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Discussion Starter · #1 ·
I want to warn you,this might be too explicit for some
We have adopted three boys,for a total of 6 kids.Two of the youngest three have Down Syndrome.We brought Samuel home when he was 3 months,after he had undergone 4 tummy surgeries already.He was born(aside from Down Syn.)with Hirshprungs Disease(basically a bad bowel obstruction)then he had duodenal atresia,duodenal stenosis,then a kink in his intestine.throughout all this he had a significant amount of his bowel removed(can't remember how much)Now he's basically healthy,and eats very well,etc.--but he ALWAYS has poop.We never change a diaper without poop,we can't wipe his bottom without more poop coming out,he literally poops constantly.It's not like diarrhea,it's a strange kinda pasty/grainy like---VERY foul smelling,in a acidic/almost adult stool kind of way.(Sorry--but I warned you!)I am so frustrated because there's no way we'll be able to potty train this kid when he inadvertantly is pooping non stop!I know that he doesn't even realize he is.The GI docs are kinda stumped,but I am just searching for answers because the only action they've offered is some pretty grueling testing,including a 6 hour stomach motility study,where Samuel will have to lie still for the whole 6 hours with no sedation while they see how the stomach empties,digests,etc.Um,he's three?!I can't even imagine one of my typical children laying still at 3 for that long--let alone the fact that because of the dev. delays-- rationalizing with him is pointless sometimes!
If this sounds even somewhat familiar to any of you out there,please feel free to throw out your ideas,I'm pretty desperate!
 

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I don't have any experience with your son's medical issues, but maybe my daughter's experience and the experience of other children like her might help you a little. She has spina bifida and since she is, fortunately, very healthy the major issues we have to deal with on a daily basis are bladder and bowel control. The goals are to keep her from having little or no urinary track damage over her lifetime and to help her to achieve social continence. The urinary continence is fairly easy because she is catheterized.

As for pooping issues, first I should say my daughter is 2 so there's no issues with her still being in diapers. She tends towards constipation rather than constant pooping, but because she seems to try to go during the day she often has a slightly dirty diaper whenever we cath her. We currently give her a little Dulcolax suppository every day to make sure she goes every day to keep her system moving. As she gets older we will need to adjust that on an ongoing basis. Most spina bifida kids have a fairly rigorous bowel movement routine to maintain social continence. The idea is to make sure the system is completely cleaned out once or twice a day so that no accidents occur when they are out of the house. Many do an enema each morning to completely clean out there system. Others are able to do well with a laxative each morning and evening. It seems to be largely successful for them, but the routine varies from child to child.

It sounds like your son has had enough major problems with his intestines that he may not be able to have complete control of his bowels. If the doctors aren't able to provide any ideas for correcting the problem and good bowel management program may be a good step for you to take. Good luck with it though. I know that have poop issues is difficult to deal with. It's not exactly something easy to bring up in polite conversation with other moms.
 

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I just have a moment . . are you talking about the manometry study? It might be a good idea. I've heard good things about that test and I wish I could get if for my dd, who is only 16 mos. It sounds tough but it can provide some very good answers possibly.

Has he had a gastric empty scan done where they can see if he has dumping syndrome?

Could it be allergies? Have you tried to maybe make his poop firmer with rice or bananas to make him more regular? Have you tried live probiotics?

I'm just throwing some ideas out there for you. I do hope you get to the bottom of this.
 

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Discussion Starter · #4 ·
Well,no-he hasn't had the gastric emptying study done,maybe I should ask about that first....?I am familiar with that because our other guy with Down Syndrom is tube fed(partially now--YEA!!)and he's had to have those done before because he has an incredibally slow empty.Samuel does eat at least two bananas every day and yogurt at least once a day.It's almost like his rectum isn't able to push all the poop out,like a tube of toothpaste,there's just always some "right there"!I hope we get some answers soon,too.
Thanks for your help
 
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