Resources
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General
National PKU News
An online source of up-to-date news and information about Phenylketonuria.
Washington State Office of Newborn Screening
Really Living with PKU
A video for families with newly diagnosed infants. It was created to give the reassurance that with proper medical and nutritional care, a child with PKU will lead a normal life.
Maternal PKU: Choices You Can Live With
A video presenting information about Maternal PKU and the importance of making well-informed decisions prior to pregnancy.
The Essentials of PKU: Information for Young Adults with PKU and their Significant Others
Answers to common questions about PKU (e.g., What is PKU?, What is the Diet?, How is it monitored?, etc.).
Padgett D. Tips for dealing with blood draws at different ages. National PKU News 1991;3:1:4-5.
This two-part article focuses on leadership in parenting:
Trahms CM. Achieving healthy outcomes for children with PKU, Part I. National PKU News 2001;13:2:4-5.
Trahms CM. Achieving healthy outcomes for children with PKU, Part 2: The Leadership Model. National PKU News 2002;13:3:i-iii.
PKU Pal
A notebook developed by the Cristine M. Trahms Program for Phenylketonuria to help families in the management of Phenylketonuria.
Booklets and Brochures Developed by the Cristine M. Trahms Program for Phenylketonuria
A Babysitter's Guide to PKU
Guidelines and helpful hints for babysitting a child with PKU.
Chef Lophe's Phe-Nominal Cookbook
Recipe secrets of Chef Lophe.
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.
Look-Alike Foods: A Solution or a Pandora's Box?
Questions to consider when deciding on an appropriate food strategy for your child.
Making the Change: from High Phe to Low Phe. Fink KJ, Trahms CM. University of Washington PKU Clinic, 1993.
A booklet that describes how to change recipes to fit into a low-phe food pattern.
Monitoring Blood Phenylalanine Levels at Home
A guide for collecting Guthrie filter paper blood samples at home.
New Parents' Guide to PKU
A booklet to help familiarize new parents with PKU and its treatment.
Neuropsychological Testing FAQ
A description of the Neuropsychological Testing for the University of Washington PKU Clinic.
PKU Self-Management Timeline
A guideline of suggested tasks for children to adopt as they progress from infancy to adulthood.
PKU Food Bull's Eye
A food bull's eye tool, developed by the Cristine M. Trahms Program for Phenylketonuria, to help with food choices for PKU diet management.
Sample School Lunch Strategy for Parents
A sample copy of a "school lunch strategy" developed by the parents of a child with PKU.
Food and Formulas
Chef Lophe's Phe-Nominal Cookbook
Recipe secrets of Chef Lophe
Low Protein Cookery for PKU by VE Schuett.
Available from the National PKU News Website
Low Protein Food List for PKU by VE Schuett
Available from the National PKU News Website