My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials include the newest and best thinking on PKU and offer hundreds of tips, advice and what to expect from birth to adulthood both practically and emotionally.
The National PKU Alliance hopes My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help.
The NPKUA would like to thank the following companies and people for their generosity and expertise on this project. Without their support, the PKU Binder would not have been possible:
- BioMarin Pharmaceuticals — for supporting My PKU Binder with an educational grant
- Applied Nutrition — for use of My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey: Applied Nutrition Corp. 2007 in several of the chapters
- Australian Society for Inborn Errors of Metabolism — for use of their PKU Handbook in several of the chapters
- Children’s Memorial Hospital Chicago — for their edits, contributions and medical review of the information in the handbook
Click here to download complete binder (8 MB)
Click on any of the Chapters to see what is in that section.
Table of Contents
- Acknowledgements Click here to download >
- Personal Health Form Click here to download >
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Chapter 1: What is PKU?
What is PKU?, What are the symptoms and treatment for PKU?, The Genetics of PKU
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Chapter 2: Treatment and Diet Overview
The PKU Clinic Team, Diet Essentials, Counting Phe/Protein, KUVAN®, Large Neutral Amino Acids (LNAA), Future of PKU Research and Treatment, Special Considerations
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Chapter 3: Monitoring Blood Phenylalanine Levels
Blood Phenylalanine Levels, Monitoring Phe Levels, Suggestions for Success and Avoiding Problems, Tips for Successful Blood Sampling, Blood Samples from the Vein
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Chapter 4: Diagnosis to 2 Years
What to Expect, Development, Treatment and Diet, Blood Phe Monitoring, Special Considerations for Diagnosis to 2 Years
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Chapter 5: Ages 3 to 6 Years
What to Expect, Development, Treatment and Diet, Blood Phe Monitoring, Special Considerations
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Chapter 6: Ages 7 to 12 Years
What to Expect, Development, Treatment and Diet, Blood Phe Monitoring, Special Considerations
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Chapter 7: Ages 13 to 17 Years
What to Expect, Development, Treatment, Blood Phe Monitoring, Special Considerations for 13-17 Year Olds
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Chapter 8: 18+ to Adulthood
What to Expect, Transitioning to Adult Care, Treatment and Diet, Blood Phe Monitoring, Special Considerations in Adulthood
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Chapter 9: PKU and Pregnancy
What to Expect, Treatment and Diet, Blood Phe Monitoring and Health Assessments, Special Considerations
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Chapter 10: Dining Out and Other Tips
Working with Restaurants, Suggestions When Dining Out, Special Considerations
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Chapter 11: Traveling
Traveling
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Chapter 12 - Emergency Preparedness
How to Prepare Yourself for an Emergency
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Chapter 13: Tracking Your Progress
Sample Diet Record, PKU DIET DIARY, Sample Phe Log
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Chapter 14: Insurance Coverage for PKU Treatment
Insurance Overview, Understanding Your Current Health Insurance Plan, Letter of Medical Necessity, Dealing with Your Insurance Company, Flexible Spending Accounts, Insurance Resources, Sidebar: What is ERISA?
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Chapter 15: Resources
Sample Letters for School and Other Activities, Handouts, Educational Games, Sample Menu, Low Protein Grocery Shopping Tips, Ordering Information
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- Chapter 16 Glossary