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Introduction to Epilepsy and This Site

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A child's first seizure or an epilepsy diagnosis can rock a family at its core. Immediately questions arise, such as, "What caused the seizure? Will my child have another seizure? Can my child lead a normal life with epilepsy?" These and countless other concerns are legitimate and normal for families. This introduction aims to help answer some of the questions that typically arise for families affected by epilepsy. The section also introduces some of the topics that the Web site explores in greater detail elsewhere. Children with epilepsy can live full, happy, healthy lives. This site aims to help you understand epilepsy, care for your child, and work with medical providers and others to secure the best possible outcome for your child. In this section you will find:

Epilepsy and Seizures Defined

Epilepsy, sometimes called "seizure disorder," is a neurological condition that manifests itself as a susceptibility to seizures. Individuals diagnosed with epilepsy have typically experienced two or more seizures as a result of factors other than preventable conditions, such as fever or low blood sugar levels, which can cause seizures but are not necessarily indicative of epilepsy.

A seizure is a sudden surge in electrical activity in the brain that causes an alteration in sensation, behavior, or consciousness. Seizure types can vary greatly from one individual to the next. They may cause momentary loss of consciousness, staring spells, repetitive movements, or convulsions involving the entire body. An individual may experience only a single type or more than one type of seizure.

To learn more about seizures and epilepsy, see the sections on The Brain and Seizure Types and Syndromes.


Dr. Elizabeth Thiele

In this video, epileptologist Elizabeth Thiele, MD, PhD, describes what a seizure is and its relationship to epilepsy. [duration 0:55]
Show Video | Read Transcript

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A Brief History of Epilepsy

Epilepsy is thought to be one of the oldest medical conditions and may be as old as humankind itself. Some of the earliest medical texts describe events that likely were seizures. Throughout history, few disorders have garnered as much attention as epilepsy.

In 400 B.C., the Greek physician Hippocrates wrote the first book about epilepsy, called On the Sacred Disease, in which he defines epilepsy as a brain disorder and debunks the long-held notion that it is somehow divine or sacred in origin.

Misperceptions about epilepsy continued after Hippocrates, however. For example, in the fifteenth century, seizures were thought to be characteristic of witches. Seizures were also considered clear signs of satanic possession, and in some areas this view was held well into the nineteenth century.

Three English neurologists—John Hughlings Jackson, Sir John Russell Reynolds, and Sir William Richard Gowers—initiated the modern medical view of epilepsy beginning in 1859. Jackson defined a seizure as "an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles."

This understanding of seizures and epilepsy paved the way for future research and some of the disorder's first effective treatments. Since the mid-nineteenth century there has been a series of advances in epilepsy medicine and treatments. Phenobarbital, the oldest anticonvulsant drug still in common use, was developed in 1912; the ketogenic diet was first put into use in 1920; and the electroencephalogram, or EEG, was developed in 1929. From the twentieth century on there has been a steady stream of new epilepsy treatments and breakthroughs in medical understanding.

For a list of anticonvulsant medications, see the Treatment section.

Alongside medical advances, significant progress has been made in reducing the social stigma and discrimination sometimes associated with epilepsy. This effort has been led by organizations such as the Epilepsy Foundation of America, founded in 1968, and legislation such as the Americans with Disabilities Act of 1990.

Today medical researchers are actively pursuing better treatments for epilepsy and ultimately a cure. At the same time, local, regional, national, and international epilepsy organizations are working to educate people about the disorder in an effort to eliminate stigma and discrimination.

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A Snapshot of Epilepsy Today

quote from Elizabeth Thiele
 

Epilepsy affects between 1 and 3 percent of the population. In the United States alone, approximately 180,000 new cases of epilepsy are diagnosed each year, and in 2004, 2.7 million Americans were living with the disorder.

Epilepsy affects people of all ages, both sexes, and all ethnic groups. Children under the age of 2 and adults over 65 are more likely to develop epilepsy than any other age group. This is explained in part by changes that occur in the brains of people early and late in life. During childhood brain development, for example, seizures are not only more likely to occur, they also spread more readily than in a fully developed brain. The rise in the incidence of epilepsy in adults as they age is due to changes in the brain caused by tumors and strokes and other brain abnormalities.

Approximately 300,000 American children under the age of 14 have epilepsy, with approximately 45,000 diagnosed each year. Males have a slightly higher incidence than females, and socioeconomically disadvantaged populations may also be at higher risk for the disorder.


Dr. Elizabeth Thiele

In this video, epileptologist Elizabeth Thiele, MD, PhD, explains the differences between epilepsy in children and in adults. [duration 1:08]
Show Video | Read Transcript

In approximately 70 percent of cases, no cause can be determined. Of the known causes of epilepsy, some of the most common are brain injury, abnormal brain development prior to birth, lack of oxygen during or following birth, infection of the brain or surrounding tissues, and abnormal structures such as tumors in the brain. Although genetics likely plays a role in many cases of epilepsy, in most cases it is impossible to determine a clear pattern of inheritance from one family member to another.

To learn more about the causes of epilepsy, see the Causes section.

Anticonvulsant medications are the first line of treatment for epilepsy. In approximately half of all cases, seizures are controlled or eliminated with a single medication—often the first medication prescribed—and these success rates have improved as new drugs have been developed. Approximately one-third of childhood epilepsy cases are said to be intractable, meaning that two or more medications have failed to control the child's seizures. In these cases, physicians typically pursue other treatment options, including dietary therapies, surgery, or vagus nerve stimulation.

Finding an effective treatment sometimes takes time. However, due to the variety of options available, many children with epilepsy can expect their seizures to be fully controlled and can look forward to living full, happy, productive lives.

To learn more about available treatment options, see the Treatment section.

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Frequently Asked Questions About Epilepsy

Cherinee in karate class

Eleven-year-old Cherinee is involved in a karate program with other children who have epilepsy.

 

What is epilepsy?

Epilepsy is a neurological condition that causes an individual to have two or more seizures that are not provoked by preventable causes.

What is a seizure?

A seizure is a sudden burst of rhythmic discharges of electrical activity in the brain that causes an alteration in sensation, behavior, or consciousness.

What causes epilepsy?

For 70 percent of individuals with epilepsy, physicians are unable to determine a cause. These cases are called idiopathic. Known causes of epilepsy include brain injury, developmental abnormalities, tumors, blood clots, and infections.

Is epilepsy contagious?

Epilepsy is not contagious and thus cannot be passed through contact from one individual to another.

How is epilepsy diagnosed?

An epilepsy diagnosis is typically based on the occurrence of two or more seizures. Physicians typically determine this through detailed medical histories of patients based on eyewitness descriptions of seizures from family members. In addition, physicians analyze electrical activity in the brains of individuals suspected of having epilepsy using an electroencephalogram, or EEG.

To learn more about the diagnosis of epilepsy, see the Diagnosis section.

How is epilepsy treated?

Anticonvulsant medications are the first line of treatment for epilepsy. Other treatments include dietary therapies, surgery, and a device called a vagus nerve stimulator, or VNS.

What should be done following a child's first seizure?

The answer to this question depends largely on the case. Physicians typically recommend monitoring a child for subsequent seizures, either through careful observation and/or by analyzing electrical activity in the brain using an electroencephalogram, or EEG. The decision to treat a child for seizures depends on the probability that the child will experience seizures in the future as determined by a medical professional. If this probability is high, a child should be treated for epilepsy regardless of how many seizures he or she has had in the past.

Are seizures bad for the brain?

At present, too little is known about the effects of seizures on neuron structure and function to understand how they affect the brain or what their long-term effects might be. This is a current area of research.

Are seizures considered a medical emergency?

Most seizures are self-limited, last less than a few minutes, and do not require immediate medical attention. Occasionally, however, a seizure will persist for longer, or an individual will experience back-to-back seizures without sufficient recovery time in between. This condition is called status epilepticus and should be considered a medical emergency. Although physicians debate the duration of status epilepticus events, most define this state as any seizure lasting 15 minutes or more. In rare cases, if left untreated, status epilepticus may cause respiratory arrest and death.

To learn more about seizure first aid, see the Activities, Safety, and First Aid section.

To learn more about seizure types and to see a video segment about status epilepticus, see the Seizure Types and Syndromes section.

Is it possible to die from a seizure?

As mentioned above, it is possible, though rare, to die from a condition of prolonged seizures called status epilepticus. In another very rare condition known as sudden unexplained death in epilepsy, or SUDEP, individuals with epilepsy die from unknown causes. Experts think that most cases of SUDEP result from an abnormal heart rhythm and/or impaired respiration. However, little is known about this condition because it occurs in only about 1 in 3,000 people with epilepsy each year.

How can individuals with epilepsy avoid seizures?

The best course of action to guard against future seizures is to follow a treatment plan prescribed by a qualified physician. This typically involves taking medications as prescribed and having regular medical evaluations. In addition, physicians recommend getting sufficient and regular sleep, and avoiding stressful situations. It may also be possible to identify specific triggers that increase the risk of a seizure and find ways to avoid these. It is still possible for individuals who follow all of these recommendations to experience recurrent seizures.

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An Introduction to This Site

quote from Elizabeth Thiele
 

The Growing Up with Epilepsy Web site is an educational resource intended to impart hope and to deliver baseline understanding of pediatric epilepsy and the varied ways that it affects children and families. An educational resource for anyone affected by childhood epilepsy—including children with the disorder, parents, siblings, and other family members, as well as teachers and other caregivers—the Web site attempts to provide information on a wide range of topics, which can be found under these headings: Overview, The Medical Perspective, The Whole Child, and Family Stories.

The Overview section of the site provides general information about epilepsy, the brain as it relates to the disorder, and seizure types and syndromes. The Medical Perspective section explores epilepsy from the perspective of physicians and other specialists, as well as parents and children who work in collaboration with the medical team to develop a comprehensive plan for treating a child's epilepsy. The Whole Child section looks at aspects of life with epilepsy that were once overlooked. These important areas include learning, mental health, and activities. Throughout all of these sections, short video interviews with epilepsy specialists provide further insights into the topics covered and explanations of complex concepts.

The site also provides a way to learn about many of these topics through personal stories of children with epilepsy and their families. Each family story, as told through a video profile and an essay, introduces you to real people affected by epilepsy and illustrates an issue that has been particularly important to that family and many other families living with epilepsy.

Caroline at dinner

With all of its challenges, epilepsy doesn't have to compromise the quality of family life.

 

The Brain Interactive provides an opportunity to explore seizure types as they relate to brain anatomy and function. This interactive uses video, computer simulations, and still imagery to explain and illustrate the connection between seizures and the brain.

Throughout, the site uses terminology that is consistent with that currently used in medical practice and in the care of children with epilepsy. Because some of the terms used may not be familiar to all visitors to the site, we provide a glossary containing the more technical or unusual of these terms. This glossary may be accessed in whole by clicking on the glossary link, or particular terms contained in the glossary may be accessed by clicking on those that are highlighted in the text.

Unfortunately, this site cannot be a comprehensive resource for everyone. Some people coming to the site will have been living with and educating themselves about epilepsy for years, while others will have received a diagnosis from their physician only recently. However, it is our hope that the site will provide valuable insight and information to all families affected by epilepsy, no matter what their previous experience with the disorder.

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Brain interactive image

Seizures in the temporal lobe are very common and can cause speech and language disturbances as well as changes in mood or personality.

 
 

This content was last reviewed on November 20, 2006.