Suzanne - Mayo Clinic

[Guest guest]

Ruth and others,

First I want to apologize for not getting

back to the group about the Mayo Clinic. It was a short visit; essentially the

doctor said that we were doing everything we could be doing and that they

agreed with all of the analyses of Children’s Hospital. They did said to

try three more things: 1) take her off of asacol for 2 weeks because there is

an outside chance that it is causing diarrhea; 2) try a lactose free or

low-lactose diet and 3) try a low dose regiment of steroids – 5mg every

other day. Here’s what we did in response to the doctor’s thoughts.

We immediately took her off of the asacol. By two weeks her IBD flare up was

worse, so we put her back on it. Suzanne is being tested tomorrow by a breath

test to see if she is lactose tolerant. Our doctor at Children’s Hospital

felt it was an easier way to tell if she is lactose intolerant. Our GI at

Children’s doesn’t agree with the low dose of prednisone because of

Suzanne’s history with prednisone. She has become steroid dependant, and

it seems every time we put her back on it takes more than it did the time

before to show any change in symptoms. Every time then we try to taper her off

her symptoms begin again at 10mg. I am tending to agree with the Children’s

hospital doctor. Any thoughts from the group?

Suzanne has only been in school two months

this year – she’s been on homebound instruction most of the time. She’s

still pretty behind in the coursework though. Her friends at high school are

not as involved with her as much anymore – I think in high school it’s

easy to get left behind if you are not in school. She still has a support group

from her youth group at church – many of those friends are older than her

but they have stuck by her.

What has ’s experience been? How

is she doing?

LINDA

(Mom of Suzanne,

16; IBD 1/04; PSC 3/04)

From: [mailto: ] On Behalf Of GitaneB@...

Sent: Thursday, April 13, 2006 3:23 PM

To:

Subject: Re: Suzanne

update -- 2

Dear ,

I read the post about Suzanne being in

and out of the hospital. How is she doing with school work and

with her friends? I can actually say and I know what she is going

through.

By the way, did you go to the Mayo

Clinic? If you did, what happened? Did I miss that post on the PSC

site? Ruth