Discovering PKU

CONCEPT: History of PKU



Read the story of how PKU was discovered and discuss the history of PKU.



After completing this activity, children will be able to:

  • agree that many people participated in the refinement of our current knowledge about PKU
  • state that PKU was not always so well understood and what doctors know now is more than what many knew 40 years ago
  • describe the right combination of formula and food for them
  • provide one reason newborn screening is so important
  • match the people associated with PKU to their contribution



Read the story Discovering PKU together. Have the children take turns reading the story out loud. Answer any questions the children have while reading the story.

Lead a discussion :

  • Ask the children to add any information they know about PKU.
  • Discuss how little was known about PKU just 40 to 60 years ago.
  • Explain how some older people with PKU may never have been on diet.
  • Explain how some children may have gone off diet at some point because we were still learning about PKU.
  • Ask the children if they know what kinds of problems the children Dr. Folling was working with may have had. (What happens if your blood phe levels are high? This is what had happened to these children.)
  • Explain what "genetic" means. (Genetic means that certain families are more likely to have PKU.)
  • How do we find out that someone has PKU? (How did we know you had PKU?)
  • Why is newborn screening so important? (Why do they test babies when they are first born?)
  • When is it best to start on the low phe meal plan? (When you are a baby or when you are an adult?)
  • Who has ever done a Guthrie test? Show the children the Guthrie card and briefly describe how it is used for newborn screening and for home blood tests.
  • How can someone with PKU best keep their blood phe levels low? How does food influence blood phe levels?
  • What is your best combination of formula and food? Have a few children share how much formula they drink per day and how many milligrams of phe they eat (if they know--depends on their age).

Distribute the worksheet "PKU in the Past & in the Present". Allow the children time to complete it and then discuss their answers. For fun, they can complete the PKU Maze.




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