A seizure is an abnormal movement or behavior caused by unusual electrical activity in the brain. In contrast, epilepsy is a group of related disorders marked by recurring seizures over a long period of time, with no identifiable short-term cause. Although seizures are a symptom of epilepsy, not all people who have seizures have epilepsy. These resources can help you and your child learn more about seizures and epilepsy.
Books for Kids
Dotty the Dalmatian has Epilepsy
From the Dr. Wellbrook Collection; Tim Peters & Company. 800.543.2230.
Lee, the Rabbit with Epilepsy (intended for ages 3-6)
Deborah M. Moss; Rockville, MD; Woodbine House, 1989. 800.843.7323 or 866.330.2718. (Epilepsy Foundation)
My Friend Matty: A Story About Living with Epilepsy
Debra and Richard Siravo; The Drummond Publishing Group, 866.330.2718
Taking Seizure Disorders to School: A Story About Epilepsy
Kim Gosslin; Jay Jo Books, 1996. 866.330.2718.
Books for Parents
The Brainstorms Family: Epilepsy on Our Terms
Steven C. Schacter, MD, Georgia D. Montouris, MD, John M. Pellock, MD; Raven Press, 1996. 800.332.1000 or 866.330.2718.
Brothers and Sisters Just for You: A Guide for Families of Children with Epilepsy
Epilepsy Foundation; Landover, MD, 1992. 866.330.2718.
Children with Disabilities: Understanding Sibling Issues
L. Ambler, NICHCY News Digest. Number 11, 1-12, Updated 1994. 800.695.0285. Available online at nichcy.org/outprint.asp
The Ketogenic Diet: ATreatment for Children and Others with Epilepsy, Fourth Edition
Dr. John Freeman, Eric Kossoff, MD, Millicent Kelley, RD, LD & Jennifer Freeman; New York: Demos Medical Publishing, 2007. 800.532.8663.
Respite Care: A Guide for Families
Epilepsy Foundation; Landover, MD. 866.330.2718.
Seizures and Epilepsy in Childhood: A Guide for Parents
John M. Freeman, MD, Eileen P.G. Vining, MD, and Diana J. Pilas; Baltimore, MD: The John Hopkins University Press, 1990. 800.537.5487
Seizure Training for School Personnel Toolkit
Epilepsy Foundation; Landover, MD. 866.330.2718
Your Child and Epilepsy: A Guide to Living Well
Robert J. Gumnit, MD; New York: Demos Medical Publishing, 1995. 800.532.8663.
Available through the Epilepsy Foundation; Landover, MD, 866.330.2718.
Seizures in School: Understanding and Assisting Students with Epilepsy, DVD
Sleepless Nights and Small World, DVD
Useful Websites and Organizations
The Charlie Foundation to Help Cure Pediatric Epilepsy was founded in 1994 after Charlie Abrahams was cured of his epilepsy by the ketogenic diet at Johns Hopkins Hospital. The foundation has been instrumental in providing support to families looking for resources on the ketogenic diet.
Matthew’s friends is a website that provides families resources under various sections: educational materials about various forms of diet; nuts and bolts of everyday aspects of the ketogenic diet; a family forum to discuss concerns and elicit responses from other ketogenic diet families.
This website helps patients, families, and dietitians calculate and plan a diet. There are several recipes available on the site.
Yahoo group- for Ketogenic diet
This is an online support group with members from all over the world. This is a forum where patients/families on the ketogenic diet exchange their ideas and attempt to offer solutions to day-to-day problems in continuing ketogenic diet. (The group moderator has to accept your request to join the group.)
Sources for this Resource List
Epilepsy Foundation: www.epilepsyfoundation.org
National Information Center for Children and Youth with Disabilities: www.nichcy.org
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This information is provided by Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 1/3/2014...#6997