Sorry it took me so long to respond.  My hubby was busy blowing up my laptop and then gave me his other laptop.  I think he was feeling precambrian.

Yes, you are correct, origninally they told us Jake was non saltwasting and Savannah is saltwasting.  Then his endocrinologist saw an alarming rise in his renin level and immediately put him on Florinef (this was sometime in October) and rediagnosed him as saltwasting.  He was still virilizing a little (hair, odor, acting uncontrollable) and he rechecked his renin again in Dec. when I called him and alerted him.  His renin was still too high so he added one half more Florinef tablet and the hair fell out (down there) which is very interesting because I was told it would never do that.  Once he was medicated properly his levels were better and he was more emotionally stable.  Yes it was a HUGE shock to find out he is a salt waster.  Everyone (including Dr. New) was scratching thier heads saying "he can't be... he wouldn't be alive still."  But, he beat all odds and yes, he is here as a salt waster.  Our endo at home (Dr. Perelman) explained it to me as salt wasting being the black area, non salt wasting (non classic) the white area, and simple virilizing in the middle (the gray area).  He said that Jake is in the gray headded toward the black and Savannah is in the black headed toward the gray (I'm not talking about them shifting one way or another, just that they are less of one than the other). 

Yes they have the exact same three mutations.  Jake and Savannah both have mutations on intron 2 (saltwasting), exon 4 (saltwasting) and exon 7 (non classic).  So I guess if you have three the lesser mutation rule cancels out that theory.  Or at least in our case.

I felt pretty bad about being diagnosed, and my levels were pretty high too.  They found me to be rather enigmatic because I had such high levels and was asymptomatic.  In NY they said "no treatment".  But here our endo is concerned that with such high levels there might be some other red flag or a problem elsewhere like pcos or something.  He is running tests.  I was diagnosed in Feb... so no, you didn't miss much, as it was a shock to me.  The only reason I felt bad is because I felt like "oh great, I gave this horrible condition to my kids".  But my husband and friends have all been really supportive.  I did find out from some of my relatives finally talking to each other that one side of my family is part Jewish which I never knew before.  That was kind of cool.  As far as meds for me... we're working on it, and I'll get back to you.  Sorry I don't have any more info yet.

Blessings and best wishes,

Adina