--- In apeced@yahoogroups.com, "Jennifer Orange" <jorange@...> wrote:
>
> Hello all,
> My name is Jennifer. My two year old daughter, Julia, was
diagnosed 2
> weeks ago with APS type I. She has been sick on and off for about
a
> year, and just completed 10 weeks in the ICU on a ventilator. She
has
> had fevers, rashes,oral thrush, vitiligo, dry eyes and mouth and
> hypoparathyroidism. She also aspirates, which is thought to have
made
> her so suceptible to the lung infection that she got which put her
in
> the ICU.
> I was wondering if you have ever heard of lung involvement with
APS or
> aspiration. The doctors here in Toronto are still scratching
their
> heads over those symptoms. Have you heard of the dry eyes and
mouth
> and any possible treatments? I would also love to hear who you
think
> are the best doctors to speak to about treatment options.
>
> Thanks,
> Jennifer

Dear Jennifer,
There is a wonderful doctor in Montreal with much experience
with the syndrome. Her name is Dr Cheri Deal. e-mail
cheri.l.deal@.... She has experience with the eye problems
that go along with the syndrome.
TO ALL ON THIS LIST: The last time Dr Deal e-mailed me she said
she was interested in anyone who is getting treatment with
immunosuppressives that is different from the conventional
treatments out there. Good luck, Susan