KayMy daughter is also 21 hydroxylase deficient - was initially diagnosed as a non salt waster, but over the years we have discovered that she is a mild salt waster. She is currently 15-1/2. She takes Cortef twice a day (used to take 3 times, but twice is working quite well for her now). She also takes Florinef once a day - initially to make the Cortef work better and now also to control the salt wasting. Her bone age was advanced when she was diagnosed at the age of 3, but she showed no signs of precocious puberty. At age 5, she was showing signs and we put her on Lupron which she took for about 8 years. Her growth plates were closing much too fast and I am not sure if she would have reached 4’10" if we had not done something. Today, she is 5’3" tall. Lupron works. It halted the rapid advance of the growth plates closing and Kristin attained a "normal" height. She had no side effects from the Lupron besides maybe being sore for a day where we injected it. Sometimes the injection site was a little red immediately following the shot. After years of Lupron, she had a full body bone scan done to be sure she was not sufferering any bone loss and her results came back 99 %, meaning virtually no bone loss at all. It was actually a better result than many children who don’t take Lupron.
Now, for the weight. If the Cortef dose is correct, I would think it has to be related to food. Kristin had that problem as well. We tried to eat all the right foods here at home and avoid fast food - and watch what she ate, but we found that she was eating things at school. at the babysitters, etc. as well as sneaking food at home. It was very difficult to get a handle on it. For her, when she had a really bad bout of acid reflux, she could not eat and she dropped 10-12 lbs. Then when we saw the gastroenterologist, she suggested a diet very low in fat and caffiene - the two biggest offenders. Low and behold, the weight continued to drop off. Kristin is now normal-thin (not skinny). She feels much better and, at her age, not carrying that extra weight is important to her. There are many good low-fat foods out there that taste good. You daughter does not necessarily have to give up all the things she likes. I would, however, caution against foods like chips that contain oelestra - it can cause diarhea which is not something you want your CAHer to contend with.
As for high blood pressure, Kristin had bouts of that as well. We never found a cause. She even went to a cardiologist and wore a Holter monitor for 24 hrs. We determined her heart beat was slightly faster than "normal" both at rest and exercising, but not enough to do anything about it. It was really at the high end of the normal range. Her BP has since come back down and currently is not an issue
Lastly, Gatorade. You should not have to give Gatorade on a regular basis. Make sure she is not a salt-waster. We do use Gatorade when it is really hot, she is sweating alot, running a fever, etc. Our endo also suggested not putting a limit on salt use, but to let her (the dr.) know if it seemed excessive
Sorry for being so long, but your daughter sounds a lot like my daughter a few years ago. Good luck and let me know how things turn out. If you want to, you can e-mail me directly.
Kay