Why we went the route of the g-tube

[Guest guest]

Dear Friends,

Recently it was asked on our list serve what determines the need for

a g-tube. I can only share our family's decision process. I feel

that we are not the typical RSS case in that Connor didn't need a g-

tube in infancy. It was as he got older that we ran into more

issues with eating and digestion.

Last July I was on cloud nine! We were at convention and Dr. H. had

just pronounced Connor " one of the healthiest RSS kids I've ever

seen. " I think I floated out of that exam room (lol). What I

didn't know was that Connor was at the peak of his two year old

growth spurt. His appetite was up naturally. In fact, with the

Periactin, Connor could eat an entire Mc's Double

Cheeseburger. It took him an hour to chew it - but he ate it! We

even got to the point that we thought we didn't need the speech

therapist anymore. Hah!

The problem began as Connor's growth velocity dropped off, so did

his appetite. Dramatically so. Even on the Periactin and with high

calorie, nutritiously dense food, we started flat lining on the wt.

chart. Then as flu season began we started losing. Connor lost

three pounds in three months. He got down to 19. He's 31 inches

tall. Soooooo, the Pede. Endo was hesitant to start the gh because

Connor was losing his fat reserves quicker than we could replenish

them. He recommended we see our Pede. G.I.

This doctor examined Connor and found that as his teeth came in, his

abilty to chew, laterilize food, and swallow was becoming

compromised due to a malocclusion of the jaw. It wasn't as

noticeable when he just had a few teeth. However, his jaw is about

1/8th of an inch off and he can't close it properly to form closing

sounds on words or chew properly. He also has a high palette.

Connor will take a bite of food, chew it TWICE and swallow it. As

you all know, digestion begins in the mouth, not the stomach. It is

not unusual to find a bolus of food in Connor's diaper that simply

could not be digested properly in his stomach. Corn, green beans,

pop corn, peanuts, peas, all came through intact. So, Connor wasn't

benefitting from the nutrition he was putting into his mouth.

Then, as Connor became more self-aware, he stopped eating to please

me or copy his brothers. He used to eat socially because we all

were doing it. However, as he get's older and realizes HE'S NOT

HUNGRY, he stopped eating anything in bulk. His maximun now is

three bites of food per meal. You can't, and I mean can't get any

more down him.

So, losing weight; inability to benefit from the food he did take in

orally and a lack of sufficent calories in a day is what drove us to

the decision to g-tube Connor. The medical terms for Connor's

condition were Failure to Thrive, Malocclusion of the jaw, Dysphagia

and Anorexia.

I have to admit we are still adjusting to our new situation. I'm

not completely used to it yet, but I find the routine getting easier

every day. Today, Connor held the q-tips for me while i cleaned his

wound site and even handed me the bacitration ointment. He's

getting used to it too! The good news is that I am seeing a benefit

already. Last night at 30cc's/hour, I gave Connor 1 1/2 cans of

Kindercal. That's up 1/2 can from normal. He also drank 5 oz. at

his 5:00 a.m. bottle. We are slowly starting to get more calories

into him. I'm actually looking forward to the weigh in tomorrow and

next week.

Talk to you all soon!

Mom to Graham 8 ADD; Cameron 5; Connor RSS Kyphosis G-tube Periactin

Prevacid Zantac GH in two weeks.