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Old 06-17-2009, 10:22 PM   #1
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Hirschsprung's disease and A.C.E.

My 7 year-old son with DS has Hirschsprung's disease and we are having a rough time of it. His Dr. says we may want to consider an A.C.E. to help control his bowel function. Does anyone else out there have any experience with this?

 
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Old 09-22-2010, 12:59 PM   #2
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Re: Hirschsprung's disease and A.C.E.

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Originally Posted by Coffee lover View Post
My 7 year-old son with DS has Hirschsprung's disease and we are having a rough time of it. His Dr. says we may want to consider an A.C.E. to help control his bowel function. Does anyone else out there have any experience with this?
Hello, I was researching other health topics and DS and saw your post. I have posted similar questions to other boards and haven't got responses either because hirschsprungs with DS kids are hard to find out there. Anyway, my son is 5 right now with DS and HD and we went to the bowel management clinic in cinci and at the end of the week, the doctors suggested the ACE malone as well. Here it is a year later, and we haven't decided to do it yet. We are hoping some miracle food and/or drug will help his bowels firm up and we could potty train him.

Did your son end up getting the surgery? I feel I''ve tried everything under the moon to get his bm's less frequent and firmer.

I would love to talk to you about your experiences! Thanks, Rene

 
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Old 10-15-2010, 09:06 PM   #3
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Re: Hirschsprung's disease and A.C.E.

Thanks for responding to my post. Unfortunately things got much worse for my son and he now has a colostomy. I wish he didn't have to have it, but I will say he is healthier and happier having this.

I'm sorry your son is having a hard time and I hope things will improve for you all. I am always open to sharing our experiences!! Carol

 
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