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Living with PKU

The goal of PKU management is to keep the amount of Phe in the blood at a safe level in order to protect the brain from high levels of Phe. Exactly what blood Phe level to aim for is still widely disputed, but the National Institutes of Health (NIH) recommends that blood Phe concentrations remain between 2 and 6 mg/dL (120–360 µmol/L) for newborns to age 12. In light of findings that Phe levels are related to cognitive function in adolescents and adults, it is recommended that Phe levels be maintained between 2–15 mg/dL after 12 years of age. Considering the fact that brain development is ongoing during adolescence the NIH strongly encourages Phe levels of 2–10 mg/dL (120-600 µmol/L) for PKU patients during this age period.12 A healthcare professional should determine your target range.

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