Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 , P.E. might be too much for your daughter. When I was 12, I was medically excused from P.E. and got to go to the library to do my homework and help the librarian. It is possible that in P.E. she has been trying to keep up with the class, and has overexerted her muscles. This might be where some of the pain in both legs and lower back come from. Does your daughter have an IEP on file with the school? Also check with your daughter's doctors on exercises that she can do at home, or even at school, maybe even something like swimming - but all non-competitive right now. This is how I spent my adolescence and teen years, swam, biked and rode horses - still exempted out of the school's PE program because the competitive nature of it just increased my fatigue (and along with that my frustration) I still got my exercise - on my own terms, and this way I began to learn how to pace myself in physical activities. As for the pain, see if it goes away with rest, ice, and aspirin. Maybe have her drink some Tonic Water (has Quinine in it) which helps with leg pains. If all that works, ask her doctor about Quinine tablets for the leg pains, also Vitamin E has proved beneficial for pain. Perhaps a physical therapist can set your daughter up with an individual exercise/stretching plan she can do at home. I would suggest getting that back pain checked - I don't want to freak you out, because she just may have over-exerted herself, but get her kidneys checked. There may be an infection, she may need to drink more water to stay hydrated. Hope this helps. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hi , I have 13 year old son with CMT (not sure which type yet). He also gets leg pain he describes it as burning and sometimes cramping and back pain which he says isn't sharp more of a dull ache. He is going to have an MRI of his back on the 27th to make sure everything is ok. I think their backs can be affected if their hips are out of alignment or maybe their back muscles have to work harder to make up for their legs. He has problems in gym class. He had to run the mile yesterday even though I sent a note to school asking that he be excused from running it. He said the gym teacher was running with them and they had to finish before him to pass, my son couldn't keep up so the gym teacher just kept saying " you can do it " . No he can't!!- I was so upset. He said he could barely breathe and was about to throw up. He said he has trouble breathing sometimes(not during exercise) - it is like I am breathing but I am not getting any air. Should I be worried? I have read that CMT rarely affects breathing. He is tired a lot of the time, but I don't know if that is a normal teenage thing or a CMT fatique thing. Well I have gone on long enough but I hope it helps to know your not alone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hi , Thank you so much - this is such a worry! and you never know who to turn to for the best advice. You should see someone at your son's school and give them some literature on this condition. I have printed off a teacher's guide which is on the English website - I take it you are from USA. If you need any further advice, let me know - we are seeing physio tomorrow but she has never had back pain only leg pain every so often. What do you give your son for the leg pain? It's funny - my daughter since the day she was born has loved her sleep and I have never connected it with the CMT, my husband just likes to brush it under the carpet and I am the one left worrying endlessly! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Hi My 14 yr old son is not yet diagnosed but if he does any high impact sport or long term walking etc he awakes unable to walk for a period of 6 to 7 hrs and if he does something using arm muscles etc he normally has pain.He describes the pain in his legs as numbness but when he goes to stand its pain. Then as it comes back to normal he describes it as i am getting the feeling back in my legs mum.As i said not diagnosed but i hope it helps. Lesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Hi , When I was in grade school & high school, my mom (who doesn't have CMT) would go in and discuss the situation with the instructor of the PE class. I was always judged on my own scale and not compared to my class because naturally I couldn't keep up with them. That way I got to socialize with my friends and the physical activity, but I got it on my own terms. I still got the teasing and jokes on occassion, and they hurt sometimes. However the class helped figure out what my limitations are and what I could challenge myself to do. It helped tremondously that my mom did that for me. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 In a message dated 10/12/2006 9:38:36 A.M. Pacific Daylight Time, shelleyg34@... writes: I have a 12 year old daughter who has type 1a. Every six months or so she suffers with severe bouts of pain in her legs which specialists have put down to growing. Is your daughters P.E modified? With CMT every muscle works a little different to make up for the muscles that don't work. I can throw my back out getting out of a chair. Doesn't take much to hurt ones self when you have CMT. I have my kids backs checked for scoliosis (sp) once a year because that is also common with CMT and back pain etc.. Quote Link to comment Share on other sites More sharing options...
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