PKU Transitions in the Teenage Years

Girl smiling with her fatherPreteen girl laughing with her father 

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.

Twelve to 14 years old

Parenting

Teach your teen to speak up for himself.

Talk to him about body changes in puberty, peer pressure, and dating.

Help your teen find positive older role models.

Let your teen know you will answer any question he may have.

Social

Encourage your teen to join teams or clubs at school and to get involved in activities outside of school.

Do not be surprised if your teen enjoys hanging out with friends more than family.

Teach your teen to be assertive and confident about living with PKU and having a special diet. Help him practice these skills.

Cognitive development

Let your teen organize his own school-related work, including assignments and books.

Allow your teen to manage his own school schedule.

Allow your teen to plan and carry out long-term projects for school.

Life skills

Give your teen his own chores and daily responsibilities as well as occasional tasks.

Let your teen plan his own time, including after-school activities, homework, and family responsibilities.

Teach your teen money management skills.

PKU care

Have your teen do monthly blood spots on his own.

Have your teen:

  • keep a food record
  • keep a log of protein (PHE) intake
  • prepare and plan his own meals according to protein allowances
  • take part in the special programs offered by the PKU Team

Visit the PKU clinic to see team members and take part in transition education.

Fifteen to 18 years old

Parenting

Encourage your teen to be a mentor for younger children.

Encourage your teen to work after school or take part in other activities to gain more skills.

Trust your teen, and encourage him to trust you. Talk to him honestly about issues like peer pressure, dating, and recreational drugs.

Social

Encourage your teen to be assertive and choose good foods when out with friends or going on dates.

Encourage your teen to keep in touch with friends by phone or email, and allow her to make plans with friends.

Encourage your teen to stay active and to participate both in and outside of school. This will help his self-confidence.

Cognitive (learning) development

Establish a long-term education or career goal. Think about the details. Help your teen make plans for meeting that goal.

Give your teen independence with school work on a day-to-day basis. Let him know you are there for him as support and as a resource.

Encourage your teen to take part in activities that will help him develop new skills.

Life skills

Have your teen shop and run errands for himself and for family members as needed.

Allow your teen to plan his own time, including after-school activities, homework, and family responsibilities.

Talk with your teen about reckless and dangerous behaviours such as smoking, alcohol, drugs, and shoplifting. Discuss safe sex with your teen.

Set limits on what you will buy for your teen.

PKU care

Work out a system with your teen for doing blood spots, monitoring his diet, and keeping a food record.

Help your teen take charge, but let your teen know that you are there to support him.

Talk about the importance of staying on a PKU diet for life.

Encourage your teen to see the PKU team by himself and to ask questions and problem-solve with them.

Encourage your teen to read about PKU and to join PKU groups or chat lines such as PKU News on the Internet.

Key points

  • As your teen grows older, he should become more confident and independent. He should be able to take on more responsibility.
  • Encourage your teen to take charge of his own health and life and to solve problems for himself.
  • Let your teen know that you are still there to help and support him.

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

11/10/2009

Adapted from:

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





Notes: