetto like "digga digga digga," clicking and ticking and making every noise you can imagine with his mouth...) I admit, for me this is worse than meltdowns, I have a really hard time with the constant aural onslaught. But as I told his teacher, all I can do is keep scaling back his food to more digestible stuff (I'll be down to nothing but applesauce and elemental formula boxes soon, after which I can't go any further,) and just keep him home from school if he becomes unmanageable. On the other hand, it's kind of good for his future Kindergarten teacher to get to see him like this, so she understands what I mean when I say he can't eat certain things.
Meanwhile, Mr. Clod just left for Minnesota. Turns out I was still underestimating the size of the operation: they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning. There's a sample video of it
here for those of you who like watching medical procedures. It's fairly creepy.
they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning.
Yikes!
Yeah. My mother-in-law actually decided to travel with him. He insisted it was a waste of her money but she would not be deterred, and I'm glad. She's afraid he's going to be completely disoriented/nauseous from the anesthesia and not be able to get back to the airport on his own. Me, I think he'll be completely cognizant... of how much pain he's in. They told him he'll be able to walk, but I expect it will be somewhat like he's had a c-section on his thigh, and the bottle of ibuprofen he packed ain't gonna cut it. (They'll give him a local anesthetic on the leg before discharging him, but I don't think they're giving him any sort of prescription for later, or if they do he won't be able to fill it until he gets back Monday night.)
oh ug. thoughts are with Mr Fob
I hope they give him an RX and glad the mom went with. Best wishes!
I think Clod is going to be deeply conflicted about this.
Trials hold promise of coeliac vaccine
Coeliac sufferers may not have to eliminate gluten from their diets after a successful trial of a potential vaccine.
Scientists at Melbourne's Walter and Eliza Hall Institute say they have tested the vaccine on 34 people.
If future trials are successful, the vaccine could be available by 2017.
Doctor Jason Tye-Din says it could treat around 90 per cent of coeliac patients.
"The gluten-free diet is very difficult, it's costly, it's complex and unfortunately even people who follow it very well, there's a large proportion who still don't get full healing of their bowel," he said.
"Alternatives to the gluten-free diet are really needed."
Dr Tye-Din says the aim of the vaccine is to desensitise people to the harmful effects of gluten, in the same way that allergy desensitisation therapies work.
Well, so long as the vaccine doesn't involve mercury...
We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills.
Clever.
Hope all pans out fine and fast on this Clod. And get well soon Mr Clod.
I think Clod is going to be deeply conflicted about this.
...
:rolleyes: Because if your vaccines are problematic, just redefine what a vaccine is, right? This is not a vaccine by any common understanding of the word. It is a frequent series of injections of tiny, almost imperceptible amounts of gluten, in an attempt to desensitize the immune system. It does not cause an immune response, does not generate antibodies, and does not confer any sort of "immunity" to a pathogen. It has more in common with homeopathy* than the traditional vaccination mechanism.
*Not something I subscribe to, mind you, but they are the ones who would tell you that a homeopathic tincture of imperceptible amounts of gluten taken over a long period of time is what you would need in order to get over your gluten-related disease.
In other news, Mr. Clod's test was negative as expected, he is awake and recovering fine, and he'll be on the plane home in another hour or so.
:he is awake and recovering fine, and he'll be on the plane home in another hour or so.
Good job, Mr. Clod.
So glad to hear it was negative.
Throws up as many questions as it answers I guess.
And I'm so sorry to hear about the extremely intrusive op. Damn, there's a man who loves his kids. And you.
Wonderful to hear the good news, Clod. I sincerely hope that all of this bring some type of positive to you and your family ... somehow.
:rolleyes: Because if your vaccines are problematic, just redefine what a vaccine is, right? This is not a vaccine by any common understanding of the word. It is a frequent series of injections of tiny, almost imperceptible amounts of gluten, in an attempt to desensitize the immune system. It does not cause an immune response, does not generate antibodies, and does not confer any sort of "immunity" to a pathogen. It has more in common with homeopathy* than the traditional vaccination mechanism.
*Not something I subscribe to, mind you, but they are the ones who would tell you that a homeopathic tincture of imperceptible amounts of gluten taken over a long period of time is what you would need in order to get over your gluten-related disease.
.
Trouble with that is, as far as I can see, that you could just as easily sensitize as desensitize someone to gluten.
In theory they're only giving these "desensitization" shots to people who already have been diagnosed with celiac disease. But the idea of sensitization is real: among mothers with celiac disease, their babies are more likely to also have celiac disease the earlier they had wheat products introduced into their diet as babies. But even the diagnosis isn't everything. Among patients with chronic GI symptoms who were all definitively negative for celiac disease, the ones who kept ingesting gluten had a death rate 4 times higher than those who decided to eliminate gluten despite being negative for celiac.
Why yes, I did write a final research paper this semester on gluten intolerance, why do you ask? :) Another fun tidbit: in a study of over 1400 patients diagnosed with schizophrenia who had no gastrointestinal symptoms at all, 23% of them blood-tested positive for celiac antibodies, and their "schizophrenic" symptoms improved dramatically when they were taken off gluten.
At 3:36 in the video:
fajitas.
:urk:
Is Mr Fob back home safe and well? How's his leg?
Oh yes, he's doing well. As it turned out, it was very fortunate that his mother insisted on traveling with him, because the doctor later said to her that Mr. Clod never would have been allowed to be discharged without a responsible adult. I maintain that they couldn't keep him there if he was determined to walk out the door, anyone can discharge themselves against doctor's orders, but better not to have to fight it. Fact was, he couldn't have actually walked out the door regardless. The pain hasn't been bad, but the leg is just weak and unable to support any weight at all. I went and bought him a pair of crutches at Goodwill yesterday morning, and he's doing fine now that he has those. He's off the percocets, and only needing occasional ibuprofen, so he's cleared to drive (the procedure was done on his left leg) and is back at work today.
Clod, I have have immense admiration for you. I don't think I would be able to handle all this stuff at all - let alone as well as you are.
I'm glad he's well, and I'm also glad the results of the test were favorable.
Clod, I have have immense admiration for you. I don't think I would be able to handle all this stuff at all - let alone as well as you are.
So many people express stuff like this, but I just don't think it's true. For one thing, most people tend to rise to the occasion, especially where their kids are involved. I do know a few parents who have just cashed out and mentally/emotionally walked away from everything, but I know a lot more who are doing no worse than we are. For another, I've also had plenty of my own moments where I'm so depressed that I'm refusing to go to bed because it means morning will come that much sooner--I just don't usually get on here and write about it.
I showed Mr. Clod some of the cheering he received, and he was grateful to know people cared. But to the idea that he was somehow extra-dedicated to the kids, he said, "But that's dumb. Every one of them would have done it for their own kids. Any dad would have." I have to say though, I don't think the kids' doctors really realized the level of the procedure they were insisting on. I told Mr. Clod that he absolutely must wear shorts on Scope Day, so they can get a look at his sutures. I doubt he'll still be on crutches by then, but maybe we'll bring them just for sympathy. :)
Dear CF, and Mr Clod as well.
I'd like to comment on your last post.
You're right when you say any parent would step up for their child. You're absolutely right. And you're also right when you say that some parents just check out. I've seen both kinds, many more of the stepper-uppers than the checker-outers though.
What I feel, similar to Spexx's remark, is this. You and Mr Clod are in the stepper-upper group, of course. But what is unsaid is that the size and number of steps in your journey are exceptionally large. Larger than most parents face. *That* extra effort is worthy of extra acknowledgment. You can bask in it or deflect it as you like. I'm just telling you what it looks like from out here.
I do have some first hand experience here. I've been praised in the way you're being praised, and it did feel a little uncomfortable for just the reasons you express. I have step children (as an aside, they are every bit as much MY children as any other, blood relations or not. Anyone suggesting otherwise will be dismissed and an ignorant idiot until my tolerance runs dry at which time the beatdown will commence) and marrying into children is itself an additional degree of parenting difficulty. Taking on such a challenge deliberately is extra noble by itself. Having children (step or otherwise) that have physical challenges (please, I don't want to argue the pc-ness of the description) is more extra work for parents. I have one son who is deaf. I have another son who has epilepsy.
These complications are different from your kids' complications--I am not comparing them. I'm just pointing out that I know what it's like to have hard work, different work than most other parents have. Your kids may never know what went into rearing them. They undoubtedly know they're loved, and that's what counts. Our mutual friend, Pete Zicato nee dar512 said it best: Welcome to the hardest work you'll ever love. It sure is, and I sure do. We can all see you do too.
Well thanks, both of you. I'm not that great at receiving praise, but I'll work on just saying thank you. :)
Spex & V,
Excellent posts - I am still somewhat new at this, but I have seen most people step up as Clod said. I have also seen a few just crumble under the weight of their new reality. I waver sometimes when I think too far in advance. Keeping focused in the "here and now" is the only way for me.
I reach out to others who have already traveled this path and find that they can be the best guides. I also think of the Clod's often.
Warning: graphic medical photos to follow. I realize it's not something everyone wants to see, but I find stuff like this compelling rather than revolting, so proceed at your lunch's own risk.
Scope Day went extremely well. Both kids went into their procedures without protest (they were honestly too lethargic and lacking in calories to have done much about it) and woke up from the anesthesia calmly. Minifobette was knocked on her ass by the whole thing, and slept on the living room floor for the majority of the day after I brought her home. But Minifob recovered within an hour of waking, and had a great time playing minigolf and videogames with Mr. Clod until his sister's box accumulated its 8 hours' worth of photos and shut off, enabling him to come home. Both kids ate a small amount of dinner (and kept it down--they'd both had some problems with vomiting earlier in the day,) and I drove back to the doctor's office to return the receiver boxes after putting them to bed. Neither one has passed their pill cam yet though, which is disappointing because this probably means they'll drop them at school/therapy tomorrow, and maybe this is weird but I kind of want to save them as a souvenir. Cleaned, of course.
Anyway, initial results from the visual scopes were reported to us, though biopsies and pill cam data won't be compiled and reviewed for another couple of weeks. Surprisingly, Minifobette showed no damage to her colon, but the doctor told us that's often the case with the very youngest children who are already being treated with diet; the disease's progression is held at least somewhat in check. The small intestine is where the problem always originates, which is why the pill cam procedure is so important. She's still got some 20 feet of digestive tract to be examined, compared to the roughly 4 feet that can be seen with a traditional scope.
But the boy, he has a good amount of colon damage, in addition to what we're waiting to find in the small intestine. It's not 100% awful from stem to stern, but there's a large section that truly ain't pretty. They gave us printouts of all the captured images before we left the surgery center. See below.
Wow. That's vindication for you. I'm guessing it must be (yet again) a hard thing for you. My thoughts are with you all. What kind of healing/recovery can be expected?
It did stab me in the chest a little to see just how bad it is, though I'm told it could be much worse. But with the right combination of steroids and anti-inflammatories, along with his continued restricted diet and supplements, I'm told that it's expected to go into full remission. The main hurdle was finding a doctor who wouldn't just pretend it didn't exist, so it that regard we're on the far side of the mountain and it only gets better from here.
That is great news, you can focus your energies on healing, not squandering them on battling with docs.
... it only gets better from here.
That is great news, you can focus your energies on healing, not squandering them on battling with docs.
Amen to all this. Hugs to you Clod, and your family.
Sorry that you were right about the boy. But glad too, that it's been so clearly identified.
I can't speak for anyone else, but I love pictures like this. If you get any shots from the pill cam, I'd be interested to see those too.
I can't speak for anyone else, but I love pictures like this. If you get any shots from the pill cam, I'd be interested to see those too.
Same here.
Wow, Clod! The bad part looks as if it's blistered. I wonder if the reaction is similar to poison ivy.
I can't tell you how sad I am to see that picture, Clod. What part of the intestine was that?
The paperwork says terminal ileum.
That's the place, not the diagnosis.
The terminal ileum is the last part of the small intestine where it meets with the large intestine. I'm sure there are other things this might be (Celiac inflammation?), but that is a common place for Crohn's disease to hang out.
:thepain:
NOW at least you can proceed with assurance and with a course of action.
According to the small number of doctors who are intensely studying this stuff, autistic enterocolitis is its own diagnosis. Our doctor said that the most closely-related disease is, in fact, Crohn's disease, but that there are some key differences that make autistic enterocolitis unique (and all autistic patients with bowel disease display some level of these unique traits, though they may also have comorbid diagnoses on top of that, celiac disease being most common.)
Part of the procedure was we donated blood samples and part of our biopsy tissues to the biggest autistic enterocolitis research group at Wake Forest University.
It feels wrong to say congratulations or be excited you received a diagnosis, but in this case I think it is a positive. Proof. Vindication. Now you can really truly move forward and any doctor who pushes back can just shove off.
this probably means they'll drop them at school/therapy tomorrow, and maybe this is weird but I kind of want to save them as a souvenir. Cleaned, of course..
Can't you lie and say you have to keep them so please have them poop in potties and save it?
ok, maybe not.... :lol:
That is definitely something I would do... if I hadn't already mentioned several weeks ago that the pill cams were disposable.
I did, however, get Minifobette's back, and learned in the process that they float, so I know I haven't missed Minifob's yet. He says he didn't poop at school, and he's generally accurate about that sort of thing because he likes to tell me which bathroom he used each time at school. But I'm actually getting a little concerned because he has pooped three times now, and by definition the food all went in after the pill cam. So now I'm imagining it stuck at some swollen stricture, his generally liquid poop just flowing right around it, never pushing it out. They said not to be concerned if it takes 2-3 days to come out, so I guess it's not hugely dangerous if it gets stuck for awhile, but still.
that is so crazy small and incomprehensive...
(You keep using that word. I do not think it means what you think it means)
The main hurdle was finding a doctor who wouldn't just pretend it didn't exist,...
That's infuriating.:mad:
A sample of what a 3-year-old autistic child's mind is like:
For the last two days, my daughter was refusing to eat. She would drink her pureed veggie smoothie-esque things I make for her, but no solid food at all unless I spent half an hour forcing each bite in amidst screams.
We ran through all the possibilities: sore throat, her cavity has suddenly reached the point of being painful, some sort of new indigestion with something making her afraid to eat anything... of course she wouldn't fucking tell us a thing, just lay silently on the couch in a low-caloric daze and freaked out anytime food was suggested or offered.
So just now, I figured it out. Two days ago--the last time she willingly ate food--she had eaten out of her lunchbox at the kitchen table, because my mom was watching her for a few hours and wasn't up for preparing her food, so I packed it before I left. Apparently, Minifobette wishes to eat all of her meals out of her school lunchbox from now on. As soon as I showed her the food inside it, she bolted into the kitchen and scarfed it down. But attempting to communicate that to me was impossible, as was allowing herself to eat the exact same foods on a plate once she'd decided the lunchbox was the way she wanted it. Letting herself starve was the only option she could come up with.
Oh God, CF! How do you cope?!
Sounds like a Turbo 3 yr old. Ours recently went on a hunger strike and wouldn't say anything, finally mrs foot figured out that the pancakes weren't cut properly or something crazy like that.
It is maddening.
After a week-long maelstrom of countless phone calls, it's all been settled. Mr. Clod is going to Minnesota on May 9th to get a big chunk taken out of his leg at the University. It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected--but I honestly think he's kind of happy that he can be the one to do/endure for the kids, for once. Testing is done immediately, so we'll have confirmation that we can go ahead with the kids' procedures before he even gets back on the plane. We got ourselves approved for an "in-network exemption" through insurance, which means it's completely covered, and my mom is giving us air miles she was never going to use for us to fly him up there. It's worked out as well as it possibly could have, considering.
This is probably better than flying the children to New York for the procedure. Your children might need other medical procedures that require general anesthetic and the medical center that perform that procedure could require the same data this ambulatory center is requiring. This way you have the information already, instead of having to delay to find a facility that will do the procedure in the event they have the gene but you don't know, or having to delay to get Mr. Fob tested so the facility you want to use will have the information it needs to go ahead.
In other positive news, my mother-in-law gave my daughter something similar to this for her birthday. This is nice not because of the item itself, but because she got it "from a friend with an autistic child, and I guess he'd grown out of it." This is the first time she's acknowledged Minifobette's autism in any way, even indirectly. Giving a toy that is at least nominally "meant for" an autistic kid is a huge step for her.
I am jealous of your child, I want her toy.
I don't think you have to be autistic to enjoy that...
It did stab me in the chest a little to see just how bad it is, though I'm told it could be much worse. But with the right combination of steroids and anti-inflammatories, along with his continued restricted diet and supplements, I'm told that it's expected to go into full remission. The main hurdle was finding a doctor who wouldn't just pretend it didn't exist, so it that regard we're on the far side of the mountain and it only gets better from here.
It sucks that y'all have to go through all of this, but it is a relief to know I bet. And hey! Full remission has that good of a possibility?! Fucking awesome!
Hi Clod--
Our parenting experiences are different, they overlap but not everywhere. For example, I don't think I would have made the connection you did. I'm smart, you're smart, I love my kids, you love your kids, I pay attention, you pay attention.... My kid would have starved though. I try to think about what I would have done in that situation and I think I would have continued the smoothies, and then tried to force/compel/cajole/trick her to eat the regular stuff that she'd been eating only recently. And then, given up. "She must not be that hungry." True or otherwise, I don't know what I'd have done, short of force feeding her. I (I emphasize *I*) don't believe she (my imaginary daughter) could/would starve themselves. Probably wrong, certainly they can make things much worse for themselves by not eating properly or regularly. I would have concluded that whatever thought process led to such a conclusion could happen again and then food would be "OK" again. And by the same process, who knows, tomorrow something else might be just as inexplicably impossible.
But the insight you describe, I have had some lucky looking guesses in my day, informed by my accumulated parenting instincts, I read what you wrote, and I just don't see myself making the same leap. I'm so glad she's eating again, really I am.
I think I would have continued the smoothies, and then tried to force/compel/cajole/trick her to eat the regular stuff that she'd been eating only recently.
This is where we were starting to go (before I remembered the lunchbox,) minus the cajoling and tricking. Standard therapy techniques say you just have to calmly, kindly, give them no option but to [insert whatever behavior you are requiring.] I don't believe that in the end she'd allow herself to truly starve, but I'd have had to take away the veggie smoothies before she could hit rock bottom.
My son's friend is autistic, and when he was about 6 yrs old, he injured the inside of his mouth (I forget how). He hardly opened his mouth for 3 weeks. Didn't talk, and I never saw him eat.
I tip my cap to you Clodfobble, I really do.
There's precious little in my whole life that is more important to me than my kids and my role as their father. I take it as seriously as I can. Naturally, this doesn't mean being a hard case all the time. I goof with them, and play and set adamantine limits which they cannot break (but manage to outgrow and bypass). I'm just dazzled that you pulled that rabbit out of your hat.
When they were little they were *so* cute. And I loved them and was infatuated by their cuteness. I remember being a little wistful, nostalgic as they grew out of little and cute. *sigh* But then I noticed other new aspects that I loved, principally, as they grew older, I traded saccharine cuteness for sage wisdom. I could *REASON* with them. Who of thunk it? And that has become the new awesome. This fades, by the way, as you/I become dumber and dumber as they progress through their teenage years. Have courage, it is temporary.
I'm rambling. You don't need any lecturing from me. I'm just happy and amazed at your story. I love a happy ending. :)
Yours,
From your recent post in the discussion about viewfinders.. wait.. I forget the connection. Well, it has to do with the fact that I was thinking about you and your cooking (and you too PeteZ). Today there was a very interesting program on gluten free cooking.
Here's the link.
Here's the blurb.
Gluten-Free Baking
Marcie Sillman
06/13/2011 at 10:00 a.m.
How do you bake a muffin without wheat flour? For those who are gluten intolerant, gluten–free baking is not only a necessity, it can be a fun challenge. Last month, the New York Times ran a long feature about the surprisingly delicious pleasures of gluten–free baked goods. Shauna James Ahern has written a cookbook and has a popular blog all about cooking without gluten. Today, gluten–free baking; the challenges and the joys.
Guest(s)
Shauna James Ahern runs the blog Gluten Free Girl and is the author of "Gluten–Free Girl: How I Found The Food That Loves Me Back ... And How You Can Too." She has celiac disease.
I'm a regular visitor to Shauna's site. She's a good egg.
EGG??!! I thought eggs were verboten!
Did you know that most people with an egg allergy are actually only allergic to chicken eggs, and can eat duck eggs or goose eggs with wild abandon?
Duck eggs have just a whiff of game-iness if you're eating them completely unaccompanied, but they are larger and firmer than chicken eggs and a delight to bake with. There was a very brief time (like, maybe 10 minutes) where I investigated the possibility of actually having ducks in our backyard... but it's far easier to just buy the eggs from a local duck egg guy.
I wonder if the chicken egg allergy is related to their feed or just decades of over exposure/consumption.
I'd guess that both are contributing factors. Most allergies are at least partially related to whatever happens to be in your system when your immune system decides to go briefly apeshit. It's why people who move, from anywhere to anywhere, usually find that their seasonal allergies are vastly improved. They're allergic to northern (or whatever) species of trees/pollen, but the people who have lived in Destination City since childhood are allergic to their own trees/pollen. But if the things that happen to be in your system also happen to have crazy-ass non-biological chemical components, like food that's been processed/pesticided/overfed with antibiotics, those food molecules are also more likely to be chosen by an immune system looking for something to attack.
A number of vaccines are cultured in chicken eggs as well - so over exposure just isn't by eating it.
Oh, and hi :)
Heya, Dagney!
The vaccines cultured in chicken egg aren't even as freaky as the ones that are grown in aborted fetal tissue. There's a rapidly growing movement of Catholics who are refusing vaccines once they find out that fun factoid.
Hi Dagney!
Long time no see. Welcome back.
Duck eggs have just a whiff of game-iness if you're eating them completely unaccompanied, but they are larger and firmer than chicken eggs and a delight to bake with. There was a very brief time (like, maybe 10 minutes) where I investigated the possibility of actually having ducks in our backyard... but it's far easier to just buy the eggs from a local duck egg guy.
I love me a bit of duck egg. And I agree about the game-iness. But I like it :)
Having visited houses where they keep ducks, I certainly agree about the mess. Ick.
Tiger's penultimate Speech Therapy assessment today.
She did not even want to see him.
This I get, because she has told me all along exactly what she is doing. Her previous assessment was all that she needed to grade him on the aspects of communication that had previously been identified. Passed on all. Of course I knew he would. 10 months maturity plus classroom assistance plus one to one.
Now we just have to focus on his autism/ asbergers, but the official diagnosis only came through two weeks ago. I'm hoping for a fairly seamless transition, but at the very least he has me.
The ST approved my most recent Social Story. She added some sentences in to expand it, but left everything else in tact, including the lower third (it was split into three sections). What she added really made sense to me, and made the story so much better. But she's a trained therapist and this is new to me, so for once I am not beating myself up.
I have another Social Story to write for next week. Then I'm done until next year. Arrgh! Clod - I might bug you between now & 21st July...
I know I can contact the Speech Therapy dept next Sept if it's a difficult transition. SD said I can. But technically, Tiger will come under a different dept - Special Teaching Needs. Meh - I know how slowly wheels turn. I'll keep my Speech Therapy contacts as long as I possibly can.
Hijack over.
Clod - I might bug you between now & 21st July...
Sure, whatever you need. I'm glad the first few have worked out so well!
'Duck egg' is a common phrase used here when someone's been a bit daft:
You duck egg.
A very effective summer! The Crohn's disease meds are awesome (a combination of Prednisone, Entocort, and Pentasa,) and the GI doctor is a saint. There was the potential for some negative behavioral side effects from the Prednisone ('roid rage, essentially,) but we didn't see any. Both kids did get a little bit hairier, but neither became wolfman, and it falls out once they're off it. Minifobette's stools became completely perfect and solid, and stayed that way after stopping the Prednisone, so she's done with that part, and is now just maintaining with the other two. The doctor is encouraging me to try to add some foods back into her diet, but I have to admit I'm terrified to do so. So far we have one new food, and then she got sick with some bug from school, so we went back on hold for awhile. Minifob's stools got almost perfect, but his behavior started regressing just a few days off the Prednisone, so he's back on it for another month.
Not-so-funny story: at the pharmacy one month, they accidentally rang up the real price of the Entocort prescription, then undid it and put in the insurance copay. One month's supply of Entocort for one child? $805.95. No shit. Thank fucking God we have insurance.
But check this out! Minifob drew this in Kindergarten yesterday. Before the summer, he could barely form a legible letter, and couldn't use representational shapes at all. He's not just improving, he's catching up. I've been trying really hard not to jump the gun on any declarations, but he really is about 95% of the way to "maintained recovery" (i.e. symptom-free, but only if he stays on his diet/meds.)
One down (almost,) one to go.
Wow. That's a leap and no mistake. Glad things are starting to come together for your babies.
So, so glad to see the Clod. You're the one who's a saint, you know. I'll keep my fingers crossed that this all keeps heading the same way!
That is really great news, Clod. Good for them. And hopefully life will get easier for you and Mr. Clod. And thank FSM for your doctor.
Tiger could not have drawn that picture.
He writes well, and reads well, but cannot draw from imagination.
Give him something to refer to (he doesn't copy, but he needs someone else's imagination) and he has a very good eye for colour, shape and proportion.
If I simply requested a picture to illustrate I Like Playtime (recess) there is a good chance I would get a scribble.
I've bought him a structured doodle book for us to work through together. It has directions and examples on every page. I might be way off mark, but I really hope it will speak to his organised mind and we'll get some lovely patterns, colours and copied creatures.
Fantastic work, Clod.
Great to hear Fobette is progressing so well.
Of course she is different than Fob, but your experience with him has obviously helped you with her.
Wow, I can relate to Tiger. I have absolutely no artistic imagination, but give me something to copy and Im not half bad. However, give me an organizational challenge and I'm a whiz - for instance, getting everything to fit in a suitcase or in cabinets when it doesn't look like there is enough space.
they accidentally rang up the real price of the Entocort prescription, then undid it and put in the insurance copay.
One month's supply of Entocort for one child? $.805.95. No shit.
The real cost... $.08595.
I'm dealing with the same thing.
Total "no insurance cost" was over $2000.00 a month.
Medicaid cost, now that I finally found a pharmacy that accepts it, $0.
This thread always makes me think of Lorenzo's Oil.
He should draw for Hyperbole and a half.
Well, it's happened. We got our very first "he must not have ever had autism to begin with" implication, just like I knew we would. (The comment was from a distant acquantaince, sparked by the latest progress video I posted on YouTube, seen below.)
Of course I couldn't let it stand, and I politely asked how many other kids out there with NotAutism (TM) are going untreated because their parents have been relentlessly told that their kids' disease is definitively not treatable. About 85% of the parents I have personally convinced to try treatment have seen major improvements, and at that ratio it kind of comes around full circle and becomes "children with a diagnosis of autism" again, because what other descriptors do we have? Might as well re-diagnose the non-responders instead, it would be less paperwork.
I can't wait until it turns out my daughter never had autism either.
[YOUTUBE]HqNHxETsO08[/YOUTUBE]
Wonderful. I love seeing this after following this thread for so long.
There's been way too much going on, I keep starting these long posts and then abandoning them because I don't have enough time to properly explain everything that's been happening. But I wanted to throw this tidbit up here.
Studies on the GI problems of autistic kids have been coming fast and furious recently, a new one is published at least once a week and there are a total of maybe 200 by now, confirming or exploring various aspects of autistic GI pathology. Now, when discussing one of the recent GI studies done as a joint effort between Harvard and Columbia, the Chief Medical Officer of the US Autism & Asperger Association has made the ballsy step of
saying:
This reaffirms the published findings in autism from more than a decade ago of such groundbreakers as Wakefield, D’Eufemia, and Horvath, all of whom the authors reference.
For a mainstream, high-profile MD to speak positively of He Who Must Not Be Named... believe me, this is huge.
"...Yeah, I bet they can't get in the car after it goes..."
I was cracking up at this whole conversation, it sounds just like the kinds of chats I have with my kids.
Oh, and your kid is clearly a malingerer. nothing wrong with him at all. ;)
Nothing wrong that a good whipping wouldn't fix, anyway!
Actually, that's what has us in a major frenzy these last few months. It was time to wean off the steroids, and it did not go well. Minifobette got off them okay, but Minifob definitely still needs them, and at a relatively high dose, or he regresses severely. Except being on them forever is not an option, they will fuck your shit up.
So we are now working with the doctor on a different combination of meds, including a higher dose of the non-steroid anti-inflammatories, plus a very low dose of immune suppressors, which have had good results in people with severe autoimmune disease. On the one hand, these meds are serious business and I'm scared to death of them. But on the other, there are kids who get kidney transplants or whatever, and they take immune suppressors for the rest of their lives and somehow manage. As the doctor said, "These are drugs that are reserved for very serious conditions like cancer--but frankly, in my opinion this is worse than cancer." And I agree. It was pretty damn devastating to watch him fall apart again within just a couple weeks of going off the steroids. Fortunately his teacher has been very understanding, since she now has to deal with a very different kid than she started with. We've gained about half of the ground back, but right now he is as bad as he was a year ago in most respects. Stuttering and perseverating much, much worse than he was in that last video. Very difficult time focusing, major emotional upsets over imaginary problems.
I keep remembering how Lookout went through this same thing with his son and Abilify. I have the medicine right here in my cabinet that would make him all better, but I can't give it to him because it will eventually hurt him worse than he's hurting now.
Sorry to hear about the setbacks Clod.
My thoughts are with you and the Fobs very much.
It's odd, rewatching G after all this time.
I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.
I've worked with Tiger for a whole year (wow!) and still new people to school do not understand why he gets help and other more obvious (more worthy?) children do not. He loves order, and aside from calling out and needing immediate attention if he has something to impart, he is considered polite, well mannered and no trouble.
Mars on the other hand (my 7 year old) is large for his age, less responsive to interaction, more insistent and has a history of physical aggression. People give me a slightly pained grin when they realise I work with him too. I am about to start a highly structured programme of lessons with him. During time he was previously allowed to run around and blow off steam (!!!) I knew it was coming and have prepared for the change by having Friendship Time, where we play games that involve turn taking or the potential for pushing and shoving (praise if it doesn't happen, discussion if it does). I have chosen the children and decided the games, to get him used to the fact I am in control. I've made them fun, but imposed definite rules to ease him into it.
In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class :facepalm:
Of course it didn't matter - we're a C of E school - tolerant but determinedly Christian. The boys would not be at our school if their parents had an issue with Western values. Just gave me a wry smile.
I'm freewheeling with Tiger at the moment, so the planned structure with Mars will be a change in gear for me too. Think of me on Wednesday.
In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class
:lol2:
I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.
Tell me about it. I can pick out the spectrum kid(s) in the room in under 30 seconds now. But there's no point in telling the parents. A couple years ago one woman excitedly told me that Minifob must not have autism after all, because her little boy did all those same things! Yeah.
Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.
I haven't had a chance to work with H this week - have had a vomiting bug which means I was at death's door yesterday, nauseous this morning, but not allowed into school until Thursday :sob:
Anyway. I've taken on board the idea H might really be embarrassed by an adult singing (as he perceives) to him.
He isn't on the spectrum, he's a child without an official statement who needs extra help.
But that doesn't mean he has to go along with the school ethos.
Because I loved singing and was used to singing every day it was normal and natural to me.
There were probably children in my class who felt like H - it's one thing for a teacher to lead a class in singing, and to sing along yourself, but to have an adult singing AT you is just cringy.
THRASS is a phonics system we use all the way through school, not targeted for lower ability children. So he knows the songs, uses the mat and sings along every day to the songs. And I know he loves singing, from the Nativity.
I'll try speaking the songs first. They are useful.
Example (a few words changed for copyright purposes)
Let's do the cat, kitten, duck, school hand-jive
Cat is C
Kitten is K
Duck is CK
And school is C and H
There's another bit about Queen being Q
It's phonics.
Anyway.
Things to think about.
Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.
Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that
now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.
Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.
I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"
Uhh, yeah but aren't you feeling great because you're on meds?
Been there done that as an adult, so it is a lot to expect of a wee bairn.
Plus, it's not like he's the one who chooses to go off the meds or not. He just takes whatever pills I put in front of him. Speaking of which, Minifobette is going to do the pill-swallowing clinic over Spring Break. I am bouncing with excitement.
the pill-swallowing clinic
Ve haff vays...
I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"
Uhh, yeah but aren't you feeling great because you're on meds?
Each summer I go to a hippy festival and help out in the firt aid tent. About a quarter of the ambulance cases are exactly this.
"It's such a wonderful loving environment, I dont NEED my anti-depressants/anti-psychotics/whatever..."
Usually takes 12 to 36 hours before they're being taken away. Silly buggers.
Ve haff vays...
Boy, do they ever. Ain't nothing so pleasantly stubborn as a behavioral therapist.
Ha ha, that insisting with a smile can sure wear you down. :D
Followed advice from here with H today.
Spoke the song that would help, using the correct cadence, but not singing.
It got him singing under his breath. He sings well and enjoys it, as I said before. He couldn't get the missing word though, so it's a bust and I won't pursue it now.
We were very silly on one of his wordwall words.
Just before half-term we went through a new wordwall. What with the holiday and my sickness, we only got to review it again today, Other people have read with him, but I am mostly his wordwall monitor.
So before half-term he managed to half sound out coffee. He got coff, but gave the double ee an ay sound, and also gave it emphasis: Coff-AY.
I helped him put it in perspective, and in a few sentences but he did have a giggle about the way he'd pronounced it.
Today we got to coffee and he confidently pronounced it coff-AY. I'm sorry, it made me laugh. That's exactly how it is pronounced in a broad Leicester accent. I didn't intend to do more than grin, but I snickered. H then started giggling because he thought what he had said must be very funny.
So he said it again and gazed up at me with innocent eyes and cracked me up again.
Bad Mrs O.
Mrs J looked over to see what the joke was.
I told her later. As with you, I related it when it was no longer funny.
But I suspect H & I will be mildly amused by it for a while.
My first FORMAL session with Mars tomorrow:
Introduction
Establishing rules
Warm up
Issue being addressed
Review
Cool down/ relaxation
Nervous. Not least because I have been left to scrabble for a private space.
Might have to kick this upstairs. The people I have addressed my concerns to so far have given reasonable ideas of how to solve it, but they aren't realistic ie use a Topic Room: all booked for that time. Hall? Booked. Classroom? Not available until 13.30 (20 minutes into the session) Library? Not condusive to these sessions because people drop in and out.
That's the trouble with starting partway through the school year.
I found that with Tiger last year.
Now I'm working with TWO autistic children and yet expecting them to deal with random spaces. I have a routine with Tiger because we started this school year together. But the times and timing of our sessions have changed three times now and I've had to find us a space every change.
And Mars... we trek around the school looking for space.
No t a great start for a one-to-one.
For the first time in my life I long for summer.
Even if it's raining we can sit in the Gazebo.
Grrrrr for working hours that don't take account of timetables.
Watched a fascinating documentary last night and thought of you and your fobs.
Louis Theroux: Extreme Love - Autism
In America nearly one child in a hundred is diagnosed with an autism spectrum disorder - a brain disorder characterised by an inability to socialise and communicate.
Louis travels to DLC Warren in New Jersey, one of the most innovative autism schools of its kind, to find out how specialised intervention can help both the children and the families who care for them.
He meets Joey, whose mother Carol is finding it increasingly hard to cope with some of the more challenging aspects of his disorder. In between the ever more explosive tantrums, Louis discovers a cheeky and charming 13-year-old, but there are tough decisions ahead about his future in the family home.
Nicky is 19. After making good progress at DLC Warren he is about to leave, but the prospect of change leads to increasing anxiety and erratic behaviour. Surrounded by a loving family who say they wouldn't have him any other way, he shows Louis his novel Dragonula and invites him to share his first day at his new school.
There were a few other kids. Each very different (obviously!) and facing different challenges and prospects.
What was really lovely was how well Louis seemed to connect with some of the kids. There was real warmth.
But what was really interesting was seeing what the reality is for many parents of children on the autistic spectrum. They didn't really look much at dietary stuff or the GI problems. There's only so much you can do in a single docu. But they did show a lot of the practical issues facing some autistic children and their families. Heartbreaking in places. But also quite tender.
I did find myself sitting there thinking....nooooo don't give them that cupcake packet mix to make in their lifeskills classes... read Clod's blog damnit!
But yeah. Really interesting. Set me to wondering how your littleuns are getting on?
Yeah, it's one of the really frustrating things, when you hear people talk about how severe autism is "just another way of seeing the world," or a gift that should be celebrated... people usually only say this when they have no experience with how incredibly, incredibly difficult autistic behaviors can be.
Nobody ever says schizophrenia is just another way of seeing the world. Yet many autistic people can physically injure others just as well as a schizophrenic can. Plus they may shit their pants while they're doing it.
Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.
The little boy I babysit after therapy has made zero progress in the last year, has actually gone backwards in my personal opinion, but his mother was, apparently, unprepared to hear this from the school professionals. They "broke the news" that they didn't see him in any sort of inclusion scenario for Kindergarten, that he clearly belonged in a full-time special ed classroom, which is obvious to anyone who spends 2 minutes with him. But apparently she thought that wiping poop on his face and being mostly non-communicative is close to normal for a 4-year-old. Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD, I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.
ANYWAY. Yes, Minifobette's kicking it. :) Far better than her brother was at this age. Unrelated, but still adorable, her hair suddenly decided to turn curly, and over the last 6 months has gone from stick-straight to giant ringlets. This is also the child who was born with dark red hair that later turned blonde, so we have no clue what's going on with her follicles. She's been able to taper off some of her meds, but some remain persistently necessary, like the high doses of vitamin K, B vitamins, and magnesium. She's still on Pentasa and Oxytocin. She also has struggled with strep a few times, and we're dreading the possibility that the Zithromax will stop working, like it did with her brother, and she'll eventually have to have her tonsils out. But that's for the future.
Minifob is back to a good middle ground after a rough winter. The low dose immune suppressor enabled him to get off the steroids without regressing, which was the goal, and now the goal is to hopefully get him off the immune suppressor. It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around. So we cut out the formula cold turkey and tightened down his diet to the same strictness as his sister. This caused significant digestive upset for a few weeks, but we got back to baseline and then beyond, so it does appear that it was the right choice, a necessary two steps back in order to take three steps forward. Overall this means the delta change from the beginning of the school year isn't terribly impressive from a behavior and speech standpoint, but he has at least been steadily gaining in academics the whole time.
The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting. In math, he has trouble with low-level arithmetic but is way above grade level on abstract concepts like time, measurement, spatial relations. Reading and comprehension are above grade level as well, except he has absolutely no understanding of passive voice. As far as he's concerned, "The baby was kissed by Grandma" is equal to "The baby kissed Grandma," and he thinks we're all insane trying to explain the difference to him. He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."
Long story short, Minifob's disease still requires constant maintenance at this point, but we're getting there. Minifobette is a little better off, moving forward at a more rapid and steady pace. They're both expected to be scoped again in roughly May of 2013, two years after the first scope, to examine progress. So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines. :)
Lookin' forward to that :p
And also looking forward to when both your little ones 'were never really autistic' *smiles*
Damn, I wish my parents had been this pro-active when I was a kid, maybe I wouldn't be such a screw-up now. I don't blame them or anything, I'm just saying. I guess the 90s was a different time, recent as it is.
Sorry, don't want to be a downer here... I guess I just wanted to congratulate everyone who's putting crazy amounts of effort into getting the best for their kids on here. Best of luck to you all.
Overall, I am so happy to hear this good report. A couple excerpts and comments.
snip--
Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.
Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.
The little boy I babysit after therapy ...snip...Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD,
nosy? or just comparing notes? This woman is a frustrating and annoying puzzle to me. It's like she recognizes the magnitude of her problem and the corresponding responsibility she has and upon realizing it, runs screaming (back) into unreality. A tv show? orly?
I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.
***start***
***end***
ANYWAY. Yes, Minifobette's kicking it. :)
I love this (unboldable) part of your response to her. What a maroon, and what restraint on your part. I wonder what happened in that blank... eyerolling? big sigh? counting to ten? a hundred? Regardless--High five!
It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around.
good choice, I would make the same choice, I'm glad together you were able to take your "five steps".
The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting.
been there, done that, keep up the good work sister.
He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."
I totally know how he feels, this happens to me all the time.
So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines. :)
Pics or it didn't happen. Actually, pics of giant ringlets would be even more welcome, if you're amenable. :)
Glad to hear your update Clod, especially the progress Fobette is making.
I can't write any updates about Tiger at the moment.
Suffice to say I do write them and delete them.
All is not rosy in my LSA garden. There is someone that needs a kick in the cunt.
Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.
Yeah, it's the mingling that does it. I really hate this phrase, but I'm "active in the community." Messageboards, a couple groups that meet in person, and aside from the carpooling I see all the other parents at our particular therapy clinic every day before and after. And because autism often prevents parents from leaving the house with their kids at all, it's very isolating, and so we all cling to each other and pretty much talk about nothing but autism crap all the time. Which is good, but not good, too.
I actually came to the decision awhile back that I simply won't attend ARDs anymore. It is deeply unhealthy for me. Mr. Clod has no problem with confrontation, and no problem being the passive-aggressive negotiator. I can't do that. I fumble when put on the spot, I get emotional, and then I spend the next 6-9 months fuming about all the things I should have said to those people. The kicker was the ARD for Minifobette that was, unfortunately, scheduled for the exact day last year that my kids were doing their cleanout for their colonoscopies the next day. So I was already frazzled that morning, having to deny my kids anything but clear liquids for a day, and then the advocate that we'd hired to fight this particular battle for us screwed up and had to only be present over the phone, which is like not being there at all. They had brought in an upper-level biatch to stonewall me, who is known for deliberately saying infuriating things like, "
As a parent, I completely understand how you feel," because she knows damn well that if she can get you to scream at her (as I know for a fact that three friends of mine have done) that her kids aren't disabled and she doesn't know a damn thing, that she's gained the upper ground in the negotiations. Anyway, first I sobbed, and then I started inappropriately sharing the difficulties my daughter was having at the time and why no one in that room could even understand, and ultimately I completely checked out and gave everyone a dead-eyed stare for the rest of the proceedings. Her teacher hugged me afterwards and apologized so many times, because of course she was powerless too and had to just sit through it like the rest of the people who actually want to help these kids. And I went home and told Mr. Clod that he's doing them from now on, period. I will not go. And he's really good at being a quiet, unperturbable bastard, so it works out for everyone. :)
Do you think minifobette is doing better because she started the regimen earlier than her brother?
OMG, added to Clodfobble's accomplishments... she's
Frieda's mother. :lol:
The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?
Do you think minifobette is doing better because she started the regimen earlier than her brother?
Yes. She was actually on a path to be much more severe than he was. Generally speaking, the later the regression happens, the worse they are. But she was gluten-free and dairy-free even before her big regression hit at 12 months (compared to Minifob, who was showing significant symptoms by 3 months--significant in retrospect of course.) She lost everything, all awareness, speech, and eye contact; whereas he always kept pretty good levels of all of those.
The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?
He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."
He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."
Yeah...maybe, like he's just an Old Soul ;p
New newness on Minifobette's front... We've suspected since she was 18 months old that she has vision problems. I was in glasses by the age of three, so the genetics were ripe for it. They have neato machines now that can just scan the topography of your eye and tell you your prescription, not like in my day where you couldn't even test a kid until they reliably knew the alphabet. But she's always passed the basic vision tests just fine, and her scanned prescription was a little nearsighted, but not enough to justify glasses for a toddler. Still, she squints constantly. But they always told us to come back when she's older and more responsive to testing.
Well, she is now. And after a full barrage of tests by the developmental optometrist, the results are that her focus is still basically fine--but her eyes have a tendency to wander independently instead of working in tandem, and she is suffering from significant double vision at most distances. The doctor showed me how she could cover one eye, and after a moment pull it away, and her covered eye would have drifted off to the side and have to return back to the middle to see whatever the other eye was focused on.
At its root, this is a muscle tone problem, which is a universal thing with her. But I've been told by the optometrist as well as other parents that "vision therapy," which is to say exercises similar to what they do to correct lazy eye, will help dramatically, and will likely improve her eye contact and general demeanor as well, since constant double vision is assumed to be causing headaches and a certain amount of daily frustration.
So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...
So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...
One problem at a time. Good for you and Fobbette.
tags:
autism, food intolerance, and now eye push ups.
poor kid.
But when she becomes the first Miss America with three PhDs, it will be worth it.
Most terrifying hurdle for Minifobette yet.
She's started engaging in self-injury. It began with one small cut on her face about 6 months ago. She kept picking at it, and it took 2-3 months to heal properly (there is still a mark from it even now.) But we thought it was an obsessive thing, not a pain thing. Then awhile back she got a handful of mosquito bites while we were outside on a humid day, and she picked at those until they bled, then picked the scabs off the next day, and is still picking at those same scabs even now. Recently she's added another couple of bug bites to her collection, and also two small scrapes on the tops of her feet from tripping at the pool.
She picks at them all constantly, and when we've tried to stop her she gets furious and screams "I need to hurt!" And even if we force the matter and stay on top of her every minute of the day, when we get her up in the morning her sheets are dotted all over with blood. She pulls off bandages, rolls up long sleeves, and hides where we can't see her in order to tear all her scabs off.
I don't want to put a fucking 4-year-old on anti-anxiety meds. I also don't want to see my daughter's face streaked with blood every day. And I know that the process is addictive: the more she substitutes physical pain for emotional stress, the more she'll need it. So there's something to be said for nipping it in the bud now. But Christ.
My second son (autism spectrum/Asperger's, early onset bipolar, PDDNOS, the diagnoses changed with doctors and time) went through that process - you're right, it's obsessive behavior and very hard to redirect. It may need some temporary meds to help break the cycle at night, but hopefully you can work out a way of redirecting in the daytime that will help ...?
These things are tough. Sorry it's going on.
But Christ.
Rough deal Clod, sorry.
Our daughter in 8th grade has been having trouble with picking scabs, and although she hasn't given any signs that she likes the pain. It's just some sort of compulsion. She couldn't stop herself from picking, and felt self concious with a dozen bandaids over all the bug bites.
We ended up getting liquid bandaids and applying it every day or a couple times a day. She would still pick at the liquid bandage, but the scab underneath would have time to heal. The liquid bandage was basically a sacrificial layer. I'd suggest trying the liquid bandages. It's kind of a long shot if she really is looking for pain, but it might work.
Thanks. I do have some of that stuff, I'll try it tonight.
Clodfobble:
heard this recently, especially the part about skin picking.
http://www.npr.org/blogs/health/2012/10/01/161766321/nail-biting-mental-disorder-or-just-a-bad-habit
Mathews specializes in pathological grooming — a group of behaviors that includes nail biting, hair pulling, called trichotillomania, and skin picking, known as dermatillomania.
"They are behaviors that stem from normal grooming — the kind of thing that most animals do and is evolutionarily adaptive, right?" says Mathews.
But in pathological groomers, those behaviors go haywire. Instead of being triggered by, say, a hangnail, the pathological nail biter is triggered by driving, reading or feeling stressed out. "After a while, the behavior becomes untriggered," says Mathews. "It becomes just an automatic behavior that has no relationship to external stimuli at all."
Until recently, the DSM treated pathological grooming a bit like an afterthought and put it in a catch-all category called "not otherwise classified." But the new DSM proposes to lump together pathological groomers and those with mental disorders like OCD. That includes people who wash their hands compulsively or have to line up their shoes a certain way.
These behaviors have a lot in common. In both cases, it's taking a behavior that's normal and healthy and putting it into overdrive, doing it to the point of being excessive. But in at least one way, OCD and pathological grooming are also very different.
"In OCD, the compulsion is really unwanted," says Mathews. People with OCD don't want to be washing their hands or checking the stove over and over again. There is no fun in it. There's fear — fear that if they don't do something, something else that's very bad will happen to them.
But from her pathological grooming patients, Mathews hears a very different story: They enjoy it. "It's rewarding. It feels good. When you get the right nail, it feels good. It's kind of a funny sense of reward, but it's a reward," she says.
That's sad, Clod. When I was young, I scratched mosquito bites til they bled, then picked the scabs, because it relieved the itch. Not only do bites itch, but healing itches. I wonder if she was not expressing herself accurately, and meant that she wants to stop the itching.
I've read good things about the
Therapik, and am very tempted to buy one. It supposedly takes the itching away from mosquito bites by breaking down the protein with its heated tip. I understand the sooner you use it after being bitten the more effective it is.
Reminds me of someone here talking about running very hot water over poison ivy rash to make it feel better.
Good luck, Clod. I hope you find the right solution.
When I was young, I scratched mosquito bites til they bled, then picked the scabs, because it relieved the itch. Not only do bites itch, but healing itches. I wonder if she was not expressing herself accurately, and meant that she wants to stop the itching.
I picked at my scabs too, though only from injuries that scabbed over themselves, I didn't claw at mosquito bites until there was a scab. The problem is that after the scab is off, she keeps digging. Most of the wounds are getting bigger over time, not smaller.
We did try the liquid bandage stuff. It helped in the sense that it prevented her from picking at it as much as she wanted to, but it's not feasible in the long-term because she absolutely hated having it put on, and it takes a few minutes to dry. It was a two-person job to pin all four limbs and blow on the various sites until they all dried sufficiently, which means it could only be applied once a day at best. On the upside, I have gotten her to stop picking a few times by threatening to "paint her owies" again.
At least she has figured out that she can get away with more picking on her arms and legs, if she'll just leave the one on her face alone. We also have some small hope in the fact that it's finally getting cold here, and when she has jeans and sneakers on she can't get to half her scabs all day long. She can push her long sleeves up, but if they have snug cuffs she can't get them high enough to get to the ones on her upper arms (and she hasn't figured out she could reach down through the neckhole yet.) I can live with the forearms, if she'll just let her face and her feet heal.
Sorry the liquid bandage didn't work well. At least it gave you threat material. :p:
I think the key might be to avoid having a site she is tempted to pick or scratch in the first place. I'm hoping next year that if I get the Therapik I mentioned, it helps stop the cycle from starting again with my daughter. Stop those bug bites from itching in the first place and there might not be scratching.
We started the liquid bandage thing in early August, and the wounds healed for the most part by the first day of school in early September, and now, a month later, she still has multiple scars where she had dug deep holes into her skin from the picking. They look pretty bad. I hope they fade with age. She's only 13 and hopefully her skin can still regenerate a bit. She doesn't care much about her looks yet, but I know that will probably change pretty soon.
That skinpicking thing is something I still do. Have done since I was around 3. It is an absolute compulsion and probably a large part of the reason my eczema infects so often. I have mulled over seeking help with it for years, but it is coupled with a slight revulsion or expectation of revulsion in others, so never have. Just something I try to not be seen doing.
The worst possible thing to do is treat it like aberrant behaviour and draw attention to it. Difficult, given you also want to try and avert the behaviour. My parents mishandled it, not that I'd ever tell them that :P Their response was to pointedly draw my attention to how it looked when I did it and tell me off in an attempt to stop me doing it. Instead it just sent it into a secret behaviour and probably escalated it considerably.
Bless them they were doing their best.
That's not why I came in here though :
Saw this on the BBC site and thought of you guys. Brilliant idea.
http://www.bbc.co.uk/blogs/ouch/2012/10/relaxed_performances_making_th.html
The foyer of the Cottesloe at the National Theatre is buzzing when I arrive, as groups of disabled and non-disabled people bustle about, organising tickets and purchasing drinks. We are all here to see a dramatized version of Mark Haddon's highly successful 2003 book, The Curious Incident of the Dog in the Night-time.
The sell-out play tells the story of 15 year old Christopher Boone who has Asperger's syndrome, an autistic spectrum disorder. Those with the condition are typically high functioning, can have social difficulties and are often very sensitive to light and sounds.
The author of the original text did not have Asperger's and neither do any of the actors, but today, many in the audience have autism or a learning disability of some kind. I am at what's known as a "relaxed performance", which is summarised on the National Theatre's own website in a very friendly and inviting manner: "The atmosphere in the auditorium will be relaxed to provide a more supportive environment - a bit like the quiet carriage on the train ... but the opposite! Audience members will be free to come and go as they please throughout the performance and make noise if they want to."
Relaxed performances at other theatres have had a chill out room where people who need quiet time can go before, during or after the show. Some even relay the play on a big screen, so that if someone needs to leave the auditorium they can still follow the story. Today, the Cottesloe foyer has been designated as a quiet space.
To prepare audience members with autism who find surprises uncomfortable, a letter was sent out in the weeks leading up to the performance. It reassuringly explains precisely what we can expect from the day, including at what time we can enter the auditorium, when the show will start, how long it will be and the length of the interval.
all theatre-goers will have received "visual stories" or storyboards, a couple of weeks before this relaxed performance, so that they already know the narrative and feel prepared for each bit as it comes along.
In Austin there is a movie theatre that has monthly "Sensory Friendly Films" events, showing whatever kid movie is out at the time. They keep the lights up, the volume down, let everyone bring their special diet food into the theatre, and don't care if anyone has a meltdown. It's a pretty neat thing.
Re: the skin thing, our current half-solution when we see her picking is to get her attention, start picking our own skin, and let her tell us "No, no!" She thinks reversals of authority like this are hysterical in general, and it's usually enough to temporarily distract her, if only for a few minutes.
That is brilliant. I have 2 pickers in class this year. I never saw it before.
That is brilliant. I have 2 pickers in class this year. I never saw it before.
These two?
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Why can't they be both?
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The American Academy of Pediatrics has pulled a complete about-face this month, releasing a 200-page special supplement on medical treatment for autism in the November issue of
Pediatrics.
Only the first part is available online so far:
Despite the magnitude of these issues, potential GI problems are not routinely considered in ASD evaluations. This likely reflects several factors, including variability in reported rates of GI disorders, controversies regarding the relationship between GI symptoms and the putative causes of autism, the limited verbal capacity of many ASD patients, and the lack of recognition by clinicians that certain behavioral manifestations in children with ASDs are indicators of GI problems (eg, pain, discomfort, or nausea).4–10
Biomedical doctors who have access to the entire article have posted other potent excerpts online:
“Gut-brain connection, immune function, and genome-microbiome interaction.”
“Increasingly, evidence supports a combination of changes in gut microflora, intestinal permeability, inappropriate immune response, activation of specific metabolic pathways, and behavioral changes.”
“Endoscopic analyses of children with ASD and GI symptoms have revealed the presence of a subtle, diffuse inflammation of the intestinal tract.”
“Autoimmune responses in children with ASDs and a familial history of autoimmunity have been reported.”
“Autoantibodies could indicate the presence of inflammatory processes and/or an autoimmune component that could affect the integrity of the mucosal barrier and contribute to decreased mucosal barrier integrity.”
“Leaky gut.” [You guys don't understand, the AA-fucking-P actually used the phrase "leaky gut," in a sentence that didn't also involve the word charlatan. This is huge. Insane.]
“Nutritional status and nutrient intake are inextricably related in children with autism.”
A table on “Biomarkers as potential outcome measures” includes testing for: intestinal permeability to assess leaky gut, calprotectin for intestinal inflammation, celiac disease serology tests to assess gluten sensitivity, food allergy panels, organic acid testing for B12 or folate deficiency, and analysis of gut microbiota.
The messageboards and blogs have been lighting up like a Christmas tree one by one, as news of this has spread.
Do you get to send them a big letter that says "I TOLD YOU SO!"?
What might this mean for the minifobs? Do you think new treatment plans might be developed or refined in the next few years?
It won't mean anything for the fobs, to be honest. The treatments have been under active development for over 30 years in some cases. The parents who want them are able to seek out the right doctors to get them; it's a question of convincing people that this is the treatment path to take, and getting average, insurance-taking doctors to order the tests for those who can't afford to travel and pay out-of-pocket for the visit until the insurance can reimburse them.
It does mean our GI doctor's medical license is that much safer, and maybe we won't have to speak in code so much. Like right now, I can tell him that a medication "worked" because there was an improvement in cognition or other neurological symptoms, and we can base further decisions on that, but he will always throw in a quick "and stools were improved a little too, right?" so that he can put it in the file as if we are still treating solely an unrelated GI disease. Similarly, every single child he sees must receive a full scope before he will treat them, even though he knows with complete certainty what he will find. He needs the scope data to prove that each of his patients has a real GI disease, and the fact that they all also have autism can be written off as a curious sidenote, if need be. Perhaps in the future he will feel safe enough to treat patients right off the bat, without all the CYA. I don't know how close he is to publishing his more recent data (including our own biopsies and pill cam images,) but I'd like to see him get a Nobel prize.
The real place for improvement is in early detection. If they can figure out which biomarkers show up first, and what ranges indicate that worse things are likely in store, they could add them to the list of basic blood screenings that every newborn gets. I do think we could reach a time in as little as 5 years when every newborn has a stool culture done to examine their gut flora, and more refined probiotic prescriptions can be developed with the most therapeutic blend of species. (Of course, correcting the mother's diet would also go a long way towards correcting this problem before it starts, but let's be honest, she's just going to give her baby a probiotic supplement instead.)
Mars' annual review last week.
First time I heard of his bowel problems.
Ongoing, says Mum.
She asked him on a Saturday when was the last time he had been, he said he had "felt something on Wednesday but was too busy playing" so he held it until the weekend.
I hadn't been aware of this previously. Not sure how this ties in with what you have experienced but he is definitely autistic (and in a more obvious way than Tiger) and also not on a restricted diet.
Its about time. Good to get the vindication though, eh?
Sundae - constipation is just as bad of a GI symptom as diarrhea. He should be going once every day, and the further he waits in between, the worse it is. (One of the sad things is that many parents of autistic kids don't even know how bad off their kids are because they themselves have less than ideal digestion, and assume it must be normal.)
Its about time. Good to get the vindication though, eh?
It'll be better when they vindicate Wakefield.
When will the silly AA of P learn not to question Clodfobble's brain? :smack:
And now, the sad conversations and regrets have to start. A mom I've known on the Autism Society (not biomedical) board for four years now emailed me yesterday, and said that now that "the science is in" she's ready to try out one of these diet things. "Now I know your secret! LOL!" she says.
Yeah, I was pretty fucking loudmouthed about my secret this whole time, as you can imagine. The whole email had that same outwardly-laughing-inwardly-sobbing vibe, because her son is 8 now. The window is pretty much closed. He will make dramatic improvement, yes. But she can't expect a miracle at this point, and she knows that.
Still, her email was easier to read and respond to than the handful of public posts from older parents basically saying, "fuck it, it's too late for us now anyway. Who's up for McDonald's, amiright?"
Clod, you tried. You explained. They did not listen. Sins of the parents being visited on innocent children, I know, but try not to take it too hard.
It is very hard for parents to ignore the "experts", so when experts are married to an idea that is bound up in ego or profit the child isn't served. That said, parents need to know that this is the fight of a life and in such a fight no weapon should be set aside.
I am tired.
Kids had their two-year colonoscopies yesterday. Minifobette's internals are significantly better. Not completely in remission, but at least halfway there, maybe more.
Minifob's, on the other hand, can only generously be called as bad as they were before. He has somewhat less inflammation in places, but also some new ulcers that were never there before, as well as new damage in his esophagus which was unaffected last time we looked at it two years ago. The damage has moved, certainly; whether it is greater than before or just different is hard to quantify.
The thing is, I know for certain that if we had happened to scope him one year ago, he would have been comparable to his sister. Entocort is his miracle drug, but we had to go off it a year ago in favor of immune suppressors which wouldn't have as many long term side effects as the Entocort, and things have been sliding downward ever since. And not just behaviorally, we're talking real Flowers for Algernon shit here: there are major things that he could do the first few months in Kindergarten that he can't do anymore. Last year he never even met his nominally-assigned special ed resource teacher. This year he was pulled out of class at least once a week, either because he couldn't cope or because the gen. ed. teacher couldn't cope with him. This part isn't news, of course, we've been living it, and I honestly went in there yesterday expecting his current gut situation to be roughly equivalent to what it was two years ago. I wasn't prepared for the possibility of it being worse, though. Losing ground sucks. Ulcers are bad.
Anyway. Just venting a bit. I'm not upset about it, just tired. I went back and reviewed my notebooks from a year ago, looking for any other things we were doing differently back then besides the Entocort. I did find a few things with some small promise, so I'll be making adjustments accordingly, on the off-chance that they were contributing more than we thought they were at the time. In a few weeks we'll have the followup with the GI doctor and find out what he wants to change, if there's anything we can change. I know there's at least one other immune suppressor option that we might be able to switch to, so maybe it will work better. Maybe he'll want to put him on daily pain meds--these also have their share of long-term side effects, but Minifob did do fantastic right after he got an ibuprofen IV in the hospital last March. I dunno.
But Minifobette is rocking it, at least. She sat there plateaued for so long, I suppose it's only fair that she finally have her day to shine in the sun while her brother lags.
I can only imagine how tired you must be. You really impress me with how you keep on chugging along. I've said it before, but you are an amazing parent. Your kids are so fortunate to have you.
@Clod
Are there any biologicals that might help? CD and UC types have Remicaid and Humira. Anything like that for Minifob?
Recurring IV treatments are an option, but obviously not preferable for a 7-year-old. There is also the issue of getting insurance coverage for them, because it can be proven that what he has is definitively not Crohn's. It's a mostly undescribed thing which only barely exists in the medical literature--at least without Andrew Wakefield's name attached--as of early this year. Insurance may not want to pay $20,000 a year for "unspecified enterocolitis," until enough studies have proven that it responds to the drugs the same as other autoimmune conditions.
We were actually on a path to getting him covered for generic IVIG a couple years ago, but then the only local clinic that would do it based on an outside doctor's prescription stopped offering it. You have to get their internal doctor to order it, and the internal doctors know nothing about autism.
Aye. There's the rub.
Remicaid is humongously expensive. My gastro convinced the HMO it was pay now or pay more later.
Has mini seen a gastro?
Sorry to hear this, Clod. It's a long road. I still look for possibilities/assistance/solutions for my autistic spectrum son. I'm glad there are a few things you've picked up from your notebook to focus on, though.
Has mini seen a gastro?
Yeah, otherwise that guy who gave him a colonoscopy yesterday would have a lot of explaining to do. :)
:( Is there somebody we can kill or something?
Nah. I'm doing okay, really. It's just one of those things that can never be strictly forward progress, and we have to A.) accept that, and B.) stay vigilant.
I'd say I stay sane with the help of wine, but actually, it's cookies.:kettle: (Closest thing I could find to a cookie icon. Some might say the donut is closer, but I don't like donuts. I do, however, like tea.)
I am very sad, Clodfobble.
So, I finally took the plunge.
Remember back when I went to the hospital with meningitis and they gave me a shit ton of Vancomycin until they could confirm that it wasn't bacterial after all? Well, my digestion has been even more screwed up than usual since then, though I always take an intense dose of probiotics every morning. Meanwhile, the kids have been expanding their diets more and more as they are able to tolerate new things, and we are right about at that point where I could start making one meal for the whole family again, if we were willing to.
So I went ahead and started eating on my kids' special diet. It's been one week now, and I feel fucking fantastic. The cravings for sugar/carbs were moderately intense for the first two days, but I just kept myself distracted and out of the kitchen at all costs. If I got bored, I knew I would eat. Watched several marathon sessions of Breaking Bad to run down the hours.
The evening of the second day and all through the third, I farted constantly, at least once every few minutes the entire time. On the fourth day I realized that I hadn't taken an afternoon nap since I'd started, hadn't even yawned. Also, the constant cycle of depressive thoughts in the background was magically gone. Meanwhile, digestive symptoms are much improved, though definitely not perfect yet.
I'll admit, I don't know yet if I'm going to stay hardcore on it forever. But I'm finding it a lot easier than I thought I would, after those first two rough days.
That is really cool. I should probably get serious about my eating again.
Yeah, eating a mostly non-processed, whole food diet is essential for good health...mental and physical. It does take a while to eliminate all the 'junk' , but once you do, you don't really miss it all that much. And really, you can still partake, just not as often and in much smaller doses.
It's so frustrating how predictable our roller coaster is.
The GI doc said Minifob could go back on Entocort. Yay! Massive improvement across the board. Everyone is happy.
Minifob finished his 3 months of Entocort. Boo! Everyone is sad. Within just two days his teacher emailed me, asking for a conference about major behavioral shifts.
We are very close to considering anxiety meds. It's so frustrating because we know, without a doubt, that the symptoms are because of his gut. But the meds for his gut cause major long-term problems, and the doc won't let us stay on them. We're not even getting to put a bandaid on the symptoms at tier 1, we're having to do it up at tier 2.
Anyone here have any experience with Clonidine? We haven't had an appointment with the psych yet, but that's one of the frontrunners among my friends with kids on the spectrum.
Clodfobble, I am a COMPLETE AMATEUR in this area, but I wonder if you've done any reading about the idea of a
poop transplant. Not a joke. I'll look for a reputable cite, but in the meantime, I'm interested in your opinion.
eta: found and added link that I'd read.
Clonidine was one of the few meds that weren't tried with my second son. I'm sorry things are a roller-coaster - it does seem to go that way. But Entocort does involve the risks your doc is concerned about. Besides the bone and joint and other issues, it's an immunosuppressant. I hope you get some good suggestions from the psych visit.
Not worried about the immunosuppressive aspect, since the med the doc would rather he stay on long-term instead is methotrexate. But the bone and joint thing, yeah, that's the thing he keeps warning me about.
V, we have not only considered a fecal transplant, I have a donor sample in my freezer (closed within several layers of packaging.) I am scared to use it though, because there is just no telling what is in it. The doctor is on favor of them in general, but he warned there could also be a major adverse immune response.
Having it done at a medical facility would allow for lab culture of the sample to rule out C. diff, pathogenic enterococci, parasites, Giardia, etc. prior to the actual procedure. I wouldn't use an untested sample.
Sorry about the roller coaster Clod. Any new meds on the horizon?
Not worried about the immunosuppressive aspect, since the med the doc would rather he stay on long-term instead is methotrexate. But the bone and joint thing, yeah, that's the thing he keeps warning me about.
V, we have not only considered a fecal transplant, I have a donor sample in my freezer (closed within several layers of packaging.) I am scared to use it though, because there is just no telling what is in it. The doctor is on favor of them in general, but he warned there could also be a major adverse immune response.
Do you know the donor? Perhaps it's you or a member of your family. The reason I ask is that I also recently heard of a way to scan the *ahem* contents of the sample. There's an outfit called the
American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report. Here's
the story I heard on NPR. It went into great detail about the kinds of flora found and the relative proportions, etc. I don't know what kinds of unknowns you're worried about, but perhaps this link could help you reduce the number of unknowns.
As for the major adverse immune response, I am in no position to argue with your doctor through you. But this thread's *always* been about gut flora and these ideas I hear about always remind me of you and the little Fobs. There was great skepticism on the part of some patients and some doctors, unsurprisingly. But for those that had success, their testimonials border on rapturous.
Lots of gut talk out there. I saw
this earlier on rheumatoid arthritis.
Having it done at a medical facility would allow for lab culture of the sample to rule out C. diff, pathogenic enterococci, parasites, Giardia, etc. prior to the actual procedure. I wouldn't use an untested sample.
Can't be done at a medical facility anymore. After the procedure gained a little attention, the FDA made a quick ruling maybe 6-12 months ago that donor stool was "medicine" and therefore under a whole different set of rules. Effectively the only way the doctor can do it right now is if they use their own stool, and that opens them up to a whole different realm of liability. This isn't permanent, it's just a temporary stay while they figure out how they're going to regulate this thing, but for right now it's do-it-yourself, or nothing.
Do you know the donor? Perhaps it's you or a member of your family. The reason I ask is that I also recently heard of a way to scan the *ahem* contents of the sample. There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report.
It is a member of my family, but by marriage only. I figured that anyone connected to my genes was suspect. Too much history of digestive disease on all sides of our families. Plus, she was born in a foreign country and ate a non-Western diet for the first part of her life, so her bacteria are in theory going to be much more varied and healthy. I appreciate the link greatly; so far the only places I knew to get the stool tested required a doctor's prescription, which would require my relative to become a patient of that doctor, and the doctor to be on board with what we were doing, etc. I will send a sample off to them, so at least I will know for sure if I can rule it out or keep hanging onto it.
Any new meds on the horizon?
Nothing that we know of, other than the untested gamut of psych meds. Potentially we could switch from Methotrexate to 6MP, but there's no reason to think it will work any better, they function very similarly and the only reason people choose one over the other is if they are experiencing significant side effects for whatever reason.
There's this other insane thing I've started doing, because I'm willing to try anything at this point, and that's re-capping all his meds. Most pills come in a plant cellulose capsule, which is a polysaccharide and thus not allowed on his diet, but the general agreement is that the benefit of the meds outweighs the detriment of the capsule. But he takes an awful lot of pills when you add them all up. And they DO make gelatin capsules that you can buy in bags of 1000 online for very cheap. So I opened all his pills this week and poured the contents into empty gelatin capsules. Won't really know if it's helping for another few days, but it's a damn lot of work.
There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report.
Ah, I read through it a bit more. $99 is just for bacteria (though very thorough in that regard.) If you want to expand the information to include potential parasites, viruses, or fungal infections, it's $2,500.
Update from the doc appointment today: we are going to try switching to 6MP after all. This is an especially good time to do it because for years now, one lab called Prometheus has held the patent on the blood test to determine how much of the medication is circulating in your system, which is necessary to safely use the drug. They have been bastards and were charging $700ish for the test, which often must be done several months in a row and was not usually covered by insurance. But apparently over the summer one of the unpublicized cases the Supreme Court heard was the Mayo Clinic suing Prometheus over this monopolizing behavior, and the Mayo Clinic won. So now you can get the test done for a reasonable fee and covered by insurance. This wasn't something that was keeping us off the drug prior to this, but it does make it easier to try now.
But in less optimistic news, Minifob has again lost weight. The doctor said we are now officially on the lookout for
wasting syndrome. He was quick to say that Minifob in no way qualifies for the diagnosis yet, but he is nonetheless falling further and further behind the standard growth chart, despite taking in 150% of the daily calories a 7-year-old is supposed to consume, and it is especially concerning given that he just came off three months of steroids and should have been aggressively gaining, if anything.
But he said there have been some patients that start taking 6MP and just sprout like a weed, so with any luck that will be us too.
Good luck with the 6MP. I hope he grows like a weed.
We feel your pain with the weightloss :( Goalie Boy weighed less than at his growth eval 4 months ago. but he eats like your standard teenage swimmer/hockey player -it's not reduced proportional to his size. He can pack away a whole pizza as a snack :(
Thought I'd tuck
this in here. It seems mainstream science is catching up to cellar science.
I assume you has seen this, but just in case not....
http://time.com/3683475/autism-siblings-study/
Wondering how it's all going with you guys.
I'm headed off to train for my new job on Weds, and I'm told the woman I will be working with is a whizz at gluten -free baking -learned she had celiacs/similar so went to some sort of chef school to learn how to bake but insisted on making everything gluten-free. Will report back if I learn anything interesting.
Yeah, I saw that. One step closer to them acknowledging that the genetic damage comes after conception, and is thus... dun dun dun... environmental.
As for how it's all going with us, it's going fantastic. "They say" (i.e., the general anecdotal reports on messageboards) that SCD takes 1-2 years for ulcerative colitis, 2-3 years for Crohn's, and 3-4 years for autism to achieve complete remission. Minifobette is a couple weeks shy of her 4 year anniversary, while Minifob is close to 3, but both have had a few small accidental exposures along the way.
At their last scope (18 months ago,) Minifobette was about 85% in remission, and Minifob had shown only minimal improvement, with outward symptoms to match in both. Nowadays Minifobette is outwardly recovered, with a few slight speech odditites as if she learned English as a second language (meanwhile, however, her teachers say she is picking up Spanish at a ridiculous rate, indeed as if she had already learned a second language and was working on her third.)
Minifob, on the other hand, has been massively improved for about 3 weeks now, since starting a new med that focuses on GI histamine dumping. Haven't had a single meltdown in those three weeks, and he has finally started making some progress on controlling his overwhelming stutter.
Just today in fact, my plan is to email his doctor and tell him that we want to try weaning off the immune suppressor and see if he can hold steady with this new med instead. We shall see.
oooh.... I remember reading something about drumming and rhythmic activities helping people overcome stutters -is it coincidental that minifob took up the drums or not?
And now I type this, I'm reminded of the kid -Musharaf- in Educating Yorkshire who taps out the rhythm of the words with his hand to help
Not sure how quickly this particular clip gets to the appropriate point
[youtube]cWeKiZS-dxM[/youtube]
Coincidental--he's only had one lesson, last Wednesday, and the stutter improvements started a few weeks before that. He does still stutter all the time, it's just that now when we give him a reminder to "chunk" the sentence, he can actually stop and do that, whereas before he would try and still get stuck by the second or third word.
There's been some really interesting work on teaching brain injured people to speak again using song lyrics instead of sentences. They can't say "I want soup for lunch" but they can sing it. The brain is so weird.
They can't say "I want soup for lunch" but they can sing it. The brain is so weird.
There have been some utterly amazing things accomplished for TBI's with music as well. Yes, some with stuttering too. Many with Aphasia have been helped by music therapy also.
Music is how we knew Daniel started talking after his surgery. The radio was playing a song he knew and he started singing it. Before that it was only a word or two here or there.
snip--
There's been some really interesting work on teaching brain injured people to speak again using song lyrics instead of sentences. They can't say "I want soup for lunch" but they can sing it. The brain is so weird.
Another vote for "The brain is so weird." here. My Mom had a stroke years ago, a serious stroke and has been paralyzed on her right side since. Also, she has aphasia, rendering her vocabulary to "gunna gunna" and every emotional tone and inflection possible for that word. But no actual english words.
Surprisingly, she can hum, "sing" (aaahhh, aah, aaaaahhhhh) songs, no lyrics, but she can definitely carry a tune. The weirdness of her brain has been revealed by the removal of the part that granted her speech.
The brain is so weird.
ain't that the truth
Mine isn't weird... it told me so, didn't you HAL. :blush:
OMG.
YOU GUYS.
I wrote a memoir. Finished it last October, been querying agents ever since. The way the publishing industry works, you have to send a query letter first, which is equivalent to an elevator pitch, and only then will they decide if they're interested enough to ask for pages of the actual manuscript to read. After a total of 20 rejections and 18 non-responses, plus another 10 that are still within the "maybe we haven't officially ignored you yet but we're not telling" timeframe... someone finally asked for the manuscript! And not just anyone, but a big name at a major firm. Still, this was only one tiny step forward, since agents may actually only select as few as 1 out of 20 manuscripts they request.
Then yesterday morning, less than 12 hours after my super depressing night on the comedy stage, she emailed back to say she loved the book and wanted to represent it. Papers signed today. With any luck, a publisher will agree it's awesome, and you'll be able to find the saga of this thread in a real freaking bookstore in like... another 18 months, minimum.
For serious, I'm an author, y'all. (Almost.) Hell of a way to take the sting out of Tuesday night. :)
Wow. Clod! That's so frikkin awsome.
WTG!!!
I want my copy signed too! The rest of you punks can get in line, behind me.
I want a signed copy also. When your on your book tour.
Excellent, I'm sure it's a good read. :notworthy
Put the picture on the couch from college on the dust jacket. You'll sell a million.
Ha! "As you can see from this photo, the psychological problems go back at least one generation..."
Thanks you guys. If I do get to do some kind of signing tour someday, you better believe I will be calling out dwellars in every city I get to go to.
Tour? I suppose it would be impossible to put more of a strain on your marriage at this point. ;)
WTG!
Sent by thought transference
Will you sign my copy?
Meeee toooo!
I remember her when she was only imaginary...
Don't forget us little people when you are famous!
I remember her when she was only imaginary...!
You're a funny guy, you know that?
I will buy a copy. And not just because I know you.
Hope all goes well for this project in the future, but now you know you can get this far then there's nothing you can't do. Although I expect you know that anyway - we did :)
Congrats, Clod. Will you autograph my Kindle?
I'll autograph yo face!
;)
Need suggestions plz...
So my agent (not tired of saying
that yet) thinks that the title needs to be more accessible. There's this classic short essay called "
Welcome to Holland" that every parent with a special needs kid is familiar with, and large parts of the book are tied into this metaphor of Holland vs. Italy, including the current title. But she thinks everyone outside that tight-knit community will be clueless as to the meaning and might genuinely mistake it for a travel memoir, and that even if I could talk her into it a publisher will definitely insist on changing it. I accept her expertise in this area, but so far we have not been able to come up with a new title that is suitably artsy-slash-intriguing but also refers accurately to the tone of the book. Because there are tons of sappy options out there like "Searching For..." and "Saving..." and crap like that, but it's not a sappy book, it's very much a defiant and funny and irreverent book, and I'd rather a stupid literal title like "How I Did This Thing" than some wistful acceptance bullshit.
As an example, one of my favorite suggestions so far was "Hysterically Impaired," which is actually a direct quote from the book, but it sounds a little too much like mockery without any context. Gotta ride that edge a little safer.
Any ideas?
I like the title of this thread. Says it all. But I'm no marketer.
Something like, Dogs Raising cats?
Mass hysteria!
[YOUTUBE]JmzuRXLzqKk[/YOUTUBE]
Wishing upon a star and finding the aurora borealis
Moming the Spectrum... you know it don't come easy.
My kid is a damn nutter/nutcase/
How not to stab your own eyes out
These three simple things will make your child's autism disappear -- but the medical profession doesn't want you to know them!
^ mucho clicks with that last one. I'll take .005 dollars per click as my fee.
Sprite for Breakfast
(... and other things you miss, raising autistic children)
The best title ever for such a book,imo, was 'The Reason I Jump'.
So - maybe think of a behaviour / quirk that says something about the way autism manifests in your kids.
Maybe 'Drawing with Crayons'
Or - Adventures in Autism: one family's extraordinary journey.
The Autism Trail (playing on the idea of a physical journey through difficult medical and educational territory)
Clinics and Coconut Flour
+1 for "My Kid Is A Damn Nutter", catchy and provocative and you can spell out the details in the subtitle.
The Autism spectrum - fighting to find the end of the rainbow
"My Kid Is A Damn Nutter" ...
totally gets my vote. It leave one inquisitive and wanting answers = WIN.
Anything with Autism is great if thats the ONLY group you want to reach.
Where do I preorder my signed copy? (serious)
There is no cheese in nutville
the mighty Casein has struck out.
in the style of f3
Mama Strangelove or: How I Learned to Stop Worrying and Love the Betel Nut
MKIADN is a great title. And classic's right - autism in the main title will get people with a specific interest in autism but might not draw in others.
Heh.
The problem with that title is, most parents of children with autism are not known for having great senses of humor. They're touchy mama bears who are used to everyone misunderstanding and judging them, and if I'm saying my kid is a damn nutter, then I'm saying theirs is too. It might draw in others, but it will decidedly alienate most of the autism population. It's one thing to be funny in context in the book, but that title without context is the equivalent of "All Autistic Kids are Assholes: A Mother's Story."
Anyway, we went with a variation on the original. I don't want to put it here because I don't want this thread to be particularly google-able, but I'm confident you'll see it someday. Three publishers currently reading the manuscript. :thumbsup:
Damn, that's exciting stuff!
I forgot - I was going to post the title of an excellent book I read, written by parents of an autistic child.
"A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces "
A moot point now, and wouldn't have helped you anyway, as it's a very generic title.
Good book though. Made me laugh and loud and cry quite bitterly.
I don't want to put it here because I don't want this thread to be particularly google-able
U R SMRT
The last thing you need is to to have book readers come here and hound you, and then you would stop coming around, and we'd miss you.
yay! Good point Clod, I can relate - I still get a little extra touchy about TBI's ...
U R SMRT
The last thing you need is to to have book readers come here and hound you, and then you would stop coming around, and we'd have to send out a hit squad to get rid of them.
From ScienceDaily:
Missing Link Found Between Brain and Immune System
In a stunning discovery that overturns decades of textbook teaching, researchers have determined that the brain is directly connected to the immune system by vessels previously thought not to exist.
Kevin Lee, PhD, chairman of the UVA Department of Neuroscience, described his reaction to the discovery by Kipnis' lab: "The first time these guys showed me the basic result, I just said one sentence: 'They'll have to change the textbooks.' There has never been a lymphatic system for the central nervous system, and it was very clear from that first singular observation -- and they've done many studies since then to bolster the finding -- that it will fundamentally change the way people look at the central nervous system's relationship with the immune system."
The unexpected presence of the lymphatic vessels raises a tremendous number of questions that now need answers, both about the workings of the brain and the diseases that plague it. For example, take Alzheimer's disease. "In Alzheimer's, there are accumulations of big protein chunks in the brain," Kipnis said. "We think they may be accumulating in the brain because they're not being efficiently removed by these vessels." He noted that the vessels look different with age, so the role they play in aging is another avenue to explore. And there's an enormous array of other neurological diseases, from autism to multiple sclerosis, that must be reconsidered in light of the presence of something science insisted did not exist.
How is it possible that "they" missed these vessels before? Surely during the millions of surgeries and autopsies and imaging done over the centuries somebody would have noticed this lymphatic connection?
Didn't 'they' recently find some 'new' bones, too?
As to how the brain's lymphatic vessels managed to escape notice all this time, Kipnis described them as "very well hidden" and noted that they follow a major blood vessel down into the sinuses, an area difficult to image. "It's so close to the blood vessel, you just miss it," he said. "If you don't know what you're after, you just miss it."
In other news, I have a phone call with an interested publisher this morning...
Happening fast, real interest, go go gadget writer!
I just realized I never mentioned this, but a couple months ago we got asked to be part of a documentary on autism recovery. They came and filmed at the house for two days, and got permission to shoot at the kids' school, and everything. The movie itself won't be ready until who-knows-when (it was two years between when the filmmaker first contacted me and when he actually got out here to film, so really, don't hold your breaths,) but along the way the guy is putting together little previews of each family that's been interviewed. He just sent me a link to our clip:
[YOUTUBE]I1HyJTCfDIY[/YOUTUBE]
In other news... I officially have a book deal. :) To be released by Da Capo Press in the Spring of 2016.
Wow, Clod. I don't know why, because I like the others here have shared in your trials and successes with your little ones, through your posts -but I felt really choked up watching that.
You guys are awesome. you must be so proud of your kids - they really are gorgeous.
And congrats on the book deal. I cannot think of a nicer person or one more deserving of success.
That's pretty cool! Nice to see you and Mr. Fobble.
We've read the progression over time and your descriptions, but to see the video before and after clips right next to each other is pretty impressive. And that stack of notebooks!
They ARE gorgeous and you guys ARE awesome. Well done.
I saw that, I saw the strawberries touching other stuff. :yesnod:
Thanks, everyone. Your support has meant the world over the years. They will almost certainly send me on a book tour at some point, and I intend to visit as many Dwellar cities as I possibly can. I want a photo with every damn one of you!
I just need to correct you on the last sentence in that clip, "It's beautiful and it's amazing."
Yes.... and no.
What you meant to say (about you and Mr Clod) is "We're beautiful and we're amazing."
Oh and throw the mini-fobs in there too of course, because they are. But because of you.
Thank you always for sharing.
Confession: I've watched our video probably a dozen times now, and for the first time in my life it's really hit me--I have the crazy eyes. My whole life people have described me as intense or otherwise over-the-top, which I've accepted but never really understood because the words coming out of my mouth never seemed that wild to me, but I get it now. It's my giant bug eyes.
It turns out I am the Overly Attached Girlfriend:
*chuckles*
You do not have crazy eyes - or indeed bug eyes, giant or otherwise.
They're expressive, yes... bug, no.
Clodfobble, Mr Fobble
I want you to know that *I* appreciate what you're doing as parents, more than you know, more than I can say. You set a great example of loving diligence and I really want you to know that your efforts *are worth it*.
You're the very picture of those who have had greatness thrust upon them. Good job Mom, Good job Dad.
Aw, thanks man. We all do our best, y'know? At least everyone here does.
Looking forward to seeing/meeting you and your bug eyes... lol
Oh hey by the way I have a book cover and you can
pre-order it if you're into that kind of thing.
Looking forward to seeing/meeting you and your bug eyes... lol
I probably wouldn't notice, I'm used to people being bug-eyed when they interact with me. ;)
Oh hey by the way I have a book cover and you can pre-order it if you're into that kind of thing.
WTF? How dare they use lower case for your name. A travesty, an injustice, this shall not stand!
How can I name drop, my imaginary(online) friend, famous writer lady from Texas, lower case. :smack:
I just pre-ordered, and I can't wait.
Do Kindle pre-orders help?
Sent by thought transference
That was a touching video. It's obvious that you and Mr. Fob are willing to go to the mat for your kids. It's also amazing to see and hear them in comparison to your description here:
http://cellar.org/showpost.php?p=511166&postcount=1
I'm telling my local brick and mortar store to carry it. When you come for the book signing I'll give you a personal tour of the hinterlands.
I admire your preservence. I admire you, actually.
Amazon says April 11th to 15th.
Clodfobble - that is impressive on so many levels and in so many ways.
I'm buying mine now before you get famous and the price goes up.
I just got my first piece of hate mail!
So this guy wrote yesterday:
Hi
Someone sent me a link to your book/site. I was really surprised to see your site contains no easily accessible way to see what the GFCF diet even is, or why people should follow it. Some advice from someone who has been there - get a description or even a link (but that would lose you CPM) up FAST before the book drops so people know what you're talking about. Maybe an excerpt from the book, which must contain this information?
Best of luck with your book.
I assumed he was a "give me money and I'll help you promote your site" guy, because I get those on a fairly regular basis. But it was at least personalized instead of generic, so I wrote back:
Hi J,
Well the truth is, we've moved beyond the GFCF diet, as detailed in this post here:
http://www.thegfcflady.com/2013/12/02/my-mayonnaise-confession/
The book does contain a little information about the GFCF diet, but only as one step on our journey. I'm very much not about telling other people what they should do, or trying to convince them of anything. I just don't have the stomach for it. The memoir really is about the whole story, not just one (of several) diets we did. But rest assured, there will be an excerpt posted on www.goodreads.com soon, as well as on other major news outlets. The publisher has whole marketing teams to take care of that. Thanks for your suggestions, and I hope you like the book!
Jennifer
And then... things escalated quickly.
Whole marketing teams! My goodness!
Oh, I have no intention of reading it. I was just curious as to how someone would proclaim herself "The X Lady" with a website and a supporting book, yet never bother to describe what the hell the X is and why one would have, or not, tried it. You further confuse the reader by not making it clear that you have currently sidestepped away from the quackery of your book. Because if it weren't quackery, you'd still be following it...right? I will, instead of looking for it on Goodreads, instead look for it on Quackwatch.com. I'd bet $10 you're an anti-vaxxer, too. Oh, and I might be blogging about it, too.
Blocking your email, you parasitic pathogen.
Yeah. I'm blocking you on the Cellar too, Clod.
Because nothing you've written has been intelligent, or considered, or insightful or interesting. Oh, and I've never read any of your posts. You quacker.
PS, well done you for not including any of his details - there are some people here who would get offensive on him otherwise. No, not me. Ahem. No of course not. (Stupid arsehole)
I am receiving the book as a gift, which is putting someone else's money where my mouth is, but I can't wait to read it.
Not sure if I should congratulate you or not.
I have a local writer friend, and she agonizes over comments. I guess you have to. I'd like to think I would ignore them but probably wouldn't.
This one's pretty easy to ignore, because he initially lied about his intentions and thus obviously had a plan to hate me from the beginning. Someone who actually read it, then hated it, I'll have a harder time ignoring. But even then, I know better than to respond. Fools arguing, and all that. Honestly, though, it's kind of a good sign that it came so soon, because it means people I really don't know have already heard about it.
They want you to have an emotional reaction, Clod; they are highly charged and they want your emotional devastation. Because this is where we are now; it's
Eternal September and the n00bs do not know how to discuss things. They believe that if they make you feel bad and kill yourself, they have won. They do not know that the problem is within as much as out.
WW3 is a comments section, the war is fought over beliefs and the shells are threats and hatred. And once again we find that the only island of sanity is a small forum populated by people you know, and may actually give a shit about, and who may actually give a shit about you.
I'm actually suspecting that it's from the author of quackwatch himself. That guy's old, and young people don't say things like "quackery," or "which must contain this information" as a question, or think $10 is a lot of money to wager on something.
Congrats! You made the big time! You have your own personal crazy person.
Congrats! You made the big time! You have your own personal crazy person.
*THIS* part made me laugh!
Dear Clodfobble,
I will urge my friends at my local bookstore,
Phinney Books, to carry several copies. The owners are friends of mine, they live four houses down.
I will be placing my instructions with them this week.
CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!
Ran across this article which seems promising in certain situations.
Neuroscientists reverse autism symptoms
Frig it - can't post a link- here is the url
http://medicalxpress.com/news/2016-02-neuroscientists-reverse-autism-symptoms.htmlGene therapy is cool, but it's annoying that they keep saying "autism" when what they mean is "a very specific 1% of autistic individuals and none of the rest of them." They've known about the Shank3 gene for a long time, just like they know about Fragile X. It's basically considered its own disorder: when participating in a research study, they will ask you at the beginning if you've ever been diagnosed with Fragile X, Shank3, PKU, and a few others, and you'll be disqualified if so.
Gosh, you're pretty smart, you should write a book. :haha:
We have a fragile X lad plays the drums in our brass band.
Sent by thought transference
Great cover!
Also, I know I said this already, but I just want to reiterate that the title is brilliant.
Amazon said April when I ordered, is everything on schedule as far as you know?
Just squeaked in on the pre-orders. I know....
procrastinator and cliffhanger regards....
Also, I know I said this already, but I just want to reiterate that the title is brilliant.
The editor (or someone in his department) came up with it. But I like it too. :)
Amazon said April when I ordered, is everything on schedule as far as you know?
Yes, they sent me a couple advance copies, the rest will be leaving the warehouse tomorrow. Amazon is just playing it safe with their deadline, they may decide to ship them early once they actually have them in their hands, or they may be lazy and make you wait until April.
Yeah, Amazon likes to cover their ass, I get things earlier that predicted much of the time. But it's no problem, I'm going to mail three of them to you for autographs anyway, I don't want to wait for the world tour. :cool:
I tend to like to cover my arse too.
Probably for different reasons.
Yeah, Amazon likes to cover their ass, I get things earlier that predicted much of the time. But it's no problem, I'm going to mail three of them to you for autographs anyway, I don't want to wait for the world tour. :cool:
I'll be sending mine down as well!
Can you sign the Kindle version?
Sure! Just send me your Kindle, and I'll sign every book you'll ever read!
I'm going to mail three of them to you for autographs anyway, I don't want to wait for the world tour.
I'll be sending mine down as well!
Make sure you include a little piece of paper or something in there with your name on it so I don't get them mixed up and forget who gets how many back. :)
sointly, and return postage.
I know I'm late to the party, but I want to reiterate how great the cover looks.
It's a Lumberthumb! Was that early shipping from Amazon, or a local store?
I got it from Amazon today. That is indeed my left thumb.
I hope mine comes soon, I want to read it.
I have just now at this exact moment become terrified that you guys won't like it.
Also, I have a relatively large podcast interview Monday. And so far in the following weeks, a 1-hour major market NPR segment, a rural Virginia morning show, and an interview of as-yet-unknown length with the largest English-speaking radio station in Spain (and who knows how big that is.) More supposedly to come.
Did I say terrified? Hmm.
Are these all remotes?
You have so much more skill here than the average remote-touring author would start with! You already know how to speak well and command a microphone and have a great mic voice. You know how to present what you want to say. You're already tons interesting.
You got dis
(I don't though... I paid MORE for digital delivery and says here it won't happen until Apr 5)
They're all over the phone. The one in Spain may be over Skype, not involving my face but just because apparently the international lines are more reliable that way. Which is good, because all of them are either at 6 or 7 in the morning my time, and my face will not be presentable. I'm told that almost all radio guests, even the ones who sound like they're in the studio, are actually over digital phone lines these days.
What podcast, clod? or can't you say yet?
Was I supposed to read it too? I like it. It's a nice looking book. Why did you cover part of your face on the tiny little picture of the author on the back cover?
Do we know the story behind the scar? And which fob is Andrew?
Andrew is Mr. Clod. The scar story is a chapter in the book.
It's funny, that picture of me is very polarizing... My mom and dad both hate it (which has got to be the first thing they've agreed on in thirty years.) My friends who do a lot of social media all love it. My theory is that because it's weirdly candid and somewhat awkward, that makes it more genuine-seeming to the crowd that does nothing but look at posed pictures of each other all day long. The cropping they did also makes my hand look bigger, in the full picture it wasn't so intrusive.
Dana, I don't know for sure if I'm allowed to say. That one will be recorded and then posted online at a later date in April. The NPR hour should be online for streaming in its entirety shortly after broadcast, though.
I'm rereading this thread before I start the book. Up to page 11, and I have to say.... You are.... Well.... Good. Very very good.
Sad I won't get it before I go away.
But maybe I can pick it up after a few weeks.
I'm told that almost all radio guests, even the ones who sound like they're in the studio, are actually over digital phone lines
Not just the guests. You've heard of the radio duo Opie and Anthony (now defunct). For the last few years of the show, Anthony was doing the show from his house in another state.
In most locations, the only lines that are not digital are the ones in the house. It's analog to connect to the old-style phones, but when they get to the box that connects to the phone network, usually in the basement, it goes digital right through to the destination where a similar conversion can take place.
We just had the "is our kid ADHD" talk with ours. The answer was no, he's just badly behaved...... :lol:
haha. Like Jim, I was rereading the thread and this popped out at me. He's been getting counselling for a while and she's all "duh, classic ADD"
No, you got my book you queue jumper.
Email says shipped yesterday from Swedesboro, NJ, have them by 8PM today.
My first interview has posted. Should be stream-able in all countries, I think.
I was super nervous, which you can tell by my gasp-y breathing, and the fact that I completely railroaded the guy several times, and just kept talking even though he was clearly trying to ask another question. Hopefully I'll get better with practice.
Is that Big Gay Al you're taking to?
I clicked on the link to where it talked about the show, and has the audio bar. When I clicked on the arrow in the circle nothing.
When I clicked on the bar it took me to another page that shows all his programs, and clicking on the arrow in the circle worked.
This maybe an anomaly in my system but if somebody has trouble getting to play, try this.
Hopefully I'll get better with practice.
Don't get too good, listening to someone who is concise and polished raises red flags for me.
You sounded honest, explaining you didn't have "the" answer, nor going to save the world, but trying to contribute what you could to awareness.
In other words, you didn't sound like you were there to sell a book. You done good. :thumb:
aside, you should receive the package on Wednesday.
Also I had to order a couple more from Amazon today, by public demand, but you won't see them.
Just listened to it. You did a great job.
i'm gonna listen to the third one when you're all broken in and stuff :D
Round 2: I talked to
Wisconsin NPR this morning. I still talked too fast, but I kept my answers shorter, at least.
Listening to that program you sounded a little more relaxed, more concise. You can probably predict what they'll ask to some extent, but you never know if the interviewer has an axe to grind or will hit you with off the wall questions, like have to stopped beating your children. You did very well.
While I was listening I was thinking, there's a million parents out there who have tales from experience with coping and attempts to "heal" their kids. But gathering and collating that information would be an impossible task. Facing this challenge pre-internet must have been extremely depressing.
listening to it off an on at work in between stuff. You sound good. Interesting stuff.
I've seen food fads, what to eat/avoid, to live longer/lose weight/bigger boners, since forever. Drink wine, don't drink wine, drink coffee, don't drink coffee, eat shit and die. Vegans/vegetarians? I don't care, what ever blows your skirt up, just don't tell me what to eat. PETA, go fuck yourself.
I knew a woman who would be in serious trouble eating food cooked in a pan that had ever had onions cooked in it, but that was very rare... then food allergies burst on the scene. I thought not letting a kid take a peanut butter sandwich to school, or have cookies in his lunch was pretty stupid.
Sugar, saccharin, trans-fat, then gluten became the devil, but when I saw shampoo advertised as gluten free I figured Mad Men were using the current buzz word to get attention. There again, whatever you want, if avoiding or bingeing on something makes you feel better, even if it's psychological, good for you, it doesn't concern me. If it's secretly killing me, it's got to get in a very long line.
I'm just starting to get my head around how seriously these things affect some people, like the Fobblettes. How gluten in shampoo can be a real threat to someone, and what an incredible job Clodfobble has done in finding/drawing the map to Holland. :smack:
The thing that makes it tough is it truly didn't used to affect hardly anyone. It's the "we've been eating X for hundreds of years" argument. But both the "stuff" and our bodies today are very different. Bread today doesn't equal bread 100 years ago, and my stomach today doesn't equal my great-grandmother's stomach. It's all fucked up.
I worked with a girl a few years ago who had to carry an epi pen with her at all times. We also had one at work in the supervisor's drawer just in case. There were a few things she couldn't have, and one of those things was a kind of chilli flavouring used in crisps. One time she went into full on anaphylactic shock after she kissed her boyfriend when he had eaten spicy crisps earlier that day.
@Clod: forgot to come back in here and let you know how awesome that podcast interview was. You sound so confident and at ease, passionate and knowledgable. It was a really engaging interview.
How were the first week's Sales, Fob?
I don't get complete numbers, but physical books from US Amazon are at about 75 right now. E-books, brick-and-mortar, and UK sales (I did one radio interview in the UK so far,) I have no idea. And I have no idea if 75 is good for week 1 for an unknown author or not. Mostly I try not to bring up the graph a dozen times a day. :)
What radio interview for UK?
Talk Radio Europe, "the largest English-speaking station in Spain." It was 15 min and lightweight--she pulled the quote on the back cover and said "one of my favorite things you said was..." Definitely hadn't read it.
It's okay, she had me on at least. She interviews like four authors every day, she couldn't possibly read them all.
You mention the 1 in 45 statistic in one of those interviews.
I saw it in print today for the first time, so mainstream media is picking it up too. Washington Post, A Section.
Interesting, that says 1 in 45, ages 3 to 17, have it, not 1 in 45 of the children turning 3, have/will have it.
I suppose if it turns out to be genetic based, it can be waiting to be triggered or not yet diagnosed, which seems to be a big problem because of parents in denial and doctors in the dark.
OK, I'm talking out my ass, but I'd never seen the numbers expressed that way.
Yeah, the thing about the 1 in 45 number is the very DAY after I did that interview, the CDC announced that while this is one of their typical benchmark studies for their "official" numbers, they are waiting until the other benchmark studies come out with their latest numbers later this year, before deciding on a new average. So officially it's still 1 in 68 according to the CDC, but that will change in the late fall, I imagine.
Do they have the same stats for non immunized kids?
Congress ordered the CDC to gather those stats in the late nineties, if I have my dates right. The CDC ignored them, claiming that by definition any study that required non-immunized kids, even volunteers, was unethical.
Jenny McCarthy's nonprofit did the study, 100,000 random surveys by phone, found the rate was much lower in non-immunized and much higher in partially-immunized (presumably because in cases where there's an obvious regression parents stop,) but no one listens to her anymore.
It should be noted, however, that the stats for non-immunized kids are not zero.
What age is the oldest you've heard of for symptoms to appear? Or does that get twisted by parents in denial until somebody in the school system runs up a flag?
I've heard of major developmental regressions as late as three-and-a-half. Diagnoses any later than that are usually either "there's nothing wrong with a nonverbal 5 year old" denial, or "he's always been a little different, but we didn't know what it was" at like 12 or 13 or even adulthood for high-functioning kids. I've seen/heard of sudden extreme onset of PANDAS at a variety of ages though, as late as maybe 15.
Saw this in the Guardian and thought it might be of interest:
Asda is introducing a “quiet hour” at a Manchester store to help autistic and disabled shoppers.
The Asda Living store in Cheetham Hill is pioneering a disability-friendly hour for people who feel intimidated or stressed by noise and disturbance.
The store will open an hour early without electronic distractions such as escalators, music and display TVs, and the public address system will not be used for announcements.
http://www.theguardian.com/business/2016/apr/25/manchester-asda-quiet-hour-help-autistic-shoppers
Neat idea?
Could be very helpful for people who need it. Although I predict it will be the elderly who take advantage of it the most.
I'm worn out and trying to force myself to look at the positive things in life today, so excuse me while I gratuitously pat myself on the back for a moment. It's okay, see, because I've been instructed to.
“A MUST READ for 2016! Whether or not you have an autistic child, brother, cousin, whatever… this IS a book you want to get your hands on.”
“There are many unexpected and perfect small moments. This is a writer in command of her story and her prose, and I’d be happy to read her writing on any subject under the sun.”
“The storytelling is amazing, and it’s well worth a read whether this is part of your experience or not.”
“You need to understand that when I marvel at the skill with which ‘No Map to this Country’ engages the reader, draws him into the story, and maintains breathtaking suspense until the very end, all the while effortlessly educating that reader in complex medical discoveries and controversies, this is not the reaction of an easy mark. I am a harsh critic with high standards. If you log onto the back issues of the weekly where I once toiled as a reviewer and type in my name, the first thing to come up will be the letters to the editor written by readers offended by my unflattering evaluations… So when I say that this memoir by first-time author Jennifer Noonan is a dazzling accomplishment, you should understand that I am not blowing smoke.”
Now back to your regularly-scheduled, self-deprecating, unable-to-take-a-compliment Clodfobble.
It's nice to see critics that know what the fuck they're talking about. :thumb:
Congratulations Clodfobble.
I forgot to mention it's in 3 more libraries.
Clobble, you have always given me an intellectual boner. It's been more than 4 hours. I need medical assistance.
I recently learned the word for that: sapiosexual. I like "intellectual boner" better though.
Clobble, you have always given me an intellectual boner. It's been more than 4 hours. I need medical assistance.
I recently learned the word for that: sapiosexual. I like "intellectual boner" better though.
Nice, I needed that word.
Now back to your regularly-scheduled, self-deprecating, unable-to-take-a-compliment Clodfobble.
I hear that chick is pretty awesome.
