As everyone has read below, I myself am trying to get an ideal information package together and suggest to my daughter's endocrologist that it be given out to all CAH patients presently AND to all new ones to come. I wanted to keep it simple, to the point and above all helpful. I thought to include :

1. Directions on how to give Solu-Cortef/ideally this would be part of the training at diagnosis along with learning meds.

2. A handbook outlining CAH. (which I would like to see what everyone thinks is about the best informative one we can find.)

3. An emergency sheet to give to the E.R. (The one that was posted here before outlining your CAH child's needs if an emergency arises ect.) And to be given to daycare/schools.

4. An emergency sheet for the parent/guardian to follow in case of an emergency. (Like Danny Carlton's graph.) ie: if patient vomits, do "X", then call "Dr. X". ect.

5. An application from Medic Alert and what should be on the inscription of the I.D.

6. Perhaps on the handbook somewhere various names of support groups, (ie: this message board, MAGIC Foundation.

Anything you want to add would be so helpful. Anything you think I should delete would be so helpful. Thanks!