Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 Hi and Kate, Welcome. I am a(mother of ). I do not have CMT but does. She is 14 and about to enter high school. She wears AFOs, otherwise she trips too much. Her hands are curling in (they call it clawing but I hate that term). She is right handed and her right hand is the worst. We live in Eugene, Oregon. She sees a great nuerologist and has a great orthotist here. The orthotist has one artifical leg and he treated her with so much respect, she just loves him . We too, go to the DR once a year, but she has some other medical problems that keep us in the Dr's office all winter. The past two years we fought medical advice and REJECTED the flu vaccine. Whenever she got the flu shot, she got terribly ill for about 3 weeks, could hardly drag herself out of bed. I would rather take the chance of her NOT getting it then getting it and assuring her of gettting a case; mild or not. Viruses just deplete her of all strength. Anyway, welcome again and I have been able to get to respond once; she prefers not to deal with this unless necessary. By the way, all the school talk has made me want to chip in. I have had to fight for her every step of the way. PE teachers would yell at her, even when I wrote a note explaining things. finally, they agreed to take her out of PE, she walks, rides a stationary bike at home. She couldn't open the locker so they finally ordered a special one for her. She kept it all 3 yrs of middle school. She can open the ones at her new school . We checked that out already and they promised me they will give her a top locker every year. (at this high school they alternate top locker and bottom locker every year). Could you imagine her bending over to get into her locker??? She has some good friends that stick up for her and one of her best traits is her sense of humor, she deflects alot with it. but, I know she hurts too, and her Dad and I try to soothe those wounds when she comes home and talks. NO ONE in either family has CMT. They call it a genetic defect. Go figure, a('s proud mom) Quote Link to comment Share on other sites More sharing options...
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