Hi Heather,

From my perspective, you need to start talking with your daughter now. You can use such phrases as:

* here is your CAH medicine

* we are going to see Dr. Jones today to check your CAH levels

Explain it at the same level as when you explain her bath, washing her hair, brushing teeth.  All of these things are a part of taking care of ourselves.

When my now 5-year-old was younger and would ask about her MedicAlert bracelete I would tell her that she had to wear it so that if she got sick when mom wasn’t there other people could find out she had CAH and take as good of care of her as mom did.

As Olivia got older (about age 3) we started talking about the fact that she doesn’t have a vaginal opening. 

When she receintly spent the night at my brother’s house I told her I was typing up her medicine directions. She reminded me to "tell Aunt Missey that I need salty and sugar if I get sick"

Do your best to keep CAH a part of normal life -- try not to hightlight it or down-play it. 

Best regards,

Janet