My 9 year old son hs been on Deflazacort for about 5 years. Recently he has been complaining about feeling like he needs to urinate but then can't go (typical UTI complaint). These symptoms usually come in the evening and has gotten worse over the past week tothe point where he is up trying to go every 5 minutes.. According to our pediatrician today, there are no signs of a UTI. Has anyone heard of any other problems that might be cause these symptoms? I just don't want to miss anything that might be DMD or steroid related.

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Does he have any pain at all? My son is 18 and is being treated for kidney stones and having had one myself at first I thought I had a severe UTI. My son has never taken steroids, his are most likely from the seizure meds he takes but a quick look on the internet shows that those who use steroids have an increased risk because the steroids pull calcium out of the bones. It might be worth asking about.
we have 2 sons, both on deflazacort, ages 10 and 7. the younger one, max, had these symptoms on and off, and we recently went to cinci to see dr wong. dr wong noticed by looking at xrays that max was very constipated, she said constipation is very common in kids with duchenne, and that you wouldn't always see problems with BM's when the kids are constipated, but the "backup" of the bowels can cause pressure on the bladder. we use miralax every other day. and we've noticed not only have max's symptoms almost gone away, but his stomach is much flatter (poor guy!) we had gone through so many uti tests, and it was a very easy fix, miralax just softens the stool to make things easier to pass. i hope its helpful...jenn
My son is not in pain, but kidney stones was something I considered. I am not as faimiliar with the symptoms of kidney stones as compared to UTI symptoms. I am curious about the constipation affecting his bladder. Because miralax is such an easy fix, it sure can't hurt to try it and see if it helps. I'll let you know....
I'm going to second Jenn's post. We had the same issue - wanting to pee all of the time. We haven't started miralax yet - just prunes, but already, there is a difference. Dr. Wong could actually feel stool in my son's intestines through his belly. I was skeptical about this as a cause of his stomach pain, too - paranoid about the bleeding ulcer thing. But she was right, as always - he was just constipated.

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