PKU Management
PKU Education Curriculum
PKU education curriculum designed by the Cristine M. Trahms Program for Phenylketonuria, includes a series of engaging and fun lessons aimed at specific age groups which teach essential skills for living with PKU. Some topics covered include identification of "yes" and "no" foods, assertiveness, calculating phe, the history of PKU, and more.
Materials are organized by the following categories:
- Preschool
- Primary School
- Teens
- Transition
- PKU Pal
Additional management resources
Here are some management tools which may prove useful:
- Management Guidelines
A summary of the treatment protocol used by the Cristine M. Trahms Program for Phenylketonuria. - Monitoring Blood Phenylalanine Levels at Home
A guide for collecting Guthrie filter paper blood samples at home. - Simple Spot: A quick visual reference guide for filling in blood sample cards.
- PKU Self Management Timeline
A guideline of suggested tasks for children to adopt as they progress from infancy to adulthood. - Finger Foods Are Fun
Guidelines for assisting in the development of self-feeding skills and familiarization with some of the mainstays of the PKU diet. - Sample School Lunch Strategies
A sample copy of a "school lunch strategy" developed by the parents of a child with PKU
Reading
- Management of Phenylketonuria for optimal outcome: a review of guidelines for Phenylketonuria management and a report of surveys of parents, patients, and clinic directors. By Wappner R, Cho S, Kronmal RA, et al. Pediatrics 1999;104(6):e68.
Available online at http://www.pediatrics.org/cgi/content/full/104/6/e68