My daughter is doing well now. She is almost 8 months old.  

Regarding to the dosage of florinef, here is my experience.

My daughter was diagnosed through new born screening. The doctor started her on Cortef but no florinef, no salt. 10 days later, she had a adrenal crisis.  She stayed at hospital for about a week. We were sent home with .2mg florinef plus salt. She has regular blood test and her florinef is reduced to .05mg now. She is doing great and her PRA level is low.

Watch your son closely. I believe he is will fine. 

Another thing you may want to keep in mind. It is usually difficult to dram blood from a new born. The his arm is tightened for more than a minute, his potassium level may be falsely high. So the real concern  only if potassium is high AND sodium is low.

 

Good luck

Jen