Does anyone know someone who has Hirschsprung's disease???

My 2 year old daughter, Sapphire will be seeing a pediatric gasteroenterologist this week due to alot...and I mean ALOT of bowel problems. Her pediatrician mentioned that there is a possibility that it could be Hirschsprung's disease, although it is uncommon. Then I saw an episode of Mystery Diagnosis featuring a little boy who had it and every last detail of what he was going through was so eerily similar to that of my daughter. I have researched Hirschsprung's but because it is not widely known, there really isn't a lot of information about it out there.

Here is some info on Hirschsprung's...

Hirschsprung's disease occurs when some of the nerve cells that are normally present in the intestine do not form properly while a baby is developing during pregnancy.

As food is digested, muscles move food forward through the intestines in a movement called peristalsis. When we eat, nerve cells that are present in the wall of the intestines receive signals from the brain telling the intestinal muscles to move food forward.

In children with Hirschsprung's disease, a lack of nerve cells in part of the intestine interrupts the signal from the brain and prevents peristalsis in that segment of the intestine. Because stool cannot move forward normally, the intestine can become partially or completely obstructed (blocked), and begins to expand to a larger than normal size.

The problems a child will experience with Hirschsprung's disease depend on how much of the intestine has normal nerve cells present. Seventy percent of babies with Hirschsprung's disease are missing nerve cells in only the last one to two feet of the large intestine.

Hirschsprung's disease causes 25 percent of intestinal obstructions that occur in newborns. In mild cases, Hirschsprung's may not be detected or diagnosed until later in the child's life.

The only "cure" for Hirschsprung's is surgery. This surgery consists of removing the part of the intestine that is affected. After the surgery, 9 out of 10 children will pass stool normally.

-Melanie

Replies (5)

I have not posted here but I did read what was going on with your little one and I was waiting to hear what the Dr's found out... That is really good news Mel... Glad your little one is going to be fine and yes maybe now she can gain some weight poor baby...

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Sheila

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Sheila

Thank goodness!!!! well, atleast they are pretty sure that she doesn't have it anyway!
We took her to the pediatric gasteroenterologist and they actually found that her rectal vault which is the part of the rectum that holds the poop is actually substantially larger than it should be. It is more adult sized and she is only 2 1/2!!! So because her rectal vault is so large her brain isn't getting the signal that she has to poop like it should so the poop just sits and sits and just keeps collecting so by the time her brain gets that signal there is so much poop and it is HUGE, then she becomes what the doctor called an "incomplete pooper" which means that even when she does end up going, there is waaaay to much for her to get out on her own.....she is incapable of getting out that amount of stool. That also explains why her belly was ALWAYS distended, because there was ALWAYS stool in her intestines!!! The doctor had us give her a colon cleanse (a series of 6 enemas, ugh!) and we also had to start her on miralax right away! She is doing sooooo much better. For the past week and a half she has been going everyday (she was only going twice a week before) and sometimes even twice a day! I have also never seen her belly so flat! Hopefully she can also start gaining some weight too. She is only 24 lbs which puts her in the 12% percentile for all children her age. She just couldn't eat very much with the way her belly was and she also wasn't able to absorb all the nutrients properly. I just hope that the success we have had with this so far will continue!

-Melanie

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I just watched that show you were talking about. I knew I had seen a post here about that disease so I came to find it. I hope you get the answers you are looking for. As a mother with a chronically ill child I know how scary and frustrating it can be. Please let us know how Sapphire is doing. My thoughts and prayers are with you. ((HUGS))

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Lisa

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Lisa

i will check the pages out. Sapphire goes to the pediatric gasteroenterologist tomorrow.

-Melanie

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R.I.P to my two babies in heaven, I love and I miss you.....you will never be forgotten!

www.myspace.com/upsidedownmemory
www.thanxhairartistry.com

R.I.P to my two babies in heaven, I love and I miss you.....you will never be forgotten!

that have had this disorder. All have had surgery and all are stooling normally now. What you posted above is correct, about 90% do extremely well.

Here's the Medline link to many pages on this disorder:

http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medli...

Good luck to you and your daughter!

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Jenn --
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