Hi Jennifer,

I am so sorry to hear your daughter has been so ill. I
have not heard of lung involvement and APS, either.
My 24yr old son has inflamed corneas and sometimes dry
eyes. We have seen so many doctors over the years
concerning his eye condition and have tried many
drops. He currently uses steroid drops along with
others, and wears bandage contacts to protect his
corneas.
In January we visted doctors at the NIH in Maryland.
We saw Dr. Karen Winer, the endocrinologist, who has
seen many APS patients. Her number is 301-435-6877 if
you would like to contact her. Her nurse's name is
Karen Dowdy if you need help contacting Dr. Winer.
They are both very nice.
We also saw Dr. Smith, an ophthamologist there, who
was great. Cheryl, who is in that office, can help you
with an appointment if needed. Her number is
301-435-1833, We had a referral from my son's
ophthomologist but I am not sure if you need one.
I also think Dr. Maclaren in New York, as Linda
mentioned, would be a great one to talk to. He is very
knowledgeable about APS and sounds wonderful. We have
considered making a trip to see him.

Please keep us posted on your daughter's condition. We
will be thinking of her, and keeping her in our
prayers.
Vicki
--- 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
>
>




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