My 20mo dd went into crisis at 3 weeks (wasn’t getting enough cortisol and we didn’t know she was a salt waster)...she was VERY VERY lethargic (at first we just thought that she was a good sleeper, but after awhile it just didn’t feel right. She wouldn’t wake up for a diaper change or when you took her clothes off, etc...) She also wouldn’t eat anything (nursing, by bottle, even by syringe). We took her to the ER for dehyrdation and were there for HOURS. We didn’t realize that she was in adrenal crisis...and neither did the ER dr’s for that matter...(we were new to this whole condition and I guess we didn’t realize how serious it was, but the dr’s should’ve known). A few hours later they FINALLY got ahold of the endo who said that baby is in adrenal crisis and neeeded to be transported immediately to the childrens hospital. By that time, her body was so dehydrated it took them forever to get an IV. It broke my heart watching them poke every part of her body, even her head trying to find a vein. Once she started getting the cortisol, she was a completely different baby, it was amazing. I just cant believe it took them that long to do something about it. My best advice to get to a new parent is print off some of the emergency forms from the CaresFoundation.org site and carry them with you WHEREVER you go, and if you ever need to go to the hospital, make sure you give those papers to them, make them understand that adrenal crisis isn’t something to sit in the waiting room for, it’s an emergency and they need to see your child right away. Here’s the link from Cares describing what an adrenal crisis is and what signs to look for.
http://www.caresfoundation.org/adrenalcrisis.html

I agree with the poster who said if you dont like AND trust your endo, find a new one. I dont believe we were as informed as we should’ve been when we left the hospital the first time, if we had been, I dont think we would’ve let my daughter get as bad as she did. We now have an endo that we love. She is a very knowledgable, trusting, and caring doctor.

good luck