My son is 10 and was diagnosed with DMD at 5 yrs old. He is still ambulatory and in fact quite active. He can't run as fast or for as long as his peers, and shows some upper body weakness but for the most part functions like a healthy child...so so grateful. He wears leg braces at night but has no other limitations and is on low dose prednisone. He has been complaining of pain in his legs and other areas. It is not cramps but more like aching. From what I have read, this is not a typical DMD symptom. It is my understanding the pain comes with DMD once the child is non-ambulatory due to lack of core support and stiffness from minimal movement. Does anyone have insight on what is causing this? Is it possibly an unrelated condition?
On a related note, his complaints of pain or tiredness seem to be mostly preceding things he would rather not do like school, homework, errands, etc. As most boys his age, he prefers to play video games. I am concerned that he will decline more rapidly if I allow him to be too sedentary but I want to be sensitive. My mother keeps telling me I should allow him to decide, but I feel like as a parent I need to make sure he does what he is able to do. How can I tell when it is ok to nudge him on to an activity?
I can help with that probably. I have Duchenne. Things might be a little different for me, because I'm a girl, but I find that I have aches after having a particularly active day. I am still mobile at seventeen and experience these. Whenever I'm in pain I get lethargic, and may walk with my head down. Sometimes I'll be stiff the whole time I'm sore just because I don't want to do anything to make it worse. My pain is usually in my legs or shoulders as well. Also, if your sons haven't been sleeping well, they might be experiencing pain or having trouble relaxing their muscles. As for the cause, yes, it's contracted muscles that we can't relax. I hope this helps and they start to feel better.
My son is seven. He too often complains about the pain mostly in legs sometimes in his shoulders. From my understanding the pain is caused by the contraction of the muscles. The pain usually occurs after he's done had a very active day. LikePT and school. It is hard to know how far to push them. I don't want my son to become dependent on others. I tell him to strive for independence. My boy is only seven, he has no idea what that means. He just wants to be a kid and play.