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Phenylketonuria (PKU)

A person has phenylketonuria (PKU) when thier body cannot process a chemical called phenylalanine. The resources in this section are for parents of babies and children with PKU, and also for teens and adults who have PKU —

PKU: A Guide for Parents of Babies Recently Screened
This guide explains what PKU is, how babies are tested for it, what effect it has, and how it is treated

PKU Camp at Burgess & Hayward
Since 1997 Camp Burgess & Hayward in Sandwich, MA, has teamed with Boston Children’s Hospital to offer a coed week of PKU Camp in August. Children with PKU join campers with and without PKU for a totally integrated week of overnight summer camp.

An Educator’s Guide to PKU – This guide is for teachers to help support children with PKU at school. Developed in the Divisions of Metabolism and Genetics at Boston Children’s Hospital, with input from teachers, students, and parents, the guide includes helpful information about low-Phe nutrition, common learning challenges, guidance for educators, resources to find additional information and support, and more.

PKU Primer for Adolescents and Adults
This guide features information for adolescents and adults with PKU. It includes: a definition of PKU, how it is inherited, how to maintain a healthy diet, how to handle school/work, and details about becoming pregnant if you are a woman who has PKU.

PKU Newsletter for Adults with PKU
We hope all adults with PKU will enjoy reading this newsletter describing recent events, new treatments and upcoming studies.  If you would like more information, please contact your PKU Clinic or one of us at the Boston Children’s Hospital Metabolism Clinic. Contact information is below.

PKU Toolkit
This toolkit is designed to be a personal guide for teens and young adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues. It provides information, resources, checklists, and quizzes to help you better manage your PKU. Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.

Teens river rafting during Teen Challenge 2003

Teens river rafting during Teen Challenge 2003

Teen Challenge
Teen Challenge is an exciting, three-day, summer event designed especially for teenagers (ages 13-18 years) with PKU or other metabolic conditions. The program is offered through the Metabolism program at Boston Children’s Hospital, and is designed to help teens build a supportive social network, try new and challenging activities, build resiliency and self-confidence, and build skills for independent health managment.

PKU Nutrition
This section includes tips on formula and diet, a big collection of low-protein recipes, and other nutrition resources for adults and teens with PKU, and for parents of children who have PKU. The more information and options you have, the better you can handle the challenges of staying on-diet, keeping Phe levels low, and consistently taking the formula.

Maternal PKU & Pregnancy: Making Every Week Count
If you are a woman with phenylketonuria (PKU), and are planning to get pregnant, or already are pregnant, this guide is for you.   Developed by metabolic and nutrition specialists at Boston Children’s Hospital, the guide includes sections on PKU, Maternal PKU, genetics, newborn health, PKU recipes, and PKU & pregnancy resources.

Maternal PKU Research Study
Women with PKU who have one or more children are invited to participate in this research study, and their children are eligible as well.  The study is being conducted at Boston Children’s Hospital, and it’s purpose is to help doctors learn more about keeping mothers with PKU and their children healthy.

PKU Connect
PKUConnect is a new resource for PKU patients and their families, produced by Nutricia Advanced Medical Nutrition and launched in 2012. Whether you or someone you care for is new to PKU or has been living with it for a while, you’ll find helpful resources at PKUConnect.  You can: connect with others like you; receive relevant PKU information and tips; access easy and great-tasting low-protein recipes; and ask questions, share your views, or get advice in the members-only forum.

The PKU Challenge
A support and resources organization for adults with PKU, founded by Christopher Howell. Offering community, information, events, and support services, including the National PKU Food Bank. The PKU Challenge safely connects adults with PKU to each other, and holds several fundraisers throughout the year, in support of PKU-related programs.

Save PKU Planet – Video Game
Save PKU Planet is a lively and entertaining video game produced by an international team of health professionals and media developers. The game starts with two short, funny videos that prompt the player to help save the PKU Planet. The video game itself features challenges which teach the player about healthy PKU nutrition. The project was directed by Rodolfo Ramos Alvarez (PhD), with consulting from PKU experts in Spain, Denmark, Canada, the UK, and the USA, including members of the New England Consortium of Metabolic Programs.