HI Linda,

The IVIG sounds great. Thanks for telling me about it.
I will search IVIG and Apced, so I can tell his endo
all about it. You are so lucky to have Dr. Maclaren
nearby. He sounds wonderful! I really wish we had a
proactive endo who was knowledgeable about APCED. You
would think with our large Medical Center here in
Houston, we would! I am questioning Ryan's endo's
treatment since we visited the NIH, and Dr. Winer
changed his medication and dosages, and the diagnosis
of osteoporosis.
I am so glad Tara is doing better, and hope the IVIG
will help her gain her weight back. Ryan has gained
weight since being over medicated on prednisone. He
was always tall and thin,(6'2"), but now is about
15-20 lbs overweight.
I do believe Ryan was tired quite often while on the
Imuran, and I remember he had several eye infections
as well.
He decided to take this semester off from school to
do his microsoft certications instead. He is also
working with his dad at our business and is getting a
great deal of experience being their Tech Guy, and
creating websites for clients. He hopes to return to
school next semester.
I understand when you say Tara has an amazing spirit
of optimisim. Ryan seems to have the same.
Take care, and talk to you soon,
Vicki
--- lsquittman <lsquittman@...> wrote:

> Hi Vicki,
> Tara's liver function tests were occasionally
> elevated but this is the
> first time they have been elevated for so many
> months. The IVIG
> cleared up most of her problems last time for two
> years but it took
> two rounds of infusions. She is not having constant
> watery diarrhea
> and is absorbing her medication but she is painfully
> thin and Dr.
> Maclaren feels it will stop the diarrhea altogether
> and she will be
> able to gain weight. It should also help the liver
> function return to
> normal boosted by the Imuran. And it provides
> immunity against
> infection. If you do a search -IVIG and APECED or
> APS1 you will see
> that other people with APS 1 and autoimmune problems
> have benefitted
> from this treatment. Can't hurt.
> Was Ryan unusually tired when he was on the Imuran?
> That seems to be a
> major problem and Tara has frequent stomach aches
> which she never had
> with the malabsorption.
> The thing that keeps me going is all the research
> being done, the fact
> that she finally has a doctor who is proactive and
> really knows what
> to do and Tara's amazing spirit of optimism.
> I wish Ryan all the best. How are his studies
> going?
> Best wishes,
> Linda
>
>
>
>
>




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