Dear Teri,

Your post has alarmed me. She sounds oversuppressed and why is she on florinef? Only Salt wasting CAH children need it, and I have never heard of a child diagnosed with the non-classical (or late-onset  type) who needed florinef. It does not mean that this is not accurate, but it certainly is unusual. Also, her dose of prednisone is quite high for a non-classical child CAH of her age. Is your granddaughter being treated by a board certified pediatric endocrinologist with experience treating children with CAH?

Please contact me off board and can make a recommendation for a peds endo in your area who has experience in this disease. Our organization has an extensive list of CAH-experienced peds endos throughout the US. I don't want to worry you, but her treatment is not the usual for NCCAH and she sounds like she is having some problems with the treatment as prescribed. My email is kelly@caresfoundation.org or you can call me at 973-912-3895 or toll free at 1-866-227-3737.

Sincerely,

Kelly R. Leight, Executive Director
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support)
P.O. Box 264
Short Hills, New Jersey 07078
973-912-3895 (CARES voicemail)
URL: www.caresfoundation.org
email: kelly@caresfoundation.org