Hi Carla

My daughter is now 18 and SWCAH diagnosed at birth. I agree that adrenal crisises do not just "appear out of thin air" but they are very scary for new parents. Usually the crisises are brought on by a stomach bug or traumatic event...your child begins vomiting or diarrhea but it continues to get worse instead of better and nothing helps. This is usually followed by Lethargy...child sleeps a lot, hard to wake up. A good rule of thumb is that if the child rejects their medication (my endo says vomitting within 30 minutes of oral dose...) then they are at risk for a crisis and should be seen either in the office or ER. Best advice i can give you is trust your motherly instinct. it is a shame how ill-informed most doctors are about this illness, especially ER doctors...don’t be suprised if you are treated like a "hysterical mom" when you try to give them information, especially if you are in an ER.

If you can get your hands on Solu-Cortef, use it in a crisis! I swore by when my daughter was younger, and it saved her life more than once...we have not been able to get it in a while though.

It does sound like you should search out an Endo more informed and concerned about your needs, or at the very least for a second opinion.

Best of luck and if you ever need advice or just someone to talk you can reach me at my email beautyfromashes8@aol.com.