hi momof4. welcome! i have a 1 yr old son with swcah. he , too, was in the ICU at the time of diagnosis. his newborn screen did NOT come back due to the christmas holiday break. however, he is great now. the 1st 6 months were tough , but it gets much easier.

a few things.......he is our 3rd child and only one affected with cah. out of 4 children like you have, the odds are that one would have it. each child has a 25% chance of having cah, a 50% chance of being a carrier, and a 25% chance of not being affected at all.

my son is on the florinef pill (.1mg/day) and cortef pill (5mg/day). we dissolve them in a little container with water and give them to him in a syringe. however, when we are out in public, we just put it in his mouth and let him take a swig of drink. its easier. we did do the liquid hydrocortisone, and it was awful. it is very unstable and we had very bizzare labs with it as well as one adrenal crisis. i have gone to both the NIH and vanderbilt for 2nd opinions and both docs there are very opposed to the liquid.  as for salt, we disperse 1/4 tsp salt (equal to 1 gram) throughout the day in bottles and food. we will probably be stopping that soon, as he is now eating a good bit of table food.

congrats on your little guy and , again, welcome. you are in good company :)

louise