Epilepsy resources and supportEEpilepsy resources and supportEpilepsy resources and supportEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemSupport, services and resourcesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW00415.000000000000Flat ContentHealth A-Z<p>A detailed list of epilepsy organizations, research and books. A wide range of topics is covered, including guides for families and the ketogenic diet.</p><p>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.</p><h2>Key points</h2> <ul><li>There are several organizations and resources available across Canada, as well as books for parents and teens, to help them manage living with epilepsy.</li></ul>
Ressources et soutien liés à l’épilepsieRRessources et soutien liés à l’épilepsieEpilepsy resources and supportFrenchNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemConditions and diseasesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW000Flat ContentHealth A-Z<p>Une liste détaillée d’organismes, d’études et d’ouvrages touchant le domaine de l’épilepsie est présentée. Un large éventail de sujets y est couvert, y compris des guides pour les familles et le régime cétogène.</p><p>Un grand nombre d’organismes et de ressources gouvernementales existent partout au Canada pour aider les parents et les enfants à mieux vivre avec l’épilepsie. Plusieurs ouvrages sont aussi mis à la disposition des parents et des enfants pour les aider à mieux comprendre la maladie.</p><ul><li>Un grand nombre d’organismes et de ressources existent partout au Canada ainsi que des ouvrages pour les parents et les adolescents afin de les aider à mieux vivre avec l’épilepsie.</li></ul>

 

 

Epilepsy resources and support2123.00000000000Epilepsy resources and supportEpilepsy resources and supportEEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemSupport, services and resourcesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW00415.000000000000Flat ContentHealth A-Z<p>A detailed list of epilepsy organizations, research and books. A wide range of topics is covered, including guides for families and the ketogenic diet.</p><p>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.</p><h2>Key points</h2> <ul><li>There are several organizations and resources available across Canada, as well as books for parents and teens, to help them manage living with epilepsy.</li></ul><h2>Epilepsy associations and resources</h2><h3>Epilepsy Canada</h3><p> <a href="http://www.epilepsy.ca/" target="_blank">www.epilepsy.ca</a></p><p>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. </p><h3>Canadian Epilepsy Alliance</h3><p> <a href="http://www.epilepsymatters.com/" target="_blank">www.epilepsymatters.com</a></p><p>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. </p><h3>Epilepsy Ontario</h3><p> <a href="http://www.epilepsyontario.org/" target="_blank">www.epilepsyontario.org</a></p><p>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. </p><h3>Epilepsy Association of Nova Scotia</h3><p> <a href="https://epilepsyns.org//" target="_blank">https://epilepsyns.org/</a> </p><p>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. </p><h3>Epilepsy Toronto</h3><p> <a href="http://www.epilepsytoronto.org/" target="_blank">www.epilepsytoronto.org </a></p><p>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.</p><h3>Northeast Regional Epilepsy Group (NEREG)</h3><p> <a href="http://www.epilepsylifelinks.com/">www.epilepsylifelinks.com</a></p><p>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. </p><h3>SUDEP Aware</h3><p> <a href="http://www.sudepaware.org/" target="_blank">www.sudepaware.org</a></p><p>SUDEP Aware promotes knowledge and understanding of Sudden Unexplained Death in Epilepsy (SUDEP) through support, education, and collaboration.</p><h2>Epilepsy research</h2><h3>International League Against Epilepsy</h3><p> <a href="http://www.ilae-epilepsy.org/" target="_blank">www.ilae-epilepsy.org</a> </p><p>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. </p><h2>Government and community resources (Ontario and Canada)</h2><h3>Community Care Access Centres (CCACs)</h3><p> <a href="http://www.ccac-ont.ca/" target="_blank">www.ccac-ont.ca</a> </p><p>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: </p><ul><li>personal care</li><li>nursing</li><li>physical therapy</li><li>occupational therapy</li><li>speech and language therapy</li><li>respite care</li><li>transportation</li></ul><p>Some of these services may be paid for by the Ministry, while others may be the responsibility of the family.</p><h3>RespiteServices.com</h3><p> <a href="http://www.respiteservices.com/" target="_blank">www.respiteservices.com</a> </p><p>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. </p><p>There are two types of respite care, one in your home and the other outside your home. Respiteservices.com offers two programs:</p><ul><li>The respite program helps to find respite care for your child.</li><li>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. </li></ul><h3>Reach for the Rainbow</h3><p> <a href="http://www.reachfortherainbow.ca/" target="_blank">www.reachfortherainbow.ca </a></p><p>Reach for the Rainbow is an organization that offers integrated summer camp opportunities across Ontario for children and youth with special needs. </p><h3>SickKids Epilepsy Classroom</h3><p> <a href="http://www.sickkids.ca/patient-family-resources/epilepsy-classroom/index.html" target="_blank">http://www.sickkids.ca/patient-family-resources/epilepsy-classroom/index.html</a></p><p>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. </p><h3>Canadian MedicAlert Foundation</h3><p> <a href="http://www.nochildwithout.ca/" target="_blank">www.nochildwithout.ca</a></p><p>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.</p><h3>ARCH</h3><p> <a href="http://www.archdisabilitylaw.ca/" target="_blank">www.archdisabilitylaw.ca</a></p><p>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.</p><h3>"Special Needs" Planning Group</h3><p> <a href="http://www.specialneedsplanning.ca/" target="_blank">www.specialneedsplanning.ca</a></p><p>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. </p><h2>Books for adults</h2><h3>Growing Up With Epilepsy: A Practical Guide for Parents</h3><p>by Lynn Bennett Blackburn<br>Paperback: 161 pages<br>Publisher: Demos Medical Publishing (2003)<br>ISBN: 1888799749</p><p>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. </p><h3>Seizures and Epilepsy in Childhood: A Guide</h3><p>by John M. Freeman, Eileen P.G. Vining, Diana J. Pillas<br>Paperback: 360 pages<br>Publisher: Johns Hopkins University Press; 3rd edition (2002)<br>ISBN: 0801870518</p><p>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. </p><h3>The Ketogenic Diet: A Treatment for Epilepsy, 3rd Edition</h3><p>by John Mark Freeman, Jennifer B. Freeman, Millicent T. Kelly, Jim Abrahams<br>Paperback: 224 pages<br>Publisher: Demos Medical Publishing; 3rd edition (2000)<br>ISBN: 1888799390</p><p>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. </p><h3>Handbook of Epilepsy</h3><p>by Thomas R. Browne, MD, Gregory L. Holmes, MD<br>Paperback: 272 pages<br>Publisher: Lippincott Williams & Wilkins; 3rd edition (2003)<br>ISBN: 0781743524</p><p>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. </p><h3>Epilepsy: Patient and Family Guide</h3><p>by Orrin Devinsky, MD<br>Paperback: 434 pages<br>Publisher: F. A. Davis Company; 2nd edition (2001)<br>ISBN: 080360498X</p><p>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. </p><h3>Books by Ross Greene, PhD on the Collaborative Problem Solving method</h3><p>The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children<br>Publisher: HarperCollins (1998, last updated 2010)</p><p>With J. Stuart Ablon, PhD: Treating Explosive Kids: The Collaborative Problem-Solving Approach<br>Publisher: The Guilford Press (2006)</p><p>Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them. <br>Publisher: Scribner (2008, last updated 2009)</p><h2>Books for children and teens</h2><h3>Lee, the Rabbit With Epilepsy (Special Needs Collection)</h3><p>by Deborah M. Moss, Carol Schwartz<br>Reading level: Ages 4-8<br>Hardcover: 23 pages<br>Publisher: Woodbine House (1989)<br>ISBN: 0933149328</p><p>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. </p><h3>Moments That Disappear: Children Living With Epilepsy (Don't Turn Away)</h3><p>by Thomas Bergman<br>Reading level: Ages 9-12<br>Library Binding: 48 pages<br>Publisher: Gareth Stevens Publishing; North American edition (1992)<br>ISBN: 0836807391 </p><p>This book describes the medical problems and daily routine of a twelve-year-old Swedish boy with epilepsy.</p><h3>Becky the Brave: A Story About Epilepsy</h3><p>by Laurie Lears, Gail Piazza<br>Reading level: Baby-Preschool<br>Library Binding: 32 pages<br>Publisher: Albert Whitman & Company (2002)<br>ISBN: 080750601X</p><p>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. </p><h3>Taking Seizure Disorders to School: A Story About Epilepsy</h3><p>by Kim Gosselin<br>Reading level: Ages 4-8<br>Paperback: 32 pages<br>Publisher: Jayjo Books; 2nd edition (2002)<br>ISBN: 1891383167</p><p>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. </p><h3>I Have Epilepsy</h3><p>by Althea, Nicola Spoor<br>Reading level: Ages 4-8<br>Paperback<br>Publisher: HarperCollins Children’s Books (1993)<br>ISBN: 0851228186</p><p>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. </p><h3>Epilepsy: The Ultimate Teen Guide</h3><p>by Kathlyn Gay, Sean McGarrahan<br>Reading level: Young Adult<br>Hardcover: 144 pages<br>Publisher: Rowman & Littlefield (2003)<br>ISBN: 0810843390 </p><p>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. ​​​</p>Epilepsy resources and support

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