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 Children’s Hospital Boston 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.
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 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
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 Children’s Hospital Boston, 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 Children’s Hospital Boston, 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 Children’s Hospital Boston, and it’s purpose is to help doctors learn more about keeping mothers with PKU and their children healthy.
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