General | Booklets & Brochures | Food
& Formulas
Recommended Reading
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University
of Washington PKU Clinic Management Guidelines
A summary of the treatment protocol used by the University of Washington.
University
of Washington PKU Self-Management Timeline
A guideline of suggested tasks for children to adopt as they progress
from infancy to adulthood.
PKU
Pal
A notebook developed by the University of Washington PKU Clinic 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.
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 Target.
A food target tool, developed by the University of Washington PKU Clinic,
to help with food choices for PKU diet management.
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 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
General
| Booklets & Brochures | Food
& Formulas
Recommended Reading