My husband and I have decided to continue our daughter on the rhythm dosing until we meet with the endo in January (or get in on a cancellation appointment earlier).  If we do not get in to see the endo within a 6 week period we have decided we will meet with our regular pediatrician and get labs done to test 17-OHP and Renin.  We will copy the endo on the results. 

On a personal note, We feel cheated and quite disappointed that we were not made aware of this method of dosing for our daughter when all along we have expressed concern about her weight and the long term use of a high dose of steriod.  We believe this is the right thing to do for her. 

I appreciate all of your input and advice and will keep you all posted.