Dear Jennifer,

How much cortef and florinef is your daughter on ? The only time that I’ve ever experienced extreme weight gain was when the Endo upped my dose prednisone when I was 16 ( My weight went from 128 to 175.)  I moved out of state and the my pred was decreased to 10mg/day then to 7.5mg/day  all along losing weight and having excellent blood test results. Now I take hydrocortisone 25mg/day which agrees with my mind and body even so much more.

I remember as a little kid (age 7 to 10 ) how ecstatic those residents were about my weight because I either lost weight or stayed the same and meanwhile all those exams they did to me caused me so much anger and frustration that I started to overeat anyway.

I’ve always eaten healthy and exercised but I’ve found that I can eat all the foods that are right for other people to lose weight but if I have them I’ll gain weight or stay the same or I can exercise like other people but I might just stay the same in my weight. I can do aerobics and my weight will not budge but on the other hand with a night of dancing at the beach, I’ll lose two pound just like that. Some people can have a little bread and still lose weight. If I had a bagel, I would put on a pound. I can’t have bread or bagels for real now unless I gluten/ wheat free because I was diagnosed with Celiac Sprue two months ago which isn’t a bad deal because I’ve lost 15 pounds and that was without exercising. I just eat lots of fruits, vegetables, nuts, milk, chicken, meat and just water. Nothing else and I’ve never felt better.

The situation your daughter is difficult but it does get better. At that age I would look at people in sports as role models rather than little pop stars I think that helped me feel better because they looked strong, muscular, and healthy rather than little Barbie dolls.

People are mean and that is one of the many things we learn in life and some of us sooner than others. In South Florida and I don’t know if the idea came from kids themselves or adults but an actual program of activities and skits by children was put into place to help children understand and not bully other children. It dealt with teasing,  not sharing with other kids on the playground, and respect of differences.

I have a voice that doesn’t match the way that I look and I’ve had many comments about it. I’m forever getting "What’s wrong with your voice? " and others have said,"It sounds like you smoke two packs of cigarettes a day!" and I don’t smoke. For the most part, it’s been the staff at doctors offices that laugh at me the most. I’ve flat out told them " I have a hormonal condition, do you find that funny? " That shuts them up and they try to act nice...to late. In school,  I would never talk because other kids noticed the difference and I was self conscious about that...heck, even the way the teachers looked at me made me feel bad. I tell you this because don’t let your daughter’s education suffer because "she’s starting to dislike her body image." I wouldn’t want her to ditch school like I DID and get in with a crowd of kids that had no interest in their education. I did graduate and I went to college but it wasn’t the major that I really was interested in and how things might of been different if I’d been in physics class instead of having breakfast at the local McDonald’s with all the other truants. 

I have one question that maybe you or someone else can answer. What is the florinef for? I thought it was for Salt-Wasting CAH but I occasionally see that someone that has Simple-Virilizing CAH like me or LOCAH on it.

Aimee