Epilepsy
Partners Resource Network has gathered together a variety of resources available online about Epilepsy. These resources include fact sheets, web sites, articles, a listing of Texas support groups, and more. The online resources follow some frequently asked questions (faq's) pertaining to epilepsy, IDEA, and education.
If you have questions about epilepsy or need help with issues related to education, please contact your PATH, PEN, or TEAM Regional Coordinator. To find your Regional Coordinator, check our Texas PTI Map or call us at 1-800-866-4726.
Frequently Asked Questions About Epilepsy
1. What is epilepsy?
Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person's consciousness, bodily movements or sensations for a short time.
These physical changes are called epileptic seizures. That is why epilepsy is sometimes called a seizure disorder. The unusual bursts of energy may occur in just one area of the brain (partial seizures), or may affect nerve cells throughout the brain (generalized seizures). Normal brain function cannot return until the electrical bursts subside. Conditions in the brain that produce these episodes may have been present since birth, or they may develop later in life due to injury, infections, structural abnormalities in the brain, exposure to toxic agents, or for reasons that are still not well understood. Many illnesses or severe injuries can affect the brain enough to produce a single seizure. When seizures continue to occur for unknown reasons or because of an underlying problem that cannot be corrected, the condition is known as epilepsy. Epilepsy affects people of all ages, all nations, and all races. Epilepsy can also occur in animals, including dogs, cats, rabbits, and mice.
An animated version of What is a Seizure is available online at Epilepsy.com You can also view the animation What is a Seizure*.
2. What causes epilepsy?
In about seven out of ten people with epilepsy, no cause can be found. Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works. For example, head injuries or lack of oxygen during birth may damage the delicate electrical system in the brain. Other causes include brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, problems in development of the brain before birth, and infections like meningitis or encephalitis. Epilepsy is often thought of as a condition of childhood, but it can develop at any time of life. About 30 percent of the 125,000 new cases every year begin in childhood, particularly in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65.
3. What should I do if I suspect a seizure disorder?
If you think you or a loved one might be having seizures, it is important to discuss with your physician what has been happening. Keep a record of how often the unusual episode occurs, the time of day it happens and what form it takes. Giving the doctor this information will help him or her determine if what you are describing might be a type of epilepsy.
4. How is epilepsy diagnosed?
The doctor's main tool in diagnosing epilepsy is a careful medical history with as much information as possible about what the seizures looked like and what happened just before they began. A second major tool is an electroencephalograph (EEG). This is a machine that records brain waves picked up by tiny wires taped to the head. Electrical signals from brain cells are recorded as wavy lines by the machine. Brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has epilepsy. Imaging methods such as CT (computerized tomography) or MRI (magnetic resonance imaging) scans may be used to search for any growths, scars, or other physical conditions in the brain that may be causing the seizures. In a few research centers, positron emission tomography (PET) imaging is used to identify areas of the brain which are producing seizures.
For more information about epilepsy, try these resources:
- Epilepsy Fact Sheet - HTML or PDF*
- Epilepsy Foundation's Introduction to Epilepsy
- For Nannies and Babysitters
- The Challenges of Epilepsy for Kids and Teens
These resources might be helpful to your child with epilepsy:
FAQ's about Epilepsy and Education
1. Is my child with epilepsy eligible for special services through his school?
Yes. Students with epilepsy or seizure disorders are eligible for special educationand related services under the Individuals with Disabilities Education Act (IDEA). 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 are 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.For more information about epilepsy and education, try these resources:
- Education of Kids with Epilepsy
- How Do I Combat Teasing?
- Individualized Education Plan: A Roadmap for the Special Education Student with Epilepsy
- Parent and Teacher Communication
- Self-Management in Epilepsy Care: Putting Teens and Families in the Center*
- Seizures and Teens: Sorting Out Seizures*
- Tips for Seizure Observation*
- Instructions for Using Seizure Calendars*
- Event Calendar*
- Monthly Seizure Calendar*
- Seizures and Teens: When Emergencies Happen, What To Do?*
- You Are Your Child’s Greatest Advocate: Braving the School System
Support Groups
Web sites
Epilespy.com
www.epilepsy.com
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 Foundation of America
www.epilepsyfoundation.org/
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. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by affiliated Epilepsy Foundation offices in nearly 100 communities.
