Joan, I can't believe how well you explain things! What would we do without you on this board? Once when I was doing some research on CAH at the library I read a case study about a boy with salt-losing CAH who I think was born in the 1940's (before hydrocortisone or fludrocortisone). I don't think he was diagnosed with CAH until after he died but he managed to live until about age 3 (I think?) without any medication simply because he was able to communicate to his parents his intense craving for salt. (However he did have severe developmental disabilities). I would be careful about rushing to discontinue the florinef. Correct me if I'm wrong here Joan, but I believe that in addition to helping retain salt, giving florinef also can reduce the dosage of cortef that is required (which may reduce growth stunting from too much cortef). I think florinef is sometimes prescribed to non-salt losers for this reason. Remember, cortef and florinef, given in the proper doses, are simply replacing hormones the body would make if it could. Giving both seems to be the best way to return the body to it's natural balance.