My 5 yr daughter SWCAH is also experiencing the same thing with salt. When she was 1st diagnosed (1 day old) they kept reinterating the fact that she will crave salt when the time comes and to allow to have it whenever she asks. I still try to "maintain" her salt in take as much as possible. Obviously the salt will not stay in the body but while that much is in there, it will increase her blood presure. This worries me. One thing i do now is at every visit to the pharmacy, we take her blood pressure just to keep tabs on it so to speak. This may be something u want to consider. I do think there is a connection from previous that she somehow "thinks" she needs more because shes used to it.

McKenzie is now on 2.5 mg cortef in the morning, 1.75 mg at noon, & 2.5 mg before bed. She also takes .05 mg of Florinef in the morning with the 1st dose of cortef. She now regularly asks for salty foods. We have also had the renin count done several times upon my request of the endo because like i said before this is a worry for us. Every time it has been within the normal range. Her endo has told me to keep an eye for numerous stomach aches & bed wetting. Apparently these r signs to look out for when they become low on salt.

I do think there is also a connection with too much cortef and salt although i am also unclear of that