Well, what is the problem with all these endos not knowing about adrenal crisis matters? My daughter died from an adrenal crisis according to the ER doc, the endo never knew the ER doc wrote that, and the endo wrote "seizure and hypoglycemia and cardiac failure" as reason for death. I received the PENS booklet "Cortisol Replacement Therapy" and their manual chapters on adrenal insufficiency and CAH in the mail today. The term "adrenal crisis" is written ALL OVER their materials, along with a lot of other things that too many of these endos aren't telling us BUT SHOULD HAVE. It's also completely clear to me now that the endo never consulted with the other endos in his office(ugh, who knew these things about CAH). How come these endos aren't asking the endo nurses in their depts for available patient informational pamphlets, etc. on CAH (arrogance & pride)? PENS also has a list of CAH information resources that we can obtain. ALSO, I posted before under "CAH audio tapes" - can you believe this - I know the birth of my twins spurred the endo to do this ... 9 weeks after the twins were born, the endo gives a presentation open to the whole hospital staff AND made a Continuing Medical Education audio tape about CAH (it did get approved to be a CME course!) ... but yet the guy never told me about an adrenal crisis, how serious vomiting is, and a bunch of other stuff he should have told me. I resent so much that he spent hours & hours & hours writing up his "CAH types & diagnostics course" - but yet didn't have 10-20 minutes to tell me "what I needed to know in an illness to prevent my children from dying." Ugh.