Ask for the beeper phone number if case of an emergency and get instructions for sick days.  Go to the CARES Web page (see Kelly Leight message about newborn testing for the web page)   for the emergency or adrenal crisis information.  Get a medical ID bracklet.

Make sure you have prescriptions for the solucortef - and you know that if there is a fever, vomiting or diahrea - that is an emergency!!!

 Your child does not make enough cortisol and a normal person makes 4 to 10 times more during illness.

Make sure  ped endo doctor is  going to do bone growth x-ray!! Maybe not a baby but at age 3 for sure.

 The 17-OHP test is done, plasma renin and chem 8 blood tests. (ask what is a normal level for your CAH child - and what level is the the doctor trying to reach... to avoid undersuppression or over supression... what signs should you look for to make sure the medications are working.  If the blood tests are off = or the medication changed ... when will the doctor re-test.  Believe me the answer better not be  - I’ll see in 6 months 0r I don’t test the blood - I just go by body weight !! That is the wrong answer!! Find another doctor !! If your child is a baby - get regular checkups frequently - it is needed because the baby is growing and the medications need to be adjusted as the baby develops and the medications change - check the blood to see that it is working.  6 months is too long between visits for a growing child  (6 months for an adult - only).