dysphagia (very dyspraxic swallow) needing g tube to thrive

[Guest guest]

Hi there.

Well, it's been a while since I've written. I'm in NH and have a 6 year

old son with many health issues... global dyspraxia, dysphagia, dysarthria,

epilepsy, adhd, hypotonia, irregular heartbeat, acid reflux, and hiatal hernia.

We have been having a horrible time getting my son to eat...not because he is

picky, per se, but that he has such a hard time chewing some things, gags on

some things, gets worn out from eating, can't sit still with the adhd, has to

have all liquids thickened, that even though we have struggled and struggled

making each and every meal and " user friendly " as possible, he has not gained

weight in two years. His bmi is about 1%. I am so sad over this.

We have been discussing the possibility of a g-tube for about a year and have

tried periactin to try to boost his appetite. We have given him pediasure twice

a day for two years ... and even with that, he hasn't gained weight. We just

met with his gastroenterologist and his nutritionist yesterday and decided that

the g-tube is the only way, at this point, to get our little one the nutrition

that he so desperately needs. It breaks my heart that it comes to this, but it

also makes me happy that there is some way to help him.

Has anyone out there gone through this? If so, can you share your experiences

with me ... good or bad. I really would like to hear about it, so that I have

some idea what to expect...from a parent's perspective.

Thanks so much...and Happy Holidays to all!