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KIDS WITH EPILEPSY

If your child has been diagnosed with epilepsy, the first thing you need to do is to educate yourself and your family about:

• everything your child CAN do;
  • in school
  • in athletics (link)
• current epilepsy tests;
• current epilepsy treatments;
• safety precautions.

Besides the help from us, here is a series of links that will help give you the basic information you need:

AN INTERACTIVE VIDEO TUTORIAL:http://www.nlm.nih.gov/medlineplus/tutorials/seizuresandepilepsy.html

>>>>>>>>>>>>  in Spanish: http://www.nlm.nih.gov/medlineplus/spanish/tutorials/seizuresepilepsyspanish.html

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    The standard reference work that will provide reliable and factual knowledge is a paperback book by Orrin Devinsky, MD. is the Epilepsy Patient & Family Guide ISBN 0-8036-0498-x. Available at:   Barnes & Noble.com - A Epilepsy - Patient & Family Guide   for $26.95, it is also available at most public libraries.  Make sure you get the 2nd edition for the most current information.

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Other books patients have recommended include click on each title for a buying link:

• Epilepsy You're Not Alone: A Personal View On How To Cope With The Disorder Stacey Chillemi
• Epilepsy and Seizures: Everything You Need to Know Donald F. Weaver
• Partial Seizure Disorders: A Guide for Patients and Families Mitzi Waltz, Linda Lamb (Editor)
• Seizures and Epilepsy in Childhood: A Guide John M. Freeman, Eileen P. G. Vining, Diana J. Pillas, Eileen P. Vining
• Epilepsy and the Family: A New Guide Richard Lechtenberg

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The has an excellent site for kids and TEENS that has a basic intro to epilepsy

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From the National Institutes of Health

• http://www.ninds.nih.gov/health_and_medical/disorders/epilepsy.htm   (National Institute of Neurological Disorders and Stroke) - Short Summary
• Seizures and Epilepsy: Hope through Research http://www.ninds.nih.gov/health_and_medical/pubs/seizures_and_epilepsy_htr.htm(National Institute of Neurological Disorders and Stroke)

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From the National Dissemination Center for Children with Disabilities:

• http://www.nichcy.org/pubs/factshe/fs6txt.htm a good fact sheet discussing, among other things, education issues.
• IN SPANISH:http://www.epilepsyfoundation.org/contestacion/fpr.cfm

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SUPPORT GROUPS

The Epilepsy Foundation:  http://www.epilepsyfoundation.org/ecommunities/

Interest Groups on this site include:

• Parents Helping Parents - A group for parents and guardians of children with epilepsy.
• Genetics & Heredity - A group dedicated to the special needs of those who have conditions that may have a genetic or hereditary basis.
• Women & Epilepsy - Women affected by epilepsy can meet supporting friends online.
• Teen Group - A place just for teens.
• Friends, Family, & Loved Ones - Support for those who give support.
• SUDEP (Sudden Unexplained Death in Epilepsy) - A group for education, support and information sharing about this serious subject.
• The Lounge - An informal place to hang out and get to know other members.
• Poetry & Prose - A forum to encourage individual creative expression.
• Entitled2Respect - Straight talk for teens about acceptance and Epilepsy.
• KidsClub - Scoop, our friendly puppy, invites kids of all ages to KidsClub. Come out to the Playground! Visit the Funshop! Read some stories, play games with the puppy!