New here with lots of questions

I hope nobody minds me posting this here! I have a two and a half month old daughter who is suspected of having Hirschsprung’s Disease. She had a barium enema done three weeks ago. The barium enema was negative; however, they are sending us to a gastriontologist next week due to continued problems. She was switched to Good Start Formula, which has made a difference in the consistancy of her stool. It’s now soft and normal when she poops. The problem is that she will won’t poop on her own. She had two bowel movements without help last week and I thought great, she’s straightened out. No such luck. She hasn’t pooped since Thursday and is spitting up a lot again. The dr. did a rectal exam and the poop was close enough to the opening to get on his finger. It was soft like it should be. He thought she would poop due to the exam but didn’t and still hasn’t. I’ve given her a glycerine enema, juice, massaged her tummy, given her a warm bath, put a warm wash cloth on her tummy, and done the thermometer trick. Nothing has worked. The dr. told me today that he thinks she may have Hirschsprungs and the enema didn’t show it. He said the GI specialist will want to scope her and do a biopsy. He basically advised me to prepare myself for a diagnosis of Hirschsprungs.

I’m a little confused about all of this. I thought if the enema was normal then the baby doesn’t have Hirschsprungs. DH says he’s read stuff that says otherwise. Do you know if an enema can be negative and a biopsy positive for the disease? Also, when they ask me if she has ribbon like stools what do they mean? Do they mean ribbon like when I see it in the diaper or ribbon like if I witness her actually having a bowel movement? I have one more question—do babies with Hirschsprungs never have bowel movements on their own or do they have one on their own occasionally? Also, do children with this disease gain weight or do they suffer from failure to thrive? I’ve heard contradicting things about that aspect. Some people have told me she wouldn’t be gaining weight if she had it and others have told me she would be depending on the severity of the disease.

Thanks so much if you read this far. I’m trying to find out all I can about this disease before we see the GI specialist next week.

I am so sorry about the problems with your newborn. Never be afraid to post things and questions in here. Everyone is so great, and loves being a help. We all have questions from time to time.
I don’t really know about the enema tests. My little boy was diagnosed for the same reasons though. He couldn’t go on his own, but he ruptured a part of his bowel so it became more serious. I will tell you this, If she does have HD, she will go on her own! My son is now 5. He was diagnosed at birth. He had total HD. He had to have his whole large intestine removed. (doesn’t sound like your daughter could be that severe!) He is now completely potty trained, happy healthy and weighs 51 pounds! He is medication free. He did go through a time where I had to dialate him and he was on meds, but he is fine now. i have to remind him to go “poop” everyday, but other than that he is “normal”. Please try not to panic! I know it’s very hard and confusing, but hang in there. I will pray she doesn’t have HD, but if she does, rest assured it is not the end of the world. Please keep me posted, and feel free to post anytime! Lots of prayers, Zach’s mom!

-----Original Message-----

From: mom2littlemonsters hirschsprungs-cpt5282@lists.careplace.com
Sent: Jul 17, 2007 9:43 PM
To: rcsnell@peoplepc.com
Subject: [hirschsprungs] New here with lots of questions

I will attempt to answer some of your questions. In regards to your
question on the enema one study showed up to 24% false negative. So yes it
is possible to have a negative BE and a positive biopsy. The ribbon poop is
while he is pooping (unless by some chance she does not smash her poop once
it is in his diaper :slight_smile: ) This is due to the stool going through a narrow
area. Some HD babies stool on their own some do not. Mine did. However we
found out later that he was constipated we just didn’t realize it. He would
stool small amounts (1 or 2 TB) several times a day. Some liquid stool was
getting by the blocked areas and hard stool. Jaden gained weight fine until
he got enterocolitis. But this varies. Most HD babies do not gain weight
as quickly as normal.

I understand the trying anything to get him to poop…suppositories, enemas,
dilations, rectal exams, etc. rarely ever resulted in poop. Even after his
surgery we have had this problem. Actually we didn’t have it again until he
was 7 mos old. He is now on Miralax. Have you came across
www.hirschsprungs.info ? You can join their email group or boards. I have
gotten a lot of helpful advice from these people. There are adults with HD
and several parents of HD kids on there. Hope you find your answers soon.
Susan
Mom to Leslie (15), Jacen (3), and Jaden (8 mos, HD & HS)

-----Original Message-----
From: mom2littlemonsters [mailto:hirschsprungs-cpt5282@lists.careplace.com]
Sent: Tuesday, July 17, 2007 9:43 PM
To: xians@charter.net
Subject: [hirschsprungs] New here with lots of questions

My son, Xavier, had an inconclusive barium enema that was then followed up by a biopsy that showed that he did have hirschprung’s disease. He was about that same as your daughter when he was diagnosed. Xavier, however, stopped having bowel movements on his own at 1 month old…and he was a breast fed baby, very unusual. Xavier had pull through surgery at 2 months. He will be 3 years old next week. Aside from serious diaper rash issues, we have had no real issues since surgery. Well, until we started potty training that is. Now, poop is an issue again. I wonder if Xavier will always have poop issues!? That’s why I joined this group. Thanks very much to xians for posting info about hirschsprungs.info. I will be checking in there as well to find out as much as I can.