There are numerous organizations and government resources available across Canada to help parents and children better manage living with epilepsy. There are also several books available for both parents and children to help them better understand the condition.
Epilepsy checklists
The following checklists can be used by to help you understand what you know, and what you still need to learn, about your child's epilepsy, keep track of your child's health-care team, and guide you in recording and describing your child's seizures:
- Epilepsy Checklist – What do you know about your child’s epilepsy?
- My child's epilepsy care team
- Describing and recording seizures
For older children and teenagers, the following checklists can help them to understand what they know and still need to learn about epilepsy, as well as keep track of who is on their health-care team:
Epilepsy associations and resources
Epilepsy Canada
Epilepsy Canada is the only national non-profit organization whose mission is to enhance the quality of life for persons affected by epilepsy through promotion and support of research and facilitation of education and awareness initiatives that build understanding and acceptance of epilepsy.
Canadian Epilepsy Alliance
www.canadianepilepsyalliance.org
The Canadian Epilepsy Alliance is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy and public awareness. Learn about epilepsy and seizure disorders and have your say on the leading issues of the day with this resource.
Epilepsy Ontario
Epilepsy Ontario is a registered charitable, non-profit, non-governmental health organization. Dedicated to promoting independence and optimal quality of life for children and adults living with seizure disorders, Epilepsy Ontario promotes information, awareness, support services, advocacy, education and research.
Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, annually, people across the world are encouraged to wear purple and host events in support of epilepsy awareness.
Epilepsy Toronto
Epilepsy Toronto is a not-for-profit, registered charity, founded in 1956, dedicated to the promotion of independence and optimal quality of life for all people with epilepsy and their families. A complete range of epilepsy support services, information programs and education to the public at large are offered.
Epilepsy South Central Ontario
Epilepsy South Central Ontario is a non-profit charitable organization that provides education, information and support to families and individuals. They are dedicated to improving the quality of life for persons living with epilepsy. This organization serves approximately 40,000 people living with epilepsy in Halton, Peel, Hamilton, Brantford, Haldimand/Norfolk, Kitchener/Waterloo, Guelph, Cambridge and surrounding areas.
SUDEP Aware
SUDEP Aware promotes knowledge and understanding of Sudden Unexplained Death in Epilepsy (SUDEP) through support, education, and collaboration.
Epilepsy research
International League Against Epilepsy
The International League Against Epilepsy (ILAE) is an association of doctors and other health professionals, with chapters in 96 countries. Its aims are to advance knowledge about epilepsy, to promote research, education and training, and to improve services and care for patients. It publishes a research journal, Epilepsia, and a newsletter, Epigraph.
Government and community resources (Ontario and Canada)
Local Health Integration Networks (LHINs)
Local Health Integration Networks (LHINs) are funded by the Ontario Ministry of Health and Long-Term Care. They determine eligibility for, provide referrals to and coordinate short-term and long-term care services in the home and at school, including:
- personal care
- nursing
- physical therapy
- occupational therapy
- speech and language therapy
- respite care
- transportation
Some of these services may be paid for by the Ministry of Health and Long-Term Care, while others may be the responsibility of the family.
RespiteServices.com
Respiteservices.com is a group of Toronto agencies funded by the Ministry of Community and Social Services and the Ministry of Children and Youth Services. It links families with respite care. Respite care is a support service for families; it offers temporary relief from the physical and emotional demands of caring for your child with epilepsy.
There are two types of respite care, one in your home and the other outside your home. Respiteservices.com offers two programs:
- The respite program helps to find respite care for your child.
- The Community Helpers for Active Participation, or CHAP, program helps you to find a worker who is interested in supporting your child. Special Services at Home funding can be used to pay for hiring a CHAP worker.
SickKids Epilepsy Classroom
www.sickkids.ca/en/learning/patient-family-education/epilepsy-classroom/
The SickKids Epilepsy Classroom is a day treatment program that caters to the individual learning and social-emotional needs of children who have epilepsy that is difficult to control. It is jointly run by the Toronto District School Board and the Centre for Brain and Mental Health at SickKids.
Canadian MedicAlert Foundation
www.medicalert.ca/no-child-without
The "No Child Without" program provides free medical alert ID tags to schoolchildren aged 4 to 13 years. You must register for the program through your child’s school. Call 1-800-668-1507 or visit the website to determine if your child’s school is registered.
ARCH Disability Law Centre
ARCH Disability Law Centre is a legal clinic that focuses exclusively on disability rights in Ontario. They provide advice, referrals and legal representation to ensure the equality of people with disabilities.
Special Needs Planning Group
This organization is made up of parents of children with disabilities. They offer guidance about issues related to the financial planning and other future planning necessary for your child with special needs, including wills, Henson trusts and powers of attorney. They can help with questions about current and future financial planning issues while your child is young and after your child turns 18 years of age. For more information, please call 905-640-8285.
Books for adults
Growing Up with Epilepsy: A Practical Guide for Parents
by Lynn Bennett Blackburn
Paperback: 161 pages
Publisher: Demos Medical Publishing (2003)
ISBN: 1888799749
This text is designed to help parents of children with epilepsy by demonstrating how to discipline, support social development, and negotiate the educational system. Advice is also provided regarding various medications and how to manage potential side effects.
Seizures and Epilepsy in Childhood: A Guide
by John M. Freeman, Eileen P.G. Vining, Diana J. Pillas
Paperback: 360 pages
Publisher: Johns Hopkins University Press; 3rd edition (2002)
ISBN: 0801870518
This broad reference is for parents, teachers, researchers and health-care practitioners. A main goal of this guide is to convince parents to shift their focus from the seizure to the whole child (the bigger picture) and to dispel the mythology that epilepsy leads inevitably to future disability. The latest approaches to the diagnosis and treatment of epilepsy in childhood, including the use of the ketogenic diet as a treatment for children who either do not respond to traditional drug therapy or who suffer intolerable side effects from medications is explored. Sections addressing routine health care for children with epilepsy, complementary and alternative therapies, progress made in the evaluation for surgery, insurance issues and additional resources are also included.
Ketogenic Diet Therapies: For Epilepsy and Other Conditions, 7th Edition
by Eric H. Kossoff, Zahava Turner, Mackenzie C. Cervenka, Bobbie J. Barron
Paperback: 360 pages
Publisher: Demos Health; 7th edition (2020)
ISBN: 0826149588
This patient education reference describes the use of the ketogenic diet to control epilepsy in children. Written for health-care professionals treating children with epilepsy and their parents but can also be used by parents and patients.
Handbook of Epilepsy
by Thomas R. Browne, MD, Gregory L. Holmes, MD
Paperback: 288 pages
Publisher: Wolters Kluwer; 4th edition (2008)
ISBN: 0781743524
This handbook offers a clinically relevant guide on how to most effectively manage the various types of epilepsy in adults and children. Covering all major topics, the book gives extensive explanations on classifications of the epilepsies, describes the latest surgical procedures, covers the latest on the many new drugs in this area, and much more. Drs. Browne and Holmes provide their expertise on adult and pediatric epilepsy in a concise, easy-to-use format.
Epilepsy in Children: What Every Parent Needs to Know
by Erin Conway, Orrin Devinsky and Courtney Schnabel Glick
Paperback: 320 pages
Publisher: Demos Health; 1st edition (2015)
ISBN: 1936303787
This guide will help parents and caregivers manage their child’s life with epilepsy. It includes information and advice to help parents respond to seizures safely and effectively and understand treatment options.
Emotional and behavrioual resources
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children
by Ross W. Greene
Paperback: 304 pages
Publisher: HarperCollins; 5th edition (2014)
ISBN: 0062270451
This book helps parents and caregivers to understand why children are experiencing challenging behavioural episodes. It also provides information to help parents and caregivers identify triggering situations, reduce or eliminate episodes by solving problems and helping children to develop coping and problem-solving skills.
Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them
by Ross W. Greene
Paperback: 336 pages
Publisher: Scribner (2014)
ISBN: 1501101498
This book provides approaches for parents and teachers to work together to help behaviourally challenged students. It includes tools to identify problems, guidance on improving interactions with children and information on planning and collaboration amongst teachers, parents and students.
Think:Kids
Think:Kids helps to teach families, professionals and organizations approaches to helping youth with challenging behaviours. It is a program in the Department of Psychiatry at Massachusetts General Hospital.
Lives in the Balance
Lives in the Balance provides resources and supports to help caregivers of behaviourally challenging children, address the systemic issues that cause these children to fall through the cracks and promote parenting and disciplinary practices that foster the better side of human nature in all children.
Resources for coping with anxiety
Freeing Your Child from Anxiety, Revised and Updated Edition: Practical Strategies to Overcome Fears, Worries, and Phobias and Be Prepared for Life--from Toddlers to Teens
by Tamar Chansky
Paperback: 480 pages
Publisher: Harmony; updated edition (2014)
ISBN: 0804139806
This book provides tools to help children cope with worries and anxiety and take control of their fears. It also provides guidance for parents to help them understand when stress becomes an anxiety disorder and how to help prevent anxiety in children.
Anxiety Canada
Anxiety Canada provides evidence-based resources on anxiety, including services and programs.
Tamar Chansky
Dr. Tamar Chansky is a psychologist and author who provides resources on coping with anxiety and negative thinking. Her website offers blog posts and tools on these topics.
WorryWiseKids.org
This website offers information on anxiety, causes, treatments, red flags as well as resources for parents and teachers.
Books for children and teens
Lee, the Rabbit with Epilepsy (Special Needs Collection)
by Deborah M. Moss, Carol Schwartz
Reading level: Ages 4-8
Hardcover: 23 pages
Publisher: Woodbine House (1989)
ISBN: 0933149328
This beautifully illustrated full-colour tale tells the story of Lee, a young rabbit who has her first seizure during a fishing trip with her grandpa. Once home, her parents take her to the doctor, who examines her and discovers that she has epilepsy. Lee's doctor explains epilepsy in clear, reassuring terms and gives her special medicine. Once Lee's seizures are controlled, she and her family discover that she can do everything she used to do, including her favourite pastime, fishing with her grandpa.
Sometimes I Get the Wiggles: Calling All Seizure Heroes
by Andee Cooper
Reading level: Ages 6-8
Hardcover: 36 pages
Publisher: The RoadRunner Press (2016)
ISBN: 1937054225
Kannon is a little boy with a form of epilepsy that sometimes gives him the wiggles, and when that happens, just like jello, his whole body jiggles. Kannon would very much like to go to school with everyone else his age, but he worries his condition might scare the other children away. After much thought, he comes up with an idea to enlist and train all of his classmates as Seizure Heroes as a way of helping his teacher and his fellow students see him through each school day. Based on a true story and written by Kannon's mother.
Mommy I Feel Funny! A Child’s Experience with Epilepsy
by Danielle M Rocheford
Reading Level: Grades 3-7
Paperback: 40 pages
Publisher: Green Swing, A Wyatt-MacKenzie Imprint (2009)
ISBN: 1932279539
Based on a true story MOMMY, I FEEL FUNNY! introduces the reader to Nel, a little girl who is diagnosed with epilepsy at an early age. The story takes you through the days immediately following Nel's first seizure. Suddenly, Nel and her family are faced with thoughts, fears and emotions that come hand-in-hand with the discovery and acceptance of epilepsy.
Becky the Brave: A Story About Epilepsy
by Laurie Lears, Gail Piazza
Reading level: Ages 4-5
Library Binding: 32 pages
Publisher: Albert Whitman & Company (2002)
ISBN: 080750601X
This story corrects misconceptions about epilepsy. In Sarah’s eyes, her older sister Becky is brave even during her occasional epileptic seizures. Becky confides to Sarah that although her teacher and school nurse know about her condition, she has not told her new classmates and worries she will have a seizure in school. When her fears are realized, Sarah comes to Becky’s rescue, recognizing her own bravery.
Taking Seizure Disorders to School: A Story About Epilepsy
by Kim Gosselin
Reading level: Ages 4-8
Paperback: 32 pages
Publisher: Jayjo Books; 2nd edition (2002)
ISBN: 1891383167
This children's book dispels the myths and fears surrounding epilepsy in a positive, upbeat, and entertaining style and explains seizures in an understandable fashion.
The Great Katie Kate Explains Epilepsy
by Maitland DeLand
Reading level: Ages 5-8
Paperback: 32 pages
Publisher: Greenleaf Book Group Press (2014)
ISBN: 1626340072
When Jimmy is diagnosed with epilepsy, he starts to worry. What is happening to my body? Am I ok? Does this mean I’m different from other kids?
Jimmy and the other young patients in the neurologist’s office get a visit from the Great Katie Kate, a spunky redheaded superhero who appears when kids get worried. Katie Kate takes the children on a medical adventure to learn about the various forms of epileptic seizures and treatments. Along the way, they meet the Worry Wombat, a creature that appears when worries loom large. As Jimmy and his new friends to ask questions about their condition and its triggers, they make the Worry Wombat disappear!
This superhero saga provides an entertaining and indispensable tool for parents and medical professionals who are seeking a positive way to help young epilepsy patients understand their condition and deal with their fears.
I Have Epilepsy. It Doesn’t Have Me
by Jamie Bacigalupo and Judy Bacigalupo
Reading level: Ages 7 to 10
Library Binding: 28 pages
Publisher: CreateSpace Independent Publishing Platform (2012)
ISBN: 1475165846
Follow eight-year-old Jamie on her journey from being diagnosed with Benign Rolandic Epilepsy at age five. Jamie persevered and overcame her epilepsy and went on to help other children by starting her own non-profit that provides gifts to children in over five states.
Epilepsy: The Ultimate Teen Guide
by Kathlyn Gay, Sean McGarrahan
Reading level: Young Adult
Hardcover: 144 pages
Publisher: Rowman & Littlefield (2003)
ISBN: 0810843390
This guide provides an excellent look at epilepsy and its impact on diagnosed teens, their families, friends and communities. The authors set the groundwork with an explanation of the various forms the disease takes and give basic information on the brain. McGarrahan, who has had epilepsy since age 16, describes his own experiences, lending the book a personal perspective. Methods used to diagnose and treat epilepsy are thoroughly covered. Considerable space is given to the many issues of the illness that affect teens, including school and jobs, driving, dating and sports. The need for them to cope with the mass of misinformation surrounding seizure disorders is addressed. In addition, the text examines the health issues specific to girls: hormonal changes, fertility and pregnancy. The final chapter looks at research and the future possibility of a cure.
