Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Welcome Chemaine, I am 31 and was diagnosed when I was 5 with CMT and honestly there isn't a lot you need to in terms of medical intervention, you can do most of what needs to be done at home. Make sure she is active as possible and make her feel as normal as possible. I hated seeing CMT doctors growing up made me feel different and there was nothing they were able to offer me except what I am telling you which is stay active. There is surgery for foot drop but I was told it may cause further complications down the road and may have to repeat the process many times and the recovery takes a while. My daughter is almost 7 and I am sure she has it but we never got her tested because I do not want to label her. I also don't want her to have to go through all what I had to go through only to feel discouraged and hearing constant reminders how there is little medically that can be done. Show her love and support which it sounds like you are certainly doing that now. I was able to live a pretty normal life, I had friends growing up and relationships like most kids and was able to go graduate college and have a career. As a parent I can not blame ypu for doing anything in your power to help her. I wish there was more medical advances and better treatments but maybe there will be more when our kids get older. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Welcome Chemaine, I am . My son Jayson has CMT. He is 14y rs old. He was diagnosed 8 months ago. Probably would have been sooner but Jayson is severly Autistic which makes things harder to know what is going on with him. He has had physical,speech and Occupational therapy since the age of 1yr. He also delayed in motor skills and is still not potty trained. I'm not sure if all the delays are from CMT or Autism. He is no longer able to walk or stand. I transfer him from his bed to his wheelchair. His feet have dropped severly and his legs are very contracted. I'm very sorry to hear about your little one. As a mom, I know how frustrating it is. I'm not sure where you live. I live in Missouri and take Jayson to the MDA clinic in St. Louis. They have made a big difference for us as far as educating us as much as possible. He sees Dr. Connolly. She is wonderful. The only advice I can give is to love your daughter as much as possible and treat everyday as a precious gift. She will need you to be strong for her. And make sure you take time out for yourself. You and your daughter are in my prayers.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hi Chemaine, I'd like to go on the record and second what Andy said about visiting the doctors as a kid and teenager. It's a drag to be reminded constantly that you're different than everyone else and there's not much the doctors can do about it. Quote Link to comment Share on other sites More sharing options...
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