Sara,

I, too was in your shoes not too long ago.  I have a 16 mo. old daughter with SWCAH.  I was very scared and nervous with her for the first couple of months.  She has never been a "sick" baby, however, a couple of months ago she did get a stomach flu.  She threw up about 4 or 5 times within about an hour.  Like you, I didn’t know what to look for in an adrenal crisis, but all I can tell you is that when your child is in crisis, you will know.  Kate got VERY sleepy and was "out of it".  I took her to the emergency room and gave her the Solu-Cortef (which you should always carry with you just in case).  When we got to the hospital, they gave her fluids and within about an hour she was like her old self.

Anyway there are a couple of things to watch out for with infants regarding crisis:

1. Severe vomitting (I’m not talking about a little spitting up, but really throwing up)
2. Fever (I would say anything above 100 F)
3. Severe diarreah

All of these things cause dehydration, which in turn, causes crisis.  But if you are ever in doubt, go to the hospital!  Better to be safe!

As far as your questions about girls with CAH feeling "different" - that one is still up for debate.  All I can tell you is that my husband and I have decided to "roll with the flow".  We will love and support our daughter NO MATTER WHAT she decides that she "is".  That is really all that you can do for your child - CAH or no CAH.

I hope that this helps - feel free to email me if you have any questions.  Also, don’t hesitate to grill your child’s doctor with questions.  That is what they are there for.

Blessed Be!

JA