PKU Toolkit - A Guide to PKU Management for Teens and Young Adults - Produced by Children's Hospital Boston, Applied Nutrition, and the New England Consortium of Metabolic Programs

What is Transition?

Transition means change. It means that time of your life when you transition from being a teenager into being a young adult.

Moving toward adulthood is a major transition. It can mean:

  • Taking on new challenges
  • Doing more things on your own
  • Having more choices
  • Gaining a new sense of freedom and independence
  • Taking on more responsibility

Transition from youth to adulthood often involves many factors leaving home and managing finances, education, employment and recreation. At the same time, an important part of a transition process is preparing for health care.

As a young individual with PKU you will eventually need adult centered care. Adult health care for PKU means:

  • Being seen by adult health care providers in an adult setting.
  • Focusing on meeting the health needs that adults have.
  • Having a trained health care provider to answer, discuss and counsel you about adult issues and concerns regarding PKU and its treatment.
  • Having the opportunity to network with others with PKU of your age.

Your Adult Medical Home

A woman sits and listens to her doctor in an officeA medical home is not a building, house, or hospital. It is a place where you can get primary care that is accessible, continuous, comprehensive, coordinated, compassionate, and culturally effective.

An initial first visit should include the following:

  • Completion of forms about health and insurance
  • A conversation with the health care provider about your medical history, health and metabolic disorder
  • A physical examination
  • A blood test and other routine tests
  • Women may have a gynecological examination
  • Referrals for further evaluation if needed
  • A letter back from your doctor with the results of the examinations and blood levels that also is sent to the previous metabolic doctor
  • A date for your next appointment

What do I need to bring with me?

You should have with you:

  • A copy of your health records, including blood levels, physical examinations and other relevant information
  • Name and address of metabolic physician
  • Copies of the "Transition Intake Form", "Health Care Skills Checklist" and "PKU Wallet Card"

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PKU Toolkit
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