PKU experts recommend that all available options be considered for management.
A group of experts who specialize in the management of PKU created guidelines to assist doctors who treat people with PKU. These guidelines state that all available options should be considered for the treatment and management of PKU.
According to these guidelines, people with PKU should:
Start PKU management early. PKU management should begin at birth, and experts recommend using all available options, including diet and medical formula, to keep blood Phe levels within the recommended range.
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 2 and 6 mg/dL (120-360 μmol/L).
Consider all management options. All available management options should be considered to maintain control of blood Phe levels.
Restart management. It is never too late to manage PKU. People with PKU who restart therapy may see an improvement in symptoms.
Explore how to keep blood
Phe levels low.
Join the PKU & ME program for support and guidance on living a healthy life with PKU.