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December 11, 2009 in Uncategorized

My daughter Amber is 10 and just started Kuvan today.She takes 9 pills a day and we are hoping that she is a responder. When she was little her levels stayed 2-4. They thought she could have a mild case and so we allowed her to eat bread,cheese,drink milk and stopped the formula. Even then her levels stayed at 4-6 range for years. A couple years ago we quit monitoring her levels as much, well come to find out the older she got the higher her levels got. Through this time period she has had problems in school, behavioral and nervous problems. They did a DNA analysis and she has classic PKU with a baseline level of 9-11. It took 6 months after but we finally started her on the Kuvan today!! If it works her diet will probley stay the same, but if it don't then we will have to change it and take away foods she has loved for years. Please pray for her and i will blog when i find out if its working for her..

3 Reviews of Kuvan

  1. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    wow. I am amazed at these phe levels. The last time i was checked mine was 19.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I wish Amber the best of luck. I’ve been on Kuvan for 2 years. Keep us posted. I will be thinking of her!!

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Good luck with trying Kuvan. I hope Amber responds. I have been taking Kuvan for two years now, so if you ever have any questions please feel free to send me a message.

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