Epilepsy Talk

Expanded Guide to Epilepsy Books for People of All Ages

August 31, 2014
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When I decided to begin an epilepsy library for reference, I was absolutely overwhelmed by the millions of books out there.

So, I went to Amazon, rolled the dice and ended up spending needless money on a lot of duds.

Don’t get me wrong, some were of value, but most were a waste of time.

So, to save you from my disappointing experience, I’ve combed the web, epilepsy foundations, blogs and wherever else I could think of to find books that would actually inform, explain and even sometimes, entertain.

I hope you’ll find something of use on this list, which is truly a labor of love…

EPILEPSY BOOKS FOR CHILDREN

My Mommy Has Epilepsy — By Stacey Chillemi

As a mother of three and a woman with epilepsy, Chillemi is realistic about her limitations, “Having epilepsy and being a mom is difficult at times because I worry that if I have a seizure and I am unable to recover fast enough, that my kids will suffer,” said Chillemi. In fact, the entire time Chillemi has been a mother she has had only one tonic-clonic seizure resulting in serious injury. According to Chillemi, she was walking the dog with her children when she felt a seizure coming on.

She immediately instructed the children to go inside and wait downstairs for her. Following the seizure, Chillemi realized she had suffered a head injury and reached out to a neighbor for help. After the tonic-clonic seizure Chillemi decided to write a children’s book, called “My Mommy Has Epilepsy”.

Her goal was to help children understand epilepsy in an age appropriate way as well as to help dispel some of the fear she had witnessed her own children experience. “I don’t want my children to get nervous or to worry about my seizures and the tonic-clonic seizure really motivated me to write a children’s book to help them and other kids cope and understand epilepsy.”

Chillemi cautions women with epilepsy to monitor their stress level. “Don’t try to accomplish too much. Do as much as you can and remember to set realistic goals and to reward yourself each day.” She also believes that in order to live with epilepsy and maintain a positive attitude it is important to focus on one’s self.

She advises women with epilepsy to educate themselves about their epilepsy and believes knowledge helps alleviate stress as well. $11.95 at  http://www.amazon.com/

Mommy, I Feel Funny! A Child’s Experience with Epilepsy — Danielle M. Rocheford (Author), Chris Herrick (Illustrator)

Based on a true story, this book introduces the reader to Nel, a little girl who is diagnosed with epilepsy. The story takes you through the days following Nel’s first seizure. Suddenly, Nel and her family are faced with thoughts, fears and emotions that come with the discovery, understanding and acceptance of epilepsy.

Through simple but thorough explanations, we learn what Nel experiences when she has a seizure, visits her doctor and has testing done. Every child with epilepsy and parent of a child with epilepsy should hear this story.  $12.95 at http://www.amazon.com/

Dottie the Dalmatian has Epilepsy (ages 2 to 6) — By Tim Peters & Company

A delightful illustrated story for young children. Dotty the Dalmatian discovers she has epilepsy. At first she feels embarrassed and afraid, but she learns to accept and control her seizures and goes back to her important job of helping the firefighters save lives. A large colorful poster accompanies the book.  $4.70 Used at  http://www.amazon.com/

Lee the Rabbit with Epilepsy (ages 3 to 6) — By Deborah M. Moss (Author), Carol Schwartz (Illustrator)

Read your child this delightful story about the young rabbit with epilepsy. It tells how Lee and her family cope with the challenges of epilepsy, beginning with Lee’s first seizure and initial visit to the doctor, through her diagnosis and treatment. Use it to explain epilepsy to your child with epilepsy, as well as to brothers, sisters, and friends.  $12.95 at http://www.sonic.net/~lilith/echolalia_press//lee.html

Koko the Service Dog: A Seizure Response Dog Shares His Story (ages 6 to 12) — By Lisa Mink

Koko shares his story as a seizure dog in a fun and engaging manner that teaches children important lessons about people with disabilities – that it’s not about what they can’t do, but what they can do. This true story explains Koko’s role as a seizure response dog and how important service dogs can be in the lives of people with disabilities.  $15.09 at  http://www.amazon.com/

Living with Seizures — By Heather Tuttle

A 7-year old girl writes and illustrates this one-of-a-kind book to explain to other children what it is like to have epilepsy. Her book addresses epilepsy education, interaction with kids at school & first aid while dispelling common myths about the disorder. Most importantly, the book tells others that kids with epilepsy are no different than anybody else.  Free PDF Download  http://www.ebooknetworking.com/books_detail-0964971305.html

Mom, I Have a Staring Problem — By Marian Carla Buckel

Tiffany, a 7-year-old, describes her experience with absence (petit mal) seizures, her feelings, wishes and fears.  $12.00 from http://www.amazon.com/

Sarah Jane Has Staring Moments — By Kate Lambert, Illustrated by Rebecca Morris

7 year-old Sarah Jayne Possembury has “staring moments” know as Absence Seizures. With the help of her best friend John, Sarah overcomes her classmate’s prejudices and lack of understanding towards her epilepsy. The book shows that through simple communication and understanding, children can be empowered to overcome the obstacles they face.

Author Kate Lambert, was inspired to write the book after her daughter Lille, was diagnosed with Absence Seizures at age 5. In the early days following diagnosis, Kate recalls particularly difficult times concerning the lack of understanding towards Lille’s condition. Kate was determined to write the book to help others understand. Available at http://www.sjstaringmoments.com/

Because You Are My Friend

This coloring book is a fun and convenient way to help explain epilepsy to your brother or sister, friends or classmates. FREE to residents of PA. Email your name and address to the Children & Family Services Coordinator at staff@efwp.org or call 800-361-5885.

FREE EPILEPSY ONLINE BOOKS AND VIDEOS

Download epilepsy e-books and videos for free.

A search on “Epilepsy” resulted in the following:

Family Stories — Massachusetts General Hospital

The eight family stories presented in these video profiles and essays provide a window into the lives of children with epilepsy and their families. In addition to describing experiences common to most people affected by epilepsy, each story illustrates a particular issue that has been important to that family and that other families affected by epilepsy may encounter.

These families have generously chosen to share their personal stories with the hope that doing so might help other families address similar issues. That is our hope as well. To see a video profile and essay about a particular family, select one of the stories below. http://www2.massgeneral.org/childhoodepilepsy/families/index.htm

Young Epilepsy App — Managing epilepsy the smart way

No two people with epilepsy are the same. That’s why an innovative, free app that can be tailored to the individual needs of young people, or parents of a child with epilepsy has been developed.

The Young Epilepsy app includes an easy to use seizure video function; symptom log; diary and medical prompts; as well as discreetly stored emergency and contact details.

Charts can be created based on the information entered into the diary to help identify potential patterns, and data is downloadable, so sharing with your school, parents or healthcare team is easy.  Download the app (available for iOS) *FREE*  Available for Android here. (UK)_*FREE*  http://youngepilepsy.org.uk/all-about-epilepsy/epilepsy-app

To request further information, please contact: 01342 832243 ext: 492

You Are Not Alone

A kit made up of audio, video, print and facilitator’s guide to help parents cope with their child’s epilepsy as the child becomes a teenager, and the parent’s role changes. Parents are encouraged to use the kit to learn how to support and encourage their teen to take charge and learn how to manage their seizures and their life. http://www.cdc.gov/epilepsy/toolkit/facilitators_guide.htm

Resources: Free Patient Guidebook and DVD on Epilepsy

The American Academy of Neurology just created a free guidebook and DVD called Epilepsy: A Guide for Patients and Families. Hosted by actor John O’Hurley, this excellent resource will help you learn more about epilepsy, how it’s diagnosed and treated, and how to live with the disease.

To order your free copy, call 800-879-1960. You can also view the video at www.youtube.com/aanchannel and download the guidebook at http://patients.aan.com/go/videos

The Epilepsies: Seizures, Syndromes and Management by C.P. Panayiotopoulos

The latest work from one of the world’s leading experts and offers an exhaustive account of the classification and management of epileptic disorders. In thirteen chapters, Dr Panayiotopoulos gives clear guidance on the diagnosis, treatment and ongoing management of the full spectrum of epileptic syndromes with an insight and perception that only he can bring to the subject. http://www.e-booksdirectory.com/details.php?ebook=1538

PERSONAL ACCOUNTS

Epilepsy in the Family — By Suzanne Yanko

In this readable informative guide, the author has taken a journalist’s approach to the subject, interviewing a number of professionals and telling “real-life” stories. She believes that true understanding lies in personal accounts — from those of families to her own experience with surgery.

The comprehensive section on epilepsy surgery has won an award for its description — from the patient’s point of view. A terrific and interesting resource either for those who have epilepsy or epilepsy in the family.  $26.80 from http://www.amazon.com/ (E-book: $9.99)

Epileptic — By David B.

An award-winning animated novel by one of Europe’s most celebrated comic artists.  It tells the autobiographical story of his family’s struggle with his older brother’s seizures, and their search for a cure. Publishers Weekly has called it, “one of the greatest graphic novels ever published.”  $12.89 from http://www.amazon.com/

Seizure Free : From Epilepsy to Brain Surgery, I Survived, and You Can, Too! By Leanne Chilton  (wonderful!)

Here, in her own words, is one woman’s triumph over epilepsy and brain surgery. It is an informative and positive story designed to give others hope and encouragement while enduring and having to live through seizures, medication, and surgery.  $12.95 from http://www.amazon.com/

Brainstorms: Epilepsy on Our Terms – Stories by Children with Seizures and Their Parents — By Steven C. Schachter, MD; Georgia D. Montouris, MD; John M. Pellock, MD

Firsthand personal accounts of children with seizure disorders and their parents. In their own words, these children and parents vividly describe the experiences of handling the crisis of the initial seizure, adjusting to the diagnosis of epilepsy, coping with seizures, managing medications and side effects, and dealing with health care providers, teachers, schoolmates, siblings, and friends.

“Epilepsy on Our Terms” reveals the terror, uncertainty, and frustration felt by children and parents after an initial seizure or a diagnosis of epilepsy and documents the ongoing trials, tribulations, and triumphs of coping with seizures, medication schedules and side effects, health care providers and hospitals, schoolmates, siblings, relatives, and friends. These accounts provide realistic insights into the myriad issues encountered in living with childhood epilepsy.

It also includes a straightforward medical discussion of childhood seizures, written in layperson’s terms by Dr. Pellock; a glossary of medical terms; and a guide for schoolteachers and parents written by William Murphy, Executive Director of the Epilepsy Association of Massachusetts.

Appendices provide a directory of Epilepsy Foundation of America affiliates; a list of recommended books, publications, and videotapes; and information about the Epilepsy Foundation of America’s Winning Kids program.  $21.95 from http://www.amazon.com/

Brainstorms: Epilepsy in Our Words – Personal Accounts of Living with Seizures -By Steven C. Schachter, M.D.

This book presents a collection of 68 personal accounts from people with epilepsy  illustrating the wide range of experiences associated with seizures and living with epilepsy. Many of these stories are told by people who have had epilepsy for years and their passages are heartfelt and realistic.

An introductory section explains epilepsy and different seizure types from a medical perspective in an easy-to-understand and accessible manner. An index helps readers focus on particular symptoms and other specific aspects of seizures, such as seizure warnings and triggers.  $21.95 from http://www.amazon.com/

Brainstorms: Epilepsy in Our View – Stories from Friends and Families of People Living with Epilepsy — By Steven C. Schachter, MD

A collection of personal stories from friends, family members, and co-workers of people with epilepsy in which they describe their observations and feelings about witnessing seizures and about the person with epilepsy. The book sheds light on the social consequences of epilepsy while increasing understanding of what’s happening when a person has a seizure.  $21.95 from http://www.amazon.com/

Brainstorms: Epilepsy in Our Lives — Women Living with Epilepsy — By Steven C. Schachter, MD; Kaarkuzhali Babu Krishnamurthy, MD; Deborah T. Combs Cantrell, MD

Here is a collection of frank and honest stories from women with epilepsy, told in their own words, describing what life is like with this disorder. Women discuss the impact of epilepsy on their roles as mothers, wives, and individuals, and express their concerns about how epilepsy will affect pregnancy outcome, the health of their babies, and parenting. They also share candidly how epilepsy impacts family planning, fertility, and sexuality.  $22.95 from http://www.amazon.com/

Brainstorms: Epilepsy in Our World – Stories of Living with Seizures from Around the World — By Steven C. Schachter, MD & Lisa Francesca Andermann, MD

This is a collection of frank, first-person narratives by people with epilepsy from 21 countries which offers unique perspectives on the personal and social aspects of seizure disorders. Reflecting a diverse array of cultures, the narratives of this book reveal many common concerns and show the distinct ways that people around the world affected by epilepsy react to the diagnosis and cope with their families, friends, and communities. The book includes chapters on the Global Campaign Against Epilepsy and a physician’s firsthand experience in East Africa.  $22.95 from http://www.amazon.com/

REFERENCE

Epilepsy: 199 Answers: A Doctor Responds to His Patients’ Questions — By Andrew N. Wilner  (Highly recommended!) 

Good information in an encyclopedic format — question by question. It answers in very plain English, the questions a person needs to know first-off when diagnosed. The questions address not only the concerns of a person with epilepsy, but it also addresses issues that family members might want to know.

The Health Record is a great way to help patients help themselves get more out of their doctor visits. The Drug and Medical Information lists important numbers of drug companies so that a person can obtain more information about the drugs they take. The Resource Guide is worth the book alone as it lists support groups, organizations, comprehensive epilepsy centers, summer camps, and other important contacts not just nation-wide, but internationally. Knowledge points the way to a better diagnosis with epilepsy and what questions this book doesn’t address, it guides you to sources that will answer the rest.  $9.93 from http://www.amazon.com/

Epilepsy: Patient and Family Guide, 3rd Edition — By Orrin Devinsky, MD

The new edition of a best-selling book by the preeminent epileptologist Orrin Devinsky, covers a wide range of medical, social and legal issues. Topics include explanation of seizures and epilepsy, information about medication, side effects and risks, and how to get good medical care.

Epilepsy expert Dr. Orrin Devinsky, provides an easy-to-read and comprehensive  resource for people with epilepsy and their families. Ideal for adults with epilepsy or for parents of children with the disorder, the reader will learn about: The nature and diversity of seizures. The factors that can cause seizures or help to prevent them. The risks and benefits of selected anticonvulsants. Medical and surgical therapies for seizures. Various ways diet affects seizures.

This book will educate recently diagnosed patients, as well as those who have been living with epilepsy for years. Filled with reliable and factual knowledge about epilepsy, to dispel uncertainties and fears, build independence, and help patients become their own advocates. $11.30 from http://www.amazon.com/

Women with Epilepsy: A Handbook of Health and Treatment Issues — Edited by Martha J. Morrell, MD and Kerry Flynn, MA

This handbook assembles a team of experts to review the special problems faced by women with epilepsy. Epilepsy treatments affect fertility and can cause pregnancy complications and birth defects, but most of the available drugs have been tested on men. Moreover, hormone effects on seizures are of particular concern to women at puberty, at menopause, and over the menstrual cycle.

Many health-care providers are not informed about the unique issues facing women with epilepsy. This book, published in association with the Epilepsy Foundation of America, fills that gap and provides women with epilepsy with the information they need to be effective self-advocates.  $23.00 from http://www.amazon.com/

Seizures and Epilepsy in Childhood: A Guide for Parents, 3rd Edition — By John M. Freeman, MD, Eileen P.G. Vining MD, and Diana J. Pillas

A comprehensive guide reflecting the latest approaches to the diagnosis and treatment of epilepsy in childhood, this book encourages parents to help their children get involved, be active, and live normal lives despite their seizures.  $15.64 from http://www.amazon.com/

Seized — by Eve LaPlante

Temporal lobe epilepsy (TLE) is the most widespread form of epilepsy among adults, yet TLE seizures are not easily recognized, unlike the far better known convulsions of grand mal epilepsy. In this major study, freelance journalist LaPlante, who interviewed scores of patients and doctors, explores a disease that may affect between one and two million Americans. Some TLE sufferers perform automatic or violent acts; others exhibit hyper-religiosity or altered sexuality. LaPlante reviews the ordeals of Dostoevsky, van Gogh, Lewis Carroll and other luminaries thought to have suffered TLE.

She also graphically profiles three ordinary TLE patients — Charlie, a lawyer minimally affected by the disease; Jill, a personnel director whose confidence has been shattered by her seizures; and Gloria, a retired hairdresser. If TLE often gets misdiagnosed as schizophrenia or mood disorder, as LaPlante suggests, the implications for psychiatry are staggering. .$18 from http://www.amazon.com/

Epilepsy a New Approach — By Adrienne Richard & Joel Reiter

Richard, who has controlled her seizures without drugs for 15 years, and Reiter, a neurologist, combine the most recent medical updates with information on self-help alternatives, and discuss diagnosis, treatment options, behavioral methodologies, and more. Included are sections on biofeedback, psychotherapy, nutrition, relaxation, exercise, stress reduction, and journal keeping.  $19.95 from http://www.amazon.com/

With thanks to the EFA, it’s many different chapters and the wise people on epilepsy forums.

Another new guide: Resources: Free Patient Guidebook and DVD on Epilepsy  http://journals.lww.com/neurologynow/Fulltext/2013/09030/Resources__Free_Patient_Guidebook_and_DVD_on.7.aspx

CEA launches new epilepsy comic book for children  http://www.news-medical.net/news/20140821/CEA-launches-new-epilepsy-comic-book-for-children.aspx

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2 Comments

Everyone knows that listening to music can be calming — a steady rain storm can induce sleep — and white noise can help keep focus at bay.

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2014-2015 Top-Ranked Pediatric Hospitals for Neurology & Neurosurgery

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For the 2014-15 rankings, U.S. News surveyed 183 pediatric centers to obtain clinical data in 10 specialties and asked 150 pediatric specialists in each specialty where they would send the sickest children.

Here are the top-ranked centers for children with serious neurological problems, ranked in order…


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2 Comments

Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.


2014-2015 Top Rated Regional Hospitals Across the U.S.

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2 Comments

For those who can’t travel to big cities, The U.S. News & World Report has compiled a directory of the top medical centers and high performing hospitals across the country.

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2014-2015 Top Ranked Neurology and Neurosurgery Hospitals

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Attached is a link to the current list of top ranked neurology and neurosurgery hospitals…


Epilepsy Glossary — 100+ Terms Defined

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2 Comments

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17 Comments

I started this article assured that vaccinations of infants with epilepsy was a definite no-no.

And boy, was I surprised.

Basically, medical research has proved me wrong. Real wrong.


12 Epilepsy Travel Tips

July 8, 2014
9 Comments

Traveling has never been easy, and people with epilepsy have always had to think twice about safety and managing medications while traveling. Since September 11, 2001, taking a trip has become even more difficult for people with epilepsy and their family members…


The benefits of relaxation…

July 5, 2014
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Many studies have found that greater than 50% of people experienced declines in seizure frequency just by using relaxation techniques!

Here are a few suggestions…


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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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