PKU Pal Curriculum
The PKU Pal was developed to help families in the management of Phenylketonuria.
It is divided into sections to help keep papers, appointments, and other information organized. Each section begins with a short introduction that describes its purpose and suggests information that could be added. Many families find it helpful to take their PKU Pal to clinic and to other medical appointments. That way, all necessary information is in one place.
The PKU Pal was developed by the Cristine M. Trahms Program for Phenylketonuria. Distribution is funded by the PKU Action Group. It is provided to families of newly diagnosed infants with PKU, served by our program.
Download the PKU Pal below.
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Table of Contents and Introductory Material
Introductory letter
About PKU
Things to do
Advice from other parents who have children with PKU
Table of contents
Section 1: Contact Information
Introduction
Emergency contact information
Insurance information
Medical expenses
Health care information
Section 2: Clinic Information
Introduction
Cristine M. Trahms Program for PKU Management Guidelines
Clinic Schedule
Contacting the Clinic
PKU Self-Management Timeline
PKU Clinic Website
National PKU News information and website
Low Protein Food List order form
Low Protein Cookery for PKU order form
National PKU News order form and information
Special article: The Discovery of PKU
Babysitter's Guide to PKU
New Parents' Guide to PKU
PKU Action Group
Section 3: Food and Formula
Introduction
Phenyl-Free formula facts
Formula intake record sheets
How to keep a food record
Diet record sheets
Formula First
Finger food suggestions and recipes
Finger Foods Are Fun
Look-alike Foods
Chef Lophe
Section 4: Your Health Care Information
Introduction
Phenylalanine levels
Growth record
Growth charts (Download charts from the CDC website
Health Care provider information
Insurance information
Medical expenses
Recommended childhood immunization schedule
Emergency contact information
Example of a star chart
Healthcare transitions: Looking ahead
Section 5: Personal