Re: ? any kids out there with g-tube for dysmotility

[Guest guest]

Anne,

My son has a g-tube purely for venting purposes. We do not use it to feed him, we just have to vent him daily when he is bloated. My son is 8 and is diagnosed with mitochondrial encephelomyopathy. Hope this helps for you to know you are not alone!

Heidi Harmon

President, KC Chapter

UMDF

[Guest guest]

Anne...

that is an interesting reason to have oen...I guess I dont' understand how it would help dysmotility. had dysmotility and a gtube...we got it for swallowing. With dysmotility being autonomic, and dysautonomia being an issue with brain dysfunction. I didn't think they could cure it by putting in a gtube. I know Carnitor is thought to help motility and it helped us at times. s motility issues would come and go, up until a couple weeks before he died. Of course, we didn't realize he was dying because there just weren't any big flags until the day of, but the longest he went was about 2 weeks without a BM and that was the two weeks before he died. He had HUGE BMs for probably 6-8 months before he died...we actually had to call Roto-rooter out a couple times because they would clog the toilet! I remember someone on the list, back then--she doesn't post anymore--that installed an industrial strength toilet for the same problem with her child! That may not even be what you are asking about, but its a funny (in a sarcastic way) issues we mito parents, deal with!

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comwww.LifeofLoveProject.org