It seems like you are very knowledgable when it comes to CAH and meds.  I wanted to run something by you and see if you had an opinion.  My daughter is 10 1/2 months right now and weighs 16 pounds and is only 25 1/2 inches long.  This puts her on the very low end of the growth charts and I am worried she will soon fall off the chart!  Her endo which was highly referred to me by another endo has her on Orapred a liquid prednisone (.15cc)  She has severe acne anywhere I go I have several people ask me if she has chicken pox! 

She is very, very clingy and seems aggravated alot during the day.  I ask her endo if we could think about switching to cortef or dex and she said for infants this is what she has always used and she wouldn’t give her anything else until she could swallow a pill.  Her 17 OHP last month was (10) at that time she was on (.2cc).  She did the 17 OHP for this month and it was only (11) so she decreased her dose to the (.15cc) and we will get the 17 OHP done again in 6 weeks.

My question to use is have you ever heard of a child having these problems on Orapred?  I talked to the endo in her office that referred me to her yesterday and I let him know I have made 2 attempts to get her to listen to my reasons and I feel like they are valid.  I let him know I cannot continue to see her fall off the growth chart and I will have to switch endo’s if something isn’t done soon.  I even referred the endo to the Consensus Statement on 21-Hydroxylase Deficiency which said Hydrocortisone was the drug of choice during infancy and prednisone could be used at or near the completion of linear growth.  I am supposed to hear back from the endo on Friday so I will post her response when I get it.