re: Seizures/multiple family member diagnosis
Jan. 27th, 2003   11:39am

Hi,

Interesting that your son was diagnosed as a SW at 3 yrs old. How did they diagnosis him as a SW? Did he ever have a crisis?  At first they diagnosed my son as a SW but after DNA tests it showed that he was more likely a SV. He also had his florinef removed and tested and was found that he makes sufficient aldosterone that he doesn’t need florinef.

I also had my other two older boys tested with the ACTH test because they were both born in CA where they don’t test for CAH. They both tested as not having CAH although we don’t know if they are carriers. Once they get older and think about kids then they can get a DNA test to find out if they are carriers.

We are thinking about having another baby and we have a 25% chance of having another affected child. I sometimes wonder how I will feel if they tell me that I have another affected child. At first I’m sure I would be scared and a little disappointed because lets face it no one wants their children to have anything "wrong" with them. But looking at my now 19 month old, I know that the next baby regardless of the CAH will be just as perfect as my little guy. So, I’m sure that in the beginning  it will be tough for you if your daughter has CAH  but somehow it will work out and it will calm down to be life as usual, at some point.

Good luck,

Sandra

Sandra
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