Epilepsy

DISABILITY CATEGORY: Other health impairment

TYPES: Partial and Generalized Seizures

DEFINITION(S):

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines 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 or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and

• adversely affects a child’s educational performance.”

[34 code of Federal Regulations §300.7(c)(12)]

Other definitions: Epilepsy is a brain disorder. It occurs when the electrical signals in the brain are disrupted. This change in the brain leads to a seizure. Seizures can cause brief changes in a person's body movements, awareness, emotions, or senses such as taste, smell, vision, or hearing. Some people may only have a single seizure during their lives. One seizure does not mean that a person has epilepsy. People with epilepsy have repeated seizures.

There are 2 types of seizures. Each has its own set of symptoms. Partial seizures are the most common type of seizure in adults with epilepsy. They occur when changes in electrical signals begin in one area of the brain. Three kinds of partial seizures are:

• Simple partial seizures. This type of seizure affects a small area of the brain. It lasts no more than a few seconds in most cases. Simple partial seizures do not affect consciousness. Sometimes the person just notices unusual feelings.

• Complex partial seizures. These seizures occur through a larger area of the brain. A loss of consciousness occurs. Sometimes the person will stop speaking, act strangely, or have repetitive movements.

• Secondarily generalized seizures. Simple and complex partial seizures that start in one part of the brain can spread through the entire brain. Once the entire brain is affected, there can be a loss of consciousness and shaking of all of the limbs.

Generalized seizures occur when the changes in electrical signals spread through the entire brain at once. The most common generalized seizures are:

• Generalized tonic-clonic seizures. This type is also known as grand mal seizures. It causes rapid movements of all limbs for 1 to 2 minutes or more. It also causes a person to become unconscious. Recovery can sometimes take hours.

• Absence seizures. This type is also known as petit mal seizures. This seizure is nonconvulsive. However, a person may become unaware of his or her surroundings and may stare off in space or freeze. This seizure lasts only 5-30 seconds.

• Myoclonic seizures. These are brief, shock-like jerks of a muscle or a group of muscles. Myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes.

• Atonic seizures. In an atonic seizure, muscles suddenly lose strength. The eyelids may droop, the head may nod, and the person may drop things and even fall to the ground. These seizures are also called "drop attacks" or "drop seizures." The person usually remains conscious. They often last into adulthood. Many people with atonic seizures are injured when they fall, so they may choose to use protection such as a helmet. (Source: http://epilepsy.com)

FACTS AND STATS: Epilepsy is one of the most common disorders of the nervous system, occurring in about 1 in every 100-200 people. Epilepsy affects people of all ages, races, and ethnic backgrounds. More than 2.7 million Americans of all ages are living with epilepsy. Every year, 181,000 Americans will develop seizures and epilepsy for the first time. Epilepsy can develop at any stage of life, but it occurs most often in adults over age 65 and in children. It is not usually possible to predict who is most likely to have epilepsy (Source: Epilepsy Foundation, 2005).

In the US, the lifetime likelihood of having at least one epileptic seizure is about 9%, and the lifetime likelihood of receiving a diagnosis of epilepsy is almost 3%. However, the prevalence of active epilepsy is only 0.8% (Source: emedicine.com, 2005).

Absence seizures usually begin between ages 4 and 14. The children who get them usually have normal development and intelligence. In nearly 70% of cases, absence seizures stop by age 18. (Source: epilepsy.com, 2004).

CAUSES: In 70% of people with epilepsy, the cause is unknown. However, in some cases of epilepsy, seizures may be caused by:

• Genetics;

• Short-term or lasting scarring or damage to the brain from head injury, serious brain infections such as meningitis, brain tumors, brain surgery, brain abscess, stroke, Alzheimer's disease or other diseases that change the brain's structure;

• Hardening of the arteries or any condition that keeps blood or oxygen from getting to the brain.

For a person with epilepsy, certain things can "trigger" a seizure, including stress, lack of sleep, infection, starvation or dehydration, alcohol, flashing lights or strobe lights, certain sounds or music (in rare cases), certain medications, withdrawing from an addictive drug (including alcohol), and childhood fevers (Source: epilepsy.com).

PREVENTION: Unfortunately, epilepsy is impossible to prevent. However there are steps one can take to lessen the symptoms. In addition to taking anti-seizure medication, make lifestyle choices that reduce triggers for seizures. Manage stress effectively, get enough sleep, eat a balanced diet, drink plenty of fluids, and do not drink alcohol or use recreational drugs. When new medications are added, always ask the healthcare provider or pharmacist about drug interactions (Source: epilepsy.com).

CHARACTERISTICS: Each type of epilepsy has a set of different symptoms. In some types, the person has a strange sensation before the seizure occurs. This warning sign is known as an aura (OR-uh). Auras vary from person to person. One example of an aura is smelling a strange odor.

Some symptoms of a generalized tonic-clonic (grand mal) seizure include blank staring, severe jerking of arms and legs, falling, loss of consciousness, and loss of bowel or bladder control. Symptoms of an absence (petit mal) seizure include staring, brief body jerks mainly involving arms, and brief loss of attention and activity. Symptoms of a simple partial seizure may include jerking of one part of the body, feelings of fear or panic for no reason, blinking eyes, face twitching, or a change in the way things taste, smell, or look. Symptoms of a complex partial seizure include staring, changes in the way things taste, smell, or look, repeated movements, mumbling, or memory loss. A generalized seizure may cause severe jerking of limbs, falling, loss of consciousness, or stiffening of the body (Source: epilepsyfoundation.org).

MEDICAL TREATMENT: The goal of epilepsy treatment is to stop seizures. In select cases where medical treatment does not work, surgical treatment may possibly help, but a cure for epilepsy is not available.

The most common treatment is a prescription anti-epileptic drug (also called an anti-convulsant or anti-seizure). Many people with epilepsy can manage their seizures with these medications. Finding the right medication and dosage that works best can take time. Healthcare providers may need to prescribe a few different medications until they find the right one or the right combination for a patient. It is important to take the medications every day as prescribed, to control your seizures in the best possible way. For some people whose medications do not control their seizures, other treatment options may include:

• Vagus nerve stimulation (VNS).In this process, a small device is placed under the skin in the upper chest area. The device sends electrical impulses to the brain, which may reduce how often seizures occur.

• Surgery.The most common type of surgery treats seizures by removing the small part of the brain where the seizures take place (Source: NINDS).

PROGNOSIS: Epilepsy is generally not the kind of condition that gets worse with time. Most adults who have it can expect to live a normal life span. Although seizure medications are not a cure, they control seizures in the majority of people with epilepsy (Source: epilepsy foundation.org).

Most people with epilepsy lead outwardly normal lives. While epilepsy cannot currently be cured, for some people it does eventually go away. Most seizures do not cause brain damage. It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems, sometimes the consequence of embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings. For many people with epilepsy, the risk of seizures restricts their independence (some states refuse drivers licenses to people with epilepsy) and recreational activities. Women with epilepsy have a 90 percent or better chance of having a normal, healthy baby (Source: NINDS).

EDUCATIONAL IMPLICATIONS: Most children with epilepsy are otherwise normal; however, as a group their risk for problems with learning is increased threefold. Approximately 9% of children with epilepsy have an I.Q. below 70, a percentage that is three times greater than in the general population. Patients with epilepsy may have cognitive impairments, which effect attention, memory, mental speed, and language, as well as executive and social functions.

When seizures happen, they can have two different effects on thinking:

• A seizure can disrupt the area of the brain in charge of a particular function. So if seizures happen in the area in charge of language, you may not be able to name an object when you see it.

• Seizures can also stop the communication between different areas. The lines are cut, so to speak. Even though you may know the name of an object, the part of the brain that knows can't tell the rest of your brain. The name is lost.

One thing to remember is that where seizures start tells what function may be affected. If seizures start in several areas, or are generalized, they may affect many different functions.

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 I.Q. may not achieve up to their 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.

Students with epilepsy are at increased risk for academic underachievement, particularly in the basic skills of reading, language, and arithmetic. Many of them are found to be significantly behind their peers in academic achievement levels, ranging from 16% below average in reading to 50% in general knowledge. In addition, children with epilepsy have been found more likely to have impairment of self-concept and behavior than are children with asthma. Children with severe epilepsy are also likely to experience social rejection from peers. Children with absence seizures do have higher rates of behavioral, educational, and social problems. Teacher attitude is an important factor in a child’s social adjustment at school; programs for the school community form an important part of most Epilepsy Foundation programs in local areas. Such programs generally focus on teacher awareness of seizure symptoms, seizure management, and full integration of the child within the community. School nurses also play an important role in the management of the child with epilepsy at school, especially in dispensing of antiepileptic medication during the school day, and in educating the rest of the school community about epilepsy (Source: epilepsyfoundation.org).

Teachers who have students with epilepsy should be aware of any potential triggers of seizures for the individual students. Teachers should also be prepared in case a seizure should happen during their class. They should know what a seizure looks like and what to do for the student if they do have a seizure. See http://www.epilepsy.org.uk/info/firstaid.html for detailed information about recognizing a seizure and administering assistance. Go to http://www.epilepsy.com/ epilepsy/firstaid_download.html for a downloadable guide to seizure first aid that you can print and keep on hand so everyone in the classroom will know exactly what to do in case of a seizure.

ORGANIZATIONS:

Epilepsy Foundation
4351 Garden City Drive
Suite 500
Landover, MD 20785-7223
301-459-3700, 800-EFA-1000
http://www.epilepsyfoundation.org

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
342 North Main Street
West Hartford, CT 06117-2507
860-586-7505
http://www.aesnet.org

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.

Child Neurology Society
National Office
1000 West County Road E
Suite 290
St. Paul, MN 55126
651-486-9447
http://www.childneurologysociety.org

The Child Neurology Society is the preeminent non-profit professional association of pediatric neurologists in the United States, Canada, and worldwide devoted to fostering the discipline of child neurology and promoting the optimal care and welfare of children with neurological and neurodevelopmental disorders. These disorders include epilepsy, cerebral palsy, mental retardation, learning disabilities, complex metabolic diseases, nerve and muscle diseases and a host of other highly challenging conditions.

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

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)
730 N. Franklin
Suite 404
Chicago, IL 6061
312-255-1801
http://www.CUREepilepsy.org

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.

RESOURCES:

http://www.epilepsy.com Epilepsy.com is an online resource provided by the Epilepsy Therapy Development Project. Our mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment. Epilepsy.com was created to provide in-depth information about epilepsy and the many treatments that are available for it, in a form accessible to nonprofessionals. We want the site to capture, organize, and make widely available the real-world experience of the doctors and nurses who treat epilepsy and of the families who live with it. Our goal is to use this user-generated content to build upon a foundation of proven scientific evidence and thereby provide an invaluable resource for individuals who need reliable information.

http://www.carpedb.ua.edu/ CarpeDB is a dynamic epilepsy genetics database sponsored by a National Science Foundation CAREER Award and the Department of Biological Sciences at The University of Alabama. CarpeDB serves as a novel source for both epilepsy researchers and the public by featuring scores of "epilepsy genes" and associated publications in one location.

http://www.cdc.gov/nccdphp/epilepsy/index.htm National Center for Chronic Disease Prevention and Health Promotion: A page dedicated to some general information on epilepsy.

http://www.naec-epilepsy.org/index.html The National Association of Epilepsy Centers (NAEC) is a non-profit trade association whose members include more 60 specialized epilepsy centers across the United States. Founded in 1988 by physician leaders committed to setting a national agenda for quality epilepsy care, the group educates private and governmental policymakers and regulators about appropriate patient care standards, reimbursement issues and medical services policies. If you are a person with epilepsy or someone who cares about a person with epilepsy, you can access epilepsy care specialists across the United States.

http://www.epilepsynse.org.uk/ The National Society for Epilepsy is committed to providing information and support to people with epilepsy. The National Society for Epilepsy’s mission is to enhance the quality of life of people affected by epilepsy, by promoting research, education and public awareness and by delivering specialist medical cares and support services. Our pages cover facts about epilepsy; causes of seizures; diagnosis of epilepsy, tests such as EEG and MRI; information on seizures; epilepsy treatments, including anti-epileptic medication, epilepsy surgery and complementary therapies; lifestyle issues such as driving, use of computers, safety, employment, education, pregnancy, and learning disabilities.

http://www.epilepsyontario.org/Epilepsy Ontario is a registered charitable non-profit non-governmental health organization dedicated to promoting independence and optimal quality of life for children and adults living with seizure disorders, by promoting information, awareness, support services, advocacy, education and research. One of our goals in the development of this site is to provide easy access to all the basic materials and current information about epilepsy and related issues needed by our chapter personnel and the people they serve, in a fast, reliable and cost-effective medium. The Internet allows us to offer this information to them and anyone on the web that needs it.

http://www.ilae-epilepsy.org/ TheInternational League Against Epilepsy (ILAE) is the world’s preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by Epilepsy. Its mission is to provide the highest quality of care and well being for those afflicted with the condition and other related seizure disorders.

http://www.epipro.com/ Welcome to the Epilepsy and Brain Mapping Program's Web Site! This site gives those with epilepsy the opportunity to learn more about their disorder and the medical treatments available.

Websites for Parents:

http://www.cdc.gov/epilepsy/toolkit/index.htm The National Center for Chronic Disease Prevention’s You Are Not Alone is a toolkit developed specifically for parents of teens who have epilepsy. Parents know that the transition from childhood into adulthood often includes emotional, psychological, and social challenges for any teen. But a teen with epilepsy, especially when newly diagnosed, may have additional anxiety and confusion due to epilepsy's complexity and unpredictability.

http://www.nichq.org/NICHQ/Programs/CollaborativeLearning/Epilepsy2005.htm The National Initiative for Children's Healthcare Quality (NICHQ) is an education and research organization dedicated solely to improving the quality of health care provided to children. The Awareness and Access to Care for Children and Youth with Epilepsy (AACYE) initiative aims to improve systems of care for children and youth with epilepsy, especially those residing in medically underserved areas. NICHQ’s role in the AACYE project will apply the model and lessons that proved successful in the first Medical Home Learning Collaborative to the care of children with the specific condition of epilepsy.

http://www.neuro.wustl.edu/epilepsy/ Welcome to the Web site of the Department of Neurology at Washington University School of Medicine. The tri-partite mission of the Department is to provide outstanding clinical care, train leading neurologists and scientists of the future, and to be an international leader in clinical and basic research on the disorders of the nervous system. Our goal is to bring scientific research and discovery from the bench to the bedside to improve the lives of our patients. Our department has a long-standing tradition of excellence and we hope the information we have assembled here proves useful to you.

Websites for Children:

http://epilepsyfoundation.org/epilepsyusa/yrc/index.cfm Get the word out about epilepsy and respect and you could be awarded a scholarship for college. The Epilepsy Foundation is launching YRC (Young Reporter’s Club) during the 2005-2006 school year. When you write for YRC you’ll be reaching thousands of kids around the country who will be interested in what you have to say. These are kids who are just like everyone else at your school – except they have a seizure disorder. YRC (Young Reporter’s Club) is sponsored through a grant with the support of our sponsor, the National Centers for Disease Control and Prevention.

http://kidshealth.org/teen/diseases_conditions/brain_nervous/epilepsy.html TeensHealth was created for teens looking for honest, accurate information and advice about health, relationships, and growing up. We offer a safe, private place that's accessible 24 hours a day to get the doctor-approved info you need to understand the changes that you (or your friends) may be going through - and to make educated decisions about your life. Created by The Nemours Foundation's Center for Children's Health Media, TeensHealth provides teens and families with accurate, up-to-date, and jargon-free health information they can use.

http://www.kidshealth.org/kid/health_problems/brain/epilepsy.html KidsHealth is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence. Created by The Nemours Foundation's Center for Children's Health Media. KidsHealth has separate areas for kids, teens, and parents - each with its own design, age-appropriate content, and tone.

http://staff.washington.edu/chudler/neurok.html Neuroscience for Kids has been created for all students and teachers who would like to learn about the nervous system. This is an excellent place to find diagrams and information about the brain, and it’s good for all ages. For information about epilepsy, click on “explore the nervous system” and “neurological and mental disorders.”

Other Resources:

Epilepsia is the leading, most authoritative source for current clinical and research results on all aspects of epilepsy. As the official journal of the International League Against Epilepsy, subscribers will find original peer reviewed articles, progress in epilepsy research, brief communications, editorial commentaries, special supplements, meeting reports, book reviews, and announcements. Subscriptions include access to Epilepsia On-line, which allows access to current and archived issues of the journal.

http://www.epilepsy-scholarship.com/ Are you a high school senior applying for college? Are you a college freshman, sophomore, or junior, or a college senior applying for graduate school? If so, you may qualify for Pfizer’s Epilepsy Scholarship Award!

http://sciencedaily.healthology.com/focus_index.asp?f=epilepsy ScienceDaily is one of the Internet's leading online magazines and Web portals devoted to science, technology, and medicine. The free, advertising-supported service brings you breaking news about the latest discoveries and hottest research projects in everything from astrophysics to zoology.

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