PKU Self Management Timeline - PKU Clinic - University of Washington, Seattle

PKU Self-Management Timeline

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Age of Child	Tasks for Children and Parents
0-6 months	Parents learn about and adjust to PKU.
6 months	Start low-protein solid foods (discuss with clinic staff).
6-7 months	Introduce cup with water. Introduce cup with formula.
8-9 months	Introduce finger foods.
10-15 months	Consider final weaning from bottle (discuss transition with clinic staff).
2-3 years	Learn the concept of "formula first." Learn to distinguish "yes" and "no" foods.
4-5 years	Begin to learn to count foods - "how many." Begin to use scale - "how much."
5-6 years	Assist in formula preparation. Teach children how to deal with other children's curiosity about PKU.
7-10 years	Prepare formula with decreasing supervision. Choose after school snack. Learn to pack school lunch. Begin to list foods on food record. Begin weighing food regularly on scale.
10-12 years	Begin to prepare and consume formula independently each day (with parental monitoring). Prepare simple entrees independently. Know what blood levels are ideal.
13-14 years	Increasing self-monitoring (with continued parent support) in formula preparation and consumption. Independently manage total phe intake for the day. Learn menu planning. Responsible for food records.
15-17 years	Competent to perform and primarily responsible for all aspects of self-management with continued parental support. Able to perform own Guthrie blood draw or schedule blood draw. Able to explain the basics of PKU - "What is it?" Responsible for remembering recent blood levels.
18 years	Transition to adult-based clinic care. Ready to live independently, including: - formula preparation and consumption - food preparation and records - monthly serum phe - setting and keeping own appointments on regular basis Parents act as consultants.