Hirschprung`s disease

[mara05]

My baby was born with hirschprung`s disease, all of the large intestine is affected. He is 9 months old. The doctor did a ileostomy and later, he will do the pull-trough. Your experiences could be helpful to me. Thank you.

can't offer any advice mara but wanted to say sorry you're baby is having to go through this.

Hope everything turns out ok for you all.

Thank you

that should be 'your'

mara - maybe no-one has come across this condition before but anyway its always quiet at weekend.

Can I suggest you bump your thread on Monday at different times of the day and someone may be able to give you some good advice or help?

I think this is what the ds of a friend of mine was born with. He is 13 months and also has Down's. His intestine was operated on twice in his first three months. I will check with her and get back to this thread. I'm sure she would be happy for you to contact her. Can you CAT me?

Hi mara. my neice has hircshprungs disease and was born with it. she had done what your little boy has had and wore a colostomy bag for about 9 months then did the pull through. she has had several operations and suffers with constipation, but other than that she is a perfect 4 year old and is fully toilet trained etc. i mean as a baby she went through a lot of hospital admissions and had 3 ops but now other than the constipation now and again she is fine.

if u want me ask my sister any questions about hirschsprungs disease let me know. she knows more about it than me.

Just bumping this for u mara.

I am very sorry to hear about your DS mara05. (only just seen this thread).

My DS1 had suspected hirchprung's when he was born. His symptoms in the few few days of life were very similar. However, it turned out he didn't - it was another congenital problem. (His problems were not related to the nerve control in the bowel - which, if I remember correctly that is what triggers the problmes associated with Hirchprung's). However, he did have to have a large part of his large bowel removed in an operation similar to a pull through - think they called it somoething like a duodenumduodenalostomy. But basically it meant removing the bit which was causing the problem, and then stitching the remaining bits back together again.

I have never spoken to anyone who has a child with a similar thing to mine, and know it would have helped me to discuss it at the time, so do please ask anything if it would help (although I appreciate it is not entirely the same as yours). Nx

mara05, wanted to bump this as wanted to see how your ds is doing..? Our ds was born 17 weeks ago with hs disease and wondered if you could chat to me about it further....

Not sure if you are still around..??