To G-tube or not to G-tube...that is the question.

[Guest guest]

Howdy Folks,

I can't remember the last time I posted. Suffice it to say life has

been hell since the end of our fund raiser. All the kids have been

sick and my husband who is Bi-polar was not managed very well by his

doc cuz he took him off the mood stabilizers three months ago. I

can honestly say I came within a 1/4 inch of committing him to the

psyche ward on several occassions. The good news is that we have a

new psyche doc who noticed the drug imbalance gave him a month's

supply in the office and I have my husband back after only two days

on the new meds.

Whew!

Well, here's the scoop on Connor. He ain't gaining weight and I

find myself really looking hard now at the G-tube option.

As far as RSS kids go, Connor would have been labled an " eater. " He

could consume 2-4 oz of liquid or food on his own. When on the

appetite stimulant, this improved to 6-8 oz of food at a time. Not

great by " normal " standards, but adequate for growth and weight

gain. This has come to a screeching halt.

Over the last two months, Connor has had two head colds, cut three

teeth and had an intestinal virus. All of these things contributed

to poor appetite. He often threw up whatever medicine I tried to

put in him so I took him off the Zantac and Periactin. He threw

ketones but never got severely hypoglycemic. At the last Pediatric

G. I. visit, Connor's weight was 15 lbs 7 oz. Three months earlier

he was at 15 11. His head has grown and he's gotten some length 27

3/4 inches, but no weight.

As is the norm with RSS kids, you get them to eat something really

good and full of calories, and then they stop eating it. We had a

swallowing study done and to this day, Connor will not eat Peanutt

Butter on bread anymore. His dyspahgia is still there and he seems

almost to be regressing in chewing capabilities. Something we had

overcome was negative eating expereinces (choking and gagging)

causing a food strike. These have come back. Connor will chew

something, try to swallow, gag it back up and then quit eating. He

also wants to come into my arms and be comforted. Connor can drink

from a straw but only wants a bottle. As this is the primary means

of getting nutrition into him I don't quibble with all the " bottle

etiquette " I hear from others. I give Connor a bottle at bedtime

and he sleeps with it, sucking on it periodically throughout the

night. These precious calories at night have kept him from losing

even more weight. I realize I'm jepordizing his baby teeth but

since he's going to lose them anyway I feel that it's moot point.

Having acheived a modicum of health, I put Connor back on the

Periactin and Zantac. Results: three cans of pediasure in a 24

hour period and about 1/2 cup of food (cheerios, cheese crackers,

pudding, hot dog meat or deli turkey meat). He had some chinese

food chicken tonight but only after chewing them, spitting them back

out and then a few minutes later trying again. Our nutritionist

sent us some Duocal to start adding to his wet foods. She's looking

into some other supplements for him.

What is the criteria for a g-tube? How low does the BMI have to go

before this type of intervention is done? My GI doc said give him a

chance orally since it's Spring time and the flu season is over. I

am fortunate that he is in contact with Dr. H. and also treats

another RSS child in central VA who did need a g-tube. I know that

my speech therapist is totally against a g-tube based on the

complications that come along with them. Honestly, I don't know

which way to turn save for the fact that I want what is best for

Connor. Hopefully in October we will be starting GHT. I just hope

that we've acheived enough body mass in order to start that

treatment.

To summarize: Connor is 18 months old. Weight: 15 lbs 7 oz. Length

27 3/4 in. Head circumfrence 40%. He can eat, but is the typical

RSS child in that it is not regular and can be thwarted by anything!

The older he gets, the harder it gets to provide him with food that

he can consume willingly.

His total calorie intake for a day is anywhere from 850-1000. Most

of this is acheived by three bottles of Pediasure. When he's sick,

this drops down to two bottles.

Developmentally: Right on target. Walking, talking, sleeping,

playing.

RSS phenotype: Slight assymetry in left leg - one lift in the left

shoe and two arch supports for flat feet. Dysmorphic features.

Small mouth. Ciphosis of the upper spine. Dysphagia. Connor is on

Pediasure, Periactin, Zantac, and Duocal.

Any wisdom sent our way would be deeply appreciated.

Fondly,

Kearns

Graham 7 ADD; Cameron 4; Connor 18 months SGA/RSS IUGR.