Hi Jennifer,

Please know that you and your baby are not alone. As rare as it seems, there are other people with CAH that lead happy normal lives. They are no different that anybody else. They just have a little extra to deal with, but who doesn’t!

I  have a now 1yr, 2month old son. He was diagnosed through newborn screening in TX. He is not a saltwaster but still has Classical CAH. I was devastated. I had never, ever dealt with any medical crisis in my lifetime and I was shocked and well, devastated. It took me a while to get over it but he is just as "normal" (I hate using that word) as my other two boys. He does everything my other two did at that age and he has had his share of bumps and bruises. He has never had a crisis (he isn’t a saltwaster) and never had any problems while sick. So, take heart that your little boy will be fine. Just give him the meds, always keep an eye on him, have a plan in case of an emergency or illness and try to enjoy him. While we worry, they keep growing and then we miss it. I felt like I missed the first 6 months of his life, always worrying and crying.

Keep all the doctor’s numbers handy and learn how to use the solu cortef injection (make sure you have one). Get your son a medic alert bracelet if you are not always with him.

I know how you are feeling. The initial shock of it all is overwhelming. It does get easier and it will become routine. I never thought I would feel that way but I do now.  However, you will always worry (at least I do). It’s just "normal"!

Feel free to ask for help from any of us on the board. We know how you feel and can help you through this tough time.

Congrats on your little man!

Sandra