PKU Transitions in the Middle Years

Father and son laughing together 

Children go through many changes as they grow up, including how they think, what they like, and how they take care of themselves. Big changes are often called transitions.

A child must go through a transition in health care when he is diagnosed with PKU. The family and the health care team can help him learn good health care habits, the same way they help him learn other life skills. A child who learns good health care habits will probably have good health habits and attitudes all his life.

This page will help you think about age-appropriate goals for your child. It will give you ideas to help your child become more confident and independent in life and in his health care. It also includes extra goals for children with PKU.

Each child has different abilities from other children. Your child may surprise you with what he can do. Expect good things from your child and encourage him to expect the best from himself.

Six to seven years old


Have rules to follow at home. Set reasonable consequences when rules are not followed.

Give your child tasks at home. Set routines for household chores.

Tell you child when he has done something good.

Give your child choices. Encourage him to make decisions.


Encourage your child to have hobbies and do things for fun. For example, he can take part in community activities, sometimes without parents.

Set an example of good social behaviour for your child.

Talk to your child about friends and school.

Cognitive (learning) development

Encourage your child to be creative and use his imagination.

Support your child's school work but let him do his own work.

Teach your child important phone numbers and addresses. Give him other helpful tasks where he can use his memory.

Life skills

Have your child run simple errands and perform simple chores and self-help tasks.

Help your child keep track of what he needs to do each day by using a calendar.

Help your child learn not to harm herself or others. For example, teach her not to touch a hot stove, run into the street, or hit other people.

PKU care

Explain to your child:

  • why it is important to do blood spots once a month
  • what causes high PHE levels

Encourage your child to start doing simple tasks related to PKU care. For example, he can prepare the place the blood spot will be taken from, and gather the equipment.

Teach your child what to say when people ask questions about PKU.

Keep a record of your child's diet and PHE levels.

Visit the PKU clinic regularly.

Encourage your child to drink medical formula at lunch time in school.

When your child is in Grade 1, he should have a neuropsychological assessment (a kind of test) near the second school term.

Eight to 11 years old


Let your child try new things, even if he will make mistakes. Making mistakes is a part of life and part of learning.

Teach your child to speak up for himself.

Give your child chances to be creative and use her imagination.

Talk with your child about how the body changes when becoming a teenager (puberty).


Encourage your child to activities at school and outside of school. These can be activities he does with a group or by himself.

Teach your child to cooperate, play fairly, and follow social rules.

Provide social gatherings for your child if you can. For example, have a birthday party or take a group of children to the park.

Cognitive development

Ask your child's ideas for fixing a simple problem. This will help him learn to solve problems.

Encourage your child to ask for help when he finds homework or other tasks hard to do.

Let your child plan simple school projects.

Talk about what your child wants to be when he grows up.

Life skills

Have your child perform simple chores and self-help tasks. For example, you and your child could cook together to help him develop responsibility and skills.

Help your child keep track of what he has to do each day by using a calendar.

Help your child not to do harmful things such as swearing or touching other people in an inappropriate way.

Encourage your child to do things such as following safety rules and putting up his hand to speak in class.

PKU care

Explain why it is important to have low PHE levels.

Ask your child what he knows about PKU. If there are things he does not understand, explain them to him.

Teach your child to:

  • make medical formula
  • keep a food record
  • tell you about food he eats outside your home

Help your child talk with the PKU team directly.

Help your child to start taking her own blood spots.

Teach your child to read food labels and identify high (red light) and low (green light) protein foods.

When your child is in Grade 6, she should have a neuropsychological assessment (a kind of test).

Key points

  • As your child grows older, he can do more things for himself.
  • Encourage your child to be responsible for his homework and for some of his PKU care.
  • Tell your child you are there to help him if he needs it.

Annette Feigenbaum, MB, ChB, FRCP

Guidelines designed by:
Elizabeth Kerr, PhD, CPsych
Karen Sappleton, MSEd, MSW, RSW
with the PKU Team at The Hospital for Sick Children

In memory of Dr. Beverley J. Antle


Dawson MM, Guare R, Dawson P. Executive Skills in Children and Adolescents. New York