PKU Clinic - University of Washington, Seattle

PKU Clinic - University of Washington, Seattle

PKU Self-Management Timeline

11/26/2013 10:43 AM EST

Source: University of Washington PKU Clinic
Related MedlinePlus Page: Phenylketonuria

PKU Self-Management Timeline

This timeline is also available as an Adobe Acrobat file. Click here to download.
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