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  • #6661
    Avatar of Breanna

    I’m very excited and just wanted to share that I’m a responder to Kuvan/Saproptrin. Before I started taking Kuvan my phe level was 2.5mg/dl and after starting Kuvan my levels were 1.7, 04., 0.2 and all the way down to 0.1!! I was so excited especially because my dietitian said she really did not think Kuvan would work for me and my mom kept telling me she didn’t think it was working either. So when my dietitian told me she wanted me to increase my phe intake by 70mg of phe I was almost in shock! So now I’m allowed 370mg of phe, but for now I have to get the extra 70mg from mixing milk to my formula. My dietitian doesn’t want to allow me more food until they are positive how much I can have so they don’t have to take food away from me and stuff. nBre

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