? any kids out there with g-tube for dysmotility

[Guest guest]

Happy 7th Birthday Sam!!! Darla: mommy to Asenath, Zipporrah, and the gang ? any kids out there with g-tube for dysmotility feel like Asher's the only one who has the G-tube "simply" b/c of dysmotility from his stomach down and not b/c of swallowing or aspiration issues, Zach has perfect swallowing and Sam only has some mild swallowing issues. Certainly not enough to cause him to need a G tube. But they have severe and progressive pseudo-obstruction syndrome (dysmotility of the entire GI tract). Zach started with a G to supplement his oral eating at 12 mos, went to a combination of J tube feeds and TPN (Intravenous nutrition via a central line) by the time he was 7 and since age 11 has been 100% TPN dependent , unable to tolerate any J feeds. Sam had an NJ tube by the age of 8 months, permanent J tube and feeds at 12 months and 100% TPN dependence by the age of 20 months. He is 7 years old (today as a matter of fact is his birthday!) Both still have a G tube and a J tube but they simply open for venting/draining - otherwise they get very distended, nauseated, and then intensely ill. All from dysmotility. I wish they were unique but I think many kids on this list suffer from dysmotility of different severities. Annewww.caringbridge.org/wi/zachsamPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

feel like Asher's the only one who has the G-tube "simply" b/c of dysmotility from his stomach down and not b/c of swallowing or aspiration issues, Zach has perfect swallowing and Sam only has some mild swallowing issues. Certainly not enough to cause him to need a G tube. But they have severe and progressive pseudo-obstruction syndrome (dysmotility of the entire GI tract). Zach started with a G to supplement his oral eating at 12 mos, went to a combination of J tube feeds and TPN (Intravenous nutrition via a central line) by the time he was 7 and since age 11 has been 100% TPN dependent , unable to tolerate any J feeds. Sam had an NJ tube by the age of 8 months, permanent J tube and feeds at 12 months and 100% TPN dependence by the age of 20 months. He is 7 years old (today as a matter of fact is his birthday!) Both still have a G tube and a J tube but they simply open for venting/draining - otherwise they get very distended, nauseated, and then intensely ill. All from dysmotility. I wish they were unique but I think many kids on this list suffer from dysmotility of different severities. Annewww.caringbridge.org/wi/zachsam