Talking With Older Kids About PKU

CONCEPT: Growing Up With PKU



Children talk with an older kid/young adult about their experiences with PKU.



After completing this activity, children will be able to:

  • receive advice about PKU mangement from a young adult with PKU
  • list things that they will become responsible for (re: PKU management) as they get older



Introduce the "Older Kid". Include background information.

Example: "This is Jeremy. He is 14 years old and in the 9th grade. He has PKU and is here today to share his strategies for PKU management. He will talk about how he manages to fit PKU into a very busy life. Jeremy plays baseball in the summer and wrestles in the winter. He gets great grades in school and brings a food record to clinic every month! Listen to what he has to say and think of some questions to ask him at the end."

The "Older Kid" presents:
Including ideas generated from the adolescent group at the previous clinic. (At the clinic prior to this one, have the adolescent group generate a list of topics that they feel are important to discuss.)

Example: Describes a typical day, including what/when he eats, how to fit formula drinking into school/sports practice/outings with friends. Who makes the formula? When? When does he record his intake? How does he keep track of phe?

Example: By "topic"--food, formula, cooking, sports, school

Question and Answer Session:
Have some questions prepared ahead of time. Encourage the children to also come up with their own questions (related to PKU or life in general).


  • What is the hardest part about having PKU?
  • What do you tell your friends?
  • What advice would you give for...? (meal planning, formula drinking, explaining the diet to friends?)
  • How did you decide on your current meal pattern? Were there patterns that did not work?

Give the participants some time to answer the questions on the worksheet. If questions come up for the "Older Kid", they can continue to discuss them.



  • An "Older Kid" with PKU to present to the group
  • acrobat reader logo Worksheet
  • Pencils



You can help your child become more responsible for PKU management by continuing to talk about the steps toward independence.


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