Older Diagnosis? Does This Sound Like HD?

I was looking to see if anyone with an older child or toddler diagnosed with Hirschsprung’s could share their story and symptoms and see if this sounded familiar.

My son has had GI issues since birth. He was breastfed for the first 15 months. For the first six months he was extremely fussy, but did stool. It was days between them at times and they were explosive and contained blood and mucus. He was treated as if he ahd a milk/soy protein allergy. I ended up waiting on solids until nine months because the couple times I tried he ended up with bad constipation (even when only on pears and prunes!) and more blood in his stool.

From 9-15 months he was on and off Miralax. He had string like poops at times and was dianosed with anal stenosis (he has a membrane inside the rectum, not bad enough to need surgery, but we thought that explained the blood in his stool and constipation).

He’s over two years old now. He’s never had a normal stool in his life. Now he withholds until he needs suppositories or enemas or he goes if it is diarrhea, but he can’t get that out sometimes. The membrane they said he had is now gone, they confirmed with rectal exams. Yesterday I had to resort of a liquid suppository because he hadn’t gone in three days and it was diarrhea. I just don’t know why he can’t go! Or why he would be able to hold in diarrhea!

He had a flex-sigmoidoscopy at 7 months in which the tested for eosinophils (results were normal). He had a barium enema last week which was normal except he withheld the barium after which had them very concerned. Apparently that doesn’t happen often? His GI scheduled a rectal suction biopsy for the 25th which I guess is the next step.

Does this sound familiar to anyone? Any other ideas or avenues I might not be exploring? He’s up to 3/4 - 1 cap of Miralax a day with fiber, juice, you name it. I told his GI I can make him have diarrhea, but he just CAN NOT get out a normal soft stool and he never has. If it starts to get thicker than paste, he can’t get it out. That’s just not “normal”.

did you get the test done? what where the results. Hoping the best for you

Sounds like my son almost to the T only he wasn’t finally dx until age 4.5 yrs old. Skip the suction biopsy and go straight for the full thickness biopsy. Rectal suction came back negative twice for my son and I think they just need to not do that test anymore for Hirschsprung’s because of the high false negative rate.

My son was breastfed for over 2 years…stools went fine until he was 6 months old and started solid foods. He would only go poop 1-2 times a month even on laxatives and other things.

They told me too he was stool with holding and I always thought that was BS especially at under 9 months old. Anyways we had horrible docs and horrible health insurance that would not let me go outside the box. It wasn’t until he was 4 I got a doctor to take things seriously and run tests on him, by that time it was almost too late because he got entrocolitious and ended up going to the hospital which then led to the full thickness biopsy and a dx of HD.

I wish you the best of luck!