Talking with Other Kids about PKU

CONCEPT: Taking Responsiblity, Self Esteem



Participants brainstorm helpful information and communication tips for talking with younger children about PKU.



After completing this activity, participants will be able to:

  • identify ideas and "words of wisdom" that would be helpful with PKU management
  • list ideas for communicating these tips to younger (school-age) children



Lead a discussion:
Explain that, as adolescents, they have all become more responsible for managing PKU. What do they do?

  • Make own formula
  • Decide which foods to eat, how much to eat, etc.
  • Prepare own meals
  • Plan own meals

Another type of responsibility is helping others. Would it have been helpful if they had received some advice from a person who had already “been there,” (a young person with PKU)? Did they receive some advice?

Explain that we need help in deciding what is important for the school-age group to hear. We would like an adolescent to speak to the school-age group, but first we would like to know what topics are important to cover. Ask them to think of things that would have been helpful to them a few years ago.

Ask for topic ideas. What is important to cover?

  • Favorite activities/sports/school classes?
  • Tips he/she would pass on?
  • What is the hardest part?
  • How does he/she stick to a low phe diet?
  • How does he/she fit formula drinking into school, sports, and other activities?
  • How does he/she keep track of phe intake?
  • Who makes formula?
  • Who cooks?
  • What other topics?

Ask for specific advice/facts:

  • What he/she eats (meal pattern…)
  • What does he/she do for special occasions? (parties, camping trips, field trips)

What is the best way to communicate this information to the younger kids? Are there some words that they might not understand, etc.?

Write the ideas on the chalkboard, then compile them into something that can be used with the school-age group of children. Invite an adolescent to speak with the school-age group in the future, using the information compiled from this activity.



  • Chalkboard, or large paper, to write ideas onto.
  • Chalk, or markers

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