hey jess! welcome and congrats on your baby. i have a 1 yr old swcah son and then 2yr old and 5 yr old non-affected girls. i had never heard of cah before either, and i have been a nurse for eight years in the ICU. i thought i had heard or seen everything.

obviously, i can not comment on the surgery aspect, but lots of others can and i wish you great success with that.

concerning the weight, my son is definitely obese. from about 4 months until now he has been in the 90th percentile or way OVER the growth chart in weight and under the 15th percentile in height. it has been tough, i can’t lie. he seems to be oversupressed (meaning his 17ohp, testosterone, and androstenedione levels are too low-these are drawn about every 8 weeks for us) but he is on a very low dose of cortef. typically if these levels are too low, then the child is on too much cortef. it is a mystery. he definitely does not overeat and at this age  i still have complete control over that. we have saught second opinions and are working on figuring this out. one of the tricky things with cah is that who knows if he was mean to be a short , stocky fellow or is it the steroids??? he was 9lbs 2 oz at birth-3weeks early!!! anyway, there are many parents on this sight who have cah kids with weight issues.............BUT there are many who don’t. my son does NOT go into adrenal crisis often and weathers illnesses very well, others don’t. every child is different, but this board is great b/c most issues at least a few parents have dealt with.

when he was 8 weeks old like yours, i wanted to hear that my child would be ok. this was all going to be ok. let me be the first to tell you "it will be ok." yes, there are unique issues and times of illness are stressful; however, he is very happy and when we are out with friends,etc. he looks and acts like any other 1 year old. we have complete optimism for his future well-being and success in life.

check out the www.caresfoundation.org website. kelly leight is great who runs it.

again, welcome to the board & on your little one!

louise