My daughter is 9 1/2. She too had her Florinef changed before school started because her renin was too high and the rest of her levels were fine. We also had her on one whole pill since birth. It made me crazy dropping that half pill. You know when you are used to doing something like that and then take it out of your regiment, it throws you off. The endocrinoligist said that since she is getting so much salt in her diet, this was what probably made it possible to cut the dose in half. She was sick on and off since school started and with my mom so sick, I hadn’t the time to get her blood work checked since then except once. That one time I FINALLY made time, the lab screwed up and her blood sample for the renin and got frozen. I was so ticked. I am not paying for that blood draw. SO then we were supposed to go see the endo. a week ago, but the weather was horrific to drive an hour. SO next step is to take her back for lab work this week. I don’t know if her levels are ok or not. I am insane waiting to see. BUT for us, my daughter had many times where she complained of burning like she had a urinary tract infection. So we would haul her off to the doctor to get her urine checked and it would show NOTHING. It was this vicious cycle we would go through. Then we decided to watch her diet and see if there were red dyes causing it or citrus stuff. It was baffleing. SO, now knock on wood thanks be to God, since we cut the Florinef in half, she had only had one incident of this burning pee sensation. And that was after giving her an antihistemine. Through all of this, I told her endocrinoligst and her urologist it had to have something to do with the output of her urine concentrate. But neither could help and said the next step would be to go to a kidney doctor and have her urine "read". I was beside myself not knowing what was wrong. It seems it happens most when she is sick but there was no real pattern. SO to me it all points to the Florinef change. Exactly what I suspected in the beggining. She had the surgery to re-open her vagina so I kept thinking that was a factor too but just couldn’t prove anything. We went in circles. It was insane. So for now, knock on wood, and I pray I didn’t jinx us, she has been doing ok since that Florinef was cut in half. BUT we have not had her levels checked so I am not sure how it will affect her levels. To me it made more sense that it would cause burning in her urine because the output of urine would have a higher concentrate of salt in it, thus giving that burning sensation. I don’t know. We just pray this was our answer.

Ok, wow that was massive. Are there awards given out to the largest posts? WOW sorry.  

Also and wow this is a long email. For me to this day I still wake up like an hour after falling asleep panicking thinking I forgot a med of her’s for the day. VERY strange. Since I cut that half pill out, my brain just won’t catch up and remind me that it is ok, and I cut it out on purpose. I tell you it is the stupidist thing but I do this almost every night. I know there is some hidden meaning in there somewhere that a couselor could unravel and I tell you if I had the time, I would go unravel it so I could have a peaceful sleep.