Kuvan advice

Kuvan advice

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Kuvan advice

July 26, 2010 in Uncategorized

Hello! This is my first time blogging and I'm looking for advice. I have a beautiful 3 year old sone with classic PKU. He's been doing great, with a tolerance of 320 phe a day. My clinic has asked if I want to start looking into Kuvan for him. I'm unsure about it. I'd love to hear about other parents' experiences with Kuvan and their little ones. Doesn't matter if it is good or bad, I would love to have the input. Thanks!

2 Reviews of Kuvan advice

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi! I am 25 with PKU and have been on Kuvan for over two years now. If you find your son doing great and find the diet manageable for the time being, maybe Kuvan is right for him now. I know many parents with younger children decide to do the trial of Kuvan (30 days) to see if their child is a responder. As your son gets older, if he has a harder time maintaining low levels, then maybe at that time, would be an option. Let me know if you have any other questions. In the meantime, hope this helps!

  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I agree with Katie. I have been taking Kuvan now for almost three years, but my sisters Erica and Genavieve do not use Kuvan. Both of my sisters have beautiful phe levels and love their formula. When we have asked Erica, who will be twelve soon, if she would like to try Kuvan she has always said no, so my parents have decided not to push it.

    If in the future they express interest in Kuvan or have trouble keeping low levels we know Kuvan will be an option. For now we have decided to let my sisters do what works for them.

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