Hi Natalie,

We were in the exact same boat as you, the only difference is that Julia is not a salt-waster, she is svcah.  My daughter just turned 13 last month and for the past 2 years her testosterone was high (tons of acne).  They slowly raised her cortef dose over the past year and lo-and-behold, her levels are now great and she got her period for the 1st time 3 months ago and for the second time, just this week.

We get her blood work done 2 hours after morning meds (we dose 2X per day also).  I think it depends on the doctor. Julia takes 7.5mg cortef in the a.m. and 12.5mg in the p.m. and .1mg florinef in the a.m.  She is 5’8" tall and about 140 pounds, and the only one of my 4 daughters that has the condition.  All the others are carriers.

We live in Central New Jersey, where are you located?

Beth