Kristin-

If you don’t mind me asking, what form of CAH does your son have?  Reason I ask is that the docs are still trying to determine the "cause" of my boys’ Adrenal Insuff.  Both are saltwasters, my younger son is much more severe than my almost 3 year old.  The docs were convinced that my boys have Hypoplasia rather than CAH (boys levels- all seem normal), but in mid December the genetic testing done by the research department @ CHOP (the hospital my boys’ endo is part of) determined my boys do not have a gene deletion causing hypoplasia-  so they are at a loss....  they haved "ruled out" a number of other disorders that can cause AI.  My older son was not diagnosed until he was a 25 months- but we did have ALOT of issues with him, he wasn’t neccessarly sick, just wasn’t "thriving"  he HATED to eat- he is still only 25 llbs- but has gained 5 pounds since treatment (yeah!!!!).  Would love to share additional info with the boys’ docs-  they have reached out to a few "experts" in adrenal disease to help determine next steps. 

Gwen