These resources are for families and educators of children and teens with special dietary needs. Each guide contains information about the metabolic condition, with guidelines and suggestions about how to stay on-diet for long-term health.
Sticking to a Special Diet Without Getting Stuck – This guide is for parents of children with any metabolic disorder that requires a restricted diet. It offers guidelines and suggestions for helping your child follow medical recommendations, such as eating a low-protein, low-fat, low-carbohydrate, or dairy-free diet and taking enough supplements or formula. Sticking to the diet presents different challenges at every stage of life, so we include recommendations for parents of children of all ages.
Low Protein Diet & Formula – This section includes tips on formula and diet for teens, adults and for parents of children following a low protein diet. Learn about what’s actually in the formula, why you have to take it consistently, new improvements in formula options, and tips for how to manage taking it on a daily basis. The more information and options you have, the better you can handle the challenges of staying on-diet and consistently taking the formula.
Low Protein Recipes! – This big collection of recipes is for adults, teens, and kids. It was developed as part of the PKU Resource Mothers program at Boston Children’s Hospital. Many of the recipes’ authors are women who have PKU, and who managed healthy pregnancies!
Low Protein Diet Resources – A useful list of low protein food and formula vendors and suppliers.
Transition Toolkit – The Boston Children’s Hospital Transition Toolkit was created for teenagers who are transitioning to adulthood, and who are ready to be in charge of managing their metabolic condition and their health in general. The toolkit includes basic FAQs about various metabolic conditions, a health summary form for teens to fill out and keep in a safe place, and a transition plan for teens to discuss and fill out with their primary care provider and metabolic specialist.
TEMPLE Books and Videos (Tools Enabling Metabolic Parents lEarning) – Nutricia Learning Center developed educational books and videos explaining six different inborn errors of metabolism for you and your family. Featured conditions include: Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD), Glutaric Aciduria type 1 (GA-1), Homocystinuria (HCU), Isovaleric Acidemia (IVA), and Tyrosinemia type 1 (HT-1). Available in English and Spanish.
PHENYLKETONURIA (PKU)
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.
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.
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.
GALACTOSEMIA
Galactosemia: Information for Educators – These online and print guides are for teachers with students who have galactosemia, and feature information about teaching strategies, therapies, classroom environments, teaching technologies, and other resources.
Moving Forward: Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI) – This comprehensive five-part guide, produced at Boston Children’s Hospital, contains sections for teens and women who have galactosemia and POI, and for their family members. The guide explains the symptoms and underlying causes in easy-to-understand terms, and outlines ways of getting the care and support you need. It also provides a list of resources, and a glossary of medical terms.
MCAD Deficiency
An Educator’s Guide to MCADD – This online and print guide is for teachers of students who have MCADD (medium chain acyl-CoA dehydrogenase deficiency). The guide offers information about the condition, signs and symptoms of a health crisis, treatment and prevention, and a summary of the latest research. It includes a section on how teachers can help their students avoid problems, with tips provided by parents of children with MCADD.
MITOCHONDRIAL DISORDERS
Moving on with Mito – This comprehensive guide, developed at Boston Children’s Hospital, is for teens and young adults living with mitochondrial disorders who are transitioning to adult health care and independent living. The guide includes: mitochondrial basics; health care advice; tips for success in college, employment, and independent living; and stories of real people with mitochondrial disorders living their lives to the fullest.
UREA CYCLE DISORDERS
An Educator’s Guide to Urea Cycle Disorders – This guide is for teachers and school nurses working with students who have urea cycle disorders (UCDs). It includes background information about UCDs, as well as in-school health care strategies, nutrition guidelines, ideas for academic support, and a parent-teacher-school-nurse communication planner.