I can’t seem to find a doctor that is willing to be informative or even caring about our sons CAH.  Well for starters our sons second newborn screening is the one that detected the CAH.  Our pediatrician tested his 17-OH and found it to be in the 3000 range.  So, he sent us to an endocrinologist, who happens to be the #1 at TTU for endocrinology.  This docotor has us in and doesn’t want to explain anything or ease our concerns.   He doesn’t even want to run a second 17-OH on the baby.  But, thankfully my mother-in-law insists on another test.  The dr. puts my son immediately on 5mg of Cortef every 8 hours.  Soon after my son continues to cry all of the time, his skin turns grey and he’s gaining weight like no other.  7-10 days later we get our test results and I get a call from the doctor himself saying that my sons 17-OH has dropped and he may not have CAH after all.  He instructs me to stop the steroids and go on with life and he will see us in 2 months.  So, his 17-OH had dropped to 2284, but this doesn’t ease my mind so we get a second opinion.  We are in Tx and had to drive to Albuqurque to get a doctor to see him.  She says that the tx doctor had him on a crisis dose of steroids and that his levels are now down to 1800 give or take a few.  At this point we have been off of steroids for about 2 weeks.  She wants to do a sim test but we decide to wait. 

So, has anyone had these issues?  What is a normal 17-OH for a healthy child?  A child with CAH?  Any help is appreciated.