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Any experience with PKU?

Discussion in 'BBS Hangout' started by slcrocket, Jan 15, 2012.

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  1. slcrocket

    slcrocket Member

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    ...otherwise known as phenylketonuria?

    My wife and I had a baby on Monday the 9th and it turns out that the baby tests positive for a rare metabolic disorder, PKU. Apparently it affects 1 in every 14,000 or so in the US.

    He'll have to have a strict diet for the rest of his life - I learned a lot about the disorder today after the confirming diagnosis, but I was wondering if any of you know anything about it or have any experience with friends/loved ones/etc.?

    Hard not to freak out - but now that I'm a parent, EVERYTHING freaks me out. I know that the disorder can be serious, but caught this early all of the doctor are assuring me that with treatment, he will live a normal life. Any thoughts?
     
    #1 slcrocket, Jan 15, 2012
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