Hi Jennifer,

I know this just seems like another roller coaster ride.

Based on the reading I have done, this is my impression.

When a new born is first diagnosed with CAH they need to be treated NOW, not waiting for genetics testing to be done, etc. Sometimes that means that too much Cortef is given, or flourneif is given when it is not needed. Also, depending on where the child was born, there might not be a ped endo familiar with CAH. Things are done to prevent the baby from going into crisis and perhaps not surviving.

There is a fine line (if any) between salt wasting and non-salt-wasting. Even if the genes indicate one thing, the body will sometimes do the other. (There are scientific words for this that I can’t remember.)

Then as time allows additional testing to be done (genetics, baby’s blood work, etc), I would look at it that the diagnosis is refined. More information allows for this.

Warm regards,

Janet