My 7 year old daughter suffers from encopresis (chronic constipation) and has developed megacolon over the years. We have been on a laxative regiment for the last 2 years. She has gone through a battery of tests and doesn't have things like celiac, thyroid problems or hirsprungs and even though half the time she doesn't feel she needs to go, her unvolentary muscle reflex (the one that makes the poop come out when pressure is big enough) is intact (she had a quite invasive test done to meassure this muscle tone, it is there).

Right now she is one Miralax and it seems to work ok but not perfect. I know it is the end of the school year which brings along a lot of extra stress, but right now the periods between a bout of impaction are getting shorter instead of longer.

We need to keep her clean, because the megacolon needs to heal (her colon is much stressed out because of all the chronic constipation she suffered for years, it needs to shrink back to normal size) When we do a clean out, we use the Miralax and it goes very quick and very well. My daughter doesn't like it much, but she understand it needs to be done, because constipation leads to soiling accidents. Mostly at home, but sometimes also in class...
When I called her pediatric gastroenterologist to tell her the periods between clean outs are getting shorter (we had 5 weeks, 2 weeks and one week between clean out, the last clean out was 2 weeks ago and soiling has started agin. Her gastro told me to up the dosage of Miralax: not stronger but more of it (14 oz, instead of 12 oz, with 5 teaspoons instead of 4 teaspoons.

Somehow I feel this is not right, she now has more diarrea accidents and has more trouble feeling when she needs to go, because the stools are not solid enough to feel them.

Any advise on this? (We do fiber and fluids, I am just curious to leanr what other encopresis kids do to stop the accidents).

Another thing it that she also gets severe muscle pain in her hip flexor from time to time. It isn't related to being constipated and it isn't growing pains either.
Any other constipation kids with this problem?

Anybody any experience with the bio feedback method to relearn bowel habits?

Any and all stories and pieces of advise are very welcome, even stories about medical stuff we may not have tried or heard off!! Oh, my daughter also sees an OT to help with her sensory stuff. Other than all this she is a happy, smart and beautiful young lady!

Thank,

L.

Wow. You told me on another thread that I wasn't the only poop expert. You sure were right. My daughter is just starting on this journey. I mentioned in the other post that my daughter is on MofM and is doing well with it. I am still trying to get the dosage right...not too firm and not too loose. But, other than that, she is doing well. My daughter has, thankfully, never had to deal with an impaction. I cannot imagine your poor baby going through that.

The only other thing that we have experienced that you didn't specifically mention is her Gastroenterologist is scheduling her for an MRI. He looked at the base of her tailbone and said that a dimple or puckering there is an indication of a birth defect that causes constipation. He said that the nerves around the base of the spine can become tangled and can cause constipation (and maybe hip pain??? I don't know...just a thought?). My daughter has a small dimple. If she had a dark discoloration or a hair growing from the dimple it would be even more of an indication...she doesn't.
I am hoping to get my daughter's bowels into a pattern by September so she doesn't have to deal with this when she starts Kindergarten. It must be very hard on your daughter dealing with this while at school. Good luck and hopefully we can both forget all of this "poop" knowledge someday. Ms. Twiddle

I will see the gastro next week and I will mention the MRI idea.
My feeling the hip pain is related with her problem somehow.

We started on MOM, but my daughter didn't tolerate the large dose we had to give her. She was on between 40 and 60cc a day, because she we more or less needed to give her diarea so the megacolon had a change to shrink back...It was absolutely terrible, I really felt I was slowly killing my child (cramps, vomiting, tired all the time) so we stopped the MOM and went to lactulose instead. That was ok for about 5 months but then it lost its effectiveness and we constantly were upping the doasage. The Miralax had been working well for a year now...

How old is yours?

Luka

Im not sure I'm of any help but here goes. My 8 yo son has had chronic constipation since birth basically. He was on lactulose,MoM,etc. He had to have enemas and suppositories. He sees a pediatric gastro. He also has sensory issues. He was tested for milk allergies, they took blood for that. It came out negative. BUT I decided to stop his milk intake and switched to soy. It has made a huge difference. He hasnt needed an enema in a long time. He still has large bowel movements but no more soiling and goes when he needs to. No more holding it in. Last friday, we ran out of soy and he decided to sneak some regular milk. Well, by the next day he had what looked like dark circles around his eyes. If you go to your search engine and type in chronic constipation and milk allergy, you will get quite a few links. Hope this helps.

Thank you mome.
I am ready to try anything!
We have already cut down on the milk tremendously but she still drinks at least one cup a day, plus what she uses in the cereals. I will try soy with her, her brother was allergic to soy (didn't think that was possible, but he was..) so I never tried.
I will also ask to be tested for milk allergie.

L.

There are also other alternatives like rice milk, goats milk, etc. Believe it or not from what Ive read soy allergy is just as common. some kids allergic to cows milk are also allergic to soy. My son is going for allergy testing,the skin *****, test. He has an immune disorder and I guess he can have alot of allergies that we dont know about. Oh ya, forgot to mention, my son hates plain soy milk. I get him the chocolate flavor. There is also strawberry flavor but I havent found it yet in my area. The plain is fine in cereal, he doesnt even know the difference. So far I have just cut out the drinking of milk and in cereal and it has helped tremendously. We are new to this(the milk thing, not the poop thing) and I have also made sure he takes his vitamins. He is quite underweight at 47lbs being 8 yo. Pedi isnt too concerned. Mommy is. LOL. Maybe you should speak to her doc about it but they may brush you off. If you found the sites I told you about I would suggest you print out the info on chronic constipation and milk and show the doc, it may help. Hope this works!