I have a 5 month old girl with SW CAH. We knew from birth that she had this condition but because it is so rare in this part of the country, I had very limited information on CAH.
I too have had trouble distinguishing from CAH and the normal infant problems. What put me at ease was talking with my 2nd endocrinologist. The first doctor made me feel as though I was holding a ticking time bomb waiting to go off. The new doctor told me to take her home and treat her like any other child. He said that "most" things can be treated with double or triple dosing the medications. You really have to watch for fever, vomiting and diarrea, broken bones and of course surgery.
This board has been a great sourse of information for me. You can call the people at the CARES Foundation and they can help you as well. I had NEVER heard of CAH before my daughter was diagnosed with it. Noone in my family or my husband's family has CAH.
Don't be afraid to talk to your doctor and ask as many questions as you can. My pediatrician has been wonderful. She has never had a case of CAH but she has been willing to learn and find people who have treated CAH. There is a great deal of stress involved by just having a child and having a child with CAH seems to make it a wee bit more stressful.
When you have time you can read through the archives of this message board. There are some excellent ideas as far as giving medications, how to deall with certain issues, etc. There are many people who have been living with CAH and it is interesting hearing their perspective.
I'm making a notebook with information about CAH and what to look for, how to administer the shot, etc. Compile as much information as you can as you are your child's voice right now.
Make sure you have the injection of Solu-Cortef on hand at all times and have her medication with you at all times. You never know when she will need them.
Congratulations on your new little bundle. Things will get easier. God bless you.
