PKU.com Community Discussion Forum That’s PKU life! Kuvan input Reply To: Kuvan input

#8831
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Cook4Love
Member

Hi Keith
My daughter (9) went on Kuvan in August.  It was a bit of a roller coaster ride as her levels went up and down and we tried to determine whether or not she was a responder and if so by how much.  It was a lot of work – meticulous diet records and frequent blood draws for a few months, but it was well worth the effort.  Her phe allowance did not increase tremendously (280 to 420) but every bit counts and it allows her to eat more of the foods she likes.  We do not regret our decision at all.
Brenda

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