PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7385

Hi,
My name is Marieke, I live in the Netherlands. My daughter has PKU. Here in the Netherlands is Kuvan not yet available for PKU patients. I hope someday it will be. nMy daughter has a very low phe tolerance. She is allowed to take only 185 phe a day. Our doctor told us that Kuvan responds the best for PKU patients who have a high tollerance. Is there anyone with a low tollerance who respond to Kuvan?
Thanks!
Marieke

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