PKU Transitions in the Early Years

Mom holding girl 

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 she is diagnosed with PKU. The family and the health care team can help her learn good health care habits, the same way they help her learn other life skills. A child who learns good health care habits will probably have good health habits and attitudes all her 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 her 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 she can do. Expect good things from your child and encourage her to expect the best from herself.

Birth to two years old


Help your child develop her sense of independence by letting her explore by mouth, touch, and crawling.

Help your child develop trust by making her surroundings safe.

Begin to set limits with your child.

Take short breaks from your child to renew your energy.


Take part in community activities like the Early Years Program.

Take your child to playgrounds and parks.

Talk with parents of other children with PKU and with parents whose children do not have PKU.

Cognitive (learning) development

Encourage situations where your child can learn by looking, touching, and mouthing.

Help your child imagine things and keep images in her mind by playing games like peek-a-boo.

Help your child learn words by talking about and naming things around you.

Life skills

By age two, begin to teach your child everyday skills like brushing teeth and getting dressed.

Give your child very simple chores, for example, "Go get your shoes."

Teach your child what "no" means. This will be helpful when she is older.

PKU care

Take blood spots once a week until your child is two years old.

Visit the PKU clinic to see the dietitian and nurse when you need to. Contact them for results of blood spots.

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

Follow the special diet prescribed by the dietitian.

Ask questions to be sure you understand what is happening.

Three to five years old


Help your child learn to make decisions by giving her choices when possible.

Let your child start to develop her own sense of who she is.

Teach your child what happens as a result of how she acts or choices she makes.

Teach "good touch" and "bad touch" near age five.


Take part in programs offered in your community, such as story time at the library.

Let your child learn what she likes to do by trying different activities.

Invite families with children your child's age to your home to play.

Cognitive (learning) development

Encourage your child to picture in her mind recent events or things she enjoys.

Help your child to communicate by using letters and colours and by labelling things.

Encourage development through play.

Life skills

Give your child simple errands and simple chores.

Encourage self-care, such as brushing teeth and picking up toys, with reminders or help.

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

PKU care

Take blood spots every two weeks. Set up a routine for doing blood spots at home, so you always do them on the same day and time.

Contact the dietitian or nurse for blood work results.

Tell your child that she has PKU and that you go to clinic to take care of her health.

Identify "green light" or "go" foods. Low-protein foods are best. Encourage your child to drink medical food as prescribed by the dietitian.

Key points

  • Babies and young children are learning new things every day. Encourage your child's development by playing with her and teaching her.
  • As your child grows older, she can learn to do more things for herself. Give her simple chores to do and encourage her to learn new things.
  • Set up a routine for PKU care, and start teaching your child about "green light" or "go" foods.

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