4 year old and Hirschsprung

[Housechaos]

My daughter suffers from the severe end of constipation, she has been so poorly with it recently. Out of interest, has anyone else had a late diagnosis of Hirschsprung Disease? It was mentioned at a consultant appointment today but I know it's rare for it to be diagnosed beyond the baby years.

Hey @Housechaos I’m sorry nobody responded to your message. It isn’t nice when that happens unfortunately.

I wanted to ask what happened with your daughter? What was her initial symptoms? My son is 6 months old and has had chronic constipation since I can remember. No issues passing stools after birth or weeks following. No issues with weight gain or anything else. However, he’s always strained and struggled to pass stools, even when EBF (liquid poops). Of course when he started solids he became constipated for 7 days and I ended up using lactulose to initiate a bowel movements.

A friend's father was diagnosed at 6, and had surgery then.

I was diagnosed at 10 days having never passed stools of any sort, or fed at all, so if you do now have a diagnosis, I'm happy to talk about my experience, though I appreciate that what your DD may be going through and what I had are not identical.

@furballfun sorry to hear of your diagnosis. Very kind of you to share your personal experience. My son has courgette in his stool which he ate 8 days ago. I found this unusual. He also strains for hours on end. Sometimes keeping us both up all night trying to go. Sometimes he will leave a small stain in his nappy; either going later in the day or a day or two later.

Does this sound like normal constipation to your or something closer to HD? Sorry to bother you with this. It’s so difficult to be taken seriously.

While I can't tell you if that's Hirschsprung's Disease or not, it definitely doesn't sound right, or pleasant.

Are you using lactulose or movicol at the moment? I would anticipate they would be tried first; I have friends whose son is on movicol long term as his bowel/rectum had become distended due to constipation. However Hirschsprung's isn't suspected for him. If you are concerned, please take your DS to the GP, though be aware they probably won't have heard of Hirschsprung's - mine had to look it up.

Just to reassure you that even with a more significant extent of Hirschsprung's disease than your son can possibly have, I had successful surgery over 40 years ago, I have full bowel control and sensation and use the toilet normally (and virtually never get constipation!). So I would hope this can be sorted out one way or another, and your son can lead a normal life - I hope that's encouraging.