Hi Everyone,

We are back from our visit to the NIH. We saw Dr. Winer and she was
very nice. She suggested Ryan reduce his cortisone level, change to
Hydrocortisone instead of Prednisone, and reduce his calcium dosage
to
half of what he was taking. She said he had symptoms of too much
cortisone, as I had suspected. After trying to convert his old dosage
of 7.5mg of prednisone to the new dose of 25mg hydrocortisone, I am
not
sure it is reduced that much. Can anyone give me their opinion on
this?

I am also very concerned about the large dose of calcium Ryan has
taken
over the past 8 years. His current endo didn't want to change any of
his dosages. I am now questioning her treatment.
We also saw Dr. Smith, the cornea specialist. She was great, but
didn't
have much to offer Ryan for his eye condition. She said there just
aren't many cases to go by. There are a few things to try and we are
hoping one of these will help his eyes.

We met a wonderful family at the NIH, whose 9 yr old daughter has
APCED
and the eye problem. I told her about this website and she is very
anxious to talk to other moms of apced children.

Hope everyone is doing well. Please keep in touch.
Take care, Vicki