Constipation

DiGeorge Syndrome
#1

A big issue that my son has had with DiGeorge, has been constipation. I feel badly for him, for even as a young infant, he never had soft baby poo. He’s always had a rough time with it. He’s now 4, and still wearing pull ups. Potty training has been difficult, for he’s constantly having episodes where he ends up pooping out “leakage”. Thank God the preschool program he’s in accepts that he’s still not potty trained, but it seems so far away still.

I’m wondering if anybody else out there has dealt with this and what solutions they have found.

#2

I have had some experience in this with my 5 year old son. The doctors kept telling us to give him Miralax. I felt it was fine while he was in diapers but during potty training it was terrible. I found an alternative using fiber tablets (chewable) and stool softeners. It took several months before the constipation eased up and then sveral more months for the behavior of not wanting to poop to go away. My son is now fully potty trained. He still gets a little stopped up from time to time but all in all is where he needs to be. It is a grueling process. Stick with it and try to reassure him as often as you can.

#3

Thanks, I’m going to try using the fiber tablets and stool softener. I appreciate the response! It’s been hard figuring out just what to do.

#4

Sorry your son is still having trouble with this! My son is only 7 mths old now, but he’s had problems with his poops since birth. When I was breastfeeding, he went 12 days once without one!
I tried everything, the only thing with him that seemed to work regularly was prune juice. I have to give it to him everyday or else he gets into trouble. It’s so heartbreaking to see him cry in pain while he is having a bm. I feel so helpless.
I had no idea that this was part of the Digeorge.
Does anyone know why exactly? Is it because their intestines take up too much water? Were you told this will be a lifelong problem?
Thx

#5

Has the fiber and stool softeners helped at all?

Cassaundra

#6

our doctor had us using lactalose as needed. Also look at th diet, No applesauce, rice, bannanas and other foods that are constipating

#7

My son had problems with constipation but it was due to his hernias. I wonder if theres a possibility he could have one? Or stomach muscles are weak.

#8

My daughter is 1 year old with Digeorge and has chronic constipation. We have tried everything. What as worked the best is 5ml olive oil in her milk prescribed by our pediatrician. But she still has many days where she screams in pain. Its terrible watching her go through this.

I had major constipation issues including surgery many years back and did a lot of research to get myself sorted (gutsense website) so I am slowly starting to try these out.

See here:

I have also read up on DiGeorge constipation and it seems many patients have Gastrointestinal complications such as abnormal intestinal permeability and other things as well which can cause the constipation.

Anyway if anyone has had treatments that work please be kind enough to post back here so we can all try them.