Sending them off with peace of mind.
When children start school, their life expands beyond family to include relationships with peers, teachers, and school staff. With increased independence comes new challenges with the PKU diet. This section provides guidance about how to confidently share your expertise about your child and their low-protein diet and help support your child as they face new challenges of their own.
Download My PKU Binder
The PKU Binder* is a comprehensive manual on how to effectively manage PKU day-to-day, filled with hundreds of tips, advice, from birth to adulthood, on practical and emotional levels.
The PKU Binder* is a comprehensive manual on how to effectively manage PKU day-to-day. Filled with tips and advice, from birth to adulthood, on practical and emotional levels.
*Treatments and guidelines are constantly changing. The PKU Binder does not reflect new treatments and updated guidelines. Visit our treatment section for the latest information. The NPKUA would like to thank BioMarin Pharmaceuticals; Applied Nutrition; Australasian Society for Inborn Errors of Metabolism; and Ann & Robert H. Lurie Children’s Hospital of Chicago for their generosity and expertise in helping to make this project a reality.
My PKU Binder includes the following topics and tips for the school-aged child and their caregivers:
- What to do when faced with new and enticing foods
- How to prevent feeling social isolation
- Tips for supporting the development of problem-solving skills
- How to encourage your child to participate in their own treatment
- Suggestions for ways to help your child manage to their low-protein diet
- Tips for taking blood samples
- How to talk with school staff about PKU
- School-provided lunches
- After-school activities
My PKU Binder also includes the following topics and tips for teenagers with PKU and their caregivers:
- PKU management and self-management for teens
- Peer pressure and the low-protein diet
- Getting ready for social gatherings
- Positive self-image
- Risky behavior
School information
It’s important for teachers, staff, and anyone who interacts with your child to understand the basics of PKU and its dietary restrictions, why your child needs a special diet, and why careful supervision is critical.
Key points to include:
- PKU is a genetic condition––it’s not contagious.
- Apart from needing a special diet, people with PKU are healthy.
- People with PKU cannot break down an amino acid called phenylalanine or Phe, which is found in all foods containing protein and some artificial sweeteners.
- Phe can build up in the blood and damage the brain.
- Staying on a low-protein diet keeps Phe levels in a safe range, allowing for normal development and a healthy life.
- Eating the wrong foods will not make a person with PKU sick right away but may cause problems long term.
- Having food that is not part of the diet should not be considered a treat because it will have implications for an individual with PKU.
- People with PKU do not outgrow the condition and need to stay on a lifelong managed diet.
Guide to PKU for School Nurses and Teachers
Accommodations and Support at School
Children with PKU qualify for a Section 504 plan. Some may qualify for an Individual Education Plan (IEP) depending on their individual need for support. Your child’s school may also implement a Health Care Plan to provide guidance to teachers and staff on the management of your child’s PKU.
Section 504 vs Individual Educational Plans
Section 504 plans are put in place for students who have a disability that affects a major life activity, but who are capable of learning and succeeding in the classroom, if provided the right accommodations for their needs. Students who receive support through Section 504 do not require specialized or individualized instruction. This support is not included on a Section 504 plan. Section 504 support falls under The Americans with Disabilities Act.
Individual Educational Plans (IEPs) are created for students who require specialized instruction to learn effectively at school. An example of specialized instruction is individualized instruction in behavior or academics provided by a special education teacher. If your child’s PKU, causes difficulty learning at school, they may qualify for IEP support. IEPs are provided under The Individuals with Disabilities Education Act (IDEA), special education law.
Sample 504 Plan
Sample Health Plan
For more about Section 504 and IEPs, and resources for educators, view the New England Consortium of Metabolic Programs’ Educators Guide
School Lunch
To learn more about school lunches and your child’s right to have a low-protein meal provided by their school, here are some resources:
Contact the USDA program in your state for additional assistance in ensuring that your child’s nutritional needs are met while at school.
Find a clinic
Click here to find a clinic near you.
Insurance Coverage
When it comes to insurance, it can be very confusing, but we’re here to help and to take the confusion out of it with information, explanations, and resources. Insurance information
Cooking and Food
So much in life revolves around food. It’s how we fuel ourselves, how we socialize, and it’s central to holidays and family traditions. For families who have a loved one with PKU, there are great resources that can help you integrate low-protein recipes into your daily life and festivities. Cooking and Food
