New With Questions

[Emeline405]

My 4-almost-5 year old daughter has the following:

Down Syndrome (birth)

Hypoparathyroidism (5/2009)

Addison's Disease (10/2009)

and 2 heart defects (PDA and PFO) (birth)

She has had a constant battle with constipation her entire life. We began seeing a GI last year, who started her on a once-daily

adult dose of Miralax for constipation. Diagnosis was encopresis (enlarged colon due to stool-holding), so he wanted us to induce

diarrhea for 3-6 months in order to give her colon a chance to shrink back down to normal size. We are on our 8th month now.

Even while on Miralax, she still does not have daily BM's. She goes every 3-4 days. When she goes, it's usually 3 or times

(full-to-overflowing Pull-ups every time--she is not toilet-trained yet). So, when she goes, it's a LOT. But the frequency is

still every 3-4 days. We go back to GI in 2 weeks.

We discussed Celiac as a possibility, as it is my understanding that Celiac can cause either diarrhea OR constipation, yes??

He did a blood test and said it was negative for Celiac, but then said "but false negatives are not unheard of."

He mentioned the possibility of doing a biopsy at some point...

She is a great eater--eats anything and everything. We have never had a need to do any dietary changes, so that is not something we have done. (Other than adding the typical "anti-constipation" foods---pears, apple juice, etc. None of which seemed to make ANY difference.)

Advice? Suggestions? Questions I should be asking?

[seezee]

I read that celiac is more common in Downs Open Original Shared Link

Maybe given the other symptoms it could make sense to do further testing or try a gluten-free diet.

[Mizzo]

My 4-almost-5 year old daughter has the following:

Down Syndrome (birth)

Hypoparathyroidism (5/2009)

Addison's Disease (10/2009)

and 2 heart defects (PDA and PFO) (birth)

She has had a constant battle with constipation her entire life. We began seeing a GI last year, who started her on a once-daily

adult dose of Miralax for constipation. Diagnosis was encopresis (enlarged colon due to stool-holding), so he wanted us to induce

diarrhea for 3-6 months in order to give her colon a chance to shrink back down to normal size. We are on our 8th month now.

Even while on Miralax, she still does not have daily BM's. She goes every 3-4 days. When she goes, it's usually 3 or times

(full-to-overflowing Pull-ups every time--she is not toilet-trained yet). So, when she goes, it's a LOT. But the frequency is

still every 3-4 days. We go back to GI in 2 weeks.

We discussed Celiac as a possibility, as it is my understanding that Celiac can cause either diarrhea OR constipation, yes??

He did a blood test and said it was negative for Celiac, but then said "but false negatives are not unheard of."

He mentioned the possibility of doing a biopsy at some point...

She is a great eater--eats anything and everything. We have never had a need to do any dietary changes, so that is not something we have done. (Other than adding the typical "anti-constipation" foods---pears, apple juice, etc. None of which seemed to make ANY difference.)

Advice? Suggestions? Questions I should be asking?

My girl was also being treated for same colon problem with Miralax for off and on over a year, with the occasional flushing with Milk of Magnesia . Finally we went to a GI had the scope and found Celiac.

If your DR will order it it will rule out or confirm many different problems. It's a simple procedure for the kiddo's , much tougher (anxiety) on us.

Good luck

[debmom]

My 4-almost-5 year old daughter has the following:

Down Syndrome (birth)

Hypoparathyroidism (5/2009)

Addison's Disease (10/2009)

and 2 heart defects (PDA and PFO) (birth)

She has had a constant battle with constipation her entire life. We began seeing a GI last year, who started her on a once-daily

adult dose of Miralax for constipation. Diagnosis was encopresis (enlarged colon due to stool-holding), so he wanted us to induce

diarrhea for 3-6 months in order to give her colon a chance to shrink back down to normal size. We are on our 8th month now.

Even while on Miralax, she still does not have daily BM's. She goes every 3-4 days. When she goes, it's usually 3 or times

(full-to-overflowing Pull-ups every time--she is not toilet-trained yet). So, when she goes, it's a LOT. But the frequency is

still every 3-4 days. We go back to GI in 2 weeks.

We discussed Celiac as a possibility, as it is my understanding that Celiac can cause either diarrhea OR constipation, yes??

He did a blood test and said it was negative for Celiac, but then said "but false negatives are not unheard of."

He mentioned the possibility of doing a biopsy at some point...

She is a great eater--eats anything and everything. We have never had a need to do any dietary changes, so that is not something we have done. (Other than adding the typical "anti-constipation" foods---pears, apple juice, etc. None of which seemed to make ANY difference.)

Advice? Suggestions? Questions I should be asking?

[debmom]

My daughter also suffered with constipation for years since birth and was put on lactalose and then Miralax. She was 15 when we discovered she had celiac disease. She still has struggles with her digestion, but we found that adding magnesium supplements and Fiber Con (gluten free) has helped some. We are trying to get her off the Miralax if possible. Good luck--

[Dixiebell]

My son had severe constipation also. He had an x-ray a because of severe tummy pain. The miralax cleared that up after a few weeks. His blood tests were negative. We opted to not do the endo because I wanted to see first if the diet would work for him. If it didn't and if he was still having problems then we would get it done to see if maybe it was something else. He has been gluten free for almost three months. Also he would get this red rash on his face, it didn't happen all the time so I couldn't connect it to anything. He also had some rough areas on different parts of his body and some little blisters that would pop up. We went the derm. so he could do a biopsy, the Dr. did not want to biopsy what I wanted him to but he did say that he has KP. All of these things have cleared up except the KP. He also developed a latex allergy during all of this. Ask your Dr., becuase you daughter is so young, if he/she would diagnose based on a positive response to the diet.

[dkelm]

An enlarged colon and severe constipation were the two major symptoms for my sister's daughter, who has a milk allergy. Her baby had severe constipation while being breastfed even. She would go 8 or 9 days w/o pooping. Have you tried putting a little teaspoon of corn syrup in her drink? That sometimes helped my sister's baby. But they have to give their daughter miralax as well. They had to do a lot of other things also.

Hang in there mama! I hope the doctor figures it out soon. If you think it's celiac, as them to do the biopsy. We are having one on Monday.