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Thread: Rehab for children

  1. #1
    Junior Member
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    Aug 2006
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    Adelaide, Australia
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    Rehab for children

    Not quite sure if I am in the correct area here, but I'll try anyway. I am the grandmother of an 11 year boy in Australia, T10 complete (TM 3 yrs ago). We have found it very difficult to get much info here on pediatric SCI. My main concern is trying to keep Nathan's bones and muscles in his legs in good condition (hopefully for some answer in the future). Nobody seems to be very innovative as far as therapy for denervated muscles. I don't know if we are doing enough to prevent atrophy. He is attached to an adult rehab centre (which we had to go through red tape to access). He has flaccid paralysis in both legs and has no bladder or bowel movement, has been the same since he became paralysed in half an hour 3 years ago. My daughter does daily stretching exercises and he is in a standing frame at school for 40 mins a day. He is very active in wheelchair sport and is quite independent in his daily living. The adult rehab centre is helpful with most things but the general attitude seems to be about making sure his life has balance etc (which it does). When I have tried to go further down the track of muscle/bone maintenance etc there doesn't seem to be any interest in exploring any new ideas. I don't want to hear in 10 years time that there is a cure but that he is not in good enough physical condition to be a recipient. We don't promise him things will change but try to keep hope up that it is possible.

  2. #2
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
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    19,320
    Hi Nanny!

    Lo and behold I acquired TM at the age of 12; I'm now 33.

    The good news is that for the first ten years, I felt great and was very active. I think as long as his body is growing/healing he is going to be fine. It's great that he's active and standing, according to what I've read here, will *aid in prevention but not improve* bone density loss. Keep up those stretches! If he is flaccidly paralyzed (I am as well and I was paralyzed in less time than half an hour), unfortunately 'functional electrical stimulation won't do him any good.

    There are some working on electrical stimulation for flaccidly paralyzed muscles at higher levels ... peruse this thread:

    http://sci.rutgers.edu/forum/showthr...vienna+flaccid

    Not sure if you've heard of Cody Unser (famous American race car driver's daughter) but she acquired TM at 12yrs as well:

    http://www.codysfirststep.org/

    I'm sure you're aware of the Transverse Myelitis Internet Club and the Association? www.myelitis.org

    Lots of great info around here - hopefully the good doc and the nurses chime in. Good luck!

    Jenn
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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