Hirschprung?

[ghengis]

My 4 year old niece (DN) is having a biopsy shortly to see if she has this. Obviously I've looked on websites to get more info. but first-hand experience is more useful! Has anyone experience of this and what are the consequences if she has to have a colostomy? She is due to start school in September and her Mum is anxious that it may cause her difficulties. Thanks.

Not much to add Ghengis, except to say that for a while we thought DS1 might have this. However the medical profession quickly dismissed it and said that babies ( he was only 6 months) are usually diagnosed very early - i.e. they don't pass meconium at birth.
As it turned out he just had an extremely slow bowel which has since been treated.
4 years olds seems quite late (IMO, but I'm no professional) to be diagnosed - what are her symptons/problems if you don't mind me asking.
We found lots of stuff on the web, so DO keep looking. Seem to remember I found a really good support group of sufferers, which may be useful for DN/ her mum.

DN has had problems with diarrhoea (sp?) and constipation since birth but I am suspicious that she does not get a balanced diet. Whenever she stays with my MiL (the only time I see her) she has an excellent appetite and her stools look fine to me.

Have had sneaking doubt about DSiL for some years now re. munchausens by proxy, but don't know what to do about it. It seems cruel to put DN through a rectal biopsy (albeit under gen. anaesthetic) just to get attention. DN is very tall for her age but weighs just 2 stone 10 lbs. My DD is 2.5 and weighs 2 stone.

Any advice?

There's someone else looking for info on another thread - maybe you two will manage to catch up with each other now.

My friend DS is 8 months old, he has had problems with constipation since a few months old and is on lactulose daily. Recently he passed some blood in his stools,so the hospital has begun to investigate.ghengis, like your DN , he had a biopsy this week the results take 3-4 weeks, so he will go for an appointment in 6-8 weeks, if it is Hirschsprungs he will need part of his bowel removing at a later date, that is only if he is proved to have it. It is diagnosed by the absense of nerve cells in that part of the bowel.It is not likely that a colostomy is needed as the surgery is usually done on the lower part of the bowel, they call it a 'pull through' as the affected part of the bowel is removed and the remaining part is pulled through and rejoined.Like you I would like to hear from someone first hand, not just from info on the net.

I'm not sure if this will help but my daughter's surgeon works at Chelsea and Westminster hospital and I think he has been involved with Hirschsprung cases. I seem to remember finding an article about him on the internet when he was first suggested as a surgeon for her. As is often the case, the page has no disappeared and I don't have a hard copy

However, all being well, we are seeing him on Tuesday and, if you like, I will ask him if he has treated patients with Hirschsprungs. He was very good about putting me in touch with the mother of one of his former patients when he took on DD.

Let me know ASAP as we are planning to travel down on Monday afternoon.

Sorry - 'now disappeared'

Thank you for your reply, unfortunately we have not got a diagnosis yet so I am probably jumping the gun for the present time, I f it is diagnosed I suppose our local hospital my have similar parents we could contact.

If you do get the diagnosis you could try Contact a Family . They couldn't help with my DD but it looks like they may be able to help you.

Good luck.