Ok so we have been going back and forth with my 7 year old daughter who has CAH due to the 21 hydroxylase deficiency. (salt waster) She complains her pee pee hurts so bad she is in tears. Says it is on fire. We take her to get checked for UTI, and 90 percent of the time she has none. This has been going on all summer now. I can tell she is going to have some problems just by the smell of her urine after she goes potty. I know sound gross but I notice it. I am very in tune to her health. Sure enough by late this morning I got yet another call from school that she her pee pee is on fire. Go get her soak her in the tub, give her extra water, and sure enough it disappears. BUT before I do all that I take a urine sample from her swearing that this is a UTI, and it checks out that her urine is clear. We have chased this all summer. We have checked almost everything. Today I asked the urologist to do a urinalysis on her urine. I wanted to know what was in her pee that was burning. What was causing her urine to smell and burn. SO his thoughts are this. It could be that she is passing small kidney stones or chrystles. We are doing a urine test when she is feeling great, at different times of the day, and then when she gets these episodes. It is as if she peaks at this pain, then once that peak has been met, she is fine. Like she is passing something. MOST of the time. Some times it is a UTI. A friend of mine has a daughter without CAH and experienced the same thing for almost two years at her age. Finally she outgrew it. Her ped. (who happens to be my ped. said to keep her hydrated constantly) SO my other thought is that I wonder what the body wastes when the Florinef dosage is changed. What does your body waste more of? Also we all know that the Cortef draws out the calcium in the body. Her urologist said he just treated two CAH patients with kidney stones. Ironic? or what? Has anyone with CAH experienced problems with kidney stones? Let me know. I know many carriers have experienced them. How about the CAH patients themselves? I will update you on this when we get all the results back. It may be a while as we track this.  One more thing, we also were wondering if it had to do with her diet of pickles. These are home made with a lot of vinegar. We are looking at everything, but the doc. thinks it is related to the calcium. We will find out one day soon. I don’t care what it takes.