I have a son Stephen with CAH - born on 22 Dec 93; he almost died at 5 weeks because we did not know he had CAH. Then we had Jessica a year and less than one month later - 17 Jan 95. Stephen was 3 and Jessica was 2 - both with flu... but one night Jessica and Stephen got a really bad fever - the ped endo on call said to double the cortef and the call the ped - she said that we shouldn't run to ER with just the fever and bring in the office in the morning and do what the ped endo said to do. The fever never did go down... I must have called the ped endo three times that night.. And in the morning at 8 am she was in a coma. I called the ambulance she had a heart beat. But shallow beathing and doll eyes. My husband went to the hospital in the ambulance. But he the ER mabye 2 hours - my husband calls and says to come down. I left my 3 year with the neighbors. The nurse said they are going to stablize her and transfer to the hospital where the ped endo practices - with helicopter flight. It did not sink in that she was so serious. We drove to the over hospital - 15 minutes away. I thought in my mind she was going to be okay. But it wasn't - her heart had stopped 45 minutes in the other hospital and she was on a respiratory. After 2 days she was brain dead. A month after lossing Jessica - I became pregnant with Adam. He has CAH, too. Adam is going to be 1 years old on 29 July 99. His CAH is like Jessica - had to control. The ped endo (same one as Jessica and Adam) prescribed too little sodium for him. But he is improving after I called Cornell University in New York City and they straighten the ped endo. I am like you I mourn for Jessica every day. I love her and miss her so much. She was a happy, smart little 2 year old. But her CAH was not managed tightly - the ped endo only wanted to see her every 6 months.. that was a problem because her levels were always off. If I would have, should have, could have.. would only bring her back. I now carry extra solu-cortef with me... I had ran out.... and I don't wait with a fever or illness before going to the ER and giving the shot.. roberta email me - preston@kreative.net