Congratulations! My daughter also has CAH. She is an awesome skiier, mtn bike rider, plays soccer and t-ball and loves to swim. She is an early reader and loves math and logic problems. She is very social. She is almost 6 years old now and everything is much easier once you get the hang of it. I’m telling you all this so that you know your daughter can live a normal and happy life. I think that you shoul make sure of a couple of things.

First, always carry an emergency kit with you. It should include advil, tylenol. thermometer, Cortef, SoluCortef shot kit (which we put in a hard eyeglass case to protect it. In it we have the medicine, alcohol pads, band aids, syringe, needles, and the "how to give the shot" instructions we printed from the internet.) Don’t leave this in a car to overheat or freeze. Always carry it as you don’t want to rely on the Ememrgency Room. Often in busy hospitals, staff has never heard of CAH and will not treat quick enough in a crisis.

Second, know how to give the shot and don’t be afraid to give it. It can only help and not hurt your daughter. Giving the shot ourselves has kept us out of the ER (of course we are in communication with her doctor about events and how she’s doing etc.) The first time we gave the shot I was amazed at how well it worked for a high fever that we had been battling with for a couple of days. It was gone in 1/2 hour and our daughter acted normal again.

Third know when to give a stress dose. I know that sometimes this feels like a guessing game. Again, it can’t hurt and if she is sick she really needs more meds.

Keep us posted and ask questions! This is a great site for support and information. Check out the archives on other issues such as whether to have surgery and doctors etc. Good luck! Julia