#11
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Confused[hi,my son has severe cerebral palsy and hypotonia used to be a problem when he was a baby.peter is 8 now and we tried allsorts of therapies to help him out.we attended craighalbert school for cerebral palsy and we worked on the hands being so tight ,we used continual massage spreading the hands out.it doesnt need to be for ages just a few minutes throughout the day helps.we also fought for a lycra suit and peter was the youngest child to get one when he was 9 months old.the lycra suit really helps to strengthen the muscles in the neck and after wearing it for a few months peter learned to hold his head up for a few seconds at a time.now he can hold his head up for a good 10 minutes.it is constant but VERY rewarding to have the priveledge to raise a special baby.good luck
ps we have tried bobath too they may help.
#12
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Hi. My 6 month old has hypotonia, he was diagnosed with Prader-willi syndrome at 5 weeks of age. I also have a 4 year old (both boys). From what I know and have seen with my baby the hypotonia does improve, it just varies from individual to individual. The physio told us our son has severe hypotonia and that it will take time for his head control to develop. I am hoping that by around 8/9 months he will be holding his head up enough to sit in a bumbo for feeding. Fingers crossed!!

#13
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Hi - our son just turned 3 on Saturday - his diagnosis is ASD and hypotonia. Like other ladies have said it does vary so much. Jack never crawled or pulled himself up around the furniture and hated being laid on his tummy as a baby. Surprisingly he walked at 15 months but due to the hypotonia cannot sit himself up from laying down, sit down from standing or climb or run. This means he easily falls if knocked into by other children - but he is improving! We started physio sessions in August which have been really positive and we have exercises to help him improve too. His hypotonia seems to affect mainly his stomach muscles which has resulted in him living with constipation - though we are 'managing' that with medication.

I was interested to hear about the massage though. It was mentioned for the first time today at our family meeting so I'm going to follow it up now!

I also agree about it being a priviledge to to raise our special children - everything they eventually manage to do is a massive celebration! You're going to be a very special mummy to a very special child - treasure every minute - it can be hard work but your rewards make it all worth it. xx
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(08-26-2010, 12:29 PM)graysonsmum Wrote:
(08-26-2010, 11:11 AM)Nits Wrote: Hi

My son has hypotonia as well. The only thing that has helped him is regular physio. I took him to a charity called Brainwave. They helped a lot by giving us a daily program chart with various exercises to be done everyday. Each exercise was not more than 2 mins and totalled to about 15 mins. He is still quite low tone but has developed a lot of strength in his limbs. He is now 3 years old.

Another thing that has helped his limb strength is oil massage. From a very young age i gave him a daily oil massage. The physio at brainwave was actually surprised that he could start walking at 19 months despite his low tone and said the massages might have helped give strength to his legs.

Do you get physio from your local hospital or just do it on your own, I have found wit what I do for my son is the only reason he improves as our local team are appaling at pt apts. I have been thinking about taking my son to a charity like brainwaves for help as he is now 19 months and still can not even sit unaided.

I am interested in the massages, did you just rub him or where you trained ?

Hi,

Yes we do get a lot of support from the local NHS physio. She has been great with my son. But Brainwave assisted with a structured program which helped a lot as we knew exactly what to do everyday Smile

Regarding the massage : I haven't had any training, just learnt from seeing my mom do it Smile It basically has to be skin deep but not too mch pressure. I massage downward ( start from thigh and go downward to foot).
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i found out that my daughter had hypotonia at 20 months because she wasnt walking they refers her to paeditrician
and found out that she had global developmental delay and hypotonia and had loads of test done mri chromosones , etc and all came back negative

now she 5 and she has a severe learning disability , hypotonia
and may be testing her for dyspraxia
but her walking has improved so much she doesnt needs her disability buggy or he paedro boots (she just have insoles )
she falls down sometimes and needs help going down stairs
but the main thing thats she improved
she has help from physio ot and speech etc



Heart mum of 2 Heart


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