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Old 08-10-2012, 08:25 AM
fayesmom fayesmom is offline
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Join Date: Aug 2012
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10 yr Member
fayesmom fayesmom is offline
Newly Joined
 
Join Date: Aug 2012
Posts: 0
10 yr Member
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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