Megacolon

I just responded to a comment from a family considering a child from China with megacolon. I hope adding what I told her might help others looking for some basic, first-hand, information.

Our information said Lila was found at 2 days old with a swollen abdomen so she has had problems since birth. The research I originally did led me to some sites about Hirschprung's disease. It was hard to find any definite information on-line with the limited info we received from China. Even so, we decided right away to accept our referral because my sister has worked for a colon-rectal specialist for over 30 years. They referred us to a pediatric internist.

When we got Lila the orphanage said the only treatment they have been using is glycerin suppositories. That's what we used (sometimes twice a day) in China and until we had her doctor's appointment after we got home. I felt so bad having to give a child that didn't even know me a suppository (no wonder she bonded with my husband first, poor baby..) If she doesn't go she gets uncomfortable, cranky, her tummy gets swollen, and I can feel hardness on her right side if it's bad.

We were given the xrays that had been done in China. From what she could see, our specialist here does not think Lila has Hirschprung's disease. Hirschprung's is surgically treated by removing the section of the colon where the nerves are not functioning. During the healing stage they have to have an ostomy to give the colon time to heal. Lucklily Lila won't have to have surgery. We use Miralax which is a stool softener daily. I adjust the dose depending on if she went the day before, what we ate, activity level, how much liquids she drank, etc. Usually 2 1/2 to 3 teaspoons mixed into a little juice or milk. It's a flavorless powder so she doesn't even know she's getting anything.

Our doctor here also said if babies are constipated when they are very little they learn that it hurts to poop so they don't. This holding it in causes the colon to stretch then the muscles can't contract properly which adds to the already existing congenital problem.

We didn't know for sure how severe her condition was until we got there, I guess we're still learning. If you are not afraid of a lot of poop coming out of a little child, I would go for it! We had colic/constipation problems wtih our bio daughter when she was an infant so it's not much worse than that was. We have added a lot more whole grains, fruit, veggies, to our diet that we all should be eating anyway.

Only in the midwest...

We took a day trip to Des Moines to get Lila's birth certificate. Somewhere in the middle of Iowa this passes us, just driving down the freeway to her next destination like it's totally a normal vehicle. So Grace asks, "Is that a real cow head?"

Sisters

A sister is a little bit of childhood that can never be lost.

Marion C Garretty

Our first doctor appointment

Lila had her first appointment today with the pediatric internist. She agrees with the megacolon diagnosis from China. She does not at this point think it is the more serious Hirschprung's disease that would require surgery. They did x-rays in China that we took along today, from what the doctor could see she doesn't want to do any more x-rays or biopsies at this point. She will have a radiologist review the x-rays also. We have started a stool softener, 3 times a day for the next 3 days, to get everything cleaned out. Then only once a day for 4 weeks. We will go back to reevaluate at that time. When we accepted Lila's referral there were a lot of unknowns about her medical condition. We weren't sure if she would require surgery or medication or dietary management. We feel really lucky and very relieved that she won't be having surgery at this point.

Say a prayer for little Jadyn from our travel group, she undergoes open-heart surgery on Wednesday. http://ourjadynpanda.blogspot.com/

Chrissy