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my daughter has a intermittent squint and sees the ophamology roughly every 6 months
they say that her eye sight ok
dont know if they two are linked though to anything else
main thing my daughter eyesight ok
and said that they will monitor it
Heart mum of 2 Heart
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My little boy has hypotonia and was diagnosed at 6 months with coffin lowry syndrome. Dx was first based on hypotonia and abnormal facial features then confirmed by genetic testing.
He has received physio since about 7 months and makes progress (albeit SLOW progress) every week. He was always good at kicking his legs and batting his toys so it is mainly in his trunk and he doesn't weight bare for long so is nowhere near standing. When on his tummy he doesn't push up on his hands. But he loves to roll and pushes forward using his legs in a half attempt at commando crawl. I am going to quiz the neurologist about Neurotherapy and enzyme testing.
Now at 17 months he can sit but still has a rounded back and doesn't pull himself him or cruise on furniture. He stretches up for toys, leans forward to grasp toys putting weight on his hands to support himself, and can centre himself. Everyone kept saying "tummy time, tummy time, tummy time" and although this is true it is near impossible when they just burry their face in the carpet and cry out of frustration.
So I did the following exercises: Rolled towel under arms or chest to assist when doing tummy time, Place them over your thigh in a crawl position to play with toys. Facilitate and follow through on movements eg encourage rolling by placing objects out of reach, when sitting anchor their bottom properly, place hands on the floor so they gain confidence to use their arms for support, when stretching forward hold tummy so they can get into a crawl position. Encourage finger foods and chewing to improve face and swallow muscles.
Just incorporate the exercises into every day play and you will see improvements.
You are not alone and focusing on the now is the best thing you can do for all the family.

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