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[Guest guest]

Hi!

I did a quick search on the archives for Hirschprungs, but didn't come

up with anything. My son is 10 and has down syndrome and Hirschsprungs

(quite a bit of intestive was removed at 10 months). He's been using

Mirlax for about a year and has been very regular. Before that,we used

mineral oil and high-fiber diet and as-needed enemas. Even though he

was eliminating every day, he wasn't emptying and he ended up with mega-

colon and a stretched out rectum, which will probabably never return to

normal size.

So....where do I start? What has worked for others in this situation?

I'd like to get him off of the miralax.

Thanks for any help.

[Guest guest]

Hi ! Well, since he's had some intestinal tract removed, and has the dx of Hirschprungs, I do think you have to consult with your child's doctor on this because no one here can speak from experience about a child with Hirschprung's unfortunately. When you say the megacolon and rectum will probably never return to a normal size, is that because of the hirschprung's specifically, i.e. is there a problem with the muscle tone that would keep it large like that? As far as what to try, you know, sometime I'll have to go through all the messages and try to organize some files because I know that would help out new folks a lot, but for the time being, I suggest reading through old messages... there are varying degrees of success for getting off of miralax. Some use a probiotic which supplies the healthy bacteria to the gut. Some use vitamin C and or a daily dose of magnesium in some form (capsules or

a powder to mix in a drink), some use over the counter fiber products like benefiber, some use flax seed and flax oil. I just ordered Juice Plus Fiber on the internet and it tastes like regular juice, and each box has 10 mg's of fiber. If it were me, again, I'd keep in touch with the doc, and then make SMALL changes over a period of time... given the hirschprung's diagnosis. Ex. start using Benefiber several times a day and see if it is possible to knock some milligrams off of the miralax dose, and stay with that a couple of weeks... add in some vitamin C and magnesium-- Natural Calm is one that has been mentioned here that can be mixed into a drink, and contains calcium as well. And then if the stool seems a bit looser, then knock some more milligrams off of the miralax dose. And so forth... If you notice that things are better on certain days versus others, then I would also

begin to keep a food diary to see if there are certain foods that are making it worse, or better. Good luck and please post again and let us know how he is doing. It will be nice to have you on the board in case more parents of children with Hirschprung's end up joining us here. We can all learn from you! W vjohnson127 wrote: Hi!I did a quick search on the archives for Hirschprungs, but didn't come up with anything. My son is 10 and has down syndrome and Hirschsprungs (quite a bit of intestive was removed at 10 months). He's been using Mirlax for about a year and has been very regular. Before that,we used mineral oil

and high-fiber diet and as-needed enemas. Even though he was eliminating every day, he wasn't emptying and he ended up with mega-colon and a stretched out rectum, which will probabably never return to normal size. So....where do I start? What has worked for others in this situation? I'd like to get him off of the miralax.Thanks for any help.

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