PKU Self-Management Timeline

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The PKU Self- Management timeline is included to provide long-term view of the expected developmental progress as your child gains in skills and self-management competence. This guideline suggests incremental self-management goals for you and your child.

This timeline is a flexible guide that will help you look forward as you begin to parent your child with PKU.

Initially, you are in charge of the information about PKU and management of PKU. Fairly quickly, as your child gains language skills and becomes more interested in his environment, it will be time for him to have a role in his own PKU management. Thankfully, this process can be quite natural. One of the parents in our clinic has said, ‘You talk to him all day long about shapes, colors, and names of things; it is logical to label foods YES foods or NO foods during this ongoing conversation.’

By responding to the developmental cues that your child offers, you are on your way to implementing the PKU Timeline. And, amazing as it may seem, you are also on the way to helping develop a competent and knowledgeable young adult who effectively manages his own PKU.

There is, of course, a step or two of educational effort and management between the infant and the adult. The process of one-step-at-a-time is appropriate and necessary.

Think of the process as a ‘dance’; you and your child are partners moving together, changing momentum and direction as needed for advancement. Acknowledge the difference between your child ‘having’ a specific self-management skill and ‘performing the skill independently’ at all times. It is important that parents


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.



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