Hi Julie,
I've finally had a moment to hunt for the article I mentioned, in my post above. I found two articles actually. I'll post the Title, Author and Journal. Have you access to a medical library or an interlibrary loan service to request the articles? If you have trouble, just email me, and I will be able to send them to you.
Author: Charmandari E. Brooke CG. Hindmarsh PC.
Title: Why is management of patients with classical congenital adrenal hyperplasia more difficult at puberty?
Source/ Journal: Archives of Disease in Childhood. 86(4):266-9, 2002 Apr
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Author: Charmandari E. Hindmarsh PC. Johnston A. Brook CG.
Title: Congenital adrenal hyperplasia due to 21-hydroxylase deficiency: alterations in cortisol pharmacokinetics at puberty.
Source/Journal: Journal of Clinical Endocrinology & Metabolism. 86(6):2701-8, 2001 Jun
How is your daughter at present? Any improvement?
Regards Rosalie