#16
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My son has hypotonia. He is now 3, crawls, pulls up and can stand unaided for about 10 seconds before he crumples! However give him his kaye walker and he can last for a few hours or so. He also has hypermobile ankles which is anything but helpful added to this but he just plods on and keeps trying imrpoving by the day. He has regular physio and is coming on well, our issue is the weakest point for him is his trunk so unless that firms up it is just as case of trying and waiting...

We are exploring genetics right now to see if they have any hidden answers for us just awaiting a date, it seems with him to be a waiting game.

Hope things improve for you but its great to see so many people post a reply - you don't feel so different. x
#17
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My son has severe hypotonia due to a genetic condition (not yet diagnosed) that I also have. He also had lots of breathing and feeding problems from birth. He's now 3 and he has always had delayed milestones, and although it is hard to see other children the same age doing lots of things he can't really do, or finds very difficult, when he achieves something new the feeling is amazing because you know how hard he has had to work to get there.

He has had physio and occupational therapy since he was born and we also go to a charity group where he has play therapy and physio, and also hydrotherapy at one of our hospitals all provided by the NHS or charity.

We have a Neurology team and genetics team who look after us and also local paediatricians in respect of feeding and general day to day things like that.

We also had a sleep study although I think this should have been done years ago as I think it would have benefited him much more.

You sound like you are getting lots of support early on and although it may be a little overwhelming now, in the long run it is so much better that this support has been put in place early on and you're not having to fight for it.

I was so pleased when I found this forum, we're all in it together and there is a lot of support and understanding here that is often hard to find elsewhere.

#18
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yay it worked!
well thank you for all the replies i truely dont feel alone!
nate has been back in hospital, had rsv and was very poorly. since then hes had one bug after another. while we were in we got his mri results- normal and genetic tests for schinzel giedion disease - negative. so thats some good news!
each time hes poorly his strength takes a knock and it takes a while for him to build it back up again- ie he started holding his head ( whoop) but struggled again after rsv and is now back to where he was before he got ill if that makes sense?
in the next 4 weeks we have a neurologist appt, ventillation team review, and later on an opthalmic appt. his eyes are structurally intact but he still cant see at 6 months. the opthamologist isnt sure if its delay or damage. i read somewhere that hypotonia and delayed eyesight are linked, does anyone have any experience of that? it sounds like we are lucky to have so many professionals involved from an early age.

hope everyone had a lovely Christmas and New year!
xxx
#19
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Glad you don't feel alone and it sounds like things are ticking along for you as appointments go. You may find the Neurologist appointment a bit full on we did, I think Paul was 16 weeks when we had our first but they have lots more ideas than say Paediatricians as they specialise and see babies like ours each and every day although we are still baffling our team haha.

We have had 3 years of going right back to where we started as far as progress goes after illness and the first 18 months for us was probably the worst for that with endless chest infections etc and even now it takes a long time to get back on track with feeding etc after he's been ill so I can relate there. Paul's core, neck/head and shoulders are also his weakest areas too. We also both have certain facial features (was hard to hear first time round and a shock for me as I hadn't realised I had them) its described as Myopathic face for us (because the muscles in the face are weak they're drawn down) and we also have bilateral ptosis (drooping eyelids he always looks very tired) and we both have very high arched palate which is classed as a skeletal deformity, my son is the living image of me too which everyone comments on and we now know its probably got a lot to do with the condition.

Hope he continues to improve I'm sure he will good luck with your next run of appointments x x x
#20
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Hi my son has hypotonia as well and i know what you mean about when they do so much and then take ill they got back wards . My son is normal well but when he takes ill he takes it bad and takes him months to get back to normal , He is 2 and 7 months and started crawling few months ago which they told me he never would . His sight is also not the best , last year he had a test which showed his eye sight was of a 3 - 4 month old baby . He was a 1 and a half at the time of the test . He will be getting the test re done in few months . His eyes are fine though , its to do with his optical nerve they think . They now think he has sensory processing disorder , so that could be the answer . He has come on with his sight but doesnt see small things or at least doesnt look or follow them . My 1st appointment with neurologist was very full on . My son was having a manic day and the doctor wrote him off , saying it was autism and they would never know what was wrong with him . He is does not have autism , his main doctor deals with children with autism and said he is nothing like a child with autism , my 2nd time seeing the neurologist lasted 5 mins , were he told me may son wasnt walking cause he cant see ? I hope you get a better doctor and dont let them push you about ,, you know your child better , wish i had have the last time , but i will when i go back in may . good luck x
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012


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