PKU.com Community Discussion Forum What’s the Phe? questions about Kuvan and self phe test Reply To: questions about Kuvan and self phe test

#8723
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sarahl
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From what I understand, classic PKU does not automatically mean that your daughter will not be a bh4 responder. i think some people on this website do have classic PKU & respond to Kuvan. It works in approximately 40% of PKU patients. How did you find her to be non-responsive to bh4? Was it actually tried? If not, it may be an option you want to explore when your daughter gets older.

I don't know the answer to your second question. I have not heard of an actual toolkit to check levels daily being used but I think one is being developed now.

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