The most important thing about CAH is what to do if the child is ill. Did the doctors tell you about what to do if the child is ill and how the child needs an injection. You can not over dose on the steriods but if you do not give enough during an illness (high fever... repeated vomiting OR diahrea) the child will die from an adrenal crisis. You need an injection kit of the steriods. Do you have one?  You can not just go to the emergency room or call an ambulance because it could be too late. The blood chemistry does not have enough stress hormones and the blood pressure will drop and then brain damage and finally heart failure.

Don't just let your child sleep if she is ill... wake and give meds. Especially if there is a fever... the fever must decrease within 30 to 45 minutes or inject and then go to the ER for IV fluids. Triple the meds (steriods) immediately. Repeat immediately. Do not wait for the next dose.  Again you can not give too much during an illness and if not enough the child will die.

here is a web site about adrenal crisis...

> http://medlineplus.nlm.nih.gov/medlineplus/ency/article/000357.htm
>
> Here is a web site with pictures on how to give the solucortef injection.
> http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf
>
> PENS has booklets about how to give the injection also. It is very good
and
> step by step also with pictures. But they do not have it on the web and
> there is a cost. I have it hard copy if you want me to mail it to you.
>
> All this long booklets may be too much during an emergency so I had the
> doctor write a letter for the emergency room. I am sending it to you. Also
> it is good for the daycare or childcare provider .. one page.

 

I have two sons with CAH and I live in Alexandria, Virginia (Washington DC area).