Hey Carol!

So when can you move in with us so we can always have access to your knowledge 24 hours a day? I have an extra bedroom. (wink)

This is sodium related. My daughter was tested and it had shown her renin levels were so off that we cut her florinef in half. She has always been on one full tablets since birth. She is almost 10 now. We retested her and now she isn’t getting enough. BUT all her other levels are through the roof also. Here is my question.

  1. Can the cut in florinef, change the cortef levels also? I thought I remembered that these two meds. work together in a way.

2. This is on odd question regarding sodium. I have been chasing these burning pee incidents for years. My daughter that has SWCAH has complained that when she pees at times, it burns horribly! To the point I feel it is a bladder infection. We take her in the pediatrician, to find she has no infection. We find that if we plow her with water, it goes away in like an hour or two. This has gone on for years. I prayed so hard after the last episode to find a solution and what came to me was the question of what these patients have in their urine. I kept telling the urologist and the endocrinologist I swore this problem was connected to what was in her urine. The next step we were taking was to see a kidney doctor I was SO convinced it had something to do with her urine concentration. Well, when we cut the Florinef in half this past fall, (knock on wood!!!!) she has not had but I think one episode since then. And that was when she was sick. It usually happens after a high fever when she is a little dehydrated from not peeing all night.  When I talked with her endocrinologist about this, he said it very well could make sense because if you are on a lower dose of florinef, your body is putting out a higher concentration of salt in the urine because your body is not holding on to that sodium as the florief would make it hold on to it. Now that he wants to up her dose back to the full tab a day, I am trying to avoid it. I asked just to up her Cortef and see what that does for all her levels. But he feels she is going to need that florief increased. I am truly terrified to do that and go back to those episodes. They are horrific for my daughter. She had surgery as an infant. We had so many urine tests of her "plumbing" to see if it was a structural problem and they all come back normal. No reflux no nothing. So I keep coming back to this florinef conclusion. What is your opinion, and if you can give me anymore info on what the body outputs with the florinef, that would be great. ANY help would be great Carol. Thank you so much.