When you read the articles on CAH put out by these and other endocrine disorder organizations ... do you see that 99.8% of the content discusses diagnosis and types of CAH ... and nowhere or just in little, teeny print and only once states ... can have an adrenal crisis and go into shock and die (which the article ususally is referring to undiagnosed infants). When the truth of the matter is, salt-wasting CAH patients of any age can die within 6-24 hours of an illness. Maybe the matter of there being so many "lousy CAH endos" out there, who don't tell us the serious & deadly consequences when our children are ill is due to the matter that CAH info readily available to them focuses on diagnosis & types, and barely mentions treating illnesses. Addison's information prioritizes adrenal crisis & death matters, those patients are well-informed about treating illnesses. Sounds like time CAH information changed and puts adrenal crisis & illness matters & how fast these patients can die amongst the top priorities of the things to educate the parent's on instead of just diagnosis & testing & administering meds. Seems like what so many of us have dealt with is "endos who were heroes for diagnosing our children, and the hospital staff focuses on their heroism for doing that ... and then we get sent home not knowing the things we need to know to keep our children alive."