Hi everybody,

My husband and I have a 5 week old beautiful girl. Our pediatrician noticed a mild abnormality of the external genitalia and had us tested for CAH, even though we ’passed’ the newborn screen.

Our ACTH stim test shows that she probably has CAH from 21 hydroxylase deficiency.

We are worried, scared, and confused and would love to be in touch with people to find out how kids do with CAH. Any support groups in Massachusetts?

We will be starting hydrocortisone 2.5 mg three times a day today. Looking at the suggested doses, this seems a bit high. Our pediatric endocrinologist told us that newborns tend to need a little more than 10-15 mg / meter squared.

We tend to be very private, and are struggling with how to tell friends about her diagnosis, especially if she will eventually need surgery. Any suggestions?

Thanks so much