I don’t post on here often but wanted to share our experience to inform other parents.

My 18 month CAH son had a slight cold for a week or so but nothing we were worried about.  Thursday night he started to get whiney so DH prepared dinner.  As he did my son sat at the gate quietly which is uncharacteristic for him.  5 minutes later dinner was ready and DH put my son in his chair to eat.  His eyes started closing and he got whinier.  I told him over the phone we needed to get him to the emergency room immediately. 

By the time I got to the ER to meet them Riley was moaning and calling for me and seemed to be unable to keep his eyes open, his head was flopping back and he seemed to be losing consciousness.  The triage staff wouldn’t listen to our requests for cortisol even tho he had an ID bracelet on.  Finally we got our endo on the phone and he had them administer cortisol thru IV.  Abour an hour later my son was heading back to normal.  It turned out that he had an ear infection but we didn’t know.  It was the scariest couple of hours of my life.

Our endo had recently prescribed a solu-cortef shot but we hadn’t filled the presciption yet.  Our old endo never prescribed solu-cortef in the 12 months that we saw him!

I’m not posting this to scare anyone, especially new parents to CAH kids but just to let you know.  Be prepared!  Take note of any signs that you child might be behaving differently.  Have a solu-cortef shot on hand at all times - this came on in only 5 minutes!!!  We had no warning.  Have the number for your endo handy at all times, it’s possible that the ER people won’t take your word that your child needs meds immediately and will need the endo to confirm it.

Please learn from our mistakes.  Riley is doing fine now but we should have been so much more prepared.