Hi Jennifer,
What type of steroid was used with Julia to suppress the immune
system? Tara has been on Imuran for the autoimmune hepatitis and it
made her diarrhea worse. I know they use Immuran now for Crohns
disease with some success.
Our experience has been that nothing works the same way twice and the
diarrea seems to run its course reaping havoc along the way.
Are you taking Julia to see Dr. Deal? I have heard great things about
her and am anxious to know what she suggests.
I hope Julia will be back home soon. It reminds me of Tara's long
hospital stay for over 4 months when she was also 3 1/2. I know how
hard it is.
Best wishes,
Linda



--- In apeced@yahoogroups.com, "Orange, Jennifer" <jorange@...> wrote:
>
> 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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