That is a very good question. You can tell him about the experiences you have heard of from this board. How life saving everyone has found the Solu-Cortef to be. I have been ranting and raving about this issue all morning to my poor husband. It is almost like some of these doctors just don't get the whole picture of CAH. Like they are NOT experienced enough with CAH. Like they know as much as a textbook can give them, BUT THAT IS NOT ENOUGH! I don't know if they assume that if our child gets that bad that we will just bring them into the E.R. They don't realize if we get a nurse on call over the phone that we have to surpass before talking with a doctor, that they don't realize the grave danger our children can be in. They, like I have heard more than one time, fluff our concern off as an overreacting mother or father. Our we the only ones that truly understand this?  Can you hear my frustration today? My endocrologist mentioned some group when I asked about the lack of study done on CAH. I am sorry to say I did not get the name because he was called out for an emergency. When I mail him my letter requesting my information to be handed out to all new CAH parents, I will add my request for further information of this group.

To get back to your question Lisa (sorry) CONVINCE him to give your this. Demand it! And if the endos. don't feel this is important enough to not give you it, then find another one that does. See if your regular pediatrician could give you the prescription. I will post  to Danny to give us his example of his chart on what to do if the CAH child vomits. I printed this out and took it to my endocrologist and my pediatrician to get both their ideas to either add to it and personalize it to my daughter's needs. We changed a few things on it but it basically is the same. This is something EVERY parent should have at diagnosis, a plan. I wish to God I had one at my daughter's discharge. I think of the times she was so sick and I didn't have a clue what could go wrong. I shudder to think of it. I thank God we got through it. Sometimes luck is just not enough. Is your daughter a salt waster? Perhaps endos. don't think non-saltwasters are as dangerous, therefore they don't take extra measures. Can anyone enlighten me on that assumption? I just don't know. I am sorry for rambling, but this is just too frustrating to sit back and take anymore. We are our only child's advocate. I told my endo. the day we had our first discussion of CAH. I told him I would one day know more than him about CAH.  It is my only safeguard, and sometimes that is not enough. Good Luck Lisa. let us know what happens, and if you still don't get it. LET ME AT HIM!