Hi Julia,
It sounds like it would be genetically unlikely for your nephew to have APS, but
if your sister in law is interested in testing, it might put her at ease.
My daughter was well until 12 mos old. She then got terrible thrush that really
took a couple of months to clear up with diflucan. She had terrible breathing
problems due to aspiration pneumonias, but did not have sleep apnea, which
sounds like what your nephew might have. It might be wise to have your nephew
seen by a pulmonogist who specializes in sleep disorders to ensure that his
breathing is ok.
Just for your info, our daughter developed hypoparathyroidism at 2.5 yrs and
Addison's disease a few months later. She is now on a trial of MMF (an
immunosuppresant) and seems to be doing better with it. Her calcium and
calcitriol doses have been reduced by half and she is now weaning off of
prednisone, which she has been on since December for malabsorption.
Good luck!
Jennifer
Jennifer Orange
Torys LLP

----- Original Message -----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Sun Aug 17 12:12:31 2008
Subject: [apeced] Re: How did it all start in the babies?

Hi Julia,
Wish I could help but Tara's symptoms were quite different. We didn't
suspect anything was wrong until she was 2 1/2. Her only problems till
then were poor sleep and chronic constipation. At 2/1/2 she started
have febrile seizures and tune-out episodes. Evaluations were incorrect
up until age 3 1/2 when she was in tetany and couldn't walk. Then the
diagnosis of HpTH from unknown causes was made but no one knew about
APECED in the 70's. We were told she would probably get Addisons
because a connection had been made by her pediatric endo. and diabetes
was also in the future.
I sincerely hope that your nephew's health is improving and he has a
normal, well life.
Linda





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