Hi everyone! As many of you know, my son, Ryan was diagnosed with DMD on May 29, 2008. He has always been delayed in his milestones. He has almost no communication skills and very limited social skills. Besides obvious weakness, he has shown no other signs of DMD. On Thursday, I noticed he was sort of limping, dragging his right leg as he walks. He still runs, and doesn't limp when he runs. I was wondering if anyone can offer any advice. We are not sure if he is doing this because he hasn't been in physical therapy for a little over a month, and he is getting weaker with no therapy, or is he showing signs of the disease all of the sudden and this early? My husband and I are very worried - what's to happen if he shows signs this early? Please help if you can!!! Thanks so much! =)

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Perhaps he has just fallen and strained a muscle on that one leg and it is sore. If he has limited communication skills and can't tell you that would really make it hard to know what is wrong. My son (7.5) has fallen or jumped (playing), strained muscles and walked with a limp a few times. One time I remember him limping for over a week and there was yet another time that he crawled for a few days unable to walk. He can't recover from these things as quickly as my other children can. There is also some muscle cramping that my son experiences once in a while when he has over done it which can cause some limping. It is extremely worrisome when these things happen and I have even taken my son in for X-rays to make sure there are not any fractures before. Haven't experienced anything like this lately but I do remember the limping episodes like you mentioned when he was a little bit younger. If in doubt take him in for x-rays. Thier bones are more easily susceptable to fractures, especially if they are on steroids.
Hi Jennifer,

Karen is right, it may be something - it may be nothing. The only way to know for sure is to have him checked. You might want to consider having a complete examination not just a doc looking at his legs. That way you can rule out other possible less obvious things, again just to make sure. Sometimes I think docs forget everything is connected regarding DMD boys bodies and they take a quick look at the part that is bothersome.

Let us know how it works out,
we are thinking about you
cheryl
Hi, my names Johanna and my son was diagnosed when he was 20months old. He showed signs of muscle weakness since he was a baby. He was never able to crawl, he was unable to sit himself up until he was 15months, he also could not pull himself up to stand unaided until 18months and now that he is three he is still not able to run, jump or climb stairs. Our neurologist can't explain why this is happening so early, Dylan wears AFO's which are leg braces and this helps him to walk better without falling so often. Dylan has a physio once a month and swims one day a week, we do his exercises and stretches each day at home. He is on steroid therapy which has helped a great deal, is Ryan on steroids? Have you spoken to Ryan's Nuerologist about your concerns? Dylan also sees a Osteopath which seems to help him move more freely. I'm not sure if I have been any help for you but I hope so. Kind regards Johanna
Jennifer

I can't say I have an answer and this is still very new for you with the recent diagnosis. All I want to share with you is that these kids are amazing and although you will look at them and experience all the emotional feelings over and over again, love them, care for them and protect them from excessive strain on their ever weakening muscles, BUT let them live and experience the joys of movement and childhood whilst they can.

Protect them and find the team (medical professionals and support services) you are comfortable with to support you in your road ahead, make a decision on how you will treat them and stick to it. There is no wrong way. I would however recommend that any concern you have, get an opinion on the concern from a trusted resource or professional. Dont wait and see, trust your instinct, it is seldom incorrect.

Your son has his life ahead of him and he lives in an amazing country that I hope will find a solution to all our fears. Never give up hope but also never forget to appreciate each day as they all must count.

In terms of signs, my understanding is that there are no real trends, if he shows a specific sign early, it does not mean he will have everything early and the other way around also applies. Take time to research the PPMD site and become a learned parent on the condition, then base your life on what you beleive and understand to be the best option, trying to keep up with ever increasing opionions and trends will drive you crazy.

Regards
Colin
Kelvin had "signs" from the time he was born (tiny things), but mostly from the time he was 12 months old (when he started walking), until he was 3. Then, they nearly disappeared, all but some fine motor skill problems, etc. This is the reason that his doctor just didn't think anything was wrong, so, all kids do seem very different on here. Kelvin has improved over the last 3 years, he has in no way gotten worse, it is hard to even make folks believe that he has DMD. It is strange to us, but we are told it is a Cinderella period where his muscle growth is overpowering the DMD. We just found out this year, so he didn't improve because of anything we were doing due to his DMD. So, even if your son is showing "signs", he may improve like Kelvin over time, prior to any progression. I hope so for your Ryan. Michelle

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