Pancreatic Insufficency

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Dear Friends,

Today, Dr. Hart, the Pede. G.I. Doc we have for Connor called.

During Connor's g-tube placement and endoscopy, the Doc ran some

extra tests to see how Connor's total digestive system was working.

What he found today was something not common to RSS that I know of.

I may be wrong. Or...this may be something that's going on with

lot's of our kids and it's just never been nailed down.

The problem is called Pancreatic Insufficency. The pancreas aids in

digestion and insulin production. As far as insulin goes, Connor is

right on target. However, Connor is not producing enough enzymes to

properly digest his food. Yet another strike against the little guy

who could eat orally, but was gaining very little in the form of

calories absorbed due to malocclusion of the jaw and now this. The

good news is that it's an easy fix. There are three different drugs

out there that can aid in his digestion. WE have to see which one

our insurance covers, then give it to him either orally or through

the g-tube (have I told you all how much I love this g-tube!).

Anyway, the doc said that once these extra enzymes were in place,

Connor should starting gaining even more weight! couple this with

the Periactin and the g-tube, I'm hoping for some decent, sustained

weight gain for my little guy.

I didn't get the feeling thaqt this was a regular test performed on

our kids. If any of you have kids with severe gut issues check into

this. I'll find out exactly what the procedure entails and pass it

on so that you can request this of your G. I. docs.

Also, Jenn or Katy, have you guys ever heard of this happeing on a

common occurence with our kids? My doc says's it's either short

term or long term and Connor will have to take these extra enzymes

all of his life. It's not that much different from Lactose

intolerance. If you want to drink the milk, you better take your

pill right before. For RSS kids and all of their guy motility

issues and digestive issues, this may be a silent symptom that goes

unnoticed for years.

Hope this can help anybody out there. Feel free to write me

peronally for more info.

Kearns

Mom to Graham 8 ADD; Cameron 5; Connor RSS