She need to go to an pediatric endocrinologist (hopeful one that has other CAH patients - ask the doctor if they are treating other CAH patients and how many).  The pediatric doctor might be able to help too.

Anyway - the need to do blood work. It is called a 60-minute cortrosyn test.  It should be done between 6 am and 8 am (because of hormonal surges and without any medication - how often does she get the shots? - be sure to tell the endocrinologist about the shots). Cortrosyn is synthetic ACTH, the hormone produced by the pituitary gland to stimulate the adrenal gland to make adrenal hormones. Blood is drawn before the 60 minutes and after the intrvenous cortrosyn injection.  Hormone levels are measured in both samples. Ask the doctor to test the blood for plasma renin, testosterone, 17-hydroxyprogesterone (17-OHP).

I would also recommend that a blood sample to sent to Dr. Maria New at Cornell University of DNA analysis.  Her web site is listed under the banner (people). She is the best lab in the USA for this testing.  I had it done for my children and it was covered by my insurance. The blood is taken locally and sent to her for human leukocyte antigens (HLA) or genetic testing. They look at the proteins on the white blood cells and the 6th chromosome.  The HLA type B14 is often seem with the nonclassical CAH (non salt waster - probably your neice).

These tests would be peace of mind.  CAH can be very mild to very severe. With the mild CAH - you probably won't die but your quality of life will suffer (you won't feel well - tired, sleepy, drained, weight lost, low blood pressure, dark circles under the eyes, darken skin, thin hair, pain in the lower back; vomiting, fertility issues, hormone imbalances, salt lost, etc). The blood tests are the only way to tell for sure. But you need the right blood tests and specialist for CAH.

Let me know if you need more information!! preston@kreative.net