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Planning for Lifetime Management

Develop healthy habits early on for lifelong PKU management.

PKU should be managed as early as possible in a child’s life. Start lifelong management with support from a PKU clinic and have frequent, honest conversations. Your clinical care team will teach you the recommended ways to manage PKU.

Vegetables on a table top

With PKU, the foods you eat directly impact the way you think and feel.

Phenylalanine (Phe) is present in almost all natural protein-containing foods. Your clinical care team will help you determine how much Phe should be part of your diet.

Learn new ways to cook for a person with PKU. Change up your PKU-friendly menu with these recipes.

PKU-friendly recipes

Help prepare your child to manage PKU in their future.

Step 1

I do; you watch

  • Explain everything you do and why it is important
  • Demonstrate the order of activities and ensure your child is watching
Step 2

I do; you help

  • Work together with your child and help them along as needed
  • Ask questions to see if your child knows why this routine is important
Step 3

You do; I help

  • Set small, achievable goals, and try to make it fun to form these habits
  • Step in with support when needed, and remind your child why this routine is so important
Step 4

You do; I watch

  • Set larger goals for the future, and allow your child to take charge of their routine
  • Help them along, but try not to step in too early. Making mistakes will help them learn and prepare for their future

“Of course I was completely frightened, I was confused
because I was completely
unaware of what PKU was.”

Discover the experience of a mother and daughter in dealing with initial diagnosis and growing up with PKU.

Play

Tips for talking to your care team.

Download guide