Hirschsprungs disease

Soon 2 be Lockhart

I am hoping someone might be able to help me, my dd is 28 months old and her pedi talking about sending her to a GI for a biopsy to see if she has Hirschsprungs disease. From what I have read she doesn't seem to have enough symptoms. My question is has anyone been diagnosed with this as a toddler? and what were the symptoms. I don't feel like this is what she has,but I am not finding any information regarding being diagnosed as a toddler and everything I have read says she would almost never pass stool on her own, which she does just not easily. I have included a background on her pooping, I thought it might help. I am not looking for a diagnosis just some info on toddlers being diagnosed with hirschsprungs disease. Thank You.

my dd has always since birth had constipation. This was initially thought to be from her formula she was on as she was a premie and on a special formula her pedi wanted her to stay on it. Her constipation was not supper bad, and she would have a bowl movement once every 3-5 days and they were usually formed nuggets. She did not come off the formula until she was close to 15 months old and then went to whole milk at this time her bowl movements turned to mush like babyfood and she started getting rashes, so I figured she was having trouble with the milk and switched to soy and her poop went back to formed and constipated. I slowly reintorduced her to whole milk and her poop remained the same. By this time she started getting skin tags on her bum (anus) these would sometimes bleed after some of her bowl movements so we were referred to a gi sergeon who put her on miralax and said we need to get her pooping every other day before doing the surgary to remove the skin tags (he said they would just come back do to her straining) This seemed to work for a while her pooping became more regular and easier for her to get out. Then shortly after she turned 2 it became really bad, her pooping became once every 5-10 days sometimes longer and she would scream, cry and some times vomit while trying to move the poop this can go on for 3 days until she finally gets a very large hard poop out. Sometimes she will push out little nuggets a few times a day during the week. She will also have poop smears on her diaper but no poop. She is still on the Mirilax but they have increased her dosage and we are now adding 10 grams of benefiber to her diet, we just started this so I am not sure how it is working but we are on day 2 after a anima and she worked on pooping for 3 hours today and pooped out a hard small nugget so I guess we will wait and see if it gets better. 

snairic102

I am not a regular poster, but I lurk often and thought I would reply here.  We’re not in the same situation as you, but my daughter was diagnosed with Hirschsprungs when she was 5.5 months old.  The first symptom was that she didn’t pass meconium within 48 hours of birth.  She went to the NICU and, after a few enemas, pooped on her own and continued to without problems until she was 5 months old.  The signs that made our doctor refer us to a pediatric surgeon were a really distended belly (all the time), poor weight gain, and infrequent pooping and struggling to poop.

It seems like a good sign to me that your daughter is able to get the large, hard poops out – I think kids with HD have trouble passing even soft poop.  That said, I may be overly cautious about it, but I would just ask for the referral to a pediatric surgeon.  There are a few non-invasive diagnostic tests (barium enema, some rectal balloon test) they can do, but only a biopsy will be definitive.  My daughter had two biopsies as the first was inconclusive.  Obviously it may be harder on your daughter as she is older, but my daughter did fine with both biopsies.  My husband and I were a mess, but she didn’t seem phased.

I know PP linked to the babycenter Hirschsprungs site.  There is a wealth of information on there, and I lurk on there often.  A lot of the frequent posters are parents whose kids really struggle with their HD, so don’t let it scare you.  My daughter had her surgery to remove the bad part of her colon 8 months ago, and she has had zero complications and is doing great.

Good luck to you and you daughter!

Soon 2 be Lockhart

thank you, I will check out the link. The increased dose of Mirilax and Fiber seem to work as far as her not being in pain, but still pooped on day 7. I am planning to ask the doctor on our next visit a list of questions and hopefully be able to have other testing done first.