3 yo/gtube/oral aversion/arnold chiari

February 22, 2001

I'm posting this to the gtube and chiari support groups as a question

relevant to anyone with children who, like , may have a history of gi

issues and neurological issues including arnold chiari.

Specifically, I'm puzzled because we have hit a point whereby will eat

more or less comfortably up to 3 1/2 ounzes of pureed food. After that,

coughs, retching, and oral discomfort follows, needing us to syringe the

remainder of the meal. What's puzzling is that syringing the food causes no

discomfort, the discomfort arises from oral intake.

Given a long history of malabsorption and reflux, Emi was 100% tube fed but

later learned to eat by mouth. Associated with that were the usual

complexities of a 2 month eating program out of state, lots of emesis, etc.

etc. She was on steroids for a long time for intestinal inflammation, but

her Jan endoscopy was so favorable that we slowly finally weaned off

steroids. This is when our oral problems worsened, YET, her stools are

normal and we have no other signs of malabsorption. I'm wondering if ACM may

be causing the " set point " whereby a degree of fullness makes her feel gaggy

and very uncomfortable. Or, could the steroids have been working not only on

the intestinal inflammation, but somewhere in the CNS (central nervous

system), to improve oral intake. I know steroids make you hungry, but still,

this does not explain the very marked discomfort past 3 ounzes of oral

intake, with no problems on syringing food. We have weaned off of Prilosec

from 2xs to 1x per day. When we tried to take off the Prilosec, she

verbablized chest burning, so we are still on 1/day. Is this possibly reflux

that needs the original Prilosec dose of 2/day, is this steroid withdrawl,

is this just oral aversion after fullness, or is this neurological??? It is

NOT behavioral, I know this given my understanding of her when eating issues

are behavioral. This pattern is physiological. Any insight welcome. Thanks

Sylvia

Mother to 3 1/2, IUGR, FTT, TPN, villous atrophy, malabsorption,

reflux, gtube, Neocate, now oral eater to a setpoint, hydro secondary to

ACM, ventriculostomy, short stature, steroid use for a long time, 6MP for 10

months, normal speech and cognitive...but oh so challenging overall!!!!!

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