Re: any advise would be great

[Guest guest]

Did you read the recent post from the RSS mom to a 15 year-old girl

with her GI issues? Very insightful. Something to consider.

- H

> In addition all that is going on in Maddy;s life she has been

complaing of

> belly pain for months. We were finally able to get her an

appoinmtment with GI

> on the 7th.

> Everytime we hook her up to the pump she cries. When she wakes up

in the Am

> she says my belly hurts and won't eat till lunch. We believe sh

emay need a

> G-J tube instead of a G tube. She is already on prevacid. any

other idea?>??

> When we go on the 7th is there anything we should be asking the

docs???

> Any advice would be great.

> Chrissy

> Mom to

> Louis 6

> Maddy 4 RSS

> Shane 1

> 10 mons

>

>

>

[Guest guest]

I think I missed that post

[Guest guest]

Chrissy,

I hope Maddie is feeling better. Poor thing, what a way to celebrate. I'll be

in NY tomorrow morning. If you have a chance somehow to read this give me call

on my cell (you can e-mail me privately or I'll check in with Jodie Cals to see

if she has your cell #) and let me know if you need anything. I'll be right

there.

B

5 1/2 and Kelli 3

chrissynlou@... wrote:

In addition all that is going on in Maddy;s life she has been complaing of

belly pain for months. We were finally able to get her an appoinmtment with GI

on the 7th.

Everytime we hook her up to the pump she cries. When she wakes up in the Am

she says my belly hurts and won't eat till lunch. We believe sh emay need a

G-J tube instead of a G tube. She is already on prevacid. any other idea?>??

When we go on the 7th is there anything we should be asking the docs???

Any advice would be great.

Chrissy

Mom to

Louis 6

Maddy 4 RSS

Shane 1

10 mons

[Guest guest]

Chrissy,

I work in NYC. If you need anything, please call me at work 212-275-

1573.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

Make sure her GI doctor does extensive and thorough upper and lower GI exams.

They are very easy for the child. My RSS daughter's GI Doc suspected

malrotation of her GI tract and that is exactly what she had. At the age of 4

Hollister underwent laparascopic surgery in an attempt to remedy this. It was a

minor success, although not a final correction. She is most likely looking at

another surgery in the next year or two (she's 15 now) and still gets the bulk

of her nutrition and calories from the Gtube they placed. One of the

significant findings of the surgery however was the discovery of her appendix

under her first rib on her left side. The surgeon immediately did an

appendectomy while in there to avoid any future problems. That's how screwed up

her GI tract was. This phenomna is becoming more and more recognized as a

possible side symptom of RSS, and as a likely contributor to RSS kids

disinclination to eat (due to discomfort). Three other RSS kids in my state

(MN) have

been found to have similar problems. Hollister is now an ordinary teenager

looking forward to her sophmore year in HS (although not so much the homework).

Fortunately for her dear old dad (me) she is still at the stage where she

realizes boys are remarkably clueless idiots and has no time for them. Although

I'm sure that will change this year. Pray for me.

Briggs wrote:Chrissy,

I hope Maddie is feeling better. Poor thing, what a way to celebrate. I'll be

in NY tomorrow morning. If you have a chance somehow to read this give me call

on my cell (you can e-mail me privately or I'll check in with Jodie Cals to see

if she has your cell #) and let me know if you need anything. I'll be right

there.

B

5 1/2 and Kelli 3

chrissynlou@... wrote:

In addition all that is going on in Maddy;s life she has been complaing of

belly pain for months. We were finally able to get her an appoinmtment with GI

on the 7th.

Everytime we hook her up to the pump she cries. When she wakes up in the Am

she says my belly hurts and won't eat till lunch. We believe sh emay need a

G-J tube instead of a G tube. She is already on prevacid. any other idea?>??

When we go on the 7th is there anything we should be asking the docs???

Any advice would be great.

Chrissy

Mom to

Louis 6

Maddy 4 RSS

Shane 1

10 mons