Help with signs and symptoms of Hirschsprungs

Hirschsprung's Disease
#1

Hi to everyone.I understand that Hirschsprungs Disease can be a very serious disorder.I have been doing research on line for my son’s constipation problems and have found out that Hirschsprungs doesn’t always present it’s self at birth.I am just wondering how many of you or your children were diagnosed later than 6mo old and what kinds of symptoms you or your child had.

My son who is now 4 has been constipated since 7mo old.He is living on a laxative and we recently had him x-rayed and it came back that he is still constipated while on his laxative.Also he has night wakings 3-5 times a week.I used to think they were night terrors but years of watching him ,he seem more in pain than in a classic night terror.He is growing fine and developing well while on his laxative but still seems to only have a BM every other day.His BM are sometimes ribbon shaped or very thin.While off of his laxative he goesup to 14 days without a BM, he does’t eat much and becomes inactive and in pain.Sometimes vomiting.

I am sorry for the long post but I am looking to see if I should ask for him to be tested for Hirschsprungs when we see a specialist next month.Have any of you expirienced these symptoms with Hirschsprungs.

Thank you very much for you time!
Amanda

#2

I would absolutely have him tested. My son, Chase, was diagnosed early but there are several cases of late diagnosis. Prior to Chase’s surgery he had ribbon like stool even though we were doing irrigations twice per day. I am so grateful for the early diagnosis because Chase didn’t present with typical HD symptoms…he did pass meconium. Your son’s symptoms do sound like HD so I would at least mention it to the specialist.

Jo

#3

my granndson suffered with constipation from birth at 14mths he was taken ill with enterocolitis and septicemia it was found he had hirschsprungs he has since had a colostomy and recently had a pull thru.I would ask to be tested as it is not always found at birth

#4

Amanda,

Just wanted to also say my son was another late dx of HD. He was dx with HD in Jan 2008 at age 4.5 years old.

As a baby he was breastfed and still had severe constipation which began around 6 months old when I gave him baby foods.

It took so long for a dx because the doctors brushed it off and never looked into HD on him. Just a month before his dx he did get 2 negative rectal suction biopsies for HD which the doctor told me she felt it was a false negative. He was getting extremely ill and ended in hospital shortly after it was then we got paired up with a surgeon who took full thickness biopsy which confirmed the HD dx. So I would suggest to see a surgeon & have a full thickness biopsy done whatever you do don’t waste your time on the rectal suction biopsy because it has such a high false rate.

Oh and my son barely got stool out even on laxatives. He would go once or twice a month, so things were pretty bad.

Jane

#5

Thank you so much for all of your responses.I guess I get the feelings from the Drs that I am overreacting and that he will grow out of his constipation.We have changed his diet and added tonesof water and still he is constipated. While on his laxative he goes every second day but he cannot contrl it.He is now often soiling his pants or just making the potty.Hs stool is thin or really runny on his laaaax,but yet the x-rays are still showing he’s constipated. He does’t have a distended belly and he seems (to outsiders)like a very healthy active child. How would you suggest I ask the Drs to look into Hirschsprungs and what can I expect with a full thickness biopsy.
I was also wondering if any of your children with HD would push his/her groin on the toilet or in the car seat,highchair ect to help move things along? My son seems to do this everytime he has to go to the bathroom.
Also when he was younger I would have to help him go to the bathroom by pushing on his legs and pulling te stool out(I know too much info-sorry)or his rectum would open and I could see the stool 3 inches in but not moving out.
Has any of your children had any sleep problems related to pain or HD?

Sorry about being to graphic but wondering if anyone has expirienced any of this.
Thank you for all of your help.I appreciate all the support and I would love to hear any storys about late presenting HD
Amanda

#6

Amanda,

You are a wonderful mother. You are not over reacting by the sounds of it you are under reacting IF anything. I don’t know why, but some doctors (usually the bad ones) make us mothers feel this way. You are your child’s only and best advocate, so don’t wait to come across a doctor who will finally listen to you, take action now! The next doctor you visit, specialist or not, insist on a referral to a pediatric surgeon. There are x-rays that can be done to give a doctor clues, but the only way for a true diagnosis is through a biopsy. My son Joshua, had his biopsy (done through the rectum) under no kind of pain medicine, he was completely awake for it. He was 2 weeks old. I don’t know how still your boy would be so it may be a little different for him, but it most likely would be an outpatient procedure. I’m rooting for you and I know every other mother on here is too so just stay calm but definitely be assertive! Keep us updated, with much love Geremy