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Old 08-10-2012, 08:25 AM #1
fayesmom fayesmom is offline
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Default 7 yr old with MG wondering if we should get AFO/smos for her

hello I have a 7 year old daughter with myasthenia gravis she was diagnosed at 2 after a 2 week downward spiral starting with stroke like symptoms. After many rounds of testing and days of being in the icu they decided it was either geombera (i know i spelled that wrong) or myasthenia gravis they preformed a spinal tap and soon after a tesilin test. within 15 min of getting the medication my 2 year old who wasnt even able to breath on her own sat up and was trying to communicate. it was wild to watch and i am so happy we lived so close to UC davis pediatric hospital. We were transfered to san fransiso were we saw the amazing dr miller. faye recieves IVIG treatments on average ever 4-5 months and takes mestinon cell cept zantac and prednisalone multiple times daily. this seems to allow her a very normal life she does gymnastics and is a fully functional second grader. So heres my question... she is completly flat footed with no visable arch when sitting im wondering if this is one of the reasons she has such fatigue in her leg muscles by the end of the day. I was researching and found sure step AFO/SMOs can help kids with MS and i was wondering if I should push for faye to get a pair? we are currently living in NC and she is seen at UNC by a myasthenia specialist named dr howard. any suggestions?
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Old 08-10-2012, 09:27 AM #2
4-eyes 4-eyes is offline
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Hi,

Sorry to hear of your past struggles but glad your little girl is currently doing well. AFOs are used for foot drop, and I presume your dd is not having foot drop since she is fully active, doing gymnastics, etc. Flat feet are not a problem unless they cause significant pain.

I would not consider an AFO for her. They would alter her natural gait, they are uncomfortable and socially they would not be good for her, as there is no way to disguise them. You might want to make an appt with a podiatrist, and he may possibly recommend using an orthotic inside her shoes, but as long as she is not in pain, flat feet are probably her "normal."

My daughter, now 15, also has VERY flat feet. We saw a podiatrist earlier this summer and he recommended the orthotic and also recommended she not wear cheap flip flops, unsupportive shoes, high heels, etc. He also gave her some suggestions to do when there is pain, as my daughter does sometimes strain her feet if she wears heels or runs a lot.

Hope this helps. Take care!
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Old 08-18-2012, 02:53 PM #3
BackwardPawn BackwardPawn is offline
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Quote:
Originally Posted by 4-eyes View Post
Hi,

Sorry to hear of your past struggles but glad your little girl is currently doing well. AFOs are used for foot drop, and I presume your dd is not having foot drop since she is fully active, doing gymnastics, etc. Flat feet are not a problem unless they cause significant pain.

I would not consider an AFO for her. They would alter her natural gait, they are uncomfortable and socially they would not be good for her, as there is no way to disguise them. You might want to make an appt with a podiatrist, and he may possibly recommend using an orthotic inside her shoes, but as long as she is not in pain, flat feet are probably her "normal."

My daughter, now 15, also has VERY flat feet. We saw a podiatrist earlier this summer and he recommended the orthotic and also recommended she not wear cheap flip flops, unsupportive shoes, high heels, etc. He also gave her some suggestions to do when there is pain, as my daughter does sometimes strain her feet if she wears heels or runs a lot.

Hope this helps. Take care!
I have flat feet and find two things really help--I didn't want to spring for the custom orthotics so my pediatrist recommended Buffalo insoles. I haven't been able to find a replacement online, but your podiatrist may be able to get them. The other thing that help, oddly enough, is Birkenstock sandals. I recently discovered that they make regular shoes, as well, and am planning to buy some.
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