I see a lot of mention of leg cramps and I was curious as to when these occur. Kelvin has only had 1 ever (well, I think that was what it was, he complained his leg hurt one time during the day). He did have some leg pain when he was only 1 or 2 years old, but none since. He used to say, I can't go farther, my legs hurt when he was very young. Are the cramps when they are older typically? Kelvin is turning 6 in a few weeks. Just wondered. I just haven't seen anyone explain them and I guess I just wanted to know if there is a common time for these. Thanks, Michelle

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Even I used to wonder what a leg cramp is until my son had one. On the day of 'over activitiy' his left leg kind of stcuk at a tip toe position, he could not walk with that. we did warm barh and massage and he got better. He usaully does not have pain or cramps mainly because he limits his activity according to his body needs.
Connor is 3 and has not expressed issues with leg cramps as of yet. I do notice that when he's done too much, I can see a major change in how he walks. His walking lacks good form. His leg/foot will floppily (if a word) move with each step. In these cases, we have to watch him closely to prevent tripping over his own feet.
My son Jared is 7 and will turn 8 in November. Before he got diagnosed , he woke up in extreme leg and cramp pain and could not walk normally for about 1 week. He was about 5 1/2 at that time. He complains of leg pain and cramps periodically and now just since Friday he has had non stop pain. I find I am having to rub his legs more. He has BMD though. I think his problem is he does not know when to stop as he is a very active child and he does not want to slow down until at night near bed time and then it is too late. I am still at the stage of just waiting and watching and seeing how things progess of which I hope is very slow.
My son gets these when ever he over does it. They are not just in the legs either. He will get them in his arms and has even had them in his neck. They seem to be increasing as he gets older and always when he has done too much. Before he was 5 he never used to experience them.
My son is 17 and his legs and feet hurt if he is standing too long. Even after a long shower his legs will be really red and he says they hurt. When he sits down they do start to feel better. He has never had any problem with cramps.
My son (who is 7.5 now) started steroids at 5yrs old. It wasn't until after 5 and really mostly in the last year that he started getting the muscle cramping so I can't say as the steroids made a difference for my son. I really hate when this happens as sometimes it can be quite painful for him. He asked me last week why this is happening to him and why no one else gets it. I had to explain it was because of the muscular dystrophy and that this happens when he does too much.
Rhiannon Hubbard said:
Carter started complaining about his legs hurting right around his 3rd birthday, before we got the diagnosis we thought that he was faking. =( The Ped. ruled out quite a few different things that they though could be leading to leg pain, and told us he probably wanted to be carried/ride in the stroller, that he just didn't want to walk. Once we found out about the DMD we of course felt terrible and started to pay more attention to when he would complain. It still happens pretty frequently, but we know ahead of time now to be sure we always have the stroller, have him ride in shopping carts, etc.. I'd say about 75% of our trips to the playground are cut shorter than he'd like b/c he starts limping and complaining of leg pain. He's usually good about self-limiting but some days does need to be made to take a break, even though he's limping and in obvious pain. Our PT says to try not to let him get to this point, but it's hard b/c he has varying limits depending on the day and he's so active (not to mention he's a 4yo boy! ;)) He's never complained that his arms hurt, but will say that they "feel heavy".

For others replying to this thread, did anyone see improvement in pain after starting steroids? We're hoping that once he's on Deflaz. he'll be able to play longer.

James still gets sore legs, and he's been on deflazacort since he was 2. However, he may have been too young at that stage to have the pains, so who knows if the deflazacort has made any difference. He does get tired easily, and sometimes his legs hurt when we are massaging them, but generally he is okay. He rarely complains of pain, though by the sounds of things this will get more common around 5-6 years. We take an extra stroller just for him whenever we go out for a longer period of time or if there's lots of walking, or put him in the trolley at the shops, and he usually takes the offer of a ride quite enthusiastically. We have actually just bought a "buggy board" so he can stand up behind my 6-month-old's stroller on short outings (and so we don't need a second stroller), and he thinks this is so so cool!
It's hearbreaking for me to see this happen to my son and to answer these kinds of questions that he recently asked. I try to keep the mood light and that it's not the end of the world. The cramps come and go and when he is not experiencing them he is just a boy enjoying his life completely. My Daniel also told me last week that he was so happy and lucky to be a kid and wasn't it great to be a kid like him? With all the work I do taking care of my 4 kids (he is well aware of that and say's I work too much) he says to me -"don't you wish you were me!" "I do!, I do !" I say. This makes it all better. So while the cramps may come on once and awhile my son is not suffering that much right now. I know when he starts to decline more there will be more questions and I expect the answers will get more difficult.

Rhiannon Hubbard said:
=( Just this weekend we were at the park and Carter was playing with a little boy who was a year younger than him, they were having a blast, going around the playground and down the slides; but after about 10 minutes Carter started limping and told the little boy "my legs hurt, do yours? let's sit down and take a break" I don't think the other little boy even heard what he said, but sat down next to him for a minute. He ended up getting up way before Carter was ready; and we ended up going home, blaming it on the puppy- said he was too hot. It broke my heart, but at the same time I am SO glad that he doesn't realize yet that not everyone has the problems he has. I dread the day he realizes and asks why his friends don't need to rest as much or why their legs don't hurt them. He knows that his friends can eat foods he's allergic to, etc.. but for me that was such an easy thing to talk about compared to this.

Karen Barnett said:
. I really hate when this happens as sometimes it can be quite painful for him. He asked me last week why this is happening to him and why no one else gets it. I had to explain it was because of the muscular dystrophy and that this happens when he does too much.
Kelvin feels so good now and has so much energy that he can go all day long (which may not really be good). He never had much trouble prior to steroids, but would get sleepy or tired pretty quick. Michelle


Rhiannon Hubbard said:
Carter started complaining about his legs hurting right around his 3rd birthday, before we got the diagnosis we thought that he was faking. =( The Ped. ruled out quite a few different things that they though could be leading to leg pain, and told us he probably wanted to be carried/ride in the stroller, that he just didn't want to walk. Once we found out about the DMD we of course felt terrible and started to pay more attention to when he would complain. It still happens pretty frequently, but we know ahead of time now to be sure we always have the stroller, have him ride in shopping carts, etc.. I'd say about 75% of our trips to the playground are cut shorter than he'd like b/c he starts limping and complaining of leg pain. He's usually good about self-limiting but some days does need to be made to take a break, even though he's limping and in obvious pain. Our PT says to try not to let him get to this point, but it's hard b/c he has varying limits depending on the day and he's so active (not to mention he's a 4yo boy! ;)) He's never complained that his arms hurt, but will say that they "feel heavy".

For others replying to this thread, did anyone see improvement in pain after starting steroids? We're hoping that once he's on Deflaz. he'll be able to play longer.
This made me think, there are all kind of muscle rubs out there, are any of them safe for the boys, and would they help with pain? I use a natural oil that has herbs for muscle relief when I massage. Michelle
Our son has been on deflazacort for 9 months and he is much stronger and much more active than he was. But he has mentioned that his legs hurt sometimes while on deflazacort.

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