Re: ? any kids out there with g-tube for dysmotility/Kass

[Guest guest]

Hi Kass,

Thanks for asking. We did not have any studies done - he's had so many tests and invasive stuff that we're waiting on this one. If we have to, we will, but not yet. Asher had an abdominal x-ray in Dec b/c of severe abdominal distention along with loss of weight and all they saw was lots and lots of gas. Then, when they put in his g-tube, his colon was "incredibly distended" full of air. Between his old problems of constipation and his very infrequent (altho soft) bowel movements and his abdominal distention, they dx him with GI dysmotility. He doesn't get the discomfort or distention on a liquid formula g-tube fed diet, so he's okay right now. I know that, at some point, we will have to have the studies to determine what parts of his GI system are not working (i.e. muscle or nerve, etc.) but we're not ready yet. Also, I wasn't ready to start him on some of the drugs b/c of the side effects.... so that's where we're at!

Thanks for asking!

Anne R

[Guest guest]

Kass,

Thank you so much for sharing your thoughts. It is really helpful and gives me more to "chew over", so to speak. I'd love to see the response in Asher that Abby had. I, too, tend to think that Asher's problems are more in the intestine b/c those are what are so dilated. We will probably be looking into testing in the future. Once I get Shoffner's results (I've been told possibly this week), then we can look at what we need to do. Will you help me clarify something? Is it possible to be constipated if your bowel movements are very very infrequent (like once a week b/c of a suppository) yet they are soft? Asher's been on Milk of Magnesia to soften things up and boy is it soft! But still not regular, so now he is on Mineral Oil. The doc said that if that doesn't work, we will try Miralax. And, I don't think the mineral oil is working. I mean, he's still not having bowel movements very often - yes, they're soft, but they're not happening enough!

Can you help me clarify that?

Thanks again,

Anne R

[Guest guest]

Thanks, Kass! It does help.

Anne R