Epilepsy associations and resources
Epilepsy Canada
www.epilepsy.ca
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.epilepsymatters.com
The Canadian Epilepsy Alliance is a gateway to the Canadian epilepsy community. This site features national epilepsy news and priorities, profiles of everyday Canadians living with seizures, and links to grassroots service organizations for people with epilepsy and their families from coast to coast. Learn about epilepsy and seizure disorders and have your say on the leading issues of the day with this resource.
Epilepsy Ontario
www.epilepsyontario.org
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.
Epilepsy Association of Nova Scotia
www.epilepsyns.com
The Epilepsy Association of Nova Scotia is a province-wide charitable organization with an office in Halifax and community action groups around the province. The association serves adults and children with epilepsy, their families, friends, and the community. The organization seeks to promote a better understanding of epilepsy through public education and awareness programs, advocacy, and research.
Epilepsy Toronto
www.epilepsytoronto.org
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.
Northeast Regional Epilepsy Group (NEREG)
Northeast Regional Epilepsy Group (NEREG) is a multi-site epilepsy practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults with epilepsy.
SUDEP Aware
www.sudepaware.org
SUDEP Aware promotes knowledge and understanding of Sudden Unexplained Death in Epilepsy (SUDEP) through support, education, and collaboration.
Epilepsy research
International League Against Epilepsy
www.ilae-epilepsy.org
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)
Community Care Access Centres (CCACs)
www.ccac-ont.ca
Community Care Access Centres 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, while others may be the responsibility of the family.
RespiteServices.com
www.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.
Kids on the Block
www.kotb.com
Kids on the Block is an organization that uses puppetry to teach children about disabilities, medical conditions, and other differences. There are many different chapters of Kids on the Block worldwide, including several in Ontario and British Columbia.
Reach for the Rainbow
www.reachfortherainbow.ca
Reach for the Rainbow is an organization that offers integrated summer camp opportunities across Ontario for children and youth with special needs.
SickKids Epilepsy Classroom
www.sickkids.ca/programsandservices/epilepsy-classroom
The SickKids Epilepsy Classroom caters to the individual learning needs of children who have intractable epilepsy. It is jointly run by the Toronto District School Board and the Neurosciences Program at SickKids.
Canadian MedicAlert Foundation
www.nochildwithout.ca
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 1-866-679-3220 or visit the web site to determine if your child’s school is registered.
ARCH
www.archdisabilitylaw.ca
ARCH is a legal resource centre for people with disabilities in Ontario. They provide advice, referrals, and legal representation to ensure the equality of people with disabilities. They also have a library and resource centre.
"Special Needs" Planning Group
www.specialneedsplanning.ca
This organization is made up of parents of children with disabilities. They offer, free of charge, 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 handicap or retardation. 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.
The Ketogenic Diet: A Treatment for Epilepsy, 3rd Edition
by John Mark Freeman, Jennifer B. Freeman, Millicent T. Kelly, Jim Abrahams
Paperback: 224 pages
Publisher: Demos Medical Publishing; 3rd edition (2000)
ISBN: 1888799390
This patient education reference describes the use of the ketogenic diet to control epilepsy in children. Intended for the practitioner treating children with epilepsy and their parents.
Handbook of Epilepsy
by Thomas R. Browne, MD, Gregory L. Holmes, MD
Paperback: 272 pages
Publisher: Lippincott Williams & Wilkins; 3rd edition (2003)
ISBN: 0781743524
This new 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: Patient and Family Guide
by Orrin Devinsky, MD
Paperback: 434 pages
Publisher: F. A. Davis Company; 2nd edition (2001)
ISBN: 080360498X
This guide for adults with epilepsy and for parents of children with the disorder explains the nature and diversity of seizures, the risks and benefits of the various anti-epileptic drugs, and medical and surgical therapies. There is practical discussion of psychological and social implications, employment issues, and legal rights. The guide features a glossary of terms and drug names and a list of resource organizations. The inside covers include color photos of medications. This second edition reflects advances in the field since 1994.
Books by Ross Greene, PhD on the Collaborative Problem Solving method
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children
Publisher: HarperCollins (1998, last updated 2010)
With J. Stuart Ablon, PhD: Treating Explosive Kids: The Collaborative Problem-Solving Approach
Publisher: The Guilford Press (2006)
Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them.
Publisher: Scribner (2008, last updated 2009)
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.
Moments That Disappear: Children Living With Epilepsy (Don't Turn Away)
by Thomas Bergman
Reading level: Ages 9-12
Library Binding: 48 pages
Publisher: Gareth Stevens Publishing; North American edition (1992)
ISBN: 0836807391
This book describes the medical problems and daily routine of a twelve-year-old Swedish boy with epilepsy.
Becky the Brave: A Story About Epilepsy
by Laurie Lears, Gail Piazza
Reading level: Baby-Preschool
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.
I Have Epilepsy
by Althea, Nicola Spoor
Reading level: Ages 4-8
Paperback
Publisher: HarperCollins Children’s Books (1993)
ISBN: 0851228186
This book describes what it is like to have epilepsy. It aims to help people understand the nature of this widespread and potentially frightening illness and to show that children with epilepsy can lead normal lives.
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.