Daughter Saw Pedi Today

[lob6796]

My daughter had a severe bout of constipation the last two days and it got so bad I called her pedi at 8pm last night. He saw her today and sent her up to the hospital for stomach xrays and blood work. the blood work he filed was a more comprehensive panel for Celiac than he first did (first was just IgA/IgG anti gliadin). The stomach xrays ended up showing that most of her colon is impacted with large masses of stool. So much in fact, that her colon is inflamed and swollen. He is setting her up for a barium enema sometime this week and said he wants to test her for Hirshsprung's Disease at that time. I'm out of my mind with worry. So far in my head these are the possible senarios:

1. She has Celiac AND Hirshsprung, both are making the other worse.

2. She has Hirshsprung, which is causing all of the other symptoms.

3. She has Celiac which is causing the severe constipation plus the rest of the symptoms.

He says he thinks that with the knowledge that I am positive for Celiac, and he himself kept questioning it with her, that he thinks she has Celiac Disease. He thinks that while Hirshsprung is rare, that there is a possibility she has it from what the xrays showed. Celiac is at least just a diet. hirshsprung means she will need a colostomy, and then after a period of healing, will need to have the defective intestines removed, and reconnected to her rectum, with a possibility of permanent damage. I am scared for her, and I want her to feel better so badly. When I thought the diagnosis was Celiac I said "well, I'll be gluten free too, and she is young so it will be ok!". Now with this, I don't know. Plus Hirshsprung has a lifelong side effect of malabsorbtion (even after the surgery since she will be missing some of her intestines), which makes me worried because of the malabsorbtion that gluten can cause with a Celiac.

Any thoughts? I am a wreck.

[Canadian Karen]

I have been where you are at right now....

I have four children and two of them had chronic severe constipation for the first 4 years of their life. Both children had to be tested for Hirshsprung's Disease, and neither had it.

Rhiannon and Daniel used to get so severely constipated that we have spent many nights in ER with a screaming child. Every 10 minutes, when Rhiannon got "the urge" she would be screaming, writhing in pain, breaking out in sweats, etc. They both had their bowels impacted numerous times. I can remember the hell we had trying to get them to sit in that little seat they strap them in to do the x-rays (the one that keeps their arms above their head).....

Just to let you know, the pediatrician finally put them on liquid Senekot, which they took every night for over 1 year until their bowels had matured and strengthened enough to work on their own. Senekot is all natural, and is the ONLY thing that worked for my kids. After they were around 4, we tried weening them off, and sure enough, their bowels started working regularly on their own.

I can remember how scared I was thinking it was Hirshsprung's...... But looking back now, when I was a child, I had severe chronic constipation, and now I have celiac AND collagenous colitis (I now have permanent watery diarrhea, how ironic is that??????) I can see many similarities in my childhood that mirror what my children are going through, but to date, they have still tested negative. I still believe that they have gluten sensitivity, it just hasn't gotten to full blown celiac yet. Getting my husband on board with that way of thinking though is another matter. The thought of "subjecting them to a gluten-free diet" would be cruel unless absolutely necessary (not to mention expensive!), so I am fighting an uphill battle here.....

Just wanted you to know though that the fact that celiac runs in your family, makes the possibility of it being just chronic constipation that much more likely and that it won't be Hirschsprung's.....

Karen

[2kids4me]

Kathryn spent a year constipated - needing microlax enemas ..at the age of 3 yrs... this went on and, then 3 dr visits later - they find she is hypothyroid!

Make sure they test thryoid function too - an outside possibility but one that should be checked.

Sandy

[natalie]

Hi,

My daughter presented with constipation and vommiting. At first the doctor also thought Hirshprung's as well. Her ultrasound showed a tremendous amount of gas which was causing her pain. It turned out to be Celiac, not Hirshprungs. Even a year and a half after her diagnosis I have her on lactulose which helps keep her bm soft. It is not a laxative...the bowels do not become dependant on it. I just find that she can get constipated so easily and that really helps.

I hope all goes well with your daughter.

Natalie

[Karwei5]

I don't have any info about this but I have a couple of friends that have kids w/ Hirschsprung's and they are doing fine. They did have to have surgery but all is well with them now.

If that is what you find it will be ok. It is awfully scary thinking about Hirschsprung's but if you have to deal with it you will be able to do it.

Karol mom to Billy 19 years old