Lesly,

I am an adult with SV CAH and throughout my life (until recently) have never had an injection kit of Solu-Cortef. There are quite a number of times when I should have had a kit to use, but ended up in hospital instead, requiring IV’s for dehydration and extra steroids. 

There was one time, (a long time ago), as a child of nine or ten when I was ill and my mother had not been instructed to increase my steroid dose when I had a fever, vomiting or diarrhoea. Consequently I collapsed, at home and had no heartbeat.

So I agree with the other posters, that because your daughter is still so young you don’t know how she, as an individual with CAH, will react to illness. I’m pleased that your doctor has conceded, in giving you a prescription, for Solu-Cortef.

In case you haven’t seen this patient information publication before, entitled Managing Adrenal Insufficiency, I’ll post it below. It is very helpful in terms of how to give the Solu-cortef injection. http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf