Hi Jaci and welcome to our forum. For so many years I had no one to
talk to and so little comprehension of this illness. I rely on so
many members of this group for support, knowledge and
understanding. Best wishes to everyone out for a happy holiday- no
matter which holiday you celebrate.
Linda



--- In apeced@yahoogroups.com, Jaci OBrian <jaciobrian@...> wrote:
>
> Hi Vicki & everyone else in the APECED group!
> My name is Jaci, and we were the lucky family that got to meet
Vicki, Tom & Ryan when they came to DC in January. We just visited
Dr. Smith again yesterday at NIH, Emily goes in next Wed. for her
routine EUA, Dr. Smith wants to do a biopsy as well, so she can
study the cells in her eyes more closely. She is also going to give
us a referral to see Dr. Winer the endo dr. as well. Emily has been
doing great, we really have had an uneventful year, compared to
others. (knock on wood). Emily just turned 9 last Friday too! For
those that don't know us, Emily was diagnosed with APECED 5 years
ago, after showing symptoms for 9 months before then, and no one
could figure out what was going on, after sending us to different
doctors. Luckily, once we moved to this area, it all was figured
out. My husband is in the army, so we see drs. at Walter Reed,
which have been great, we see several endocrinologists there. Emily
has hypoparathyroidism, hypothryoidism, photophobia,
> vitilago, ??...ok, and I know I am forgetting some other things
too, obviously not to prevelant though.
> looking forward to meeting more of you in this group.
> Vicki, I still need to send you those pictures from when you were
here, I will look thru my computer and try to send them now, so I
don't forget.
> Happy Easter!!
> Jaci :-)
>
>
> ----- Original Message ----
> From: Vicki Robson <vrobson1@...>
> To: apeced@yahoogroups.com
> Sent: Saturday, March 10, 2007 3:07:09 PM
> Subject: Re: [apeced] Re: Hi
>
> 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@optonlin e.net> 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
> >
> >
> >
> >
> >
>
> ____________ _________ _________ _________ _________ _________ _
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos. yahoo.com/ new_cars. html
>
>
>
>
>
>
_____________________________________________________________________
_______________
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos.yahoo.com/new_cars.html
>