Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Hello everyone. I am a mother of a bright shining little 5-year-old daughter who happens to have CMT. She was diagnosed about 3 weeks abo through a blood test. More specifically she has CMT 2E, which I hear is very unusual to have since birth. No one else in our families has this. We first were told that it was just hypotonia, when she was hardly walking at 18 months. Then were told that her ENG results looked like CIDP, so she did 6 months of immunoglbulin treatments. After we saw no really big results I asked about a blood test and the neuro agreed. It is so nice to finally know and just thrills me that there are groups like this and people like you all that can share information on the subject. Payton does walk and gets around fine (does lose her balance on uneven surfaces), and fatigues fairly easily. Her hands are fully functional, speech non-stop(he,he), and she is so smart and funny. Her biggest quality is a big, warm heart who cares for people and animals(she has 5 pets). However, it seems as though we are in aconstant battle with her AFOs. Have had many kinds, does not like anything on her feet(hot, rubs). Any of you have experience with this and have you heard of easy-gait brace? We are thinking of giving them a try. Please if anyone would like to chat with me about children with cmt, self experiences-anything! Thank you, Quote Link to comment Share on other sites More sharing options...
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