Epilepsy

(Other health impairment)

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) includes epilepsy under “other health impairment,” which means…

"…having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems such as asthma, attention deficit disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and adversely affects a child's educational performance."

[34 code of Federal Regulations §300.8(c)(9)]

OTHER DEFINITIONS

Seizures and epilepsy are not the same. An epileptic seizure is a transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. Epilepsy is a disease characterized by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition.

A person is considered to have epilepsy if they meet any of the following conditions:

There are many different types of seizures. People may experience just one type or more than one. The kind of seizure a person has depends on which part and how much of the brain is affected by the electrical disturbance that produces seizures.

(Epilepsy Foundation, 2019)

TYPES

Seizures may be characterized by motor and/or non-motor symptoms. These different types of seizures fall under one of three classifications:

Generalized Onset – seizures that affect both sides of the brain or groups of cells on both sides of the brain at the same time.

Focal Onset – the term focal is used instead of partial to be more accurate when talking about where seizures begin. Focal seizures can start in one area or group of cells in one side of the brain

Unknown Onset – when the beginning of a seizure is not known, it’s now called an unknown onset seizure. A seizure could also be an unknown onset if it’s not witnessed or seen by anyone, for example when seizures happen at night or in a person who lives alone.

(Epilepsy Foundation, 2019)

FACTS AND STATS

Epilepsy is the 4th most common neurological condition and affects nearly 3.4 million Americans and 65 million people worldwide. About 470,000 American children have epilepsy. Epilepsy and seizures, including the diagnoses of new cases, occur more often in younger children and older adults.

(Epilepsy Foundation, 2019)

CAUSES

Causes of epilepsy vary by the age of the person. Some people with no clear cause of epilepsy have a genetic form of epilepsy. Changes in the structure or development of the brain, infections, and head injuries can all be related to higher risk of epilepsy. But what’s true for every age is that the cause is unknown for about half of everyone with epilepsy.

Newborns are more at risk to develop epilepsy as a result of brain malformations; lack of oxygen during birth; low levels of blood sugar, blood calcium, blood magnesium, or other electrolyte problems; inborn errors of metabolism; intracranial hemorrhage; or maternal drug use. Infant and young children may be at risk due to fever (febrile seizures), a brain tumor, or other infections.

Older children and adults may be at risk for epilepsy due to congenital conditions (Down’s syndrome, Angelman’s syndrome, tuberous sclerosis, and neurofibromatosis), genetic factors, progressive brain disease, or head trauma.

Older adults are more likely at risk for epilepsy as a result of stroke, Alzheimer’s disease, or trauma.

(Epilepsy Foundation, 2019)

PREVENTION

Unfortunately, epilepsy is impossible to prevent. Learning about epilepsy (more specifically your own or your child’s), working with care professionals to find the right treatment, and regular management of epileptic triggers and medications/therapies are all important to reducing or preventing seizures and maintaining the best quality of life possible.

CHARACTERISTICS

Seizures may have symptoms that are motor or non-motor in nature.

Motor Symptoms may include sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly). There may also be automatisms or repeated automatic movements, like clapping or rubbing of hands, lipsmacking or chewing, or running with some focal onset seizures.

Non-motor symptoms are usually called absence seizures when they are classified as generalized onset seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids. Other examples of symptoms in focal onset seizures that don’t affect movement could be changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest).

Specific characteristics are unique to different seizure types. For more detailed explanations of characteristics for each type of seizure, please visit the Epilepsy Foundation: https://www.epilepsy.com/learn/types-seizures

(Epilepsy Foundation, 2019)

MEDICAL TREATMENT

When a doctor has made a diagnosis, the next step is to select the best form of treatment.

Medicine is the most common way of treating epilepsy and is almost always the first treatment tried. Taking the correct medicine can prevent or stop seizures. The right medicine depends on a number of factors including the type of seizure, the age and gender of the person, other medical problems the person may have, women who want to get pregnant, and possible side effects of medication.

When medicine is not successful, other methods may be tried. Surgery, dietary therapies, vagus nerve therapy, other types of brain stimulation or surgery, or behavioral therapies may be explored. The goal of epilepsy treatment is to prevent further seizures, avoid side effects, and make it possible for people to lead active lives.

(Epilepsy Foundation, 2019)

PROGNOSIS

Epilepsy cannot be cured. Prognosis is highly dependent upon the cause of epilepsy and seizure type. Medication, diet, devices, and/or surgery can help individuals control their seizures.

About 60-70% of people with epilepsy will respond satisfactorily to the first Anti-seizure medication (AED) used. Satisfactory response with a few months of AED used is predictive of favorable long-term seizure control. In the long-term, most patients achieve satisfactory seizure control resulting in about 50% of people who can discontinue AED treatment usually after being seizure free for at least 2 to 5 years. People with epilepsy may need assistance with transportation or access to public transportation.

Poor adherence to medications or other therapies, sleep deprivation, active medical illnesses, major emotional stress, medication adjustments, fever related to flu or other sickness, and substance abuse are related to recurrent seizures or treatment failure.

Epilepsy can be a life-threatening condition. Some people may lose their lives from accidents, suicides, abnormally prolonged seizures, or the underlying cause of their condition, such as brain tumors or infections. The leading cause of epilepsy-related death is believed to be sudden unexpected death in epilepsy (SUDEP).

(Epilepsy Foundation, 2019)

For many people with epilepsy, the risk of seizures restricts their independence (some states refuse drivers licenses to people with epilepsy) and recreational activities. Epilepsy can be a life-threatening condition. Some people with epilepsy are at special risk for abnormally prolonged seizures or sudden unexplained death in epilepsy.

(National Institute of Neurological Disorders and Stroke, NINDS, 2019)

EDUCATIONAL IMPLICATIONS

It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems in conjunction with seizures. Issues may also arise as a result of the stigma attached to having epilepsy, which can lead to embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings.

(NINDS, 2019)

Many children with epilepsy gain complete control of their seizures with regular use of seizure preventing medicines. These medicines may need to be taken once or multiple times a day. This means that some children with this disorder will have to take medicine during the school day. Successful treatment depends on keeping a steady level of medication in the child's blood at all times, so it is important that doses not be missed or given late.

Today, thanks to regular treatment with medication that prevent seizures, many children with epilepsy have these episodes infrequently or not at all and are able to participate fully in school activities. However, children who are still having seizures may run into problems at schools, such as isolation from other students, low self-esteem, and a lower level of achievement as a result of a stigma attached to having epilepsy.

Most children with epilepsy develop and learn similarly to children without epilepsy; however, as a group their risk for problems with learning is increased threefold. Approximately 9% of children with epilepsy have IQ's below 70, a percentage that is three times greater than in the general population.

Children who achieve seizure control relatively quickly with few side effects and no cognitive impairments generally have the best chance for average or above average educational achievement. However, it is worth noting that children with epilepsy with average IQ may not achieve up to their full potential, and attention problems have been identified across the spectrum. Loss of school time because of previously undiagnosed seizures or medical tests may also affect performance, even among children who are otherwise doing well.

(Epilepsy Foundation, 2019)

ORGANIZATIONS

Epilepsy Foundation
https://www.epilepsy.com
8301 Professional Place West, Suite 230
Landover, MD 20785
1.800.332.1000

The Epilepsy Foundation is the national volunteer agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services.

American Epilepsy Society (AES)
https://www.aesnet.org
135 South LaSalle Street, Suite 2850
Chicago, IL 60603
312.883.3800

The American Epilepsy Society is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. Members represent both pediatric and adult aspects of epilepsy.

National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
https://www.ninds.nih.gov
P.O. Box 5801
Bethesda, MD 20284
800-352-9424, 301-496-5751

The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world. The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two-dozen research institutes and centers that comprise the National Institutes of Health (NIH). The NIH, located in Bethesda, Maryland, is an agency of the Public Health Service within the U.S. Department of Health and Human Services. NINDS has occupied a central position in the world of neuroscience for 50 years.

Citizens United for Research in Epilepsy (CURE)
https://www.cureepilepsy.org
430 W. Erie, Suite 210
Chicago, IL 60654
312-255-1801

Citizens United for Research in Epilepsy (CURE) is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE is dedicated to raising public awareness about epilepsy and the fact that so many patients are severely impacted by the disease. Without a strong voice, epilepsy research will continue to lag behind that of other diseases.

Last updated March 2020.