Carol,

I swear, and I don’t swear often, but you are great at this stuff!!! Are you sure there isn’t a doc hiding in you somewhere?!? You are able to look and figure things out so quickly....how do you do it? However you do it, I am glad you do!!!

Tom,

I think Carol is right about your son’s case leaning more towards PHA. I remember discussing florinef with my friend whose daughter has PHA and she did not know anything about florinef. Her daughter was on some sodium supplement and something for her potassium, which I can’t at the moment remember.  Her daughter was not taking florinef and from the sounds of it, had never taken it. Like I said in one of my posts or em’s to you that my friend was very hopeful that her daughter would outgrow this problem or at least improve greatly.

I would think that Carol’s advice of seeing the doctor that wrote the article is an excellent one.      What can it hurt?  If he is in the neighborhood...even better.  I also find it interesting that after determining that your son didn’t need florinef,  they put him on it? If your visit is a month away you might want to change it since you really have many unanswered questions.  If you call TX Children’s it will take great speaking skills to get the doctor to call you back!!! I would suggest faxing a letter to the doc’s office, it’s more effective...also you can get their email and try that way too.

I sure hope they get your son’s diagnosis squared away and I can only hope he has the PHA that he outgrows!! Think of what a lottery win that would be!!! I wish all of us CAH’ers were that lucky!

Sandra