Epilepsy Foundation's Information on Epilepsy

Information About Epilepsy

Common Myths & Misconceptions About Epilepsy	Facts and Figures
Ketogenic Diet	Books and Publications

Twelve Common Myths & Misconceptions About Epilepsy

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You can swallow your tongue during a seizure. It's physically impossible to swallow your tongue.
You should force something into the mouth of someone having a seizure. Absolutely not! That's a good way to chip teeth, puncture gums, or even break someone's jaw. The correct first aid is simple. Just gently roll the person on one side and put something soft under his head to protect him from getting injured.
You should restrain someone having a seizure. Never use restraint! The seizure will run its course and you cannot stop it.
Epilepsy is contagious. About as contagious as a gun-shot wound! You simply can't catch epilepsy from another person.
Only kids get epilepsy. Epilepsy happens to people over age 65 almost as often as it does to children aged ten and under. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
People with epilepsy are disabled and can't work. People with the condition have the same range of abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful and productive in challenging careers.
People with epilepsy shouldn't be in jobs of responsibility and stress. People with seizure disorders are found in all walks of life and at all levels in business, government, the arts and the professions. We aren't always aware of them because many people, even today, do not talk about having epilepsy for fear of what others might think.
With today's medication, epilepsy is largely a solved problem. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's a critical need for more research.
Epilepsy is rare and there aren't many people who have it. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may accompany other conditions affecting the brain, such as cerebral palsy, mental retardation, autism, Alzheimer's, and traumatic brain injury.
You can't die from epilepsy. Epilepsy is still a very serious condition and individuals do die of it. Experts estimate that prolonged seizures (status epilepticus) are the cause of 22,000 to 42,000 deaths in the U.S. each year. In a major study of status epilepticus, 42% of deaths occurred in individuals with a history of epilepsy.
You can't tell what a person might do during a seizure. Seizures commonly take a characteristic form and the individual will do much the same thing during each episode. His behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.
People with epilepsy are physically limited in what they can do. In most cases, epilepsy isn't a barrier to physical achievement, although some individuals are more severely affected and may be limited in what they can do. Professional sports players with epilepsy have included Greg Walker (Chicago White Sox- baseball), Bobby Jones (Denver Nuggets & Philadelphia '76ers-basketball), and Gary Howatt (New York Islanders- hockey).

Facts and Figures

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Epilepsy is a generic term used to define a variety of seizure disorders. A person with recurring seizures is said to have epilepsy.

A seizure is a disturbance in the electrical activity of the brain. Twenty-five million Americans (one in every ten) have had, or will have, a seizure at some point in their lives.

Prevalence: About 2,500,000 people in the U.S. have some form of epilepsy. Thirty percent of them are children under the age of 18. A large number of children and adults have undetected or untreated epilepsy.

Incidence: About 125,000 newly diagnosed cases each year.

Age of onset: Epilepsy primarily affects children and young adults, although anyone can get epilepsy at anytime. Twenty percent of cases develop before the age of five. Fifty percent develop before the age of 25. It is also increasingly associated with the elderly, and there are as many cases of epilepsy in those 60 years of age and older as in children 10 years of age and under.

Causes: In about 70% of cases there is no known cause. Of the remaining 30%, the following are the most frequent:

Head trauma, especially from automobile accidents, gunshot wounds, sports accidents, falls and blows at work or in the home. The more severe the injury, the greater the risk of developing epilepsy.

Brain tumor and stroke.

Poisoning, such as lead poisoning. More than 5,000 people each year are reported to suffer seizures caused by alcoholism.

Infection, such as meningitis, viral encephalitis, lupus erythmeatosus and, less frequently, mumps, measles, diptheria and others.

Maternal injury, infection or systemic illness affecting the developing brain of the fetus during pregnancy.

Role of heredity: All people inherit varying degrees of susceptibility to seizures. The genetic factor is assumed to be greater when no specific cause can be identified.

Treatment: Modern treatment methods can achieve full or partial control of seizures in about 85 percent of cases. Some seizure disorders of infancy and early childhood are still highly resistant to current therapies.

Medical - major form of treatment is long-term anticonvulsant drug therapy. Some 20 antiepileptic drugs are currently in use. While multiple-drug therapy is sometimes necessary, single-drug therapy is more common.

Surgical - used only when medication fails. Most common form takes place when the brain tissue causing seizures is confined to a small focal area of the brain that can be safely removed without damaging personality or function.

Dietary - a special high-fat, high calorie diet may succeed in some childhood cases when standard treatment fails.

Major problems:

Treatment - Despite available therapies, an estimated 15 percent do not have complete seizure control and a similar proportion of cases is virtually resistant to current drug therapy. New medications with fewer side effects are desperately needed both for cases resistant to treatment and for patients under multiple-drug therapy for whom monotherapy is not yet possible.

Diagnosis - There is more than 20 different seizure disorders. Recent international reclassification of symptoms, along with improved brain wave monitoring technology, new and efficient methods to precisely measure blood drug levels, non-invasive brain imaging and brain function measurement technologies, now permit the more specific diagnosis and treatment of epilepsy. Convulsive seizures are easily recognized. But there are other less apparent forms of epilepsy marked by non-convulsive seizure types. These seizures affect awareness, produce brief loss of muscle control and may involve sensory distortions. Early diagnosis is crucial. Children and adults with undiagnosed seizures risk developing a more severe, more difficult to treat condition.

Unemployment/Underemployment - 20-30 percent of people with epilepsy and physically able to work are unemployed. Many of those who are employed have been forced to accept positions far below their ability and educational achievement. For many people, having epilepsy has been less of a problem than overcoming negative attitudes about their intellectual and physical abilities. Changes in the law, especially provisions of the Americans with Disabilities Act, offer new hope in this area.

Impact on Children - The National Center for Health Statistics reports 422,000 cases of epilepsy in children 18 years of age and under, based on the 1988 National Health Interview Survey. Of these children, 65.5 percent of 276,500 have special needs ("condition caused problems during the past year, such as missing school, staying in bed or feeling upset most or all of the time").

Mortality - Epilepsy carries an increased risk of death from a variety of causes. Most seizures are benign, but a prolonged seizure can evolve into status epilepticus, a condition that sometimes leads to brain damage and, occasionally, death. People with epilepsy also have a greater than average fatality rate for suicide, sudden unexplained death syndrome, and accidental death, especially drowning.

For Adults:

Books and Publications

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Alice, Sara Flanigan, New York: St. Martin's Press 1988. A novel about a young girl, set in the American south of the 1930s. (The book was successfully turned into the made-for-cable movie "Wildflower," directed by Diane Keaton.)
Brainstorms: Epilepsy in Our Own Words, personal accounts of living with seizures, edited by Steven C. Schachter, M.D., New York: Raven Press, 1992.
The Brainstorms Companion: Epilepsy in our View, Family members, friends and co-workers of people with epilepsy describe their observations and feelings about witnessing seizures, by Stephen C. Schachter, M.D., New York: Raven Press, 1994.
The Brainstorms Family: Epilepsy On Our Terms, focuses on children with epilepsy and their parents, by Stephen C. Schachter, M.D., New York: Raven Press, 1996.
Children with Epilepsy: A Parent's Guide, information from parents and professional about therapy, coping skills and special issues that arise when a child has epilepsy, edited by Helen Reisner, the mother of a child with epilepsy, Rockville, MD: Woodbine House, Inc., 1988.
A Conversation with Neil's Brain, inside the operating room account of epilepsy surgery and the mapping of brain function, by Drs. William H. Calvin and George A. Ojemann, Reading, MA: Addison-Wesley Publishing Company, 1994.
Does Your Child Have Epilepsy?, establishes "Ten Basic Rules" for parents of children with epilepsy and addresses the initial fears parents have, by James E. Jan, M.D., University Park Press, 1983.
Embrace the Dawn, biography, Andrea Davidson, Sylvan Creek Press, 1989.
The Epilepsy Diet Treatment, discussion of the ketogenic diet sometimes used to treat children with intractable seizures, John M. Freeman, M.D., and Millicent T. Kelly, R.D., L.D., New York: Demos Publications, 1994.
The Falling Sickness: A History of Epilepsy From the Greeks to the Beginning of Modern Neurology, by Owseo Temkin, The Johns Hopkins University Press, 1994. A softcover reprint of a 1971 revised edition. A written history of epoilepsy from antiquity through the Middle Ages and Renaissance to the 19th Century.
A Guide to Understanding and Living with Epilepsy, comprehensive information and guidance on medical and social aspects of epilepsy, including material on multiple disabilities and severe forms of the disorder, by Orrin Devinsky, M.D., Philadelphia: F.A. Davis Company, 1994.
Epilepsy: 199 Answers; A doctor responds to his patients'questions about epilepsy, by Andrew N. Wilner, M.D., New York: Demos Vermande Publications 1996.
Living Well With Epilepsy, advocates taking charge of one's life and trying new experiences that will bring personal enrichment, chapters by leading experts, edited by Robert J. Gumnit, M.D., New York: Demos Publications, 1990.
Miles to Go Before I Sleep, biography; shot in the head and left to die, hijack victim Jackie Nink Pflug rebuilds her life after battling epilepsy, depression, severe vision loss, and traumatic memories. Hazelden Publishers, 1996.
Seizures and Epilepsy in Childhood: A Guide for Parents, for parents who want to understand as much as possible about the causes, mechanisms, treatment and social aspects of epilepsy, John M. Freeman, M.D., Eileen P.G. Vining, M.D., and Diana J.Pillas, Baltimore: The Johns Hopkins University Press, 1990.
Epilepsy A to Z, a glossary of epilepsy terminology, by Peter W. Kaplan.

For Young Readers:

Dotty the Dalmation Has Epilepsy, for ages 2 to 6, Dr. Wellbook, New York: Tim Peters and Company, 1993. Dotty the Dalmation has epilepsy, but learns to accept her seizures and goes back to her job helping fire-fighters save lives.
Julia, Mungo and the Earthquake, for elementary grades, Saxby Pridmore, M.D., and Mary McGrath, New York: Magination Press, 1991. Tells the story of a young girl with epilepsy who becomes the school heroine.
Lee, the Rabbit with Epilepsy, for ages 3 to 6, Deborah M. Moss, Kensington, MD: Woodbine House, Inc., 1989. This brightly illustrated picture book follows the adventures of a small rabbit who has seizures.

* Most of these titles are available through EFA's Catalog Sales Department, (301) 459-3700

The Johns Hopkins Ketogenic Diet Fact Sheet

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This fact sheet contains answers to some of the most commonly asked questions about the diet.

What is the ketogenic diet? The ketogenic diet is a high-fat, very low carbohydrate diet used in children who have epilepsy that is difficult to control with current medications. The diet should be considered for children who have more than two seizures per week despite treatment with at least two different anticonvulsant medications. The diet is also used when the frequency of seizures, despite medications, interferes with the child's function, or when the medications themselves cause substantial adverse reactions. This diet is not currently being used in adults.

Who can be helped by the diet, and how much? Many children with epilepsy can be helped by the diet. There is no way to predict whether it will be successful--except to try it. Traditionally, the diet has been used in children between 2 and 10 years of age; however, we have used it in children as young as one year, and in teens. Its use in adults has been limited and there is, as yet, no information about the effectiveness in adults. The diet seems to be most effective in children with 'drop' type (myoclonic, atonic, or tonic-clonic) seizures, or with the Lennox-Gastaut syndrome. When traditional anticonvulsant medications have not been effective, or if they produce unwanted side effects, the ketogenic diet may be an alternative.

How effective is the diet? Studies done over many years suggest that 20%-25% of children on the ketogenic diet will have their seizures well controlled. An additional 30%-40% of children will have their seizure frequency decreased by 50%. Approximately 25%-30% of patients who try the diet will find, after one to two months, that it is not sufficiently effective. These return to the use of medications. Some children may be able to decrease or discontinue their medications while on the diet.

How does the diet work? No one is certain how the diet works. Fasting (no eating) produces ketosis, because the body is unable to completely burn the fat it is using for energy. The ketones are the by-products of the incompletely burned fat. The ketogenic diet is a high-fat, low-carbohydrate diet which simulates the biochemical changes of starvation. In the virtual absence of glucose (or other carbohydrates) the body, and more especially the brain, is able to burn these ketone bodies for energy. How the burning of these ketones controls seizures is unknown.

What is the diet all about? Ketosis is produced by eating foods which are ketogenic (fats) and avoiding foods which are anti-ketogenic (carbohydrates). The dietitian will calculate how many calories a child needs for energy and for growth. This amount is about 75% of the usual recommended daily allowance (RDA) for the child's age. The diet is usually started in a 4:1 ratio (4 parts fat to 1 part protein and carbohydrate) or in a 3:1 ratio. The dietitian calculates the meal plans. Each meal is precisely calculated to create a ketogenic formula.

The diet is usually started in the hospital and is always done under careful medical supervision. It is usually started by fasting the child for 48 hours and giving limited amounts of water. Throughout the fasting stage, it is important to monitor the child carefully to be certain he/she does not become too dehydrated; that the blood sugar does not drop too low, and that the medications do not cause the child to become toxic. Most children tolerate this period well. Once the child has large amounts of ketones in the urine, the diet is gradually introduced. The child is discharged on the fifth day, having started the full diet. Throughout the hospitalization the parents are instructed about the diet, including how to weigh and measure the foods and avoid products or medications which contain carbohydrates.

Even small amounts of carbohydrates such as a cookie, several nuts, or carbohydrate-containing toothpaste or antibiotics may eliminate the ketosis and nullify the effects of the diet. Fluid intake is also moderately restricted.

Are children getting enough to eat on this diet? The portions of food on the ketogenic diet are small by usual standards, but the diet is calculated to provide every thing the child needs to grow and to gain weight very slowly. The diet requires vitamin and mineral supplements.

Doesn't a high-fat diet cause heart disease and strokes? While the effects of the diet on blood cholesterol and other lipids are under investigation, there is currently no evidence that the diet causes early heart disease or strokes.

What are the benefits of the diet? The obvious benefit of the diet is the potential for seizure control. Sometimes, seizures are controlled as soon as the child becomes ketonic, but this effect may sometimes take as much as a month or longer. Another benefit is that frequently the anticonvulsant mediations can be reduced gradualy or discontinued. This can, in some cases, provide a child seizure control without the side effects of medication.

How restrictive is the diet? The diet is very restrictive, but the restrictions are usually worthwhile if sezures stop or are significantly reduced. Only the foods and the quantities calculated into the diet can be consumed. Medications which are not sugar-free must be avoided.

Are there complications with this diet? During the initiation of the diet there may be nausea, vomiting, and even low blood sugars. This is the reason for starting the diet in the hospital. The ketosis decreases the child's appetite, so even though the portions are small, hunger is not a problem for most children. Occasionally children develop kidney stones, but adjustment of the calcium supplements in the kiet and increasing the daily fluids usually resolves the problem. Constipation is often a problem. Ketosis increases absorption of some medications; therefore each child should be monitored for toxicity, and medication dosage should be adjusted when necessary. The goal is for the child to be on as little medicine as possible, or medication free.

Are there different ketogenic diets? The main variation of the diet is the MCT (medium-chain triglyceride) diet which allows a lightly greater proportion of carbohydrates and protein while maintaining ketosis. While reported to be as effective as the traditional diet, it seems less well-tolerated causing nausea, vomiting, cramps, and diarrhea. We often add small amounts of MCT oil to our diet to increase ketosis and to decrease the constipation.

How long must the child remain on the diet? When a child's seziures are well controlled, we continue the diet for two years. If seizures are controlled, we then decrease the diet to a 3:1 ration and after six months to a 2:1 ratio. If the seizures recur, we increase the ratio once again. Seizure control will return. We then continue the diet for another year. Children, whose seizures are improved but not controlled may remain on the diet for many years.

THE DIET SHOULD ONLY BE USED UNDER THE SUPERVISION OF PHYSICIANS WHO ARE FAMILIAR WITH THE DIET, AND UNDER THE DIRECTION OF DIETITIANS WHO HAVE EXPERIENCE WITH THE DIET.

A team approach, which includes the child's parents, is essential to the success of this treatment. Families need extensive training and support throughout the initial phases of the diet. Finding the appropriate mix of calories, ketosis, medications, and fat ratio is an art which requires trial and error as well as sophistication. There is not a standard set of menues that will apply to all children, or even to all children of the same weight. Access to the keto team for assistance in the 'fine-tuning' of the diet is the most important ingredient in success. Coaching from parents whose children have been on the diet can provide much needed support for anxious parents during the early phases of the diet, and can relieve some of the burden on the hospital staff.

What are the problems you most frequently encounter? The most common problems are: too many calories seen as weight gain in the child. One hundred extra calories per day equals one poiund of weight gain per month. Children should lose weight during the fasting and the initial phases of the diet, and regain their initial weight over about one year. Blood in the urine, or gravel in the diaper are signs of kidney stones. The child needs to see the physician and the urine needs analysis. Most commonly, this is due to excess calcium excretion. Excess sleepiness is virtually never due to the diet, but will respond to decreasing medication. Continued seizures on the diet may also decrease when medications are decreased.

Can the diet be used in a severely handicapped child? Yes. Children profoundly handicapped with seizures may have the diet given as the tube feedings (or gastrostomy feeding) if necessary.

Further information about the ketogenic diet may be obtained from a video and a book about the diet.

The video is available from the Charlie foundation, 1223 Wilshire Boulevard, Santa Monica, CA 90403. Phone 1-800-FOR KETO (1-800-367-5386).

The book, The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet, may be obtained from Vermande Publishers, 386 park AVenue South, New York, NY 10016. Phone 1-800-532-8663 or (212) 683-0072 or from the Epilepsy Foundation of America, at 4351 Garden City Drive, landover, Maryland, 20785, or call 1-800-213-5821 or 301-349-3700.