Eric H. Kossoff - Ketogenic diets : treatments for epilepsy and other disorders

KETOGENIC DIETS

Treatments for Epilepsy and Other Disorders

Treatments for Epilepsy and Other Disorders

FIFTH EDITION

Eric H. Kossoff, MD
John M. Freeman, MD
Zahava Turner, RD, CSP, LDN
James E. Rubenstein, MD

Acquisitions Editor: Noreen Henson
Cover Design: Steven Pisano

Compositor: Apex CoVantage

Printer: Bang Printing

ISBN: 978-1-936303-10-6
E-ISBN: 9781617050640

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2011 Kossoff, Freeman, Turner, Rubenstein. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher.

Medical information provided by Demos Health, in the absence of a visit with a healthcare professional, must be considered as an educational service only. This book is not designed to replace a physicians independent judgment about the appropriateness or risks of a procedure or therapy for a given patient. Our purpose is to provide you with information that will help you make your own healthcare decisions.

The information and opinions provided here are believed to be accurate and sound, based on the best judgment available to the authors, editors, and publisher, but readers who fail to consult appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions. The editors and publisher welcome any reader to report to the publisher any discrepancies or inaccuracies noticed.

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Important Note to Readers

This book introduces the ketogenic diet to physicians, dietitians, and parents of children with difficult-to-control seizures who might benefit from the treatment. This book is not intended to be an instruction manual. A book cannot take into account the specific needs of any individual patient. As with any course of treatment for epilepsy, a decision to try the ketogenic diet must be the result of a dialogue between the parents and their childs physician.

THIS DIET SHOULD ONLY BE INITIATED under the supervision of a physician and a trained dietitian or nurse.

If you are reading this book, we assume that you are familiar with the basic descriptions of epilepsy and what they mean. This is not a book about seizures or epilepsy. This is about one form of treatment for epilepsythe ketogenic diet.

This book is dedicated to the memory of Ms. Diana Pillas

Courtesy of Mr. Keith Weller, photographer.

Diana was the face of the John M. Freeman Pediatric Epilepsy Center for three decades until her unfortunate death due to breast cancer in February 2010. She was the heart and soul of our center, providing advice, support, and a shoulder to cry on for countless parents and children.

She was the primary source of information for those families specifically considering dietary therapy, and based on many factors, she would even sometimes discourage some families from the diet. For these families, she would often suggest a treatment that would be more likely to succeed. Other times, she would fight with insurance companies and usually encourage me to squeeze in a child she knew in her heart would do great on the diet.

There was nothing we loved more than seeing Diana smile and nod knowingly when we told her a child she helped put on the diet was seizure-free. Wed like to think somewhere she is reading this book and smilingmany of her creative ideas led to research projects, which then made the diet easier and more effective for children around the world. Her incredible insight, wisdom, and love for children are sorely missed.

On March 11, 1993, I was pushing my 1-year-old son, Charlie, in a swing when his head twitched and he threw his right arm in the air. The whole event was so subtle that I didnt even think to mention it to my wife, Nancy, until a couple days later when it recurred. She said she had seen similar incidents. That was the beginning of an agony I am without words to describe.

Nine months later, after thousands of seizures, an incredible array of drugs, dozens of blood draws, eight hospitalizations, a mountain of EEGs, MRIs, CAT scans, and PET scans, one fruitless brain surgery, five pediatric neurologists in three cities, two homeopaths, one faith healer, and countless prayers, Charlies epilepsy was unchecked, his development delayed, and he had a prognosis of continued seizures and progressive retardation.

Then, in December 1993, we learned about the ketogenic diet and the success that Dr. John Freeman, Millicent Kelly, RD, and Diana Pillas had been having with it at Johns Hopkins Hospital as a treatment for children with difficult-to-control epilepsy. We took Charlie to Johns Hopkins. He started the diet. Charlie was seizure- and drug-free within a month. Today, he is a happy, healthy, 18-year-old high school senior. He eats whatever he wants, has no recollection of his epilepsy, and has very little memory of his 5 years of diet therapy.

Back in 1994, when we realized that a vast majority of Charlies seizures and most of his $100,000 of medical, surgical, and drug treatments were unnecessaryeven harmfulwe founded The Charlie Foundation To Help Cure Pediatric Epilepsy in order to help promote and increase the diets usage. Among other efforts, we supported the first edition of The Epilepsy Diet Treatment.

Today, though the mechanisms of diet therapy remain the same, the diet itself has grown in accessibility, palatability, understanding, and popularity almost as much as the now 61 Charlie has grown in height. Due in large measure to the earlier editions of this book, many of the myths that impeded my family, and so many others, from awareness and access to diet treatment have been dispelledleading to a ground swell of patient and parent knowledge and empowerment. Most importantly, this has led to thousands of healthier children.

It is our continued hope that Ketogenic DietsTreatments for Epilepsy and Other DisordersFifth Edition will help others decide whether the diet is a viable alternative to their current treatment.

And we know this book will be an invaluable guide once diet therapy has begun.

Jim Abrahams, Director
The Charlie Foundation to Help Cure Pediatric Epilepsy

Back in the dark ages of the ketogenic diet during the 1980s, the response to a diet that was 90% fat was, Yuck! Everyonephysicians, the public, and parentsall knew that such a high fat diet was unpalatable, unhealthy, and couldnt possibly be a treatment for anything. Fat was thought to be bad, and the ingestion of such a diet would inevitably lead to heart disease, strokes, and death. A diet for treating epilepsy? Crazy, were still trying to find the proper medication(s). Were not looking for unsubstantiated alternative therapy. All thats true is rarely new, and all thats new is rarely true.