Maria,

 

 Your son has CAH.

 

I remember when my son was an infant and hoping so hard that it was a mistake. It was no mistake.

 

Maria. You’ve had the genetic testing done.

 

Your son has CAH.

 

Pediatric Endocrinology is not such a huge specialty that doctors aren’t going to know each other. They probably have meetings... conventions.... their own message board <VBG> .... etc....They are not ganging up on you to tell you a big lie.

Your son has CAH.   

 

Anywhere you go..... the doctors will already know of the other doctor or they will want to see the medical records.

I think what you need is more of the details.... exactly what was it that caused the delay in the genetic testing? You’re hoping it was a mix up of the blood? Maybe it was some other childs blood? Find out. Ask the questions. Was it a paperwork delay?

What are you going to do next? You could have the genetic testing done again? Better yet... you could have yourself and the childs father tested as well. Hopefully you have an insurance that will cover these tests.. but probably not. They are expensive and rare tests that require a medical need for insurance to cover them.

 

Ask more questions. Let them know you are not convinced. Tell them you want the genetic testing results mailed to you so that you can see the details.

 

It will be OK.

I happen to think boys with CAH are beyond terrific!!  

 

 

Good Luck,

 

Susan