re: Children Diagnosed at later ages
Jan. 27th, 2003   1:06pm

Hi,

Just wondering if your daughter was born in a state that does screening for CAH. If she was then I would say that she probably doesn’t have CAH although she may be a carrier as  you. If she wasn’t born in a state where they do CAH screening as my first two boys were( I have 3 boys with the youngest having SVCAH) then I would say to have your daughter tested with an ACTH test or DNA. I had my older boys tested with the ACTH and they didn’t have CAH. We don’t know if they are carriers but we don’t need to worry about that right now. My endo didn’t think it was necessary to test them but I felt better after knowing that I had taken control of the situation and instead of hoping that they didn’t have it, I would know for sure. You might need to be insistent with your endo about it which really puzzles me. You’d think they would want to make sure and not just wait and see.

The signs to look for are tall stature in kids, signs of pubic hair, body odor etc.. My point though is why wait for the symptoms when you have access to test now especially knowing that your other child has it. Each child you have has a 25% chance of having CAH.

Good luck,

Sandra

Sandra
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