Hi April,

I think calling your endo before you go to the ER is a fantastic thing to do. This would help your child get the care needed. My daughter is 3 years old now and is doing great. I was so overwhelmed with worry for her that I stressed out so much I gave myself shingles (if you’ve ever had chicken pox it stays in your nervous system and can reappear as shingles due to stress.) Anyway, I gave my daughter Zenya, chicken pox when she was 3 months old! Ugh! I’m telling you this to let you know that I was feeling how I think you feel. But it does get better. For me I needed to feel completely prepared to begin to relax. this mean alway have necessary meds on hand. Advil, rectal thermometer (we found a great rectal type that is tapered so it can’t go too far in and it’s non mercury), pedialyte, tylenol suppositories (for high fever with vomiting available over the counter just ask your pharmicist) injections of hydrocortisone, extra Cortef. I use eyeglass cases the hard kind to put the injection in, the needle and syringe, alcohol pad and bandaid. The hard case keeps everything protected in my bag. Then I got 2- 3 ring binders. One is for us with all the info we find. One is small with the intent for caregivers (who I didn’t trust until Zenya was one.) In this one is all important phone numbers, doseage of Florinef and cortef, and all kinds of illnesses and what to do in each case. The next section is consent forms that I left blank so the caregiver can fill in his/her name and it’s valid. Next is emergency procedures from the endo to ER staff. Next is general CAH description. I can post a few examples if you’d like. This is the only way I would leave her with anyone. Now I am less worried but close by with a cell phone unless I really trust the person. To be able to relax I also needed to research as much as I could fro the first 2 years and ask tons of questions. Write them down before you got to the next endo apt. I wish I could have the first year over again as I think I forgot to enjoy my sweet baby. I hope that this helps. Take care, Julia