I just spoke with the endo and he did admit that Ashley is the only patient of his that is on this high of a dose.  He said that only 3 of his patients are even on dex.  He said that twice a day works for her instead of once or three times a day.  He also stated that her weight has always been a factor.  I did correct and refer him to her chart that shows that the weight gain did not occur until she started the dex.

I said that I understood that her levels were out of control at that time.  But now she is older and could we switch her to something else to see how it goes.  He agreed that we could switch her to hydrocortisone and monitor her progress on it to see how she does.  He said that before when she was on hydrocortisone she was taking 3ml? (I think that is what he said) per dose three times a day.  He said that was a lot and that her levels were out of control.  But, that was then and this is now.  So he is going to send me lab work.  He will look at the labs and decide on the dosage for hydrocortisone.  I specified that I would like to try the circadian rhythm dosing as I have heard that other patients have responded well to this.

He said that we could try this and see what happens.  He also stated that he would share the labs with me so that I can view her numbers myself.

Thank you everyone for your advice.