http://congenitaladrenalhyperplasia.org/mb/page1.htm

Jenny - Here is another web site for CAH - this one is a message board for
parents for CAH children. Danny Carlton in Tulsa, Oklahoma put it together.
Originial Debbie Watson owned it. The other web sites below link to it too.
But the ones below are for on-set CAH (CAH developed later in life). My
children were born with CAH. I have a two year old and six year old (sadly
the middle child - Jessica died at age 2 and 1/2 years from an adrenal
crisis). Most important thing about CAH - always have the solu-cortef
injection kit with you. And do not ever (ever) wait to give increased stress
dose and go to the hospital. That is how Jessica died the stupid doctor on
call insisted by we just double the cortef. She was on the liquid cortef and
at the time the medicine was not mixed right or made right from the
manufacture and it was not enough. She should of had the injection and got
to the hospital. If I could only go back in time. But I can warn others!!! A
fever is an emergency with CAH. Do not in any circumstances listen to anyone
else - go to the hospital and give the solu-cortef. Know how to give the
injection. Always have 3 or 4 bottles of it on hand. Print out this pamplet
from the National Institute of Health.
http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf

Carry this pamplet with you at all times!! Put it in the medicine bag with
the solu-cortef. Make up a travel kit with a therometer, tylenol, and cortef
(solu-cortef, 3cc syringes, , 23 gauge 1 inch needles.

Roberta