Carol,

I wasn’t on this board for a week or so but now that I’m reading your post I must agree that I’m feeling pretty much the same about the whole issue.

My son was just officially re-diagnosed with SWCAH.  (Actually they didn’t even call him a definite SW because they say that he is capable to make up for his salt loss and he might outgrow the Florinoff as he gets older.  But isn’t this what is considered a mild salt waster and not a simple virilizer?)  I am really having doubts if this whole study they did on my baby was based on good enough proof or was it rather mostly research that they did on his expense.

It’s not the final outcome that is so painful to me.  I was expecting it, especially toward the end when the symptoms of his being off treatment where becoming very obvious.  It’s all the time that was lost for this study that is making me upset.  Quite a few precious month was taken from us and in the end all that we gained was the knowledge that my son is as was diagnosed in the first place, defiantly a salt waster.

I also feel that the staff in Cornell where hiding allot of important information from me during the process.  Besides I have other doubts that I would rather not mention on this board for precautions reasons. 

I feel very down about the whole thing and am seriously considering hearing another opinion.  Is there anyone in the area of NY whom anyone could recommend with whom it would be worth to check up?

Risty