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Re: children and CMT

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My daughter was 6 when we had her checked by a neurologist & physical therapists

referred to us by MDA. Now she is grown up and I can say I am VERY glad I had

her checked at that age. We were also very fortunate to have a team that was

very knowledgeable about CMT. They had AFOs made for her.

The reason that was beneficial for her at that age was that it kept the bones in

her ankles in proper alignment as she grew. They also kept her tendon from

shortening since the AFO kept her foot at a 90 degree angle. When she was done

growing they had her get hinged braces so her foot would be able to flex up more

when she walked while still keeping it from dropping and causing her to trip. I

believe those braces saved her from needing surgery later on and her gait looks

normal when walking.

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Hi,

My daughter is nine, we are in the UK, we haven't had much luck with the medical

team. I bought my daughter a pair of hinged AFOs and I cannot stress how

beneficial these have been for her. They are amazing and she has improved since

wearing them.Most kids here in UK are given fixed ankle AFO without hinges.

People just seem to put up with them and their kids end up uncomfotble and don't

really wear them.

My daughter was given fixed ankle and I watched her symptoms and mobility worsen

rapidly it was worrying she could barely walk and got so weak, but like you say

I am so glad she wears hinges and will continue to,the benefits are massive.

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Hi ,

Thanks for this - this is great. We are also in the UK, and my son is nine as

well. Do you mind if I ask please where you find hinged

AFOs? (google search I guess?)

Thank you!

Anne

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