| still waiting
Hi there. this is my first time on a health Board. I have a daughter who is 16 years old. was a premie by 2 months early. never really did much physical. just liked to sit and watch TV and play games and toys on the floor. always walking on her tippy toes. I tried to buy her walking shoes but she fell alot because it was harder to walk on her toes. she walked soo much better in the those keds sneakers. she would always complain that her legs were tired when we went shopping or just walking. she would rest often when outside playing. she had RSV when she was born also so was on inhalers for most of her life. she has low muscle tone and i've seen every doctor in NH about her feet and legs. she has Bunnions and her feet look deformed. it looks like the foot doesn't bend at the ankle it bends in the middle of her foot. every doctor I take her too says she has tight achellis tendons and put her in PT. she stretches daily and she owns a horse and rides it daily. that alone is streatching. that is the most activity she does. she can't run,or ride a bike for long periods of time without being done in 10 mins. of riding. she has to lay on the couch to relax the rest of the day. she has scollosis of her spine and they are thinking of letting her take her brace off after 2 years. she has a growth delay of 1 a half years. her leg mucles are so tight that her knees fold inward when bent. we have been doing PT with her for 4 years off and on now. they have tested her for CMT and came back negative. her muscle enzynes are not elevated. now she told me that she has numbing in her feet when she stretches. even at PT when they stretch her her feet go numb. I don't know were else to turn. she has had an MRI and EMG and everything came back with something underlining but nothing etched in stone. they said when they tested her for CMT she had a few positive but not enough to make it stick. like they needed 5 and only got 3 chromisones. I keep pushing to find out something on her .. I don't want to see her in a wheelchair in a few more years. and no Diagnosis. her doctor said there are people out there like her that don't have a diagnosis. if anyone can add some ideas that would be great.
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