Hi Linda,
I am so sorry to hear about Tara's difficulties. It rings so true with me as I
have watched my 3 year old go through a year of pneumonias, weight loss,
diarrhea, gas, vomiting and episodes of constipation. She was on TPN for a while
and then just on IV calcium. GI scopes and biopsies were done and nothing
abnormal was found. Julia has been in hospital since March. On Christmas Day she
was started on steroids to see if by suppressing her immune system they could
improve her absorption. Within 2 weeks, her lifestyle had improved so
drastically that I was in shock. She no longer needs IV calcium and in the last
week we have decreased her oral calcium by half because her levels were going
too high. We have also decreased her calcitriol dose. She is eating during the
day and we are feeding her via g-tube at night to ensure that she gets enough
calories. Her diarrhea has stopped after about 9 months worth.
Her doctors are convinced that long term immunosuppression will help her, and
are planning to start her on Imuran this week. I know that Dr. Cherie Deal from
Montreal has treated 2 patients with MMF, another immunosuppressant. There is a
newly diagnosed 3 year old in NY who is also being treated with
immunosuppressants by Dr. Lehman at the Hospital for Special Surgery and is
doing much better. I think they are using Imuran. As I understand it, GI docs
seem to favour Imuran.
There are certainly risks of immunosuppression, and it is not well studied with
APECED, but I think it is worthwhile considering--even with just a month long
steroid trial.
If you would like help connecting with doctors or want to talk about this, we
can set up a call. I was nervous about the treatment as Julia seems to get every
infection going, but I can't ignore the incredible change over the last 4 weeks.
I hope that Tara feels some relief soon--with whatever treatment works.
Jennifer


-----Original Message-----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Sun Jan 20 12:54:14 2008
Subject: [apeced] Re: To those with malabsorption

Hi Julia,
Tara has been having very severe episodes of malabsorption since she
was 26. She has had many diagnoses inclusing the PA, Fat
malabsorption, lack of pancreatic enzymes, microscopic colitis, etc.
Up until this past year she was able to bounce back after a few
months of constant IV's. Now she has lost 25 lbs and nothing is
helping. Even though the diarrhea has improved she is still low on
albumin, potassium, calcium and CO2. She has been in and out of the
hospital all year and had to be hospitalized in California for 12
days this month due to ecoli and pneumonia. They tried some PTN for 7
days using a peripheral picc line and she will have to start TPN this
week, I think. So anything your doctors can shed some light on will
be appreciated.
Sometimes she gets constipated, gassy, etc. but no stomach burning.
She alternates between ravenous appetite and hardly any at all.
I hope your condition is improving and this is only a temporary
situation.
Best wishes,
Linda

--- In apeced@yahoogroups.com <mailto:apeced%40yahoogroups.com> , "juliap99"
<juliap99@...> wrote:
>
> HI friends,
>
> I've been having some rather disturbing GI symptoms lately and am
> getting frustrated that I can't seem to get in contact with my GI
> doctor - I have left 3 messages over the last 4 days!! Anyway, I
don't
> have time to get into my symptoms but am curious as to what others
have
> experienced who have malabsorption with their APS issues. I am
> starting to lose weight because I just can't eat large amounts -
but I
> don't have diarrhea - just veery very active lower GI (this is the
> brief explanantion).
>
> Any comments would be greatly appreciated. Thanks to all!
>
> Julia
>





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