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
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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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