Maureen, Congratulations on the arrival of your daughter! First of all, as I know many of the parents will say, for most of the CAH children, it is this first month that is the hardest. Hardest on Mom and/or Dad as they adjust to the diagnosis. Then (for most kids and families) CAH is just a part of the life. Questions for your ped endo (in no particular order other than how my brain works!) 1. How often will your daughter be seen by the doctor, e.g. every 3 months? 2. Bone age x-ray, when to do the first one and how often to repeat. Many doctors won't do this until at least 12 months of age, then it is repeated every year. The purpose is to help check to see how the CAH and steroids are effecting the bone aging. If not well controlled a CAH child can be tall as a child, but short as an adult. 3. Injectable for extreme stress dose. How and when to give it. Will they help you to practice. What to do in the event you need to give an injectable stress dose -- depending on the situation most doctors want you to contact them and/or head to the ER. 4. Ask the doctor to go over the basic adrenal gland path work. Olivia's ped endo did this for me and it greatly helped my understanding of "how things work" and why certain medications were needed. 5. Stress dose guidelines. What should you do if your daughter has a. a fever over 101 b. vomits once and feels good c. vomits once and is not well d. vomits more than once. e. has a single episode of diahrea (1 diaper) f. has repeated episodes of diahrea g. has a broken bone i. shows signs of adrenal distress, regardless of other symptoms j. is being treated for an illness (e.g. ear infection) and is not running a fever, etc. k. ??? 6. Talk about the signs/indications of adrenal distress/crisis 7. What to do when an emergency (see 5 above) occurs when the office is not open. 8. My ped endo has an endocrine nurse who is very, very helpful -- how is your office set-up, who should you talk to concerning various issues. Often doctors are hard to reach, but is there a nurse you can talk to just when you need some questions answered about treatment, how the child is acting, etc. 9. Where can/should you have the blood draws done. My insurance companies preferance was SmithKline. They however did not do a good job on my daughter. Ended up that I could have always had the draws done at the Children's hospital that my doctor is at. My experience is to get the blood draws done by people who are used to sticking little people -- start out on the right foot. 10. What type of things is normally checked in blood draws and how often. This will/can vary depending on the type of CAH (i.e. 21-hydroxylase, 11-beta-hydorylase, etc). 11. How long does it take to get the blood results back, who will notify you of the results. 12. Will your ped endo be sending reports to the peditrician (required by my HMO). I think it is important that the doctors work as a team -- we then tend to have better health care. 13. What to put on your daughter's MedicAlert bracelet. I believe that this bracelet is very important to my daughter's well being. And by putting it on early and keeping it on, it just becomes a part of life. Somethings that I have done that have proven helpful to me and my family 1. Get a big, 3-ring binder, with pockets, etc. Use this to keep all of the CAH stuff. You won't be able to remember everything, inparticular when your child gets very sick, very quick. So, if everything is together, you know where to go look. 2. Get a thermal, zippered, soft-sided, lunch box to keep all of the meds etc in. I have laminated all of the doctor's cards to keep in there. I keep Olivia's cortef, baby Tylenal, several medicine syringes, injectable and injectable supplies. This makes it easy to grab and put in the diaper bag or just to keep everything together at home. Sorry this is so long. I hope it helps. Please let us know how things go. And please ask any questions -- none of them are dumb, and there is a wealth of knowledge and experience on this board. Good Luck!