PKU experts recommend that all people with PKU should have lifelong follow-up

A group of experts who specialise in the management of PKU created guidelines to assist doctors who treat people with PKU.

According to these guidelines, people with PKU should:

Start PKU management early. PKU management should begin no later than 10 days of age.

Manage PKU for life. PKU is a lifelong condition that requires lifelong care.

Keep Phe levels within range. The amount of Phe in a PKU diet is important to monitor and will be different for every person with PKU. Experts recommend keeping blood Phe levels between 120 and 360 µmol/L for children <12 years old and pregnant women, and between 120 and 600 µmol/L for people over the age of 12 years.

Restart management. It is never too late to manage PKU. People with PKU who restart therapy may see an improvement in symptoms.