Dear Deanna:

Hi, I have simple virilizing CAH and from 1971 to 1988 I was subjected to the U of Mich/C.S. Mott’s Ped Endo Clinic. It’s sad to read that in 15 years it hasn’t changed. I would really be surprised if you could get the appointment moved up. You mentioned that your daughter is going to be seen by an Endo when she goes there. Just remember that Mott is a teaching hospital and your daughter is going to have to deal with the residents and then the Endo. It goes like this your examined by to or more residents and the more experienced resident takes the lead and then the Endo breezes in and does the examination all over while the other two watch. It’s not the greatest experience in the world and therapy didn’t do a darn thing to change that . You are there to be studied ...can they help you ? From my personal experience, they were no help. It’s nothing but a guessing game to them. After I turned 15, the gang examinations ceased and I was given a resident that followed me for each visit. This person’s answer to anything in regard to CAH was more Prednisone. I was up to 20mg/day of pred when I realized that this "doctor" didn’t have a clue about CAH. She mentioned adrenal crisis as and after thought. This important fact wasn’t stressed when it needed to be. When I was 16, there was a terrible blizzard. We couldn’t get out of the house and I ran out of the med. Since nobody ever stated how important the med was, I thought I could let it go until the blizzard subsided. A week went by, I got nasty sick and was vomiting like crazy out of control for a day and a half. My dad was able to venture out to get the med and later his girlfriend confided that they thought I was going to die. I was able to put it together that I needed that pred, it was survival instinct kicking in. It wasn’t until I was 19 and living in another state that an Endo mentioned an emergency shot of cortisol. She even left a lot to be desired, when I asked her why would I need a shot ? Her response was," Oh, in case you get your head stuck in a fish bowl, You’ll need to take the pred another way." I was so mortified at her snotty attitude that I just glazed over and went into a shock. The endo left it at that and I ended up learning about the emergency shot from this message board. I am bitter, I lost my childhood there and a small but important part of my flesh.    

Hey, you never know ...your daughter might have a better go of it there and I hope that someone will post and give you a glowing recommendation. After all different thoughts from different people.  

When all is said and done, I can say that I survived them and I hope things are better for THIS  generation or else what did I go through all that for ?  ; )   As I sit here and write, I hope that I don’t come off sounding nuts to you all. I just want things to go so much better for kids today and it upsets me that it seems like there is way to go in regard to CAH.  Venting is gooooooood !

Deanna,  I was born in Warren, Michigan  and I grew up in a small town outside of Ann Arbor,  Michigan. It’s nice to see a post from someone from Michigan   

Good Luck and God Bless,

Aimee