Hi Pamela,

I struggle with this, too: my SW daughter is 9. We lost a son to adrenal crisis in 1991, when he was 2, so I have to try really hard not to be overprotective. Our endo seems to think that about age 12-14 (depending on the maturity level of the child) is an OK time to teach them to give themselves a shot; of course, if they were disoriented or unconscious, that wouldn’t help, so you’d have to rely on people that they’re with or their medic-alert bracelet. A scary prospect, but you can’t stop your child from actually living life! I’ve found that a bit of prudent planning and a LOT of praying is about all we can do!

JOANNE - I would disagree with you that parents are too overprotective nowadays - I believe we are just finally starting to realize how serious CAH really can be. From talking with many parents, I believe that there seems to be different "degrees" of CAH (just as some diabetics are classified as "brittle"): some kids seem to have an adrenal crisis from nothing more than a bad cold or stomach bug, while others - like yourself (and my daughter, thankfully!) - can handle more physiological stress to the body. If you never stress dosed when you were a child, you were obviously not a "hard to control" CAH’er ... if you had been, I truly believe you might not be here.

Our son was "hard to control", and died of adrenal crisis after just 24 hrs of cold-like symptoms. He vomitted once, was given stress dose meds, but no shot as this wasn’t part of the treatment in the early 90’s, where we lived. I believe that if he would have received an IM shot sooner, things might have turned out very differently.

I believe wholeheartedly that you can’t let fear rule your life, or the life of your child, but you MUST take CAH seriously and treat it for what it is: a potentially life-threatening condition.