Laura, Your message could have been written by me. I too just found this board Christmas week...as well as tons of other info on the internet. Why did I not realize how serious CAH could be? My son Brayden is also 2 yrs. (well, he will be 3 on Feb 19th ) After finally talking with his endo yesterday I got the paticulars on him. He has the classical CAH and is a salt waster. This does have different degrees of severity and he is on the mild side for the salt wasting. Some kids need even more salt than him. Where he is on florinef 1/2 tab morning and night, another child may need that plus salt supplements in the food plus salt tablets. So what does it mean for him? It means it is STILL severe and if he breaks a bone to call 911 immediatly. Other emergencies include major blood loss, lots of pain ( like the broken bone ) diahrea(sp), vomitting, high fever ( 102+) The endo added that if it was the fever, vomitting flu bug type it would be fine if we took him to the er right away. The broken bones and worse requires immedite 911- ambulance. I asked about the cortef injectable for these crisis. She felt that 911 was better... And she highly recommended the medic alert bracelet. Other things worth noting... She was all for looking into the NIH study ( we are interested ) but did remind us that it is a study with no promises.. hope yes. guarantee no. But also that if it didnt directly help Brayden, it might the next child. I am all for that. What would we all have done without the mothers and fathers before us that allowed their children to be in a study which led to medical advances that led to our child being alive today? She also felt that ( for me ) taking cortef while pregnant would be a huge risk ( from the high bp ) but worth doing. ( I had Brayden 10 weeks early from pre eclampsia ) Susan