EPILEPSYNICHCY
Fact Sheet Number 6 (FS6), Updated, January 1997
DEFINITION OF EPILEPSY
According to the Epilepsy
Foundation of America, epilepsy is a physical condition that occurs when
there is a sudden, brief change in how the brain works. When brain cells
are not working properly, a person's consciousness, movement, or actions
may be altered for a short time. These physical changes are called epileptic
seizures. Epilepsy is therefore sometimes called a seizure disorder. Epilepsy
affects people in all nations and of all races. Some people can experience
a seizure and not have epilepsy. For example, many young children have
convulsions from fevers. These febrile convulsions are one type of seizure.
Other types of seizures not classified as epilepsy include those caused
by an imbalance of body fluids or chemicals or by alcohol or drug withdrawal.
A single seizure does not mean that the person has epilepsy. INCIDENCE About two million
Americans have epilepsy; of the 125,000 new cases that develop each year,
up to 50% are in children and adolescents. CHARACTERISTICS Although the symptoms
listed below are not necessarily indicators of epilepsy, it is wise to
consult a doctor if you or a member of your family experiences one or
more of them:
-- "Blackouts" or periods of confused memory;
-- Episodes of staring or unexplained periods of unresponsiveness;
-- Involuntary movement of arms and legs;
-- "Fainting spells" with incontinence or followed by excessive
fatigue; or
-- Odd sounds, distorted perceptions, episodic feelings of fear that cannot
be explained. Seizures can be generalized,
meaning that all brain cells are involved. One type of generalized seizure
consists of a convulsion with a complete loss of consciousness. Another
type looks like a brief period of fixed staring. Seizures are partial
when those brain cells not working properly are limited to one part of
the brain. Such partial seizures may cause periods of "automatic
behavior" and altered consciousness. This is typified by purposeful-
looking behavior, such as buttoning or unbuttoning a shirt. Such behavior,
however, is unconscious, may be repetitive, and is usually not recalled.
EDUCATIONAL IMPLICATIONS
Students with epilepsy
or seizure disorders are eligible for special education and related services
under the Individuals with Disabilities Education Act (IDEA), formerly
the Education of the Handicapped Act (Public Law 94-142). Epilepsy is
classified as "other health impaired" and an Individualized
Education Program (IEP) would be developed to specify appropriate services.
Some students may have additional conditions such as learning disabilities
along with the seizure disorders. Seizures may interfere
with the child's ability to learn. If the student has the type of seizure
characterized by a brief period of fixed staring, he or she may be missing
parts of what the teacher is saying. It is important that the teacher
observe and document these episodes and report them promptly to parents
and to school nurses. Depending on the type
of seizure or how often they occur, some children may need additional
assistance to help them keep up with classmates. Assistance can include
adaptations in classroom instruction, first aid instruction on seizure
management to the student's teachers, and counseling, all of which should
be written in the IEP. It is important that
the teachers and school staff be informed about the child's condition,
possible effects of medication, and what to do in case a seizure occurs
at school. Most parents find that a friendly conversation with the teacher(s)
at the beginning of the school year is the best way to handle the situation.
Even if a child has seizures that are largely controlled by medication,
it is still best to notify the school staff about the condition. School personnel and
the family should work together to monitor the effectiveness of medication
as well as any side effects. If a child's physical or intellectual skills
seem to change, it is important to tell the doctor. There may also be
associated hearing or perception problems caused by the brain changes.
Written observations of both the family and school staff will be helpful
in discussions with the child's doctor. Children and youth
with epilepsy must also deal with the psychological and social aspects
of the condition. These include public misperceptions and fear of seizures,
uncertain occurrence, loss of self control during the seizure episode,
and compliance with medications. To help children feel more confident
about themselves and accept their epilepsy, the school can assist by providing
epilepsy education programs for staff and students, including information
on seizure recognition and first aid. Students can benefit
the most when both the family and school are working together. There are
many materials available for families and teachers so that they can understand
how to work most effectively as a team. RESOURCES Ellis, G.J., &
Trusz-Parks, S. (1993). Epilepsy: Parent and family networks resource
manual. Landover, MD: Epilepsy Foundation of America. [Telephone: (301)
577-0100.] Epilepsy Foundation
of America. (1992). Brothers and sisters: A guide for families of children
with epilepsy. Landover, MD: Epilepsy Foundation of America. (Telephone:
301-577-0100 for publications.) Epilepsy Foundation
of America. (1993). Issues and answers: A guide for parents of children
with seizures, ages six to twelve. Landover, MD: Epilepsy Foundation of
America. (Telephone: 301-577-0100 for publications.) Freeman, J.M., Vining,
E., & Pillas, DJ. (1993). Seizures and epilepsy in childhood: A guide
for parents (rev. ed.). Baltimore, MD: The Johns Hopkins University Press.
(Telephone: 800-537-5487.) Karp, N., & Ellis,
G.J. (Eds.). (1992). Time out for families: Epilepsy and respite care.
Landover, MD: Epilepsy Foundation of America. (Telephone: 301-577-0100
for publications.) Kobrin, E.R. (1991).
Issues and answers: A guide for parents of teens and young adults with
epilepsy. Landover, MD: Epilepsy Foundation of America. (Telephone: 301-577-0100
for publications.) Reisner, H. (Ed.).
(1988). Children with epilepsy: A parent's guide. Bethesda, MD: (Telephone:
1-800-843-7323.) ORGANIZATIONS Epilepsy Foundation
of America (EFA) 4351 Garden City Drive, Suite 406 Landover, MD 20785
(301) 459-3700; (800) EFA-1000 (Toll Free) (301) 577-0100 for publications
E-mail: postmaster@efa.org Web address: http://www.efa.org National Institute
of Neurological Disorders and Stroke (NINDS) National Institutes of Health
Building 31, Room 8A06 9000 Rockville Pike Bethesda, MD 20892 (301) 496-5751
(800) 352-9424 National
Information Center for Children and Youth with Disabilities
P.O. Box 1492 Washington, DC 20013 1-800-695-0285 (Voice/TT)
E-mail: nichcy@aed.org Url: http://www.nichcy.org
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