Not sure where to put this, but are any of your boys taking erythromycin for gut motility? Carter (6) has been having stomach aches for over 2 months now, we took a trip to the ER for a distended belly and extreme pain in February and xrays showed a lot of gas but nothing else. He was getting over a stomach bug and they said it sometimes takes a little time for everything to get back into rythym again and to give him gas drops. The gas drops helped him on that occasion but since then he's been complaining about his stomach hurting all the time and gas drops dont help. It's usually towards the end of meals or shortly after he finishes eating and he gets a little bloated. He has good BM's and is not constipated. We saw his GI on Friday and they think that he has a problem with gut motility, that his body's not able to move things along as fast as it should. We were told that for most the 'smooth' muscle isn't effected by DMD but it can be a problem for some. Carter was born with an intestinal closure and had major GI surgery as a newborn which adds to his 'risk' of the problem. We'll be in Cincinnati Thursday and will discuss it then, but I'm curious if any other boys are on erythtomycin to keep their GI tracts moving or have problems with 'smooth' muscle function.

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hello my son is 24 with dmd and has been having stomach problems for 5 yrs or more he had his gallbladder out 4 yrs ago but problems continued they had him on zelnorm but it was pulled off the shelfs because it was causing problems heart issues then they tried reglan but that didnt seem to help they tried previced still was having stomach bloat then they did that time study on his gut motilty and as supected he has little motility finally like 3 yrs into it they placed a gjtube to feed and the other to suction gastric content its been a very horrible on going issue hes been in and out of the hospital 7 times sence december for stomach issues he finally been home like 5 weeks in a row hopefully things have settled down but he now has 2 seperate tubes g&j he uses miralax 17 grams also apadhoplisis and flush extra fluid he get feed at a rate of 70 ml an hr isosource 1.5 and he get a total of 1000 ml a day and he eats very little orally but all in all hope all is under control for now anyway or and he takes 40 mg of protonix daily .dont know if this has helped but dont feel your alone with dmder with stomach problems dr here dont think it related but not so sure!
When Justin(now 14) was 7yrs old, he came down with rotovirus and ended up in the hospital 4 times in 3 months. After he completely got over it, he couldnt eat more than a few bites of food before he started complaining of his stomach aches. He dropped down to 34lbs and ended up in the hospital. We tried erythromicin but some of the side effects he experienced were stomach bloating and cramps. He has gastroparesis, which is basically a slow emptying stomach. He ended up with a feeding tube. He eventually was able to eat enough calories to sustain him, but we have kept the feeding tube for meds and hydration.

--Samantha

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