#6
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hi,i know exactly how you feel about leaving other Children out,but i don't think that the fact your baby has problems makes it worse,i think its just jealousy of a new sibling.i know my 1st was an evil little begger when his sister was born,yet when my youngest came along with all his problems and we had to live in hospital for 8 weeks you couldn't have wished for a better brother!
i hated the physio to begin with and so many times wanted to give up as Scott got so upset,but it really is the best thing we could have done.now he does it no problem as he knows he gets a massage after!
it is hard for the sibling to go through it aswell,i know my 2 get upset sometimes when he has to go back in,my little girl is 3 aswell,and they take in so much more than you realise.
xx
#7
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Hi

Well my little boy has hypotonia too, he is now 19 months old but when he was born he was in scbu for the exact same reasons, what can I tell you, my little boy up until 8 months had bad O2 stats all the time, but the hospital didn't realise that till he was 4 months and stopped breathing (3rd time) but by the 8 months he didn't need oxygen. It has always affected his feeding, but he is now 19 months and eats orally, he is having a feeding tube but thats because he doesn't eat hardly anything for other reasons than just the hypotonia. I honestly can say from our point of view it has improved every month he gets older, he still has severe low tone, but it doesn't affect his breathing to bad, but does affect him being able to eat solids and his motor skills.

Obviously every child is different but like your little one my son still doesn't have a diagnosis. It just takes a lot of hard work with physio ( mainly at home), like you I find it hard not to look to the future but I can say now 19 months later I only do that about 3 times a week not 30 times a day, it does get easier and you learn to look at the little picture.

I hope I have helped explaining our story, be strong, you will cope cause your little ones make you.

Happy to talk, the forum has been a life saver for me.
Kara
x
Mummy to the most beautiful little boy Heart Grayson Heart
#8
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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.
#9
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(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 ?

Mummy to the most beautiful little boy Heart Grayson Heart
#10
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Thanks for the replies. ive been desperate to find anyone in a similar situation.
quick update- nate is having a sleep study on the 13th then getting reassessed by the airways specialist, neurologist and geneticist ( who is still thinking of things to test for). he is doing well with his bottles but from saying they dont want him to put on too much weight they are now saying he isnt putting on enough. hes had his ng tube out a while now and i really dont want it back in ( not that its up to me!) as he is breathing better without it If you know what I mean . they may change his milk to high calorie stuff. he started physio yesterday and theyve given me lots to do at home and they will see him every 2 weeks. he may need splint on his hands as he has contractures and cant open them very well ( although its getting better). his tone problem seems worst in his core - neck/ back etc as he can bat toys etc on his play gym. most of the things ive ben given to do are to encourage neck strength.The physio says its too early to tell what he is going to be able to do physically. its hard seeing other babies the same age with head control, but i know this is probably the first of many differences and dont expect him to hold his head up or sit for a while. weve been offered baby massage in the home which will start soon
hope you and your little ones are well
rach xxx


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