The brain is a vicious little bugger
 

I've had a couple of PM's recently asking about Lil Lookout's progress so I figured I'd better get around to updating you all.

I originally took LL to a psychologist because he appeared to be withdrawing from things he enjoyed and his emotions were touchy at best. He hovered between sad and angry most of the time and there was evidence that he was processing external stimuli in completely incorrect ways.

We met with a child specialist I've known and trusted for some years. Parents, grandparents, and teachers all filled out the surveys to describe his behavior and the results were amazing. LL scored off the charts in Anxiety and Depression and scored highly in all the other areas of concern as well. While a history of depression runs in my family the doctor pointed out that LL's results were nearly textbook ADHD. I pointed out that he's never hyper, at which point I learned a kid doesn't have to be hyper to be ADHD. The doctor also asked us to take LL off Singular, which he's been on to control his severe allergies which can trigger his asthma. He'd been taking Singular since he was 3 or 4.

The biggest question mark was whether his anxiety and depression were causing ADHD like results or whether his ADHD was causing elevated anxiety and depression. We set several follow up appointments for counselling and just kept moving along.

Within two weeks we had a totally different child. The singular was flushed out and it became apparent that the depressive tendencies of singular had suppressed a lot. LL is extremely hyper. He can't sit still long enough to even eat a bowl of cereal. He couldn't even hold a clear conversation without chasing tangents. His emotions were just running rampant. He'd go from laughing to sobbing to screaming and back to happy in the space of twenty minutes.

After talking with the psychologist we decided it was time for medication, at least until he has time to learn some coping techniques. We went to the pediatrician with the formal diagnosis and reports. He laughed it off and said everybody is a little ADHD, "just get him exercising more". He's not our pediatrician anymore. We went to a well known practice that only deals with ADHD. They ran every test and survey known to man and came to the same conclusion we already had plus one more concern. Oppositional Defiant Disorder. WTF? They said it was a possibility and something worth monitoring.

LL has been on his medication for two months now with minor tinkering for the proper dose for him. First it was too low, then too high, now we're doing pretty well in the middle. While more hyper and fidgety than he used to be, he is miles ahead of where he was before the medication. He can focus well enough to stay on task with only gentle reminders and we can actually have conversations again.

The downside is that while the focus part of the problem seems to be improving other areas are getting worse. Suddenly the kid is tanking at school, he's developing a mean streak, there is absolutely nothing too small for him to want to argue about, and he is still on an emotional pendulum. His most recent test results combined with counselling sessions have raised a new question. The symptoms he is now presenting are very very consistent with Bipolar Disorder. They don't diagnose that at this age but he is on the grid for that. The psychologist and the ADHD specialist are not connected by anything other than this patient but they agree on what they are seeing.

Either LL has ADHD with severe oppositional defiant disorder combined or he has brain chemistry consistent with Bipolar Disorder. Either way he is pretty well fucked right now. I almost long for the days when he was on singular. He may have been depressed but everything else was in check.

Anyway, that's my update.

Oh, Lookout! How very hard for you! I wish you and your family the strength to cope with this.

:(

I feel for you, lookout. Keep fighting the good fight. You love him, and that's what's most important.

Lookout my stepson is ADHD with OPD too. Get the book "Ending The Homework Hassle" by John Rosemond. It will help a lot. I was able to get an F student making A's and B's with the help of this book. These kids respond really well to firm, structured and CONSISTANT consequences.

My thoughts are with you lookout. No matter which way it goes things are going to be a struggle. It's clear that you are a great Dad though, so just don't lose hope. There are so many more options these days than there ever were before. It's not too much to bear. You have broad shoulders. You can do it.

Sorry bro.

Man, that's rough, Lookout. I'm hoping you and your family find a way to help your son deal with this. :sniff:

I'm sure there's a medical reason, but why can't he continue to take the Singulair? And is there any chance that the increase in negative behavior is made worse because of allergy symptoms running rampant, now that he's not getting any relief in that arena?

Thanks for the update. I really hope LL comes through this and gets back on track.
Best wishes for the Lookout Clan.

Wow, that's really rough! LL is lucky to have you.

A friend of mine has a kid with ODD/ADHD too. Her son can be wonderful - absolutely charming and fun, and in fact my daughter (who is 13) thinks that this kid (who is 11, her friend's little brother) is absolutely COOL! But I've seen other sides of him and his behavior can be nightmarishly hard to manage. He argues about things you wouldn't even think needed argument. Funny how that works.

I find it really interesting what you said about the Singulair. My son took Singulair for about 3 years to control allergies; he took Zyrtec also. Now, we're very fortunate that my son has never had any major behavior problems; in fact, he's very sweet and easygoing most of the time. Our problem with Chris has been serious underachievement at school. The brains are there, but the performance ain't happening. He tested as gifted. Teachers couldn't figure out why he was so unmotivated.

Well, he had been complaining about taking so much allergy medicine. It made him tired, he said, so we had him take it before bed. Mornings were still draggy and he wouldn't eat. He understood that it was a decision between allergy misery and whatever the medicine made him feel, but that was really sad. I understand. If I take Benadryl in the evening to help me sleep, I'm groggy all day too - they say it wears off in 8 hours, but that's not necessarily so.

Last year, he just stopped taking the stuff. We let him be responsible for it and he made the decision, without telling us, that he would quit. I figured that, heck, it's his nose, right? Apparently he's outgrown those allergies to some degree because they don't bother him as much.

This year, his teacher suggested we get him tested for ADHD. Not only is he under-performing, he's over-acting too! He's the class clown. He can't sit still. He's still a sweetie and everyone loves him, but damn, charm will only get you so far!

This year, I'm afraid, was a wash-out. Bad grades. Bad test scores. No more gifted/enriched class; he's back to the average for 6th grade. I was blaming him, but you know, that story gets me thinking -- it could be the Singulair. Now that he's had it out of his system for a few months, his moods are beginning to normalize a bit and he concentrates better. I know this is the opposite of what you report, but I wonder if the hyper stuff Chris experienced was sort of a backlash?

We really need to be more vigilant about what goes into our kids' bodies!

I wish you the best of luck -- you'll get it figured out, I just know you will! Keep us updated.

Good point. Allergies don't just make noses stuffy and eyes watery, they affect the brain too. I forget that sometimes. Maybe he could take something besides Singulair; there are a lot of allergy meds to choose from.

Oh wow Lookout. Sounds like you've got your hands full. Good thing your heart and mind are so big - I've heard more success stories than not with both ADHD and Bipolar from detirmined parents like you. Consult many doctors - you will find the right answer for your son. Hang in there - there is a light at the end of the tunnel. :grouphug:

I was wondering the same.

As far as doctors and medicine go. Less is always more.
Therapy is best. I say this not because I am an expert but because I somehow failed to understand a few things while mine was growing up. There's so many people yakkity yakking all the time. Everyone has something to say but bottom line is they all go home to their own problems and your the one ultimately that will live with the decisions you make.

(meaning solitarily with could have should haves of parental regret and remorse)

Tough gig, lookout. Must be so distressing to see him going through this. *hugs* I have no advice to offer. But I wish you well and I hope the doctors manage to find something that helps.

Wishing you the best, Lookout. I hope you soon find a solution for the young man. :comfort:

Nothing to add except that at least he has you and the problems are being recognised.
Keep letting us know whenever you think it's appropriate.

Howdy all. I figured I should stop in and say hello and give an update on life around here.

Lil Lookout is doing marvelously well at the moment (and we're about 6 weeks into that moment). Vyvanze did a great job of helping him focus and stay on task but he was an emotional wreck. Not just a little sensitive but a wreck. A minor inconvenience could literally result in two hours of sobbing. He didn't understand why he was acting that way and it made it even worse. After appointments with the medical doctor and the psychologist we decided it was time to acknowledge and address the likelihood of a mood disorder as the main culprit for his problems.

LL started on 1mg daily of abilify 7 weeks ago. I was concerned about 'zombification' and other side effects but it has been great so far. Within days the meltdowns disappeared and things mellowed out around the house. 2 weeks after starting it LL commented repeatedly that he likes the pill because he doesn't want to cry all the time and life doesn't seem so hard. His words, not mine. He now has a full range of emotions from sad, angry, happy, to downright joyous. People have commented on his performances in his soccer games because he is playing like a man possessed once again. He is living with an actual hunger for life again. He was even looking forward to school starting up again.

I am well aware that a day may come when this medication doesn't work anymore and we'll have to start the search all over again, but for now I am enjoying watching my son enjoy life. At this point he isn't even taking any medicatin for the ADHD because with his emotions under control he is able to consciously work on maintaining his focus. Times are good.

Beyond that, since my last post I have pulled the trigger and sold my company, accepted a contract returning me to my old firm, and will be building yet another office not too far from home. I am busy busy busy, but life is good.

***Clodfobble - we had the whole family on a STRICT GFCF diet thanks to your fantastic website but after 6 weeks we recognized no change at all to anyone in the family so we aren't following it anymore. Mrs L has always kept us on a healthy diet anyway, but it is good to know that that particular burden is not ours to bare.

Wonderful to hear, lookout. It must feel great to see LL feeling good again.

Glad to hear from you man. Keep on keeping on.

So glad that things are looking up for the Lookouts!

6 weeks is more than a fair try, and it's good to have it ruled out--you explored every option thoroughly and found what works for your kids. I am very, very happy to hear that LL is doing so much better!

Woo Hoo - all good news from the lookout clan!

Very glad to hear that.

Sounds like good news all round Lookout. I'm very pleased things are a little easier for all of you now, especially LL. :)

Way to go, Lookout! Try, try, and find what works. Congratulations!

Excellent news. Thanks. :)

Super. :thumb:

Happy to hear it, LO. Good news for LL.

excellent.

Great news LO. Come on back a little more often.

Oh, FFS! i'm not a superstitious guy but I might become that wierd "won't touch rough gold doorknobs on the second thursday of every other month starting with j" kind of guy.

i honestly gave my recent update with genuine joy in my heart. LL since then has abruptly returned to the extreme emotional instability i witnessed pre-miracle drug. picture an eight year old sobbing for the the second hour for the 5th time within 48 hours stating, "i don't know why i'm crying, it just won't stop". he then continued on to the heartwrenching, "can i just go to sleep and not wake up?"

He's fucking 8! Let me reiterate... 8!!!

coinciding with this abrupt and painful reversal is a bizarre muscle spasm that causes him to look like a parkinson's patient. he bends at the waist, shifts to the right, then doubles over. he is completely unaware that he is doing it and in fact has said, "did i just do that thing again?"

fuckfuckfuckfuckfuckfuckfuckfuckfuckfuckfuckfuckfuck!!!

for my many misteps and transgressions in life i deserve unthinkable consequences but this boy deserves nothing but... well, he's 8. he deserves to be a normal 8 year old.

out of the blue after 2 months of seemingly miraculous results the kid has developed the most unexpected of side effects from his miracle drug.

fufufufufuuuuuuck.

Fuck. :( Hang in there, man... you can do this.

Damn it.:mad2:

I'm so sorry, lookout.

This may be a weird question, but is there a chance he stopped taking the medication? I know both from personal and others' experiences that there's something inexplicable about these types of drugs that can give you the random desire to stop taking them when things are going well. The "hey, looks like I don't need them anymore" kind of syndrome. I'm sure you're not letting him completely self-administer them, but maybe he palmed it or something? On the other hand, if this is new behavior, not a return to the same old behavior, it may be a different thing entirely, fuck if I know what I'm talking about. Hang in there, man. :(

Maybe get him a pediatric psychiatrist. The MDs and psychologists may not know exactly how to treat the lad. Says on the abilify website that it's indicated for 10 and over.

*hugs* oh Lookout, I'm so sorry. What a fucking heartbreaking thing to see your little boy so distressed. I hope you find a solution for him, I really do.

ugh. hang in there.

ah, poor baby. Heartrending indeed.

Sorry to hear that LO - I hope the docs figure it all out. Did anything change in his diet or lifestyle that might be interacting with the meds? I have no idea how to help... just thinkin out loud again.

:(

Dammit. Hang in there Lookout. We are all pulling for you and LL.

Shit damn fuck.


Try to keep us posted, if you can.

Lookout, I have been pondering on this during the day, and it occured to me that some of my colleagues in the Cognitive Psychology dept at uni were unable to work with their patients when they had cold/flu/allergy issues because it interfered with the effects of their medication (I think someothing to do with the immune system). maybe he's just coming down with something or has a seasonal allergy that he no longer has singulair to deal with? here's hoping it's something temporary like that.....

Thinking of you and your family, cous. You WILL figure this out. Hang in there.

thanks everyone. 1) I witnessed him take his med every single night so that isn't the issue. 2) While he does have allergies they have not flared up at all recently. 3) No major changes, dietary or otherwise.

Quite simply after roughly 2 months the kid developed a severe side effect to the med that was working. We are weening him off the med over the next two weeks and will wait another week after that to return to his baseline. We are being escalated to the staff psychiatrist because his case is becoming more complex. Lots of tests headed our way.

Lil Lookout is working with a clinic that specializes in childhood mental and emotional disorders. they have been described by quite a few people i know and trust as miracle workers so i do have faith we'll get this worked out eventually, it just sucks for LL to go through it all.

**Yes we are aware that Abilify is offlabel when used with 8 year olds but it is not uncommon. In fact there is an almost identical med from a different manufacturer that IS tested and approved for kids but it has a higher incidence of weight gain and stronger side effects. Abilify has fewer side effects so we went that route. Lil Lookout is just so special that he gets the rarest of side effects.

I'm sure you'll find your miracle. here's hoping it's sooner rather than later :)

Don't know why this particualr rage of mine just resurfaced, but after reading all of you and Clod's posts I get SO EFFING PISSED when someone's little snowflake acts up a teensy bit, their parental units take them to a doc who immedeately diagnoses ADD or ADHD or bipolar or manic/depressive, throws them on meds and they're done.

I cry every time I read either of your threads. Those parents and docs have NO CLUE what folks like you are experiencing, and I really wish they'd pull their heads out and try some real parenting rather than medicating their own lack of discipline/caring/nurturing.

Thank you.
/Rant off.

Heh... that was the only reason I started videotaping my kid--because a friend of mine dismissed me with, "Oh I totally understand, when I tell my daughter no, sometimes she'll just get so sassy! Put her hands on her hips and say, 'You can't make me, Mommy'... the Terrible Twos, I swear." Yeah, not so much.