This website is intended for residents of the United States of America interested in Phenylketonuria, also called PKU.
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Parents of teens

Preparing your teen for a life with PKU

As your child becomes a teen, they’re ready to take on more responsibility for their PKU care.

Below you’ll find practical advice on encouraging their independence while still being there when they need you. With the right approach, you can help your teen build the confidence and skills they need to manage their condition successfully for the rest of their lives.

Creating a personalized treatment plan

When your child’s PKU isn’t managed, high levels of Phe can build up in their blood. This can cause serious health issues such as cognitive challenges and mood disorders. That’s why long-term management of Phe levels is so crucial. It protects your child and their ability to reach their potential academically, socially, and emotionally.

Every teen with PKU is different, and treatment plans often need adjusting over time. A low-Phe diet combined with medical food/formula works well for some kids. But many benefit from medication that helps the body process Phe more effectively.

Tips to help your teen find the right approach:

Customize the plan

Work with your clinic team to find the treatment approach that best fits your teen’s goals and lifestyle.

Be flexible

Adjust the treatment plan together with your teen as they gain independence and their routines change.

Build a strong clinic team

Managing PKU is a team effort. A good clinic team can provide expert guidance, answer questions, and support both you and your teen. This team may include metabolic specialists, dietitians, nurses, psychologists, and social workers.

Schedule regular check-ins

Plan regular clinic visits and stay in touch with your clinic team between appointments if you need any additional guidance.

Empower your teen

Encourage your teen to play an active role in their health by asking questions, participating in decision-making, and taking on more of their care at home.

Stay informed

Enroll in PKU & ME to receive emails on the latest information about treatment and managing PKU.

Enroll in PKU & ME

Supporting your teen with PKU

Being a teen with PKU comes with challenges. Here are some ways you can support them along the way.

  • Encourage more independence

    • Help your teen learn to manage their PKU by involving them in meal planning, grocery shopping, and tracking their protein/Phe intake
    • Give them more responsibility as they’re ready for it—this builds confidence and prepares them for managing PKU on their own

  • Keep communication open

    • Check in regularly about how they’re feeling about their PKU and any challenges they may be having
    • Listen without immediately offering solutions—sometimes they just need to be heard and supported

  • Educate their social circle

    • Work together with your teen to educate friends, teachers, and coaches about PKU so they understand what your child needs
    • Ask them how it’s going and see if any follow-ups are needed

Supporting your next steps

Helping your teen prepare for the road ahead

Tips for a productive conversation

Download your guide

Get personal support on managing PKU

Connect with a local BioMarin representative

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Phe levels still
too high?

Talk to your doctor about
treatment options

Learn about options

Explore helpful PKU resources

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Ongoing support to move you forward on your journey

PKU & ME is designed around you—your questions, your challenges, and your long-term goals. With this program, you’ll receive emails about managing PKU so you can feel more confident with the next steps of your journey. The program includes:

  • Advice on PKU management
  • PKU-friendly recipes
  • Connecting with others in the PKU community
  • The latest news about PKU

Enroll now