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

adobe Introductory letter
adobe About PKU
adobe Things to do
adobe Advice from other parents who have children with PKU
adobe Table of contents

Section 1: Contact Information

adobe Introduction
adobe Emergency contact information
adobe Insurance information
adobe Medical expenses
adobe Health care information

Section 2: Clinic Information

adobe Introduction
Cristine M. Trahms Program for PKU Management Guidelines
adobe Clinic Schedule
adobe Contacting the Clinic

adobe PKU Self-Management Timeline
adobe PKU Clinic Website
adobe 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
adobe Special article: The Discovery of PKU
adobe Babysitter's Guide to PKU
adobe New Parents' Guide to PKU
PKU Action Group

Section 3: Food and Formula

adobe Introduction
adobe Phenyl-Free formula facts
adobe Formula intake record sheets
adobe How to keep a food record
adobe Diet record sheets
adobe Formula First
adobe Finger food suggestions and recipes
adobe Finger Foods Are Fun
adobe Look-alike Foods
Chef Lophe

Section 4: Your Health Care Information

adobe Introduction
adobe Phenylalanine levels
adobe Growth record
Growth charts (Download charts from the CDC website
adobe Health Care provider information
adobe Insurance information
adobe Medical expenses
adobe Recommended childhood immunization schedule
adobe Emergency contact information
adobe Example of a star chart
adobe Healthcare transitions: Looking ahead

Section 5: Personal

adobe Introduction


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