I am so glad that you didn’t give up on this issue!! Tell the nurses and doctors to look at the CARES web page - the memorial page. My daughter died from an adrenal crisis. They can call me if they are not SURE that the school needs the solu-cortef.  OF COURSE THE SCHOOL NEED IT!!! You can not take chances. You can’t go back a fix an adrenal crisis. Believe me. My daughter was only 2 years old. She died on 1 Sep 97.  The school needs a supply of cortef pills, solu-cortef and tylenol. And gatoraid or some kind of sport drink with salts and sugars. The emergency letter.  Go to the CARES web page for the letter (samples). http://www.caresfoundation.org/

My surviving children - Stephen (9 years) and Adam (5 years) have CAH. And I do not let them on a school bus without the solucortef either and the emergency instruction letter.  The kids with bee string allergies - it is no big deal so why is it a big deal for our kids? I don’t think it is asking too much!!!

Does the regular ped doctor understand the need for solu-cortef??? Most ped endo TRY to push it off on the ped doctor.  Again - I am serious about educting this endo office - please have them call Kelly (cares) or me!! or email me - robertapreston@t-online.de   I only wish I could go back and fix the adrenal crisis that happened to my daughter.  And ask the other parents that waited in the emergency rooms while thier kids died in their arms. You won’t have the time to wait - believe me !!

I hope this post can save a CAH child’s life.  Everyone needs solu-cortef - EVERYONE.  You need to have on hand with at all time (ALL TIMES!! - especially in a car ride).  A FEVER is an emergency!! (no doubt - you child does not make the cortisol needed - normal people make 4 to 10 times more - your child DOES NOT). Give the extra amont - you can not overdose!! The increase and solu-cortef in not just for vomiting.  UNDERSTOOD?? if the nurse or doctor does not understand - get a lawyer!! They should not call themselve a doctor!!! Sue them!! They are putting your child at risk and other children!!! print this post and give it to them!

And I agree with the school - what a stupid thing to write on the permission slip! Either the child need it or not. Of course it is needed! I and several others know - the hard way.