Hi, I hope that you are all enjoying your summer.  I was wondering if anyone couldtell me if they have had any similar experience with their sons.
In the Spring, Lucas (5 years old) has a few episodes where he experienced a lot of pain in his legs.  He would be fine one minute and the next he would be crying and begging for me to make his legs better.  His legs were so sore that he could not walk or even bend his legs to sit on the toilet or my knee.  We would treat this with Tylenol and either heat or ice and within an hour he would seem better (no longer crying) but would limp for the remainder of the day and was much less active.
He did not have any episodes for the last month, until yesterday.  When he woke up yesterday, he was upset and complaining of pain in his arms (the inside of his arms over his elbow) when I felt the area that he was indicating there was a bulge that I could see but withing 15 minutes it had mostly disappeared and he stopped mentioning it as much.  Then later that day at playschool he was playing and then stopped and sat down and said that his legs were too sore.  When I went to pick him up, he was having trouble walking and his legs looked really knotty.  
The physiotherapist noticed an indent in his upper spine that she was concerned about, so Lucas has had an xray last week and we will get the results next week.  Dr. Dooley also wanted us to be on the watch for Coke colored urine, which we have not seen.  I guess he is looking for signs of myoglobinuria.  
We are worried about what is going on and concerned over seeing a bit of physical decline in Lucas in the last week. I wondered if perhaps he just needed his dose of steroids increased, but I was hoping to leave that at 12 mg per day.  We see Lucas' pediatrician next week, but somehow Tuesday seems pretty far away right now.  


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Joshua too has some episodes of sore legs. When it did happen it was either raining or the humidex was extremely high. When he did have the sore legs, he would sit in the bath tub with his spa mat and he would be fine within half an hour. As for the myoglobinuria, Joshua had one episode of dark red urine. He was 5 as well. After that episode we started the ferrous gluconate iron supplement to work with the calcium. We haven't had an episode since.

The soreness and stiffness is not unusual. Overexertion is difficult to control when they are that age. Our situation was a bit different because Noah never had the abilities other kids with DMD had, but his onset has not been as severe.

In our case the symptoms were more like "truckers legs" with long periods of inactivity followed by short periods of activity resulting in stiffness and pain. We make sure we massage/stretch his legs at night with "Blue Emu" w/Glucosamine MSM. The kind I get at Walgreens is more mild on the skin. The cream makes things better - there are no cures.

And drinking water is important if you can get him to do that. We had to switch to flavored water to make sure Noah was getting hydrated. But it is still difficult to get him to drink enough water.

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