ABOUT EPILEPSY - MORE INFORMATION

Where can I get more information about Epilepsy?

There are a number of information sources about Epilepsy. Here is a partial list, and I welcome suggestions for other things to be added here.

• Epilepsy Foundation of America (EFA)
  8000 Corporate Drive, Suite 120
  Landover, MD 20785
  1-800-225-6872 or 1-800-EFA-1000
  www.efa.org
   
• The Epilepsy Connection
  The Epilepsy Connection Email all inquiries to: motzko@ix.netcom.com
  Paulette L. Motzko, Executive Director & Founder
  Orange County, CA 714-998-0391
   
• Epilepsy Canada
  1470 Peel St., Suite 745
  Montreal, Quebec, Canada
  H3A 1T1
  (514) 845-7866
   
• National Institute of Health
  1-800-352-9424    E-mail ntsa@aol.com
   
• Additional information on the Ketogenic diet can be obtained from: The Johns Hopkins Pediatric Epilepsy Center, (410)955-9100 or The Charlie Foundation to Help Cure Pediatric Epilepsy, (800)FOR-KETO.

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What books are available on Epilepsy?

• EPILEPSY AND THE FAMILY by Richard Lechtenberg. Harvard Univ. Press, 79 Garden Ave, Cambridge, MA 02138-1311
   
• LIVING WELL WITH EPILEPSY by Robert J. Gumnit, Demos Publications, 1990, 156 Fiftth Ave, NY, NY 10010
   
• EPILEPSY AND YOU, by Frank O. Volle and Patricia A. Heron
   
• DOES YOUR CHILD HAVE EPILEPSY? by J.E. Jan, R.G. Ziegler, G. Erba, Austin PRO-ED Press, 5341 Industrial Oacks Blvd, Austin, TX 78735
   
• CHILDREN WITH EPILEPSY: A PARENTS GUIDE, by Helen Reisner, Woodbine House, 5615 Fishers Lane, Rockville, MD 20852
   
• ONE MIRACLE AT A TIME, HOW TO GET HELP FOR YOUR DISABLED CHILD - FROM THE EXPERIENCE OF OTHER PARENTS, by Irving Dickman, PACER Center, Inc 4826 Chicago Ave, Minneapolis, MN 55417
   
• THE EPISODE, by Richard Pollak * This one is listed as fiction
   
• HAVING EPILEPSY, THE EXPERIENCE AND CONTROL OF ILLNESS by Joseph Schneider and Peter Conrad, Temple Univ Press, Broad and Oxford Streets, Philadelphia, PA
   
• PSYCHOPATHOLOGY IN EPILEPSY, SOCIAL DIMENSIONS by Steven Whitman and Bruce Hermann, Oxford University Press, 16-00 Pollitt Drive, Fair Lawn, NJ 07419-2799
   
• SEIZURES AND EPILEPSY IN CHILDHOOD: A GUIDE FOR PARENTS by John Freeman, EileenVining and Diana Pillas, The John Hopkins University Press, 701 West 40th St, Balitimore, MD 21211
   
• A GUIDE TO UNDERSTANDING AND LIVING WITH EPILEPSY, Orrin Devinsky, F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103
   
• BRAINSTORMS: EPILEPSY IN OUR WORDS, by Steven Schachter, Raven Press 1185 Avenue of the Americans, NY, NY 10036
   
• THE BRAINSTORMS COMPANION: EPILEPSY IN OUR VIEW, by Steven Schachter, Raven Press, 1185 Avenue of the Americas, NY, NY 10036
   
• THE EPILEPSY DIET TREATMENT: AN INTRODUCTION TO THE KETOGENIC DIET (Demos Press, 1994) by John Freeman, Millicent Kelly, and Jennifer Freeman
   
• CHALLENGE OF EPILEPSY by Sally Fletcher (Aura Publishing Company/20 Sunnyside Ave., #A150/Mill Valley, CA 94941)
   
• New Release:"Coping with Mild Traumatic Brain Injury." Authors: Dr. Diane Roberts Stoler, Ed.D., Barbara Albers Hill  

  "Very few books about brain injury, if any, are as comprehensive and far-reaching as Dr. Diane Stoler's. Coping With Mild Traumatic Brain Injury answers many questions haunting survivors and family members. I strongly recommend this text as required reading for anyone affiliated with the brain injury community." - George A. Zitnay, Ph.D. President and CEO, Brain Injury Association

  Brief Description: This book is a concise description of the various symptoms and consequences related to a mild traumatic brain injury. Interlaced in each chapter are true life stories, conventional and alternative treatment approaches and practical information.

  Visit their website at: http://health-helper.com/

  Special Book Offer: -- Especially for parents and caregivers of children with neurological problems 

• "What To Do About Your Brain-Injured Child." Or Your Brain-Damaged, Mentally Retarded, Mentally Deficient, Cerebral-Palsied, Spastic, Flaccid, Rigid, Epileptic, Autistic, Atetoid, Hyperactive, Down's Child. By Glen Doman,  Founder of The Institutes for the Achievement of Human Potential, Philadelphia, PA.  

  "A breakthrough book that brings real hope to thousands of children"

Where can I find information on the Internet about Epilepsy?

There are two Epilepsy-related mailing lists: "Epilepsy-List" is intended for general discussions about Epilepsy and seizure disorders. Most traffic is from people living with Epilepsy or their friends and family. The companion list, "Epilepsy-PRO" is intended for discussions about Epilepsy and seizure disorders by professionals working in this field. To find out about these lists, send mail to listserv@calvin.dgbt.doc.ca and include the command lines "info epilepsy-list" and/or "info epilepsy-pro".

Mass General Hospital and Harvard sponsor a neuro forum where people can ask questions about seizure disorders, meds, etc. The address is http://dem0nmac.mgh.harvard.edu/neurowebforum and you may try http://dem0nmac.mgh.harvard.edu/epilepsy/epihome.html. [Note: that is a zero]

The Charles A. Dana foundation, which has opened a website at http://www.dana.org/, supports brain research and school reform by means of grants and public education initiatives.

There's a fairly extensive description of Depakote at http://www.fairlite.com/ocd/medications/depakote.shtml and this may be a good reference for information on many medications.

Another reference for drug information is also available.

Canine Epilepsy

The Epilepsy Society of Northwest Florida has a home page.

The Epilepsy Association of Metro Toronto also has a home page.

Your Child and Neurosurgery contains several chapters on the surgical treatment of children with medically refractory epilepsy.

Epilepsy Support/Education Organizations

MGH Epilepsy Surgery

Assorted Medical Links

SURGERY FOR EPILEPSY

http://ccfadm.eeg.ccf.org/~tom/ cv.out

AECOM/MMC Epilepsy Home Page

Neurosciences Internet Resource Guide

Department of Neurological Surgery

MCG-Neurology

University Medical Center

Tammi's Epilepsy Page

JHMI-InfoNet: Patient Advocacy Groups

Neurology/Neuroscience

Yale Section of Neurosurgery

UNM Neurosurgery Associates

Basic Sciences

PSI PET Program

About the CVRC

http://www.med.stanford.edu/touchstone/listserv.html

ftp://ftp.win-uk.net/pub/users/copernic/medical.resources

http://www.ibmpcug.co.uk/~copernic/meda.htm

Neuropsychology Central

EpiNet