It scares me to think of the people who have these endos. that are clueless, that don't have acess to a board like this one. You moms that have lost your children really enlightened me. I always new of the seriousness of my daughters disease but all these little bits of info I've been reading is something that every parent that has a CAH child should have acess to. Do you think there is just not enough studies done because of the rarity(sp?) of the disease? Do you think anything can be done to change the information given out to the parents? Perhaps NORD could help out in some way. NORD stands for "National Organization for Rare Diseases". They have a woman that helped pass what they call the "Orphane Drug Bill/Law". The law makes the manufacturerers of the drugs for rare diseases give I believe a 6 month notice to the consumer before they discontinue making the drug. Nine out of ten times it is because the drug does not make the company enough money because it is rarely used. (nice huh, money first; health,last) I happened to speak with this woman in I believe '97 when Upjohn, the maker of Cortef ,was rationing out this medicine because they were in the process of changing the suspension part of the drug. I freaked out when they started to ration, and that is how I "met" this woman. On the message board there is information about NORD. Who knows. Maybe they know someone that can help. Thanks again for your great info.