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Re: Roller Coaster

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Hi,

Spencer is on TPN........I can try to help you with anything you need to

know. What info do you need? Also, what State did you say Amy moved to?

...Mum to Spencer: Post Pylorimyotomy, Nissen Fundoplication, G-tube,

Tpner, Eosinophilic Colitis, Gastritis, Esophigitis, NeuroPathic Motility

Disorder of the small Bowel, Dumping Syndrome, Non Functional Stomach,

Athsma, Severe allergies, Total Oral Aversion, 18lbs and loosing, 27 inches

tall (at least he isn't loosing in height! LOL) Whew!!!!! AND anything else

not yet diagnosed.

----------

> From: SJHarlow@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com; gtube@...

> Subject: [eosinophilic gastroenteritis] Roller Coaster

> Date: Wednesday, December 30, 1998 7:27 PM

>

> From: SJHarlow@...

>

> We continue on the Kody coaster here. on the 23rd, my 11-y/o was rough

> housing with Kody and pulled out his G-J. That was a HUGE evolution to

> replace this time -- took over an hour this time. Once in, Kody did

> well for several days, we got almost 1000cc in him one day, until

> yesterday when he went back to old behavoirs (laying on the ground,

> saying I'm sick, refusing liquid by mouth and eventually screaming,

> retching with several hundred cc's out of his GT). Stopping feeds and

> opening the GT helps; we also use Phenergan supositories and Benadryl to

> calm him back down.

>

> So, he has again proven that he simply cannot tolerate enough feeds to

> keep him hydrated or nutritionally sound. He has lost 4-5 lb in the last

> two months. The peds GI is talking seriously about a central line now

> (TPN) and wants to do duodenal manometry to PROVE pseudo-obstruction. I

> don't see the point in doing the test, it would alter what we have to do

> no matter what is causing it.

>

> Anyone with expeirence with TPN and central lines, please update me on

> recent changes. It has been a few years since I have been on TPN.

>

> SJHarlow@...

> http://www.c4isr.com/harlow

>

>

> ------------------------------------------------------------------------

>

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hi there.

is on TPN and things are much easier these days We don't knowas

much about the USA side of it. Why not go on the TPNsupport list. Its the

onelist.com and its a big group.

Have to run good luck Beatrix

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