Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 Hi , I do not think you are alone in this colon motility or dysmotility stuff at all. It is very common in mito and, from what I read, often one of the 'earlier' symptoms. Are you working with a gastroenterologist (a pediatric one?)? We too have tried every laxative under the sun and some medications (zelnorm). My husband and I were not comfortable with the side effect risks of reglan (altho some members in this group have had wonderful success with it) to use it so we didn't try that. Basically, Asher can still have a bowel movement if we give him a Fleet babylax suppositories... so every 3-4 days he gets " bottom medicine " and the poop comes out. It doesn't matter how soft it is - he can not poop w/o " bottom medicine " - so we know somethings up with his motility. We have decided to seek a specialist in Boston who deals with colon motility problems in kids and Asher will have a colon motility test done in Feb (I hear there are only a few centers in the country who do this type of testing). The Boston doc, who has already seen Asher and had his bowels x rayed and heard his history, etc., is suspecting strongly that Asher needs some type of tube (like a g tube but goes into the top of his intestine) where we can put something in like salt water and flush his bowels out once a day while he's sitting on the potty. It's sort of like an upside down enema - instead of having to squirt it up their bottom (which is quite uncomfortable), you just add the water at the top and the poop comes out. Alison on this list mentioned a different type of tube (Asher's going to get a cecostomy) that goes in where the appendix is and is supposed to be really helpful in washing the poop out. So, maybe that's why they were asking about his appendix? Ash had a gastrographin (like Barium only NOT constipating) enema today so they could xray his belly and see if the structure would work for the cecostomy tube. Does your little guy eat much? When Asher's motility started to get really bad, he stopped eating much and was basically starving... we had to have a gtube put in before we even knew what was going on. HTH Anne R - mom to Asher (almost 4!, Complex III defect w/ possible Complex I defect) and Sam (8, primary immune deficiency) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.