Almost 4 yr old daugher severe constipation

Hirschsprung's Disease
#1

Hi Guys, I’m happy to have found this group. My daughter has had severe constipation since birth, she’s never been regular. She at first would only go every 3 days and now is up to going over 2 weeks without a bowel movement. The drs won’t take us seriously… we’ve called, taken her in on many occasions to have them tell us to try diet changes, miralax, baby lax… nothing works. She was born weighing 5 lbs, dropped to 4lbs 2 oz before leaving the hospital. She will be 4 next week, she weighs 24 lbs and is 36 inches tall… she’s very tiny. She also has congenital scoliosis, heart defect and is developmentally delayed- saying all of that you wouldn’t know anything was wrong with her, other than being small. She’s way cute!

Anyways, we just got home from a barium enema x-ray. She had a bowel movement of Thursday and lots of runny stool and is still severely impacted with a descended retum. We will get the offical report tomorrow morning.

When she does have a bowel movement they are typically the size of her thigh. She cries and bleeds when she finally goes.

Any help would be great.

Thanks

#2

fecal impaction can cause vomitting

#3

Her KUB, flat and upright were performed. I evaluated it and was concerned
about dilated loops of bowel… Evaluated with other drs (more text listed)

Dr. White feels that KUB is reassuring and non consistent with intussusception
or obstruction. but they still said she was fecally impacted?

#4

Welcome…your story sounds simular to my son. He started with severe constipation at 7 months old and it went on for years trying different laxes and enemas. Nothing really worked for him and he too was often fecally impacted and very sick. The barium enema test is what threw is body over the edge and landed us in the hospital with an awesome Dr who know just what to do. Might I suggest you go see a pediatric surgeon to run a full thickness biopsy to test for HD. What state are you in? There are several really awesome doctors out there in a few states that know what they are looking for in these late dx cases.

Janel

#5

We are in Utah.

#6

What happened after the Barium x-ray?

#7

I just went through her old dr notes, I get copies from all. At 17 months we took her to the ER because she was vomitting badly and we couldn’t get it to stop. They kept her overnight for observation but also did an xray on her. The notes said that she was impacted but had no obstructions. I’m glad I found this, to show that she’s had this for a while.

#8

after the barium his little body would not fully release the dye which made him even more ill. He started to vomit uncontrollably and his tummy was bloated the biggest I had ever seen.

When they admitted your child did they ever clean out the bowel to remove the impaction?

#9

No, they said there was no obstrution and that her tummy just needed a night to rest. After her enema today she has not had much of the barium come out… I keep taking her to the potty but only little drips have been coming out.

#10

The notes say:

Her KUB, flat and upright were performed. I evaluated it and was concerned about dilated loops of bowel… Evaluated with other drs (more text listed)

Dr. White feels that KUB is reassuring and non consistent with intussusception or obstruction.

#11

wow they should have cleaned her out in the hospital like giving her go-litely or enemas. Leaving an impaction of stool in the colon is a good way to get very ill. It is bacteria that will grow from the stool just sitting there. My suggestion would be to go to your children’s hospital (which I heard isn’t really that great in Utah) and see if you can see a surgeon about the biopsy. Or if you can finally do it go to either Los Angeles,CA for LA Childrens with Dr Shaul or Cincinnati Children’s with Dr Levitt or Pena.

#12

Can you tell me more about your son?

#13

sure what do you want to know? I’ve got a blog in which I’ve journaled his life. He is 5 yrs old now but was just dx with HD 7 months ago. He started out as a typical newborn with reflux and about 7 months old when babyfood came into the picture he started to get constipation. First it was a few days, then a week and then was a month. Most often he would only poop once a month. We got ignored by docs who refused to really test him and just told us to give laxatives. The lax never worked and he was always constipated and had a huge bloated belly. Finally we were able to switch medical plans which gave us a wider range of doctors it still took nearly 2 years going through that system. Finally last fall he started to get really sick and his ped GI started to do more tests, all were negative even the rectal bisopy for HD was negative twice. But in January 2008 he was still sick and getting worse so she had us do the barium enema test. That night we went
home and got really sick and ended up in ER. We saw an awesome surgeon who knew just what it was and after 2 bisopsies it was confirmed to be HD. He had 25% (about 2 feet) of his colon removed and a colostomy placed. A few months later he had the pull-thru and a new ostomy. Then just 4 weeks ago he had the ostomy closed and we are now learning how to use the potty. It has been a long journey. Oh and we are in Northern California.
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Janel

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"Very little is needed to make life happy. It is all within yourself, your way of thinking."~Marcus Aurelius
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— On Mon, 7/28/08, ttoy hirschsprungs-cpt9914@lists.careplace.com wrote:

From: ttoy hirschsprungs-cpt9914@lists.careplace.com
Subject: Re: [hirschsprungs] Almost 4 yr old daugher severe constipation
To: ajberchielli@yahoo.com
Date: Monday, July 28, 2008, 12:04 PM

#14

How do I read the blog/journal? Sorry new to this site.

#15

Yes, they said that her vomiting was from a virus and that she just needed a night to rest, then start clear fluids. We were released in the morning after she stopped vomiting.

#16

I didn’t know enough about it at the time. I wish I did. I’m trying to educate myself on this so that I can demand some answers. I’m not letting this go any longer.

#17

good for you!!! Educating yourself about it will really help you!

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"Very little is needed to make life happy. It is all within yourself, your way of thinking."~Marcus Aurelius
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— On Mon, 7/28/08, ttoy hirschsprungs-cpt9914@lists.careplace.com wrote:

From: ttoy hirschsprungs-cpt9914@lists.careplace.com
Subject: Re: [hirschsprungs] Almost 4 yr old daugher severe constipation
To: ajberchielli@yahoo.com
Date: Monday, July 28, 2008, 12:38 PM

#18

So how do I read your blog? I’ve been looking and can’t seem to find it. :slight_smile: Thanks for all of your help.

#19

So why did he have a negative biopsy? Is that common?

#20

This is my blog about my son:

https://myspecialone.blogspot.com

Janel