Diet and Hirschsprungs

Hirschsprung's Disease
#1

I have a 2-year old who has unofficially been diagnosed with HD. She hasn’t had a biopsy but they have ruled out other conditions and based on all symptoms have said they are pretty certain it is HD, and probably not too severe of a case. So far we have been able to control her constipation with diet, but lately she is having a very difficult time. We have to wait 2 and half months to get into the GI again, so does anyone have any suggestions on diet to keep her bowels moving? Lately we have been having to rely on glycerin suppositories to help, and I really don’t want her to become dependent on something like that.

She is not a great eater. She is more of a snacker. I try to give her a lot of whole grains and fiber. Her BM’s have become so large and difficult to pass it is extremely painful and causing tearing, bleeding, and hemorrhoids.

Any suggestions would be much appreciated.

#2

I was wondering what she drinks. If she is not a great eater, try getting
her to drink apple juice. That usually helps. Also, I gave Ian (total
colonic HD) some karo syrup in his milk to make him go before he was
diagnosed. I also used it for my daughter when she was little.
Some physicians do not think that it works and don’t suggest using it. I
highly recommend using it.
Will she eat grapes? That is usually something that kids like.
Does she eat a lot of gummy candy? I know that can be constipating.
Ian is on a constipating diet so I could let you know what all he eats and
you could stay away from those things if that would help.
I pray for your situation. You have to be scared to death right not. If
you need to talk or have any other questions, you can e-mail me personally
at f.allison@myactv.net
Best of luck, Crystal

----- Original Message -----
From: “jmhwales” hirschsprungs-cpt3410@lists.careplace.com
To: f.allison@myactv.net
Sent: Sunday, May 27, 2007 9:06 AM
Subject: [hirschsprungs] diet

#3

Thanks for the tips. She does like apple juice, but she usually asks for
other drinks. I can give her more though. She also likes grapes and that is
one thing we have been able to give her. I think one problem may be eating
too many constipating things. She loves dairy foods (milk, cheese, yogurt),
but I think too many of them can be constipating. My doctor said to stay
away from karo syrup because of botulism. I used it when she was only a
couple of months old and it did work -but my doctor said she new 4 babies
personally that got botulism from using it.
It would be helpful if you could let me know what foods I should stay away
from - as that may be a big part of the problem. Thanks for the ideas on
drinks, I don’t usually think about what she is drinking so I will try to
sneak in more apple juice and other drinks like that.
Thanks!
Janae

On 5/27/07, callison hirschsprungs-cpt3410@lists.careplace.com wrote:

#4

Hi, you can try giveing her soy milk instead of cow’s milk. My son was beginning to have const. problems again, we switched him to that & it has made a world of difference (& he actually likes it better-they have chocalate flavor.) Soy is FULL of fiber. Also make sure you are not giving her to much bran-I know that sounds crazy! But bran causes problems in large amounts IF she is not drinking a HUGE amount of fluids (most kids can not drink enough fluids in a day to process a large amount of bran.) then the stools become large, hard, dry, & difficult to pass. Other types of fiber are usually better w/small amounts of bran. I have also found to stay away from Pop-Tarts, at least for my son. And use whole wheat pasta if she likes that. The best snacks I have found are the grapes & raisons. Good luck-my son loves all the constipating stuff too Cheese is his favorite!

#5

Those are some great ideas. Thanks for the heads up about the bran. I was
actually told by someone (not a person who has a child with problems) to buy
powdered bran and sneak it into other foods. I won’t be doing that! I’ll
try soy milk. My daughter loves chocolate milk and asks for it all day long.
In fact she wont go to bed without some at night. I don’t give it to her
every time she asks, but she does probably drink too much of it. The soy is
a great idea. And so is the whole wheat pasta. She loves pasta but I don’t
usually buy the whole wheat.
I appreciate the help!

On 5/29/07, debra hirschsprungs-cpt3410@lists.careplace.com wrote:

#6

Use enemas, warm water not hot, every other day or so. Mae West had an enema
every day of her life and lived to be very old. With HD you cannot cure it
with fiber. I am 55 yrs old and have had this problem since I was 17. Large
amounts of fiber can cause more constipation and it nevers cures it… I am
ready for surgery…

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#7

Ian eats a lot of crackers, pasta, rice, breads, and any products that
contain these. He eats a lot of pretzels for snacks. All that starchy
binding foods. He is lactose intolerant or he could eat those products.
Good luck. Thanks for the info on Karo syrup. I never knew about that. My
doctor just said not to use it.
Keep me updated. Crystal
----- Original Message -----
From: “jmhwales” hirschsprungs-cpt3410@lists.careplace.com
To: f.allison@myactv.net
Sent: Tuesday, May 29, 2007 11:33 AM
Subject: Re: [hirschsprungs] diet

#8

Hi,

I have a 21 month old wilth TCHD and a 5 year old with chronic constipation. Enemas are not the answer and neither are glycerin suppositories. Give your baby a teaspoon of Miralax everyday. This is what our surgeon has us doing for our 5 year old. It is safe by all that I have been told. I have been where your are at. Glycerine suppositories make them not want to go.

#9

Hi,

It’s me again. I have been rethinking what I said earlier. I do not want anyone to substitute my message for the advice of a dr. Please ask your Dr. about the Miralax. This might be the easiest option for your child. Also ask about irragations. I had to do them with my second child. I hope all goes well for your baby.

#10

My son has the opposite problem but I still know alot about what causes constipation or the opposite. The miralax is a great Idea so I would ask your doctor about it even if it is over the counter now. We were told apples were constipating though with evan it does the opposite… gives him diarrhea for days!!! Soooo I wouldnt exactly recommend apples but you may want to try Pear juice!!! SEriously, pear juice works wonders!!And like others have said stay away from cheese and other dairy products. Evans surgeon wants him to take senna to clear his bowels out once a day. You might want to try that too. Ask your pharmacist about it… evan had a prescription for it but when i took it to the pharmacy they said it was otc but they still filled it for me behind the counter. HOpe this helps some :slight_smile:

Kristy

#11

My son just turned 2 and he will be having a biopsy soon to either rule it out or get diagnosed. He cant poop on his own w/ out 17g of miralax everyday and than @ the end of the month we have to give him extra along w/ suppositories to get the harder stuff out. Diet has not helped him since 4 months when we started formula, breastfeeding let him go before than. What I found that helps my son go along w/ meds is prunes and apple juice a couple times a day mixed w/ water. He seems to go more w/ apple juice and easier too. You should def talk to doc about miralzx because it works great. I didnt like the meds in the begining because it gave him really loose stools, but we found out the only way he can go is if his stools are really loose, or he backs up. The thing about this med is it doesnt harm them. You give them as much or as little as they need to go as the doc wants the child to go. My son was on a 1/4 cap in the begining a it gave him loose stools, and as time went he continued to have problems and we added 1/4 every few weeks till he seemed comfortable at going w/ 1 capful. I believe miralax would probably be better for your daughter than suppositories. My sons doc doesnt think he has hirschprungs but they cant find anything else, so I asked for the biopsy. I dont know what else it could be. My son does have waardenburg, and hirschprungs can be found in the syndrome. I cant wait for biopsy to know the results; this constipation is frustrating for him and for me. I am at a lost on how to help him.

#12

My little guy loves prunes and they work everytime, you just have to figure out how much is too much and how much is enough. When he starts to get const. I put some in his oatmeal in the mornings, by afternoon…no problem.