General | Booklets & Brochures | Food
& Formulas
National
PKU News
An online source of up-to-date news and information about 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.).
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 University of Washington PKU Clinic to help
families in the management of Phenylketonuria.
 PDF
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or printing. Acrobat is available free of charge from the Adobe Web
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|
A
Babysitter's Guide to PKU
Guidelines and helpful hints for babysitting a child with 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.
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 Target
A food target tool, developed by the University of Washington PKU Clinic,
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.
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.
Sources
of Low Protein Foods
A list of companies from which you can order low protein foods by phone,
fax or online.
Low Protein
Cookery for PKU by V.E. Schuett.
Available from the National PKU News
Website under "Diet-Related Information."
Low
Protein Food List for PKU by V.E. Schuett.
Available from the National PKU News
Website under "Diet-Related Information."
General | Booklets & Brochures | Food & Formulas