| Epilepsy resources and support | 2123.00000000000 | Epilepsy resources and support | Epilepsy resources and support | E | English | Neurology | Child (0-12 years);Teen (13-18 years) | Brain | Nervous system | Support, services and resources | Caregivers
Adult (19+)
Educators | NA | | 2021-02-18T05:00:00Z | | | | | | 13.2000000000000 | 33.2000000000000 | 1986.00000000000 | | Flat Content | Health 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 checklists</h2><p>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:</p><ul><li>
<a target="_blank" href="https://assets.aboutkidshealth.ca/AKHAssets/PDF_Parents_Checklist.pdf">Epilepsy Checklist – What do you know about your child’s epilepsy?</a></li><li>
<a target="_blank" href="https://assets.aboutkidshealth.ca/AKHAssets/PDF_My_Childs_Care_Team.pdf">My child's epilepsy care team</a></li><li>
<a target="_blank" href="https://assets.aboutkidshealth.ca/AKHAssets/PDF_Recording_Seizures.pdf">Describing and recording seizures</a></li></ul><p>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:</p><ul><li>
<a target="_blank" href="https://assets.aboutkidshealth.ca/AKHAssets/PDF_Teens_Checklist.pdf">Epilepsy Checklist for Teens – What do you know about your epilepsy?</a></li><li>
<a target="_blank" href="https://assets.aboutkidshealth.ca/AKHAssets/PDF_Care_Team_Teens.pdf">My epilepsy care team</a></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="https://www.canadianepilepsyalliance.org/" target="_blank">www.canadianepilepsyalliance.org</a></p><p>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. </p><h3>Epilepsy Ontario</h3><p>
<a href="http://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>Purple Day</h3><p>
<a href="http://www.purpleday.org/" target="_blank">www.purpleday.org/</a> </p><p>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. </p><h3>Epilepsy Toronto</h3><p>
<a href="https://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>Epilepsy South Central Ontario</h3><p>
<a href="https://epilepsysco.org/">www.epilepsysco.org/</a></p><p>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.</p><h3>SUDEP Aware</h3><p>
<a href="https://www.sudep.news/" target="_blank">www.sudep.news</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="https://www.ilae.org/" target="_blank">www.ilae.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,
<em>Epilepsia</em>, and a newsletter,
<em>Epigraph</em>. </p><h2>Government and community resources (Ontario and Canada)</h2><h3>Local Health Integration Networks (LHINs)</h3><p>
<a href="http://www.lhins.on.ca/" target="_blank">www.lhins.on.ca</a> </p><p>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: </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 of Health and Long-Term Care, while others may be the responsibility of the family.</p><h3>RespiteServices.com</h3><p>
<a href="https://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>SickKids Epilepsy Classroom</h3><p>
<a href="https://www.sickkids.ca/en/learning/patient-family-education/epilepsy-classroom/" target="_blank">www.sickkids.ca/en/learning/patient-family-education/epilepsy-classroom/</a></p><p>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. </p><h3>Canadian MedicAlert Foundation</h3><p>
<a href="https://www.medicalert.ca/no-child-without" target="_blank">www.medicalert.ca/no-child-without</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 website to determine if your child’s school is registered.</p><h3>ARCH Disability Law Centre</h3><p>
<a href="https://archdisabilitylaw.ca/" target="_blank">www.archdisabilitylaw.ca</a></p><p>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. </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 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</p><p>Paperback: 161 pages</p><p>Publisher: Demos Medical Publishing (2003)</p><p>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</p><p>Paperback: 360 pages</p><p>Publisher: Johns Hopkins University Press; 3rd edition (2002)</p><p>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>Ketogenic Diet Therapies: For Epilepsy and Other Conditions, 7th Edition</h3><p>by Eric H. Kossoff, Zahava Turner, Mackenzie C. Cervenka, Bobbie J. Barron</p><p>Paperback: 360 pages</p><p>Publisher: Demos Health; 7th edition (2020)</p><p>ISBN: 0826149588</p><p>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. </p><h3>Handbook of Epilepsy</h3><p>by Thomas R. Browne, MD, Gregory L. Holmes, MD</p><p>Paperback: 288 pages</p><p>Publisher: Wolters Kluwer; 4th edition (2008)</p><p>ISBN: 0781743524</p><p>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. </p><h3>Epilepsy in Children: What Every Parent Needs to Know</h3><p>by Erin Conway, Orrin Devinsky and Courtney Schnabel Glick</p><p>Paperback: 320 pages</p><p>Publisher: Demos Health; 1st edition (2015)</p><p>ISBN: 1936303787</p><p>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. </p><h2>Emotional and behavrioual resources</h2><h3>The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children</h3><p>by Ross W. Greene</p><p>Paperback: 304 pages</p><p>Publisher: HarperCollins; 5th edition (2014)</p><p>ISBN: 0062270451</p><p>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.</p><h3>Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them</h3><p>by Ross W. Greene</p><p>Paperback: 336 pages</p><p>Publisher: Scribner (2014)</p><p>ISBN: 1501101498</p><p>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.</p><h3>Think:Kids</h3><p>
<a href="http://www.thinkkids.org/">www.thinkkids.org</a></p><p>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.</p><h3>Lives in the Balance</h3>
<a href="https://www.livesinthebalance.org/">www.livesinthebalance.org</a>
<p></p><p>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.</p><h2>Resources for coping with anxiety
<p></p></h2><h3>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 </h3><p></p><p>by Tamar Chansky </p> Paperback: 480 pages
<p></p><p>Publisher: Harmony; updated edition (2014)</p><p>ISBN: 0804139806</p><p>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.</p><h3>Anxiety Canada</h3><p>
<a href="https://www.anxietycanada.com/">www.anxietycanada.com</a></p><p>Anxiety Canada provides evidence-based resources on anxiety, including services and programs.</p><h3>Tamar Chansky</h3><p>
<a href="http://tamarchansky.com/">www.tamarchansky.com</a></p><p>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.</p><h3>WorryWiseKids.org</h3><p>
<a href="http://www.worrywisekids.org/">www.worrywisekids.org</a></p><p>This website offers information on anxiety, causes, treatments, red flags as well as resources for parents and teachers.</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</p><p>Reading level: Ages 4-8</p><p>Hardcover: 23 pages</p><p>Publisher: Woodbine House (1989)</p><p>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>Sometimes I Get the Wiggles: Calling All Seizure Heroes</h3><p>by Andee Cooper</p><p>Reading level: Ages 6-8</p><p>Hardcover: 36 pages</p><p>Publisher: The RoadRunner Press (2016)</p><p>ISBN: 1937054225</p><p>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.</p><h3>Mommy I Feel Funny! A Child’s Experience with Epilepsy</h3><p>by Danielle M Rocheford</p><p>Reading Level: Grades 3-7</p><p>Paperback: 40 pages</p><p>Publisher: Green Swing, A Wyatt-MacKenzie Imprint (2009)</p><p>ISBN: 1932279539</p><p>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.</p><h3>Becky the Brave: A Story About Epilepsy</h3><p>by Laurie Lears, Gail Piazza</p><p>Reading level: Ages 4-5 </p><p>Library Binding: 32 pages</p><p>Publisher: Albert Whitman & Company (2002)</p><p>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</p><p>Reading level: Ages 4-8</p><p>Paperback: 32 pages</p><p>Publisher: Jayjo Books; 2nd edition (2002)</p><p>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>The Great Katie Kate Explains Epilepsy</h3><p>by Maitland DeLand</p><p>Reading level: Ages 5-8</p><p>Paperback: 32 pages</p><p>Publisher: Greenleaf Book Group Press (2014)</p><p>ISBN: 1626340072</p><p>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?</p><p>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!</p><p>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. </p><h3>I Have Epilepsy. It Doesn’t Have Me </h3><p>by Jamie Bacigalupo and Judy Bacigalupo</p><p>Reading level: Ages 7 to 10</p><p>Library Binding: 28 pages</p><p>Publisher: CreateSpace Independent Publishing Platform (2012)</p><p>ISBN: 1475165846</p><p>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.</p><h3>Epilepsy: The Ultimate Teen Guide</h3><p>by Kathlyn Gay, Sean McGarrahan</p><p>Reading level: Young Adult</p><p>Hardcover: 144 pages</p><p>Publisher: Rowman & Littlefield (2003)</p><p>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 | | False | | | | | | | | |
