You May Not Know ... A Parent's Perspective on Seizure Disorders
Did you know there are many different types of seizures? Did you know that lacking sleep or food can trigger seizures? Did you know there are special diets that might help prevent seizures from happening in some people? None of this we knew when our son had his first seizure. We had no family history of seizures or even knew anyone with a seizure disorder. We didn't know where to turn or what was exactly happening to our son the first time his body shook uncontrollably and his eyes rolled back. I remember how hopeless I felt. When doctors at Vanderbilt made the diagnosis, our family wanted to know as much as we could about this condition. We read every article and got as much advice we could about seizures. We just wanted to help our son and prevent more seizures from happening.
At the time, we searched for information everywhere. Now, this Seizure Disorder Health Topic is filled with books, videos, CDs, periodicals and useful websites to inform you of everything there is to know about seizures. All the resources are available at the Family Resource Center. Read them carefully. Remember there are many type of seizures. There are some ways to prevent seizures--find out which one works best for your child.
Michelle Wilson
Family Representative
Mother of Austin
A Doctor's Introduction
A seizure is a temporary electrical problem in the brain causing involuntary movements or paralysis, sensations, change in consciousness, or combinations of these. There are many mimics of seizures such as fainting, migraine headache, tics, pseudoseizures or reflux. Many times it will require a specialized doctor, a neurologist, to make a diagnosis. Seizures can be caused by many different things, but in children it is often due to their genetic make-up and not related to any other illness. Medical studies have indicated that it is best to stop seizures from occurring. Most commonly, prevention of seizures will require a medication; but in rare circumstances, surgery, a specific diet, or an implanted device may be used.
Deron Sharpe, MD
Vanderbilt University Medical Center
Team Reviewers and Monitors
Deron Sharpe, MD
Vanderbilt University Medical Center
Harold Vann, MD
Community Physician
Clarksville, TN
Michelle Wilson
Family Representative
Related Vanderbilt Links
Pediatric Neurology Clinics Our pediatric neurology faculty offer consultation services at the Vanderbilt Children’s Hospital and Clinics by evaluating and working with patients and families who are dealing with various illnesses, disorders, and conditions that are often linked to the nervous system, including the brain.
Pediatric Neurosurgical Services Pediatric Neurosurgical Services at Vanderbilt Children’s Hospital is comprised by a multi-disciplinary team that offers numerous clinical programs and provides treatment for all types of neurological conditions.
Brothers and Sisters: A Guide for Families of Children with Epilepsy By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Category: Coping
This guide and workbook is split for two audiences: for the adult members of a family of a child with epilepsy, and for the siblings of that child. Topics for starting family discussions include feelings, responsibilities, adjustments, and changing relationships. The book includes an activity section and the part for siblings is divided for three age categories.
Children with Seizures By Martin L. Kutscher London & Philadelpia: Jessica Kingsley Publishers, 2006. Library of Congress Number: RJ496.E6K87 2006 Category: Specific Chronic Health Condition
The author dispels many of the myths of epilepsy and provides a wonderful review of all aspects of the disorder. Teachers, parents, siblings, and friends of children with epilepsy will benefit greatly from this book.
Does Your Child Have Epilepsy? By James E. Jan, Robert G. Ziegler, Giuseppe Erba Austin, TX: Pro-Ed, Inc., 1991. Library of Congress Number: RJ496.E6 J27 1991 Category: Specific Chronic Health Condition
This book provides parents with a comprehensive look at epilepsy, its diagnosis, treatment, and how to cope with the condition. It explains what epilepsy is, what it means to have a child with epilepsy, the tests that occur, treatment procedures and medication, and what to do during a convulsion. This book also dedicates chapters to dealing with emotions of the child and family members, stages of child development from birth to young adulthood, school and social issues, work and employment, as well as specifics on multi-handicapped children.
Epilepsy and the Family By Richard Lechtenberg, M.D. Cambridge, MA: Harvard University Press, 1999. Pages: 264 Library of Congress Number: RC372.L38 1984 Category: Specific Chronic Health Condition
Dr. Lechtenberg describes seizure disorders, their causes and treatments with an emphasis on how the disorder effects family life.
Issues and Answers: Exploring Your Possibilities By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Library of Congress Number: RJ496.E94 1992 Category: Specific Chronic Health Condition
This guide is intended for young people ages 14-21 who have epilepsy and can be used individually or in discussion groups. This book is divided into eight chapters that define epilepsy and how epilepsy occurs, give information on managing seizures, coping, family issues, friends and social situations, school issues, and becoming independent.
Ketogenic Cookbook, The By Dennis Brake, Cynthia Brake Gilman, CT: Pennycorner Press, 1997. Library of Congress Number: RJ496.E6 B685 1997 Category: Nutrition/Weight Management
Developed by culinary graduates who have a daughter on the ketogenic diet, this cookbook provides set menu options that are ketogenically balanced, flexible, AND tasty. This book also provides tips for traveling and creative ideas, lists of equipment and supplies to prepare this food, and suggestions for the holidays.
Ketogenic Diet: A Treatment for Epilepsy, The By John M. Freeman, M.D., Jennifer B. Freeman, Milliecent T. Kelly, R.D., L.D. New York, NY: Demos Publishing, 2000. Pages: 236 Library of Congress Number: RJ496.E6 F69 2000; C:4 Category: Nutrition/Weight Management
This detailed book on the Ketogenic diet is written by two pioneers in the field: a doctor from Johns Hopkins and the staff dietician there who helped reinstitute the use of the diet. Dr. Freeman gives an overview of the diet, and explains the start-up process and fine-tuning in Sections I and II. Section III helps families calculate the diet and its use for infants, while sections IV and V offer meal plans and new research developments, respectively. An extensive section of appendices contains information on medication – including the helpline numbers to major pharmaceutical companies, references and a food database to accompany the diet.
Me and My World: An Educational Program about Epilepsy for Children and their Families: Program Implementation and Discussion Leader's Guide Landover, MD: The Epilepsy Foundation, 1981. Category: Educational and Community Issues
This book tells the stories of different people who live with epilepsy, some because they have it themselves, some because someone in their family does. The information is straightforward and simple, and the different perspectives – from a brother, a daughter and a little boy with epilepsy, do a lot to address the concerns of young readers.
Partial Seizure Disorders: Help for Patients and Families By Mitzi Waltz Sebastopol, CA: O'Reilly & Associates, Inc., 2001. Library of Congress Number: RC372.W35 2001 C:3 Category: Specific Chronic Health Condition
This book provides a no-nonsense approach to partial seizure disorders based on the latest medical research and personal accounts of people with this disorder. Presented in a easy-to-understand format, this book can help patients and families obtain complete diagnoses, understand the nature of the disorder and possible medical interventions including side-effects, and offer tips on how to cope with developmental issues for children (e.g. driving, employment, school, etc.). The book also contains information on advocacy and support organizations, books, articles, and online resources.
Respite Care Time Out for Families: Epilepsy and Respite Care By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Library of Congress Number: RC372.T565 1992 Category: Coping
Developed by the Epilepsy Foundation of America in collaboration with many families and organizations, this book can be used as a guide for families in discovering the advantages and disadvantages of respite care for a family member with a seizure disorder. Topics also include an explanation of the types of respite care, training that respite care workers should have, evaluation of respite care, and information resources.
School Planning: A Guide for Parents of Children with Seizure Disorders By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1994. Category: Educational and Community Issues
This book discusses issues relevant to schoolchildren with seizure disorders. Sections on seizures and learning difficulties, special education options, educational rights by law, designing an IEP, and working with a child’s school are included. Appendices include information and additional resources, including guidelines and administrative listings.
Speaking Out: Partners in Advocacy Understanding the Process By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Library of Congress Number: RC372.P345 1992 Category: Professional Relationships/Family
This guide is the first in a series about advocacy for children with epilepsy. The book discusses what it means to be an advocate, reasons for being an advocate and skills needed, types of advocacy, and a glossary.
Your Child and Epilepsy By Robert J. Gumnit New York, NY: Demos Vermande, 1995. Library of Congress Number: RJ496.E6 G85 1995 Category: Specific Chronic Health Condition
This book contains a wealth of practical information for parents of children with epilepsy, addressing all aspects of diagnosis and management. This book also encourages children and parents to be more engaged with their health care team, and suggests strategies and tips for children to have a fulfilling and normal life.
Videos
And Life Goes On By Epilepsy Foundation of America Epilepsy Foundation of America, 1990. Length: 15 minutes Library of Congress Number: RJ496.E6 A53 1990 Category: Coping
In this video, parents discuss their struggles with their children's epilepsy. They discuss how they have dealt with their childrens' epilepsy. They discuss how they have dealt with their problems with marriage and special care for their children. Solutions are discussed and parents talk about their goals for their children. They have found ways to lead a normal life, though they daily care for their children.
Chronically Ill Children Public Broadcast Television, 2002. Length: 60 minutes Library of Congress Number: RJ380.C557 2002 Category: Specific Chronic Health Condition
An episode of "Children's Hospital", a documentary-style television program about life at Children's Memorial Hospital in Chicago. This episode focuses on a child with epilepsy, a child with a brain tumor, and children's special education needs. The details of life with issues are documented and any family dealing with these issues may benefit from this video.
Driving and Epilepsy By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1993. Length: 13 minutes Library of Congress Number: RC372.D75 1993 Category: Educational and Community Issues
This video shows the effects of having or not having a driver's license for persons with epilepsy. The video explores how it feels to depend on others for transportation and the risks of endangering others by driving with seizures. However, the video explains that people with epilepsy can drive in all states if the person is seizure free and provides information about how to stay seizure free.
First Do No Harm: The Ketogenic Diet (with Meryl Streep) The Charlie Foundation to Help Cure Pediatric Epilepsy, 1997. Length: 1 hour, 30 minutes Category: Nutrition/Weight Management
Meryl Streep stars in the story about a family that has a son with epilepsy. Following the family's struggles from diagnosis through hospitals and eventual improvement under the Ketogenic Diet, the movie shows the many difficulties with seizure disorders, and the different treatments available. Dramatic and moving, definitely for adults or perhaps older teens, the movie is geared towards presenting information on the Ketogenic Diet that is often difficult to obtain otherwise.
Introduction to the Ketogenic Diet (a Treatment for Pediatric Epilepsy), An The Charlie Foundation to Help Cure Pediatric Epilepsy, 1994. Length: 50 minutes Category: Nutrition/Weight Management
This documentary, hosted by Meryl Streep, provides information on the Ketogenic Diet. The film interviews Millicent Kelly, dietician, and Dr. John Freeman, pediatric neurologist, who are both experts from Johns Hopkins with years of experience in the Ketogenic Diet. After giving basic information regarding the diet, the documentary offers testimonials from the families of children with seizure disorders who have tried the diet. Interviews with the children themselves explain what they thought of the diet and if it helped them or not.
Just Like You and Me: Successful Living with Epilepsy By PBS Video Series Aquarius Health Care Videos/PBS, 1990. Length: 22 minutes Library of Congress Number: RJ496.E6 J87 Category: Coping
This video is very informative and intersting. It explains what seizures are and what to do when someone has a seizure. The video also shares the lives of four children with epilepsy. In three of the cases the disorder is controlled with medication and one child is still undergoing tests to determine what is effective for her. The video relays the message that it is important not to stigmatize those with epilepsy.
Primer in Calculating and Administering the Ketogenic Diet:, A The Charlie Foundation to Help Cure Pediatric Epilepsy, 1995. Length: 55 minutes Category: Specific Chronic Health Condition
Primarily for nurses and dieticians, but parents seeking this point of view may also be interested. This video has 13 well defined sections: 1)Calculating ideal weight, 2) Computing calories, 3) Ratios, 4) Dietary units, 5) Daily allowances, 6) Creating meal plans, 7) The computer, 8) Basic meal plans, 9) Fasting, 10) Parental education, 11) Food measurement, 12) Drugs, freebies, and attitudes, and 13) Final thoughts. Parents may find sections 7, 9, 11, and 12 particularly interesting. The video stresses strict obediance of the diet given in order to prevent or decrease seizures.
Rest of the Family, The 1991. Category: Specific Chronic Health Condition
Family members face great stress when a child has epilepsy, especially their brothers and sisters. This video describes how siblings feel and what parents can do to make it easier for them.
Seizure Disorders and the School I (Elementary) Epilepsy Foundation of America, 1991. Length: 15 minutes Category: Educational and Community Issues
This video for elementary educators gives instruction on how to deal with seizure disorders, a general explanation of seizures and instructs educators on how to recognize seizures and administer seizure first aid. Educators of students with seizure disorders must also be aware of the psychosocial development of the child and have concern that the child is given equal opportunit to learn. The video features physicians and teachers experienced in helping children with epilepsy adjust to school.
Seizure Disorders and the School II (Secondary) Epilepsy Foundation of America, 1991. Length: 15 minutes Category: Educational and Community Issues
This video for secondary educators gives instruction on how to deal with seizure disorders, a general explanation of seizures and instructs educators on how to recognize seizures and administer seizure first aid. Educators of students with seizure disorders must also be aware of the psychosocial development of the child and have concern that the child is given equal opportunit to learn. The video features physicians and teachers experienced in helping children with epilepsy adjust to school.
Seizure First Aid Epilepsy Foundation of America, 1992. Length: 12 minutes Category: Specific Chronic Health Condition Sub-Category: Specific Chronic Health Condition
This video instructs viewers on what to do if they encounter someone with a seizure, defines types of seizures and explains how to help someone with different types of seizures. The video gives general guidelines about seizures, examples of what to expect during a seizure, and emergency help instructions. People who have seizure disorders give insight on how to treat seizures. This video is great for anyone who wants or needs to know how to deal with seizures in a first aid situation.
Websites
Childhood Seizure eBook, The http://www.pediatricneurology.com/seizures.htm Author: Martin L. Kutscher, MD
Assistant Clinical Professor of Pediatrics and Neurology,
New York Medical College, Valhalla, New York.
Pediatric Neurological Associates, White Plains, New York
and
Marissa A. Broadley
Graduate Student, School of Public Health
New York Medical College, Valhalla, New York.
This eBook offers readers basic information on seizures and epilepsy. The website has information on types of seizures, diagnosis, treatment, first aid, and social and financial issues that affect families of children with epilepsy.
The Epilepsy Foundation website contains information, resources, materials and links to other websites. The site provides details about advocacy, individual and family services, mentoring programs, research updates, information and opportunities, and eCommunity support groups. The website also contains an interactive answer page to get advice from experts, newsletters, an online bookstore, and links to local epilepsy groups.
This website is a collection of stories from parents of children with epilepsy. The stories provide information about the child’s diagnosis, medication, treatment, personal notes from the parent and contact information (email) so that other parents can find out about different types of seizure disorders and their treatment. The stories are organized by name, age, diagnosis, treatment, and county/state.
This website has information, articles and links about epilepsy for patients, parents and physicians. The site has articles about types of seizures, diagnosis and treatments, written by the staff at the Pediatric Epilepsy Center, and other sources.
This website of the Epilepsy Ontario foundation provides visitors with a variety of information, resources, links and news. The site is part of a webring, and so contains links to other sites about seizure disorders, epilepsy and other neurological conditions. The website also contains an online version of "Sharing" - Epilepsy Ontario's quarterly publication, and information about upcoming fundraisers, camps and other events for adults and children with epilepsy and their loved ones. The website contains a basic information list, an index of different seizure types, and information about different medications for seizure disorders.
This helpful website is dedicated to those who have recently been diagnosed with a seizure disorder, or those whose seizure disorder has not responded to standard treatments. The information on the site is easy to read, thorough and current and is separated into different areas of interest. The website contains sections for kids, teens, parents, and women, and has special sections on new research and therapies, as well as general information. The website includes a resource store, a community forum, and links to other epilepsy sites in English and other languages.
This informational website is provided by doctors from Children's Healthcare of Atlanta (CHOA). The site explains epilepsy and how a diagnosis is made, what kinds of doctors are involved on the patient's team, how a surgical team identifies lesions and surgical sites and how brain surgery is performed. Information is brief and basic, but can provide parents and older teens with a clearer idea of what the surgical treatment of epilepsy entails.
Community Services
Epilepsy Foundation of America 8301 Professional Place Landover, MD 20785 Phone: 301.459.3700 Toll-Free: 800.332.1000 Website: http://www.epilepsyfoundation.org/
The Epilepsy Foundation of America offers a variety of services to families of individuals with epilepsy and educational programs to the public. Their services to families are available throught local affiliates. Many of the educational and public interest activities are handled by the national organization. Below are some of the services available from the national organization:
1) Informational and educational programs to promote and improve public understanding of epilepsy and help foster more accepting attitudes among the general public.
2) Professional education programs and resource materials are available for physicians, allied health and other health professionals, children, youth and families. The programs promote educational efforts to help identify epilepsy in children at an early age, help to improve understanding of epilepsy and support within the family unit, and to provide networking opportunities for children and young people with epilepsy, their parents and siblings.
3) Research helps identify new drugs, develop better treatments, and find solutions to the medical puzzle of epilepsy.
4) Advocacy efforts help fight discrimination, promote access to health care, job training, supported employment, vocational rehabilitation, employment, independent living programs. The Foundation aggressively seeks ways to expand funding for biomedical research in epilepsy.
5) Employment programs assist people with epilepsy in finding and keeping competitive work and promoting opportunities for employment throughout the country.
6) Information and referral toll-free service provides help on all aspects of seizure disorders to people with epilepsy, their families, and the public.
7) National Epilepsy Library is the leading source of medical and psychosocial information on epilepsy for physicians and other professionals. National Epilepsy Library services are provided free of charge.
8) A national conference is held annually for health professionals, people with epilepsy, their families, representatives of Epilepsy Foundation of America's affiliates and interested individuals.
Epilepsy Foundation of Middle Tennessee 2002 Richard Jones Road, Ste C 202 Nashville, TN 37215 Phone: 615.269.7091 Toll-Free: 800.244.0768 Fax: 615.269.7093
Parent Support Network is designed to provide assistance and support to families. This program is specifically for parents and guardians of infants or children who have a disability or are at-risk.
Services of the program include:
1) Referral services which refer parents/guardians to the appropriate community resources and assist them in obtaining the most beneficial services.
2) Support through a network of parents including:
(a) Parent Partners which provides one-to-one interactions between two sets of parents.
(b) parent groups, which allow three or more sets of parents to get together at a planned place and time.
(c) a parent telephone network that allows many parents to be available to each other by phone.
3) Other services and activities of the group include community education,
School Alert (Kids on the Block-Puppets), advocacy, literature, home visitation program, and job Training and Placement Services (TAPS).
Epilepsy Foundation of West Tennessee 1750 Madison Avenue Memphis, TN 38104 Phone: 901.624.7148 Website: http://www.epilepsyfoundation.org/
Epilepsy Foundation of West Tennessee serves all people with epilepsy and their families. The organization:
1) Holds epilepsy education meetings where speakers discuss prevention, medicine compliance, family coping skills, and acceptance of epilepsy. The group meets once a month and meetings are open to the public.
Call for dates and times.
2) Offers an epilepsy self-help group which initiates group discussion, sharing and problem solving as well as educational programs. Call for dates and times.
3) Provides a young adult group as a monthly social outlet for people ages 18-35 with epilepsy. Call for dates and times.
4) Sponsors Camp Lakewood for children ages 7-15 with epilepsy. This week long summer camp is held each year in Soddy, TN.
5) Works with the Metropolitan Inter-Faith Association to provide the MIFA-Emergency Assistance Program. The program offers emergency financial assistance for housing and utility needs, as well as food, clothing and medication. Other available services include patient education, advocacy assistance, information on referrals, counseling, legislative activity, assistance in obtaining low cost medication and fair insurance rates, and Medic Alert necklaces and bracelets that identify the person as someone who has epilepsy.
The EFA of West Tennessee also has a variety of programs to educate the public about epilepsy. Community Education Services include:
1) SCHOOL ALERT PROJECT which provides an in-service program for school personnel to help them cope with epilepsy in the classroom. Educational programs are also held for classes from kindergarten through college.
2) VOLUNTEER PROGRAM that offers a speakers bureau, In-Service Programs for hospitals and mental health facilities, audio visual library, literature/pamphlets and a newsletter that is distributed semi-annually.
Other Resources
Epilepsy Information Medical Center Boulevard Winston-Salem, NC 27157 Toll-Free: 800.642.0500
Patricia Gibson manages the hotline and is internationally known as an epilepsy expert from the patient perspective. Ms. Gibson is actively involved in all major epilepsy associations. This hotline handles over 8000 calls per year from both physicians and patients seeking information about the latest treatment options, general epilepsy information as well as support groups in their region.
The National Epilepsy Library is the largest collection of materials on epilepsy and seizure disorders in the world. Located in Landover, MD at the headquarters of the Epilepsy Foundation of America, the National Epilepsy Library holds some 2,000 books and almost 20,000 articles and book chapters. The Library offers help in bibliographic and subject searches, in printing particular articles and in verifying publication information. The Library will also help with information requests, both for the general public and for scholarly research.
Resources for: Children and Teens (according to age range)
Brothers and Sisters: A Guide for Families of Children with Epilepsy By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Category: Coping
This guide and workbook is split for two audiences: for the adult members of a family of a child with epilepsy, and for the siblings of that child. Topics for starting family discussions include feelings, responsibilities, adjustments, and changing relationships. The book includes an activity section and the part for siblings is divided for three age categories.
All Ages
Me and My World: An Educational Program about Epilepsy for Children and their Families: Program Implementation and Discussion Leader's Guide Landover, MD: The Epilepsy Foundation, 1981. Category: Educational and Community Issues
This book tells the stories of different people who live with epilepsy, some because they have it themselves, some because someone in their family does. The information is straightforward and simple, and the different perspectives – from a brother, a daughter and a little boy with epilepsy, do a lot to address the concerns of young readers.
All Ages
When Mom or Dad Has Seizures: A Guide for Young People By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1994. Library of Congress Number: RJ496.E6 W54 19994 Category: Specific Chronic Health Condition
This book about seizures is written in four sections with each section intended for a different age group. The first section is for pre-schoolers, telling a story about a kitten whose mother has epilepsy. The second section is for elementary school children and explains the condition. The third section is for adolescent children (grades 6-9) and focuses on the questions that these kids might have about their parent's condition. The last section is intended for high school students and young adults. Parents are encouraged to read the material before they share it with their children.
3-8 years
Learning About Epilepsy By Roy G. Beran, M.D. Summit, NJ: The Medicine Group, 1989. Pages: 34 pages Category: Specific Chronic Health Condition
Written and illustrated by a physician for children to read with their parents. Young readers will learn about different kinds of epilepsy and how they make it better. When Jim falls down one day and shakes, he goes to see the friendly Dr. Smith, who explains all kinds of things about epilepsy to Jim and his mom, including all the things he can still do. This is a good introduction for small children and for their classmates.
4-8 years
Lee, the Rabbit with Epilepsy By Deborah M. Moss Kensington, MD: Woodbine House, 1989. Library of Congress Number: RC372.M68 1989 Category: Coping
Lee is a rabbit who has been diagnosed with seizure disorder. The book describes Lee's first seizure and her initial trip to the doctor, as well as an explanation of the diagnosis. The story provides a positive and realistic look at epilepsy.
4-8 years
Taking Seizure Disorders To School: A Story About Epilepsy By Kim Gosselin Valley Park, MO: JayJo Books, 1996. Library of Congress Number: RJ496.E6 G66 1996; C:2 Category: Educational and Community Issues
Told from the point of view of a girl who has seizures, Jaime, this brightly illustrated book describes the various types of seizures, what the brain is doing, and how seizures can affect a child in school. The book demystifies many stereotypes and wrong assumptions about epilepsy as well.
4-10 years
My Brother, Matthew By Mary Thompson Bethesda, MD: Woodbine House, 1993. Library of Congress Number: HV888.T56 1992 ; C:2 Category: Coping
Through the experiences of a young boy whose younger brother is born with disabilities, the author examines ways to relate to disabled family members and teaches families, especially children, how to relate and build relationships with disabled family members. This book also explores the feelings and thought processes a sibling might go through while discovering that their brother or sister has disabilities.
5-10 years
Mom, I Have A Staring Problem By Marian C. Hippe, Tiffany Buckel Orlando, FL: M.C. Hippe, 1992. Library of Congress Number: RJ496.L44 B83 1992; C:2 Category: Specific Chronic Health Condition
This booklet is about Tiffany, a little girl who has Petit Mal Seizures. It explains how Tiffany's seizures caused a learning disability, what her treatment was like and how she was able to get better. This book may be ordered from the author. For further information, please contact the Family Resource Center.
5-10 years
My Friend Emily By Susanne M. Swanson Boise, ID: Writer's Press Service, 1994. Library of Congress Number: RJ496.E6 S93 1994 Category: Specific Chronic Health Condition
In this story, Katy talks about her best friend Emily, who has epilepsy. Katie explains what epilepsy is and all the things that Emily can still do. Emily and Katy do all the things best friends do, but Katy also learns how to help Emily if Emily has a seizure. This book is excellent for children who have just been diagnosed, and for the children’s friends who might not understand.
Teens
Issues and Answers: Exploring Your Possibilities By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1992. Library of Congress Number: RJ496.E94 1992 Category: Specific Chronic Health Condition
This guide is intended for young people ages 14-21 who have epilepsy and can be used individually or in discussion groups. This book is divided into eight chapters that define epilepsy and how epilepsy occurs, give information on managing seizures, coping, family issues, friends and social situations, school issues, and becoming independent.
Videos
All Ages
Just Like You and Me: Successful Living with Epilepsy By PBS Video Series Aquarius Health Care Videos/PBS, 1990. Length: 22 minutes Library of Congress Number: RJ496.E6 J87 Category: Coping
This video is very informative and intersting. It explains what seizures are and what to do when someone has a seizure. The video also shares the lives of four children with epilepsy. In three of the cases the disorder is controlled with medication and one child is still undergoing tests to determine what is effective for her. The video relays the message that it is important not to stigmatize those with epilepsy.
3-6 years
Because You Are My Friend By The Epilepsy Foundation of America Landover, MD: The Epilepsy Foundation of America, 1996. Length: 5 minutes Library of Congress Number: RJ496.E6 B43 Category: Specific Chronic Health Condition
This is an animated video about a boy sharing with his friend that he has epilepsy. He relates epilepsy to having an allergy -- it is just something that makes him different, like wearing glasses. The boy explains what epilepsy is and the causes of the condition to his friend so that his friend will not be scared if the boy ever has a seizure. Ways to aid a person having a seizure are described as well. This video stresses the importance of being treated like a normal person despite a chronic illness.
Teens
Driving and Epilepsy By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1993. Length: 13 minutes Library of Congress Number: RC372.D75 1993 Category: Educational and Community Issues
This video shows the effects of having or not having a driver's license for persons with epilepsy. The video explores how it feels to depend on others for transportation and the risks of endangering others by driving with seizures. However, the video explains that people with epilepsy can drive in all states if the person is seizure free and provides information about how to stay seizure free.
Teens
Epilepsy in the Teen Years By Epilepsy Foundation of America Epilepsy Foundation of America, 1990. Length: 12 minutes Library of Congress Number: RC372 E64 1990 Category: Specific Chronic Health Condition
Four teens describe what it's like for them to live with epilepsy. They discuss needs, challenges, and problems they face on a daily basis. They also talk about what they can do to solve some of these problems and how they handle difficult situations.
Teens
First Do No Harm: The Ketogenic Diet (with Meryl Streep) The Charlie Foundation to Help Cure Pediatric Epilepsy, 1997. Length: 1 hour, 30 minutes Category: Nutrition/Weight Management
Meryl Streep stars in the story about a family that has a son with epilepsy. Following the family's struggles from diagnosis through hospitals and eventual improvement under the Ketogenic Diet, the movie shows the many difficulties with seizure disorders, and the different treatments available. Dramatic and moving, definitely for adults or perhaps older teens, the movie is geared towards presenting information on the Ketogenic Diet that is often difficult to obtain otherwise.
Teens
I Have Epilepsy Too By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1989. Length: 10 minutes Library of Congress Number: RJ496.E6.I42 1989; C:2 Category: Specific Chronic Health Condition
This is a very positive video that profiles three young people with epilepsy. The emphasis is that with proper medical care, children can have normal lives. They explain how epilepsy effects them through experiences as well as medical procedures.
This website explains epilepsy to children in very basic terms. The site discusses the how seizures happen, different kinds of seizures, medications, first aid for seizures and things to remember.
This website tells the story of a ten year old named Ben in Leeds, England, who has epilepsy. Ben explains why his epilepsy makes him a little different from other kids, but how he can still do all kinds of things. Ben explains that people understand his seizures better once he tells them about epilepsy. The site has a game for kids and a gallery of drawings from other kids with epilepsy.
This website, linked to the Childhood Seizure eBook, gives kids some basic information about seizures and epilepsy in an easy to understand question-and-answer format.
This website for teens offers information about epilepsy and seizure disorders. The site contains question and answer sections about health, life and "specifically for girls," resource lists, stories from teens with epilepsy, and links to online communities.
This website, linked to the Childhood Seizure eBook, is for teens with questions about their epilepsy or seizure disorders. The site answers questions about driving, dating, alcohol, jobs, college, and other issues important to teens and young adults.
This website for teens offers information, support and resources about epilepsy. The upBEAT section is for all teenagers and addresses epilepsy and seizure issues like alcohol, driving, medication, careers, sex and relationships and hormones. The getAHEAD section has information specifically for teenage girls with epilepsy that focuses on the different effects of epilepsy on fertility, contraception, pregnancy, and hormones. Both sites include links to question and answer pages, fact sheets, online communities and more information.
This informational website is provided by doctors from Children's Healthcare of Atlanta (CHOA). The site explains epilepsy and how a diagnosis is made, what kinds of doctors are involved on the patient's team, how a surgical team identifies lesions and surgical sites and how brain surgery is performed. Information is brief and basic, but can provide parents and older teens with a clearer idea of what the surgical treatment of epilepsy entails.
Community Services
All Ages
Epilepsy Foundation of America 8301 Professional Place Landover, MD 20785 Phone: 301.459.3700 Toll-Free: 800.332.1000 Website: http://www.epilepsyfoundation.org/
The Epilepsy Foundation of America offers a variety of services to families of individuals with epilepsy and educational programs to the public. Their services to families are available throught local affiliates. Many of the educational and public interest activities are handled by the national organization. Below are some of the services available from the national organization:
1) Informational and educational programs to promote and improve public understanding of epilepsy and help foster more accepting attitudes among the general public.
2) Professional education programs and resource materials are available for physicians, allied health and other health professionals, children, youth and families. The programs promote educational efforts to help identify epilepsy in children at an early age, help to improve understanding of epilepsy and support within the family unit, and to provide networking opportunities for children and young people with epilepsy, their parents and siblings.
3) Research helps identify new drugs, develop better treatments, and find solutions to the medical puzzle of epilepsy.
4) Advocacy efforts help fight discrimination, promote access to health care, job training, supported employment, vocational rehabilitation, employment, independent living programs. The Foundation aggressively seeks ways to expand funding for biomedical research in epilepsy.
5) Employment programs assist people with epilepsy in finding and keeping competitive work and promoting opportunities for employment throughout the country.
6) Information and referral toll-free service provides help on all aspects of seizure disorders to people with epilepsy, their families, and the public.
7) National Epilepsy Library is the leading source of medical and psychosocial information on epilepsy for physicians and other professionals. National Epilepsy Library services are provided free of charge.
8) A national conference is held annually for health professionals, people with epilepsy, their families, representatives of Epilepsy Foundation of America's affiliates and interested individuals.
All Ages
Epilepsy Foundation of Middle Tennessee 2002 Richard Jones Road, Suite C, 202 Nashville, TN 37215 Phone: 615.269.7091
The Youth Parent Group is a support group for children and youth with epilepsy to interact socially. The group also offers parents the opportunity to interact with other parents who also struggle with similar problems. The group:
1) Conducts support group meetings. About 5-6 people usually attend the meetings and new members are welcome at anytime. The group meets on the last Tuesday of each month from 6:30 - 8:30 p.m. at the Epilepsy Foundation of Middle TN, 2002 Richard Jones Road, Suite C202, Nashville, TN. The group usually contains parents, adult family members, and health or health related professionals, children and adolescents with epilepsy and their brothers and sisters.
2) Other activities and services of the group include social events, telephone support, literature for purchase, library of educational materials, informal training, and the STEP program for parents.
Summer camp offers kids with epilepsy a chance to spend time with peers and participate in activities such as swimming, water skiing, tubing, canoeing etc. But it's not just about a week of fun away from home. A week at camp is often a life changing experience; full of chances to build self confidence and a healthy sense of self-worth.
La Epilepsia y la Familia By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1989. Library of Congress Number: RJ496.E6 E65 1989 Category: Coping
In this Family Video Library Series parents tell how they cope with the medical and family issues associated with raising a child with a seizure disorder.
Yo Tambien Tengo Epilepsia By Epilepsy Foundation of America Landover, MD: Epilepsy Foundation of America, 1989. Library of Congress Number: RJ496.E6Y6 1989 Category: Specific Chronic Health Condition
Produced entirely in Spanish, this video introduces children to other children with epilepsy. In the video, nine children with epilepsy talk about their experiences and life with epilepsy.
This website from the Epilepsy Foundation provides a great deal of information about epilepsy in Spanish. The first section has articles about diagnosis and treatment, different kinds of financial assistance and frequently asked questions about epilepsy. The second section is devoted to women and epilepsy, and focuses on epilepsy and hormones, pregnancy, menopause, sexuality and other issues of concern to women.
This website from Epilepsy.com has links to Spanish language articles about epilepsy and seizure disorders. The links are from sources like the Social Security Administration, the Epilepsy Foundation, the New York Online Access to Health, and others.
This website from Epilepsy.com has links to articles about epilepsy and seizure disorders in a variety of different languages. The website has links to articles with information in multiple languages, and to sites in French, Italian, Dutch, Japanese, and Korean.
This website from the National Information Center for Children with Disabilities (NICHCY) contains basic information about epilepsy in Spanish. The site defines epilepsy and the frequency with which it occurs, the characteristics of epilepsy and the implications for educators. The site also as information about national epilepsy organizations.
This website from the University of Utah's Health Sciences Center provides information about epilepsy and seizures in Spanish. The site explains seizures, the different types, some of the causes of seizures, some symptoms of seizures, methods of diagnosis, and treatment options.
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All information on this website is for educational purposes only. Specific medical advice, diagnoses, and treatments can only be given by your personal health care professionals
