Re: feeding tubes - our story (long)

[Guest guest]

Annette,

Amber is going to be 12 in January. She had a Nisson and G tube placed

shortly after birth for he same reasons. She was fully eating and

drinking by mouth until Semtember when the teacher at school decided to

force her to dring an entire 8 ounce can of pediasure from a regular

glass instead of her soft tipped sippy cup, on top of her meal She came

home and that night when I sat down with her meal she just began to cry

and shake her head side to side no, no. It had taken me 6 months to get

her fully eating and drinking and was undone in two weeks at school. We

were even scheduled to get her tube out. She had NEVER had anything by

mouth until I got her at age ten. Not even a pacifier.

She is finally beginning to eat again but not drink.

I remimber asking her GI doctor that same question about life span and

he said that is not true. In fact in most cases the nutrician is much

better than that of an average child. There are a lot of adults that

have ben tube fed for various reasons since child hood. I know of one

family that two of the children and the mother all are tubed due to a

genetic condition. I found this out through the Oley Foundation.

Virginia mum to alicia and Amber