Dear Diana,

I am a Family Physician married to an Internist (Internal Medicine physician).  We adopted a 3 year old with CAH 2 months ago.  I confess that as a physician, I was quite clueless about CAH and adrenal crisis until our adoption.  It has been a humbling experience learning about CAH and treatment.  I am so sorry that you had to go through this experience.  I can tell you that CAH was only briefly mentioned in medical school, and that I myself had never seen a case of CAH before our adoption.  Both my husband and I have been out of training and in private practice for 7-8 years.  If you had walked into my office, I would have had to scramble to read up on CAH.

I agree with the many suggestions that you ask your Peds endocrinologist to call the hospital/ER physician in charge and explain how seriously ill your daughter had been.  Your endocrinologist must stress that CAH needs to be treated correctly and immediately.  As a physician, I humbly confess that some of the most painful and important lessons I have learnt were from making wrong/bad decisions and having another doctor say "hey, you messed up..."  OK, I’ve had my rear end chewed up a few times in training by my attendings.  But, you know, that’s how we all learn to be better physicians. 

Also, you must have a pediatrician/FP you bring your child to locally.  Have your primary care physician call the ER doctor if you get stuck in the ER.  Another MD recommending immediate treatment almost always goes further than a parent demanding a steroid shot

Again, I am sorry you endured a nightmare.  But, you guys are right.  We doctors don’t know everything.  We need to keep learning.  May I suggest a one page medical write up on CAH and adrenal crisis instead of a book to send to your MD/bring to ER with you.  Your pediatrician/FP/ER doc will be able to skim through one page without problem.  But, if you donate a book, it is more likely to be left collecting dust on a shelf.

L’smother