Robertahttp://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf
This is very important web site. Please print it out and always have it with you. Insist that the doctor prescribes solu-cortef and you know how to use it. This web sites has pictures and step by step instructions on how to give it. It is very important!! I don't a good doctor would let you out of his./her office with a CAH baby and not give this to you! And the instructions on the cortef should say triple for 101 fever (but I triple for 100 fever because the themometers are not accurate). You can not over dose for a fever or illness. Cortef injection in not JUST for vomiting or a broken bone. A fever can kill your baby!! There are several parents on the CAH board that sadly know that a fever is an emergency. My daugther was 2 year old and died because the doctor told me to just double the cortef. It was not enough. In the morning she was in shock and died after her heart stopped in the ER. They revived her but it took 45minutes. She was brain dead and never breathed again after two days on a respirator. She should have had the injection. Please know how to give the injection yourself. You can not expect the ambulance to give it. For one thing they will not have the drug. The ER do not just have the drug waiting for you and by the time they order it - it will be too late. I have in ER waiting rooms for hours with no treatment. You must know how to give the solu-cortef. I high fever requires an injection of solu-cortef - I fever over 102 or 103 - give the injection. And get the IV fluids and antibodics immedicately. A baby without CAH under 3 months with a fever is an emergency. This is the flu season where I live (Virginia) so please be careful.
There are not cures for CAH or Addisons (Addisons is more common in adults over 40 years old and President Kennedy had Addisons) - it is treatable with medications. I have a son that will be 7 years old in December and a two year old son with CAH. They are very smart and "normal" children. I hope you find a good ped doctor and good ped endo doctor that understands CAH. Please stay on top of the condition and get proper treatment with blood tests - plasma renin, 17-OH, and chem 8. This tests are very important and frequent in the newborn - monthly if not every two weeks to ensure that the medications are balanced. The growth issues are important and if the medications are not working there will be problems with the baby thriving. If the baby is not gaining weight and sleeping too much - big signal that something is wrong. A three or four hour feeding schedule is very tiring but necessary the first months. If salt lossing the salt must be given in the right amounts too.