Hi.  Like I said in my posting our emergency letter has been tweaked many times over the years.  It is a combination of letters from MAGIC, CARES, our endos over the years, Philadelphia Children’s Hospital, Columbus Children’s Hospital and probably a few others.  If it needs to be, I’ll change it again.  We have had at least a dozen variations of this letter for many more hospital visits than that (we have 2 cah girls and lots of ER trips/illnesses).  I always note when we use it the comments the drs, nurses, EMS workers, etc have made about it.  You know, what worked and what didn’t.  I want to be able to get the quickest and best care possible for both of my girls.  I noticed at first when our letter said "In the case of adrenal crisis . . ." and it gave the protocal, many doctors thought the treatment was unnecessary because they were not yet in an adrenal crisis, well duh.  So, we have made many changes over the last 8 years.  It seems long but when it is printed out on paper it is only one page.  It is also broken down clearly and simply so whoever is reading it can easily get to the portion they need.  For example when our oldest went by ambulance in June, the EMS found all of it helpful but for an initial assessment the first part they said was "invaluable".  Even though they had seen this letter on the bulletin board at the station, they did not know exactly what CAH was or why it was critical to treat it right away.  Almost every doctor, nurse or paramedic we have encountered, loved the quick description, the emphasis on prompt treatment and the exact IV solution/meds to give.  Or for caregivers, refer to the bottom for drs #s or our cell phone numbers and give the sheet to EMS.  I think it is so important that everyone have a good emergency letter.  It doesn’t matter which letter gets used.  I’m not saying mine is better than someone elses but experience has taught me that this letter works and it really isn’t any longer than anyother letter I have used.

Blessings!

Tonia