TOTS 100 - UK Parent Blogs

Monday, 11 April 2011

More genetic results

I get a letter today with the results of genetic testing for B to exclude Angelman syndrome. The test has come back normal. B is going to be recruited onto the DDD study (Deciphering Developmental Delay) which will be starting in a few months' time.  As usual the news of a condition B doesn't have always comes with mixed reaction. I research the syndrome get myself in a panic and then feel relieved when he doesn't have it and then angry and upset again because we don't know what we're dealing with. I always think forearmed is forewarned. I crave knowledge on every topic. It's frustrating that we can't tell people what's 'wrong' with B.

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