So here's the story

[Aliantha]

Originally Posted by Clodfobble

I hope you hear some positive news soon Ali.

Thanks Clod. I don't think this is the end of the world. Personally as his mother I think he's just going to need a bit of physical therapy, which as I've mentioned he's already getting thanks to my brother. It's more the issues with feeding that have brought matters to a head.

Originally Posted by monster

what about non-profit orgs? anyone there you can get on your side?

I'm not sure what you mean by this. I'd like to know though.

Originally Posted by monster

can your brother help?

He has been very helpful so far, and he's actually heading over to Prague next week (or the week after, can't remember now) so he's going to bring the camera over on the weekend and take some video to show the doctors over there and at least get an opinion on what they think of his movement. From there, the expert doctor (can't remember his name right at this point) is due to be in Australia next March, so I'll take Max to see him in Sydney if he can spare me 20 minutes then, and Don (brother) seems to think he'd do it as a favour to him.

[monster]

Originally Posted by Aliantha

I'm not sure what you mean by this. I'd like to know though.
.

usually set up by parents with similar issues -support groups and the like. do you have Craigs List there? You can often find them that way.

[Sun_Sparkz]

Grr i had this all typed out and my damned PC restarted on me.
take 2:

Ali, Sorry ot hear this is giving you such a shithouse time of it. Big hugs

Have you contacted any maternal/ baby health centres? these can be really great. they have teams of experienced health care professionals to assist.
They even have stay over rooms so you can go and get some respite care.
They are run by the council in each Australian state and you can be put in touch with your closest one by calling your local council and getting the contact details.
It will be called parenting/ baby health centre/ infant and mother health centre or something like that. different in each area. All the "new parenting" stuff is probably not relavent for an experienced mumma such as yourself but the Infant Feeding Support Programs may be of interest to you.

Keep your chin up

also you could try the parents hotline - the QLD number is 1300 301 300 - they have lots of support and info on parenting, babies, children, and can put you in touch with local agencies.

I did a quick search of your area (from your profile it says brisbane) and i found this:

community child health clinics

Community child health clinics, operated by Queensland Health, provide a very valuable free service for new parents. Clinics are located throughout Queensland. This section broadly describes the services available through Community Child Health around the State. There may be slight variations in the exact services offered from clinic to clinic. Services available include:

an initial health check
regular appointments and check-ups at your chosen clinic
courses in parenting
free childhood immunisation clinics
specialist services when you need some extra help
help and advice over the telephone

All these services are offered free of charge to Queensland residents.

regular check-ups
You will be given your free Queensland Health "Personal Health Record" booklet for your baby in hospital after the birth. This will be your complete history of your child's health and development as well as a vaccination record.

checks at 2 months, 4 months, 6 months, 12 months, 18 months and older or as recommended by your health care professional

parent groups
Parent education sessions are usually run as a course at most child health clinics. Topics covered may include feeding, playgroups, baby massage, development, injury prevention and sleeping and settling. The courses are extremely informative and also offer an excellent way for you to meet other new parents in your area. Many a playgroup has been formed this way. To find out about dates, call your local clinic. Groups are run free of charge and are available to all parents even if you choose to take your child to your GP for your regular check-ups.



courses in parenting
Triple P - Positive Parenting Program aims to take the stress out of parenting and make parenting easier by providing practical answers to everyday parenting concerns. It assists parents to build positive relationships with their children. Community Child Health Services offer Triple P courses free of charge at local child health clinics throughout Queensland.

free childhood immunisation clinics
A selected number of clinics offer regular free childhood immunisation clinics. If your usual clinic is not one of the immunisation clinic locations, you are able to take your child to the nearest available location. For more information on childhood immunisations, see the immunisation section of this website.

specialist services
The community child health service may also operate Infant Feeding Support Programs. These clinics offer parents of new babies support and education in parenting skills over a day stay. Appointments are usually made by referral from your child health nurse. Clinics are free of charge.

The Ellen Barron Family Centre also offers a residential centre which is located in the Prince Charles Hospital, Rode Rd, Chermside, Brisbane. The centre provides parenting education and assistance with particular childhood concerns for children under 2 years and their parents. Appointments are made by referral from your child health nurse or Paediatrician. The centre can be contacted on (07) 3139 6500.

Early Feeding Support Clinics
Alderley Child Health Clinic, Shop 4, 24 South Pine Road, Alderley
Kallangur Child Health Centre, 126 School Road, Kallangur

The Early Feeding Support Clinics are "drop in" clinics, open from 9am- 12noon, Monday to Friday (Closed on Public Holidays). Mothers with new babies are eligible to attend for up to two weeks following discharge from hospital. After this period parents are required to make appointments for follow up support and advice at their local child health clinic. The clinics are FREE and are staffed by qualified Child Health Nurses working for the Community Child Health Service, Royal Children's Hospital & Health Service District.



13 Health Line
There is a free 7day-24hr information and advice line staffed by registered nurses.

ph: 13 43 25 84




clinic locations

Please note that centres have different operating hours and some may not be open daily.

Details of clinic locations throughout Queensland can be found via the Community Child Health Service website or by consulting White Pages under the heading Queensland Health - Community Child Health Service.

For clinics in the Tweed Heads (NSW) region of the Gold Coast, look for Early Childhood Health Centre or Community Health Centre.

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Queensland Health Community Child Health Service
13 Health Line (24hrs)
> ph: 13 43 25 84

[Tawny]

I've been a pediatric nurse for years and I wish we lived somewhere close where I could see him and try to help you! It's hard to help over the Internet but it sounds like he needs to be seen by a pediatric neurologist.

When you say he has difficulty feeding, what do you mean exactly? That he can't latch on? sucking is weak? he refuses to suck? he gives up after a few seconds? he throws up immediately after? (not to be confused with a little spit up. I'm talking gusher.) does he have trouble swallowing? I assume you've tried various nipple types?

Is he gaining weight?

Keep in mind feeding problems are very common in infants and usually resolve themselves with no need for drastic medical intervention.

[Aliantha]

Thanks Sunny, I might give them a call next week.

Tawny, wouldn't it be nice if you were closer. Might solve all my problems.

Basically a feed goes something like this:

We sit down in his room. Once I walk through the doorway we don't talk anymore, at least, I don't talk anymore. I get him settled on my lap with the bottle and put it in his mouth. From there he starts to 'chew' up and down and make noises in his throat which stop him from sucking. I've lately (over the last few days been looking away from him when he does this and it seem to stop him 'talking' somewhat, so then I look back at him again and we continue that process for usually anywhere up to 15 minutes) When he does start to suck he often seems to have trouble actually sucking hard enough to get the milk to flow until he's starting to doze off and that's when he starts to suck hard enough, but usually this wakes him back up again the first couple of times at least so we have to go through the process of getting him sucking again. Thankfully the subsequent times are usually fairly quick though. When he finally does get going, he usually only has about 180mls per feed, so he's really not having anywhere near what he should be.

He gained weight quite quickly over the first month and a half, but from there it's been a fight all the way to get his formula down, and yes, I've tried numerous combinations of formula and teats.

I should be seeing a ped sometime in the next month and hope to have him checked obviously for any minor mouth deformities (not that I can detect any, but I'm not the expert), or gut problems. Maybe he has faulty valves in his oesophagus or something.

He did have reflux when he was tiny, but that seems to have abated more or less over the last two months or so. He was a great power spewer. Now we just have the odd spit up which is nothing more than a wet burp imo.

I sometimes wonder if maybe his stomach has never stretched out as it should or something. I just can't figure out where I'm going wrong. I've minimized his distractions and we stick to the same routine more or less constantly unless we're not at home and even then I try to stick to it as much as possible. I know it's been a bit of a spiral for us both over the last few weeks though. I've started to tense up every time it's close to feeding time, so I know that doesn't help. I hope that within a week or so I should be feeling more able to cope with things once this medication the doc has given me kicks in properly.

To be honest, I already feel a bit better just going and asking for help, and I appreciate the suggestions I've had here too. It's still a struggle, but at least I don't feel like slitting my wrists today.

[monster]

So try not feeding him in his room and minimising distractions.

Try feeding him at the table with the noisy herd.

if you think his suck is weak, make the hole in the teat larger so less suck is required.

[Aliantha]

Believe me, I've tried feeding him with other people around and it's simply impossible. What we've got now is the best situation I've been able to organize.

I've already cut the hole in his teat much larger. If it's any bigger he might as well just open his mouth and let me pour it in. I actually think that it is the way he moves his tongue combined with (or which causes) the weak sucking action.

I've tried leaving him till he's practically starving to feed, but then it's hopeless because he can't settle anyway and ends up falling asleep almost immediately and if I wake him, he wont suck anyway. I can't get him to feed when he's not at least starting to get pretty hungry, so there's a pretty fine window of opportunity.

Trust me, I've tried everything. I've tried putting him in his cot if he wont feed then getting him back up a bit later and trying again in the hopes that he'll get the idea that the more he feeds the longer he can put off going to bed for instance (yes I know babies don't think along those lines, but they do get the idea in their own way).

The best feed of the day is the 'dream feed' I've been getting him up for at around 10pm. He basically stays in the 'twilight zone' and has a quick feed and back to bed. Only problem is, that's really only a half sized feed to top him up till morning. Thankfully he's more or less sleeping through the night now at least.

[monster]

Sorry, just trying to brain-storm, just in case ...wasn't intended to criticize or imply that you hadn't tried everything you could think of or couldn't think of obvious ideas.

will shut up now and stop trying to solve everything. again.

[TheMercenary]

Wow Ali. Just read this for the first time. Hope all is well. I would be very interested to hear what the Peds doc has to say. I am sure that the majority of your depression will mend as you deal with any issues with Max. Positive thoughts coming your way. Keep us informed. Always glad to lend an electronic 1s/0s ear.

[Clodfobble]

A friend of mine once had to resort to something a little odd to get her kid fed (actually, the dad was the one who came up with the idea): you know how infant medicine bottles have the droppers in the top, and they hold about 1-2 ml? She used one of those to squirt the food in directly, one dropperful at a time. It's not fast, but then again, it sounds like feeding isn't a very quick process for you guys right now anyway. And it doesn't solve the problem in the long run of teaching him to suck properly... but I know that for her at least, it took away a big part of the stress because he was finally getting enough food in there, so at least she wasn't worried about nutrition anymore.

[monster]

It's supposed to be possible to feed them while they're sleeping. I never needed to, but a friend of mine with a preemie did and it worked well for her.

[classicman]

So sorry Ali - I'm sure the lil guy will catch on eventually and start to "do his thing" One of my kids fed only once or twice a day and that was a fight. Then suddenly he took off and was hungry all the time. Eventually he ended up biting the teats off the bottles and sucking them dry in moments - not neatly either.
I dunno - I guess all I'm saying is perhaps its just a phase and he'll grow out of it. Hang tough. We're here if/as you need us.

[Tawny]

There are a lot of nipple types out there and you could spend inordinate amounts of time and money trying them all. But you have tried a cleft palate nurser? or something called The Haberman Feeder?

I don't mean to upset you with what I'm suggesting, but his issues sound a lot like the problems cleft palate infants have.

I assume he has been evaluated for cleft palate and does not have this, however, one of the cleft feeders might help him.

How old is he today (exactly)? And how much does he weigh? How much did he weigh at birth? Was he full term? Did you have any pregnancy problems, like pre-eclampsia or extra amniotic fluid? (unless it's too private to answer in this forum, of course.)

It is very difficult to help an infant over the Internet. (I've never done it before.)

[Aliantha]

Originally Posted by monster

Sorry, just trying to brain-storm, just in case ...wasn't intended to criticize or imply that you hadn't tried everything you could think of or couldn't think of obvious ideas.

will shut up now and stop trying to solve everything. again.

No it's ok monster. I really appreciate you trying to help. It's very kind of you.

Originally Posted by TheMercenary

Wow Ali. Just read this for the first time. Hope all is well. I would be very interested to hear what the Peds doc has to say. I am sure that the majority of your depression will mend as you deal with any issues with Max. Positive thoughts coming your way. Keep us informed. Always glad to lend an electronic 1s/0s ear.

Thanks Merc.

Originally Posted by Clodfobble

A friend of mine once had to resort to something a little odd to get her kid fed (actually, the dad was the one who came up with the idea): you know how infant medicine bottles have the droppers in the top, and they hold about 1-2 ml? She used one of those to squirt the food in directly, one dropperful at a time. It's not fast, but then again, it sounds like feeding isn't a very quick process for you guys right now anyway. And it doesn't solve the problem in the long run of teaching him to suck properly... but I know that for her at least, it took away a big part of the stress because he was finally getting enough food in there, so at least she wasn't worried about nutrition anymore.

I've thought about that Clod, but I'd really like to try and sort this issue out if I can. For now I'll persevere, but if nothing else works I might try it.

Originally Posted by monster

It's supposed to be possible to feed them while they're sleeping. I never needed to, but a friend of mine with a preemie did and it worked well for her.

He does feed ok when he's sleeping, but the most I can ever get him to take is just over 100mls, which is less than half what he should have in a feed. I do the dream feed thing at night to top him up till morning though. That seems to be working.

Originally Posted by classicman

So sorry Ali - I'm sure the lil guy will catch on eventually and start to "do his thing" One of my kids fed only once or twice a day and that was a fight. Then suddenly he took off and was hungry all the time. Eventually he ended up biting the teats off the bottles and sucking them dry in moments - not neatly either.
I dunno - I guess all I'm saying is perhaps its just a phase and he'll grow out of it. Hang tough. We're here if/as you need us.

I'll keep my fingers crossed that you're right classic.

[Aliantha]

Originally Posted by Tawny

There are a lot of nipple types out there and you could spend inordinate amounts of time and money trying them all. But you have tried a cleft palate nurser? or something called The Haberman Feeder?

I don't mean to upset you with what I'm suggesting, but his issues sound a lot like the problems cleft palate infants have.

I assume he has been evaluated for cleft palate and does not have this, however, one of the cleft feeders might help him.

How old is he today (exactly)? And how much does he weigh? How much did he weigh at birth? Was he full term? Did you have any pregnancy problems, like pre-eclampsia or extra amniotic fluid? (unless it's too private to answer in this forum, of course.)

It is very difficult to help an infant over the Internet. (I've never done it before.)

Yep they looked for cleft palate when he was born, and also during all his scans and he's clear for that. I've never heard of a Haberman feeder. Can you tell me more about it? (I'll have a look online in the mean time anyway)

Today he is 5 months and 1 week. He was born on the 15th of March. He weighs 7.5kg and he was 3.2kg at birth. He was 2.3 weeks early. I had high blood pressure (up to 180/120 and some protiens showing in my urine during the last few months. I was admitted once prior to delivery for monitoring, and had to go to the hospital every few days to go on the ecg (that's the right machine isn't it?) for the babys movement and heartbeat. It was all pretty normal. Usually around 140bpm and plenty of movement where the rate went up to around 165bpm.

I really appreciate you trying to help Tawny. You've given me at least one thing to look and consider so far.