My son is 8 weeks old and was diagnosed with SWCAH five weeks ago in the ER of Children’s Hospital. He was severely dehydrated, had been losing weight, was extremely sleepy and not feeding well.  I’m in California where they currently don’t screen newborns for CAH. 

I have been sometimes very sad and sometimes grateful that CAH is treatable. I started looking at the websites a few weeks ago and couldn’t even read anything else because it made me even more sad.  The meds side-effects, the life-threatening nature of the disorder, worry about his growth and other consequences. My husband has tried to stay positive and just keeps pointing out how cute and wonderful our son is. His atttitude has really helped me.

My son’s name is John-Luke and he take Cortef 3x a day and fludrocort 2x a day and sodium solution 3x a day.  I have been breastfeeding my son and the salt solution was horrible to give him (he was gagging on it)  until I learned to add just a bit of breastmilk to the oral syringe.  I sometimes feel a bit upset when I must give him the meds... but it is getting easier.  He actually SMILED at me today while I was giving him his meds, that made it much easier.

I guess I’m hoping for support as I feel a little overwhelmed.  I know I must be strong for my son and communicate that attitude to him. Thanks, Catherine