Helping Children Understand Epilepsy – Information for the Parent or Guardian

Epilepsy Government Agencies Centers for Disease Control and Prevention (CDC)

CDC, an agency of the U.S. Department of Health and Human Services, promotes health and quality of life by preventing and controlling disease, injury, and disability. Within CDC, the National Center for Chronic Disease Prevention and Health Promotion is charged with preventing death and disability from chronic diseases and with promoting maternal, infant, and adolescent health and healthy personal behaviors.

The CDC epilepsy program, which is within this center, conducts epilepsy program activities in the areas of improving care, improving communication and combating stigma, self-management, surveillance and prevention research, increasing public awareness and knowledge, and strengthening partnerships.

National Enter for Prevention Health Promotion Centers for Disease Control and Prevention

4770 Buford Highway

N.E., MS K51 Atlanta, GA 30341–3724 www.cdc.gov/epilepsy

National Institute of Neurological Disorders and Stroke (NINDS)

NINDS is an agency of the U.S. Department of Health and Human Services and a component of the National Institutes of Health. It is the leading supporter of biomedical research on disorders of the brain and nervous system.

National Institute of Neurological Disorders and National Institutes of Health

Building 31, Room 8A-06 Bethesda, MD 20892 http://www.ninds.nih.gov

Health Resources and Services Administration HRSA is an agency of the U.S. Department of Health and Human Services. Its mission is to improve and expand access to quality healthcare for all, including people with epilepsy.

Health Resources and Services Administration Maternal and Child Health Bureau Division of Services for Children with Integrated Services Branch, 18A-18 Rockville, MD 20857 http://www.hrsa.gov

Non-Government Agencies Epilepsy Foundation (EF) EF is a national organization that conducts research and provides education, advocacy, and other services for people living with epilepsy. The Epilepsy Foundation Web site offers detailed information on all aspects of epilepsy as well as on Epilepsy Foundation’s programs and services, news, and publications. EF state affiliates provide services on the local level in many communities. Some EF affiliates have support groups specifically for parents. For a complete listing of state affiliates or to find the one closest to you, please contact the Epilepsy FOUNDATION 4351 Garden City Drive Landover, MD 20785 – http://www.epilepsyfoundation.org

Epilepsy Foundation eCommunities:  Epilepsy Foundation provides e-communities that allow for online chats and dialogue among common interest groups including parents of teens with epilepsy. For a listing of groups or to join a group, please visit http://www.epilepsyfoundation.org/ecommunities.

Epilepsy Foundation Resource Library:  Epilepsy Foundation provides an extensive resource library on its Web site. All topics related to epilepsy including searches and information (for free or for a nominal fee to covering copying costs) are posted.

Resources include EpilepsyUSA—Epilepsy Foundation’s bimonthly magazine and a good resource for finding out about advances in the medical and research fields, upcoming EF events, and the lives of people, including young people living with epilepsy.

Epilepsy: Part of Your Life—Offers guidance on medical treatment and advice for living a healthy life, adjusting to epilepsy, reducing the frequency of seizures, and understanding associated feelings. Answers to Your Questions about Epilepsy—Written for teens. Includes answers to teens’ questions on why taking medicine on time are so important; the interactions and dangers of mixing medicine, drugs, and alcohol; and the use of birth control. Epilepsy: Questions and Answers about Seizure Disorders—Offers answers to questions about epilepsy, seizures, first aid, treatment, daily life, and the EF. Safety and Seizures: Tips for Living with Seizure Disorders—Reviews safety issues that may arise when seizures occur. Medicines for Epilepsy—discusses various types of Surgery for Epilepsy—Covers current surgical treatment

American Epilepsy Society – This national society promotes research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy.

American Epilepsy Society

342 North Main Street West Hartford, CT 06117–2507 – http://www.aesnet.org

National Association of Epilepsy Centers (NAEC) – The NAEC is a nonprofit trade association whose members include more than 60 specialized epilepsy centers across the United States. This association can help you find an epilepsy center close to your home.

NATIONAL ASSOCIATION OF EPILEPSY

5775 Wayzata Boulevard Suite 200

Minneapolis, MN 55416

http://www.naecepilepsy.org

Health Websites

www.kidshealth.org/
KidsHealth: A large and reliable site divided into sections aimed at children, teens, and parents, this is a good source of general health information covering all ages. It’s sponsored by The Nemours Foundation, a charitable organization that funds children’s health projects.

www.ncbi.nlm.nih.gov/PubMed 
PubMed, a service of the National Library of Medicine, is the easiest place to find abstracts of medical articles.

www.clinicaltrials.gov/
ClinicalTrials.gov: This site, sponsored by the National Institutes of Health (NIH), lists thousands of clinical studies being performed by the NIH, other United States federal agencies, and the pharmaceutical industry. Studies in the database are conducted primarily in the United States and Canada, but locations in many other countries are included. Find out if you qualify to participate.

www.mayoclinic.com/
MayoClinic.com: An educational site with good information provided or reviewed by the physicians and researchers at the Mayo Clinic.

www.mayoclinic.org/
Mayo Clinic is a world leader in developing innovative ways to diagnose and treat epilepsy in children and adults.

www.vh.org/
Virtual Hospital: University of Iowa source of information and links for both healthcare professionals and consumers.

www.webmd.com/
WebMD: A medical news site with features, quizzes, educational photos and diagrams, and links to commercial sponsors.

www.medscape.com/
Medscape: Health news for doctors and other health professionals. Visitors must register, but there’s no charge.

www.nlm.nih.gov/medlineplus/
MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends.

www.merck.com/pubs/
Online versions of the Merck Manual, a classic textbook of diagnosis and therapy, as well as the home edition and the Merck Manual of Geriatrics.

www.lib.uiowa.edu/hardin/libguides/
Hardin MetaDirectory of Internet Health Sources: A well-respected “list of lists” of Internet health resources.

www.medmatrix.org/
Medical Matrix: Many, many links to other resources. Free registration required.

www.healthatoz.com/
HealthAtoZ: Interactive site with health calendars.

www.healingwell.com/
HealingWell.com Epilepsy Resource Center: Features medical news, health articles, doctor-produced video webcasts, message boards and chat rooms, email, newsletters, books and reviews, and resource directories on Depression.

www.mentalhelp.net/
Mental Help Net: A site specializing in information and resources on mental health topics such as depression.

www.personalhealthzone.com/
Personal Health Zone: A site that emphasizes alternative medicine. Mostly valuable for its links to other sites.

http://www.aboutlearningdisabilities.co.uk/
About Learning Disabilities: A site focused on comprehensive advice on learning disabilities.

http://www.aboutlearningdisabilities.co.uk/
About Learning Disabilities: A site focused on comprehensive advice on learning disabilities.

Books and Support Groups

• Epilepsy You’re Not Alone Written by Stacey Chillemi
• A Parent’s Guide to the Teenage Years by B. B. Williamson
• Teenagers & Parents: Ten Steps for a Better by Roger W. McIntire
• Parenting Teens with Love & Logic: Preparing Adolescents for Responsible Adulthood by Jim Fay and Foster W. Cline
• Epilepsy: Questions and Answers by J. W. Sanders and Yvonne Hart Epilepsy: 199 Answers (A Doctor Responds to His Patients’ Questions) by Andrew N. Wilner, M.D.
• Growing Up with Epilepsy: A Practical Guide for Parents by Lynn Bennett Blackburn, Ph.D.
• The Official Patient’s Sourcebook on Seizures and Epilepsy: A Revised and Updated Directory for the Internet Age published by Icon Health Publications
• Epilepsy: The Ultimate Teen Guide by Kathlyn Gay and Sean McGarrahan
• Let’s Talk About Epilepsy by Melanie Apel Gordon
• Women with Epilepsy: A Handbook for Health and Treatment issues by Martha J. Morrell, M.D.
• Epilepsy and the Family: A New Guide (1999 edition) by Richard Lechtenberg, M.D.
• Epilepsy: Patient and Family Guide by Orrin Devinsky, M.D.
• Epilepsy and Seizures: Everything You Need to Know by Donald Weaver, M.D.
• The Last Book in the Universe by Rodman Philbrick

Helpful Websites

• Citizens United for Research in Epilepsy http://www.cureepilepsy.org

Research

https://www.aesnet.org/
Website of the American Epilepsy Society, which promotes research and education for healthcare professionals. 

https://www.ninds.nih.gov/
the site of the National Institute of Neurological Disorders and Stroke, the part of the U.S. National Institutes of Health that covers brain disorders.  News about research developments and clinical trials.

https://www.aesnet.org/
Website of the American Epilepsy Society, which promotes research and education for healthcare professionals. 

http://www.centerwatch.com/clinical-trials/listings/condition/62/epilepsy
Center Watch: A comprehensive list of epilepsy clinical studies going on throughout the United States. 

https://www.ninds.nih.gov/
the site of the National Institute of Neurological Disorders and Stroke, the part of the U.S. National Institutes of Health that covers brain disorders.  News about research developments and clinical trials.

Epilepsy Support Groups

http://www.epilepsysupport.org.uk/
Maintained by someone with the disease, this site offers support, advice, and useful links.

https://groups.yahoo.com/neo/groups/ketogenic/info
This is a support group for parents, family members, and caregivers who are using the Ketogenic Diet as a means of control for epilepsy or seizure disorders.

https://groups.yahoo.com/neo/groups/childhoodepilepsy/info – This mailing list is intended to support parents and other caregivers of children diagnosed with a form of epilepsy.

https://groups.yahoo.com/neo/groups/parents-of-kids-with-epilepsy/info– This Group is for Parents of Children with Epilepsy.

http://home.ease.lsoft.com/scripts/wa-HOME.exe?A0=EPILEPSY-L– An E-mail based support group for people with epilepsy and those who care about and for them.

https://rarediseases.info.nih.gov/search?keyword=epilepsy– This is a site about lafora body disease it has a message board and a links page.

https://groups.yahoo.com/neo/groups/epilepsy/info
For people with or know someone with Epilepsy.  A place to talk, share stories, and for moral support.  All ages welcome.

https://groups.yahoo.com/neo/groups/epilepsy-kids/info
Epilepsy-Kids offer support and information for parents of children diagnosed with any form of epilepsy.

https://groups.yahoo.com/neo/groups/KuekidsAustralia/info – The Kuekids Australia mailing list is to help parents, families, and friends of children using the ketogenic diet who may also have food intolerance problems.

http://www.healthboards.com/epilepsy/index.htm
Healthboards.com message board for information and support on epilepsy.

https://groups.yahoo.com/neo/groups/Christian-Epilepsy-Support/info– Christian oriented support for people with Epilepsy or family and friends of people with Epilepsy.

https://groups.yahoo.com/neo/groups/adultswithepilepsy/info
This club is for adults (those 18 and older) to discuss their experiences with epilepsy, including causes, treatment, and coping skills.

https://groups.yahoo.com/neo/groups/ChristianEpilepsyPrayerGroup/info– Are you a Christian living with or caring for someone with epilepsy?

https://groups.yahoo.com/neo/groups/EpilepsySurgeryGroup/info– We deal with those who have had brain surgery, Vagus Nerve Stimulator surgery, and Gamma Knife Radiosurgery.  Our members are here to help answer any questions you may have.  All are welcome, whether you are a surgery candidate or not.

https://groups.yahoo.com/neo/groups/real_epilepsy/info
A group based in Indiana.  Epilepsy and seizure disorder resources and support.

https://groups.yahoo.com/neo/groups/RareEpilepsySyndromes/info
Rare epilepsy is very difficult for all families involved.  This group has been made to help educate and support these families.  Rare epilepsies include.  ESES/CSWS, LKS, LGS, Begnign Rolandic, and any other hard to recognize epilepsy.

https://groups.yahoo.com/neo/groups/epilepsychat/info
A Place for Chat, Info, Support and To Have Fun

https://groups.yahoo.com/neo/groups/TLE/info
Discussion of temporal lobe epilepsy and/or partial complex seizure disorder.  For sufferers and friends/family of sufferers.

https://groups.yahoo.com/neo/groups/doosesyndrome/info
For parents of children who have Doose Syndrome rare, severe, intractable epilepsy of early childhood.  Group provides support for parents along with an insight into the management of this disorder.

https://groups.yahoo.com/neo/groups/worldofepilepsy/info – For people around the globe who have epilepsy and would like to share their recent or previous experience with epilepsy.

https://groups.yahoo.com/neo/groups/wivesofmenwithepilepsy/info
It is the hope of this club to address problems, offer support, and encouragement to the wife whose husband has epilepsy.

https://groups.yahoo.com/neo/groups/epilepsycured/info– We are people sharing information on curing/preventing epilepsy – seizures.  This is a support group for patients, parents, children, family members … anyone and everyone.

https://groups.yahoo.com/neo/groups/doosesyndrome/info
For parents of children who have, or who may have Myoclonic-Astatic Epilepsy, otherwise known as Doose Syndrome, a rare, severe, intractable epilepsy of early childhood.

https://groups.yahoo.com/neo/groups/epilepsysupport4kids/info
This group is a support group for kids with epilepsy, kids interested in improving their condition by natural means.

Epilepsy Websites

NEW! Let’s Talk About It! http://talkaboutit.org/

Epilepsy.com – Epilepsy and seizure diagnosis, treatment, and information for people with epilepsy.  www.epilepsy.com

http://www.braintalkcommunities.org/
BrainTalk Communities: Online patient support groups for neurology (from Massachusetts General Hospital) — a large and active site with separate forums for epilepsy and a very wide range of other disorders.

http://www.columbia.edu/
a website for The IRELAND Project, based at Columbia University in New York.  The IRELAND Project is a multicenter genetic linkage analysis study designed to look for the genes that cause seizures in Rolandic Epilepsy and associated difficulties in reading and speech.

http://www.emedicinehealth.com
a website specifically designed to address health issues such as epilepsy.  The site contains articles written by physicians for patients and consumers.

http://www.epilepsycenter.com/
The Epilepsy Center is an organization that provides services in northwestern Ohio. Features safety tips, posters for sale, and extensive links.

http://www.epilepsyfoundation.org/
Website of The Epilepsy Foundation, the U.S. national organization that works for people affected by seizures.  A good place to get reliable information, especially on legal affairs and community services.

http://epilepsytoronto.org/
Website of Epilepsy Toronto, a non-profit organization dedicated to the promotion of independence and optimal quality of life for all people with epilepsy and their families.  They offer a range of epilepsy support services, information programs and education to the public.

http://familydoctor.org
Familydoctor.org, a website created by the American Academy of Family Physicians: General information on epilepsy.

www.hsc.stonybrook.edu
the website of the Long Island Comprehensive Epilepsy Center.

https://www.naec-epilepsy.org/
the website of the National Association of Epilepsy Centers.  Find a comprehensive epilepsy center near you!

http://www.neuro.wustl.edu/epilepsy/
Epilepsy information and local resource centers in St. Loius, MO.

http://www.parentcenterhub.org/?s=epilepsy
National Dissemination Center for Children with Disabilities: Epilepsy information and resources.

http://nyulangone.org/locations/comprehensive-epilepsy-center
Website of the NYU Comprehensive Epilepsy Center, the largest epilepsy center in the United States.  The Center offers testing, evaluation, screening, treatment, drug trials, alternative therapies, and surgical intervention for children, adolescents, and adults with all forms of epilepsy.

http://www.mountsinai.org/patient-care/service-areas/neurology/areas-of-care/epilepsy-center
New York University-Mount Sinai Comprehensive Epilepsy Center website.  Information and useful links.  The center includes a special program for people with tuberous sclerosis.

http://faces.med.nyu.edu/
the website of Finding a Cure for Epilepsy and Seizures (f.a.c.e.s.).  f.a.c.e.s. is an epilepsy organization that funds epilepsy research, education and awareness, and community-building events for people with epilepsy.

https://www.verywell.com/special-needs-children-4014646
A list of epilepsy websites primarily for parents of children with epilepsy.

http://www.suncoastepilepsy.org/
Suncoast Epilepsy Association: A Florida, non-profit organization that provides services to individuals with epilepsy in Pinellas and Pasco Counties.

http://www.acronymfinder.com/Pediatric-Epilepsy-Project-(charity)-(PEP).html
The Pediatric Epilepsy Project at UCLA (PEP) was formed with a single, all-important mission: to raise funds, provide financial support and increase community awareness to help sustain the Division of Pediatric Neurology at UCLA.

http://faculty.washington.edu/chudler/epi.html
University of Washington: Professor’s website containing epilepsy information and resources.

http://www.bbc.co.uk/search?q=epilepsy
A UK website with information on epilepsy and local resources for UK residents living with epilepsy.

http://www.bcepilepsy.com/
The BC Epilepsy Society is a non-profit, charitable organization dedicated to serving the British Columbians living with epilepsy and their families.

http://www.epilepsiemuseum.de/
A German online museum that features artwork, history, and virtual tours.

http://www.epilepsy.ca
the website for Epilepsy Canada, featuring information on Canadian resources as well as general facts.  Also includes “Kidz Korner” with reassuring explanations for children.

http://epilepsyontario.org/
Epilepsy Ontario: A website with information on epilepsy and support and volunteer opportunities for the local Ontario epilepsy community.

https://www.epilepsy.org.uk/
the website of Epilepsy Action, the working name of the British Epilepsy Association.

www.epilepsysupport.org.uk/
Epilepsy Support: A British site offering patient-to-patient community support.

http://epilepsyfoundation.org.au/
The website of the Epilepsy Foundation of Victoria, Australia.  You can participate in rating the websites included in the interesting list of links here, including some in other languages.  Also, some good practical tips.

https://www.ibe-epilepsy.org/
the website of the International Bureau for Epilepsy, a European-based group dedicated to improving the non-medical aspects of life with epilepsy around the world.  The site also includes links to groups in many countries.

http://www.ilae.org/
International League Against Epilepsy: A preeminent association of physicians and other health professionals working towards a world where no persons’ life is limited by epilepsy.  This website contains plenty of helpful information on epilepsy.

Do you have a helpful epilepsy resource that’s not listed here? Tell Us about it.