Resources
Information about management guidelines, treatment objectives, a basic nutrition care plan, assessment schedule, self-management timeline, nutrition therapy guidelines, and neuropsychological testing guide
General
Booklets and Brochures
Food and Formulas
Recommended Reading
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General
Management Guidelines
A summary of the treatment guidelines used by the Cristine M. Trahms Program for Phenylketonuria
PKU Self-Management Timeline
A guideline of suggested tasks for children to adopt as they progress from infancy to adulthood.
PKU Pal Curriculum
A notebook developed by the Cristine M. Trahms Program for Phenylketonuria to help families in the management of Phenylketonuria.
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.).
National PKU News
An online source of up to date news and information about Phenylketonuria.
Phenylketonuria and Pregnancy. Part 1: General Information.
PacNoRgg Genetics Update: A Fact Sheet for Practitioners. 1999.
Available from Pacific Northwest Regional Genetics Group as a 
PDF.
Phenylketonuria and Pregnancy. Part 2: Pregnancy Management.
PacNoRgg Genetics Update: A Fact Sheet for Practitioners. 1999.
Available from Pacific Northwest Regional Genetics Group as a PDF.
University of Washington Adult Metabolic Transition Project
A website to assist young adults and their families in the transition from pediatric to adult health care. The website includes resources for individuals with PKU.
Booklets and Brochures
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.
Games That Teach: Learning by Doing for Preschoolers with PKU.
A booklet of activities for children, providing opportunities to learn about appropriate food choices for PKU.
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.
PKU for Children: Learning to Measure
A guide to help school age children become more responsible for their PKU diet management.
PKU Food Bull's Eye
A food target tool, developed by the Cristine M. Trahms Program for Phenylketonuria, to help with food choices for PKU diet management.
Food and Formulas
Chef Lophe's Phe-Nominal Cookbook
Recipe secrets of Chef Lophe.
Formulas for Children and Adults
A list of formulas by brand with nutritional information for each.
Low Protein Cookery for PKU by V.E. Schuett
Available from the National PKU News Website under "Diet-Related Info."
Low Protein Food List for PKU by V.E. Schuett
Available from the National PKU News Website under "Diet-Related Info."
Recommended Reading
On the History and Scientific Basis for Treatment:
Centerwall SA and Centerwall WR. The discovery of Phenylketonuria: the story of a young couple, two retarded children, and a scientist. Pediatrics 2000; 105: 89-103.
Medical Research Council Working Party on Phenylketonuria. Phenylketonuria due to phenylalanine hydroxylase deficiency: an unfolding story.BMJ 1993; 306:115-119.
Azen CG, Koch R, Friedman EG, et al. Intellectual development in 12-year-old children treated for Phenylketonuria. AJDC 1991;145:35-39.
Azen CG, Koch R, Friedman E, et al. Summary of findings from the United States Collaborative Study of children treated for Phenylketonuria. Eur J Pediatr 1996; 155(suppl 1):S29-S32.
Burgard P, Bremer HJ, Buhrdel P, et al. Rationale for the German recommendations for phenylalanine level control in Phenylketonuria 1997. Eur J Pediatr 1999;158:46-54.
Wappner R, Cho S, Kronmal RA, et al. Management of Phenylketonuria for optimal outcome: a review of guidelines for Phenylketonuria management and a report of surveys of parents, patients, and clinic directors.Pediatrics 1999;104(6):e68. Available online at http://www.pediatrics.org/cgi/content/full/104/6/e68