School Info

Talking with School Staff

It is important for teachers and other staff to understand the basics of PKU, why your child needs a special diet, and why careful supervision
is needed. Anyone who comes in contact with
your child will need a basic understanding of the dietary restrictions.

Some key points that you may want to include:

  • PKU is a genetic condition that is not contagious.
  • Apart from needing a special diet, a person with PKU is healthy.
  • People with PKU cannot break down an amino acid called phenylalanine or Phe, which is found in all foods containing protein.
  • Phe can build up in the blood and damage the developing 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 will cause problems over the long-term. Having food that is not part of the diet should not be considered a “treat” as it will have implications for an individual with PKU.
  • A person with PKU does not outgrow it and must stay on the diet for life.

Changes in school or classroom practice or policy may also need to be made to help your child adhere to their diet, such as:

  • Creating a “no-swapping” rule to prevent children from trading or sharing food.
  • Asking teachers to pack any leftover food in your child’s lunchbox so you can deter mine how much was eaten.
  • Keeping low protein snacks at school when snacks or treats are necessary.
  • Allowing child to drink formula at school or in the classroom.


Many school districts will put together a special health care, 504 plan or IEP to ensure that your child’s PKU is managed at school in a consistent way.

A sample health care plan can be found here.

A sample 504 plan can be found here.

An article about 504 plans can be found here.

To learn more about your rights and the requirements of public schools to provide school lunch, please click here.

To contact the USDA program in your state for additional assistance in ensuring that your child’s nutritional needs are met while at school click here. 

There are several good resources available for you to share with your child’s teacher.

An Educator’s Guide to PKU is for teachers to help support children with PKU at school. Developed in the Division of Metabolism and Genetics at Boston Children’s Hospital, with input from teachers, students, and parents, the guide includes helpful information about low-Phe nutrition, common learning challenges, and guidance for educators, resources to find additional information and support and more.

A Teacher’s Guide to PKU was developed by the Texas Department of State Health Services to introduce teachers to the basics of PKU and what to expect in the classroom and how to help.

Genetic Education Materials for School Success (GEMSS) is a website created for teachers, therapists, counselors, parents and schools so they can best support students with genetic conditions. They have a separate section on PKU.  The site has a number of useful tools and tips for educational and classroom support, dietary needs, field trips, sports and much more.