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Epilepsy is a chronic illness in the brain (Engle, 2008). The brain has electrical currents running through it constantly sending messages to other areas in the brain and other parts of the body about movement, thought and perception. In a typical brain, the electrical currents are firing at a constant, expected rate. In a person's brain with epilepsy, the brain fires electrical currents at rates that disrupt areas of the brain, either all or partial, and ultimately other functions in the body. When this occurs, a symptom of epilepsy may occur, a seizure. A seizure is a change in attention or behavior (UCB Inc., 2010). There are many different types of seizures that can occur as a symptom of epilepsy with many different theories as to cause of the occurrence. A person does not have epilepsy if they have had a seizure (UCB Inc. 2010).
Approximately 1.4 to 2.7 million people have epilepsy and this condition can occur at any point in the lifespan, but most commonly with young children, infants, and adults over the age of 65 (UCB Inc., 2010). There are various causes depending on when in the lifespan an individual is diagnosed, which include birth defects, traumatic brain injury, brain tumor or an infection in the brain. For adolescents, the most common known etiologies for epilepsy are traumatic brain injury, birth defects and tumors (Engle, et al., 2008). Epilepsy can be hereditary, but that is a very small population and low risk of passing epilepsy to future generations. A seizure, a symptom of epilepsy, can be caused or triggered by many different factors. For example, there are theories that due to hormone changes in the monthly cycle of a woman, seizures are more likely to occur before she has her period (UCB Inc., 2010). The two most common causes of seizures are not having a regular sleep pattern developed and extra stress. There is a very small population of people that are photosensitive and can have a seizure when there are flashing lights or changes in the visual field, for example the sun's reflection on a body of water (UCB Inc., 2010).
In order to diagnose epilepsy, an individual should go to see their neurologist or epileptologist. The doctor will ask about medical history and take various scans and tests of the individual brain activity with an Electoencephalography (EEG), Computerized Axial Tomogrpahy scan (CAT) or Magnetic Resonance Imaging (MRI). The initial diagnosis involves doctor's astute judgment and the patient's report on symptoms (Schneider, 1983). It is more uncommon for individuals to be diagnosed with epilepsy in a close time period after they have their first seizure (Schneider, 1983). When children are first diagnosed, the parents or immediate family members are the advocates for explaining the meaning of the diagnosis to their child. Some individuals have had seizures for a long time, and routinely, but have not understood that their symptoms were seizures. Families are able to vouch and elaborate on what occurs when their child has a seizure (Schneider, 1983). Treatments for epilepsy include medication, monitoring sleep pattern and the pattern of seizures. For some individuals, epilepsy can be outgrown, and for others can be controlled through anti-seizure medication (Engle et.al, 2008). While medication can help control the occurrence of seizures, an individual will need to be conscious of their sleep schedule or their personal level of stress, to aid the medication in preventing future seizures (UCB Inc. 2010). One way to prevent seizures and epilepsy is through the prevention of traumatic brain injuries. Traumatic brain injuries can occur at any point in the lifespan and are prevented by wearing a helmet and a seat belt.
Education, Intervention and Community Living
Educational rights for an individual with epilepsy differ depending on age. For adolescents, Individuals with Disabilities Education Act ensures appropriate education. IDEA covers individuals from birth to age 21. Students must be provided with a free appropriate public education, with the hope to prepare them for career opportunities, further education and independent living (Lakin & Turnbull, 2005). Under this provision, Individual Education Plans should be put in place. As an adolescent, it depends if he or she will have an IEP, because it depends on when epilepsy was diagnosed. The IEP is needed for children that show a decline in educational progress due to epilepsy. An adolescent may have an IEP, from childhood if they were diagnosed prior to adolescence. If an adolescent does have an IEP, it will state goals that their educational system is planning on completing by graduation or age 21. The IEP will prepare the student for supports associated with Americans with Disabilities Act, available once the individual reaches adult age, 21 (Lakin & Turnbull, 2005). Also, depending on the intellectual functioning of the individual, the educational settings will differ. For example, an individual with normal IQ, will be placed in a mainstream school. For an individual with an IQ of lower than 70, approximately nine percent of the individuals with epilepsy (Professional Advisory Board), and is classified as developmentally disabled, he or she could be placed in an integrated or segregated classroom. Statistics show that even if a student has an average IQ level, there is still a chance that he or she may not achieve up to the normal performance level due to absences in school and attention issues (Professional Advisory Board). Also, students with epilepsy range approximately 16 percent below grade in reading level and 50 percent in general knowledge.
An important aspect of education in adolescence is educating the school system, mainly the teacher and nurses, about epilepsy and how it specifically affects the student. Some part of this will be included in the IEP, is there is one in place. If there is not an IEP in place, the family and specifically the student is his or her own advocate to getting what they need. Information that teachers should be aware of include seizure first aid, risks or causes of the student's seizures, abilities and resources. It is imperative that a teacher understand what procedure to use if and when their student will have a seizure in school. Some tactics can include having a mat in the classroom, supplying the student with a chair with arms, or monitoring the amount of stress placed upon the student. The nursing staff at the school should also know what to do in case the student has a seizure, this is important for the safety of the individual and other students nearby. Risks or causes of the student's seizures should be noted. If the student's seizures are caused by quick changes of light (example from dark to brightness), the teacher should take precautions when adjusting the lighting in any way. If the cause of the student's seizures is completely unrelated to lights, but their menstrual cycle, the teacher would want to be aware of when in the month seizures are more likely to occur, to be as prepared as possible. Students abilities are taken into account with his or her IEP, but readdressing these to the teacher will help the student keep as normal an education schedule as possible. It is always a good rule of thumb to assume abilities unless you know otherwise. Lastly, the family and student should make aware what resources they use and what resources the school can use. This may include their doctor, to ask any follow up questions regarding seizures and epilepsy. This may also include a note card of who to contact if a seizure does occur.
Stigma is a large factor to any individual with a disability. In adolescence, having a disability or being different from other students can create an outcast. It is part the student and family's responsibility and part the schools responsibility to be aware of the stigma of having a disability and ways to advocate for the individual. The more the teacher and school are aware of epilepsy, the more knowledge they can effectively share with other classmates. Epilepsy Foundation recommends students take an active role in explaining epilepsy to peers in school. Concurrently with informing educators about what to do if a seizure occurs, it is important to inform peers. Peers may be the ones sitting next to the student when he or she does have a seizure and can be the 'first response' to assisting if necessary.
In terms of intervention, the time when an individual is diagnosed with epilepsy will result in a varying form of intervention. With adults, the intervention would include the Americans with Disabilities ACT. In the infant and early childhood stage, IDEA and possibly the Birth to Three Program would be used. For adolescents, IDEA is the most prevalent form of intervention possible. Normally, an adolescent with epilepsy will still be living at home and going to a mainstream school unless there are co-morbid factors, such as developmental disability.
There are various supports and therapeutic options for individuals with epilepsy. Most of the options are dependent on the severity of epilepsy and the impact is has on someone's life. One option that is available is a seizure response animal. Usually a dog, this animal provides varying types of assistance to the individual. The dog is able to assist with creating a safe environment during a seizure, finding someone for help in needed and to stay with the individual during the seizure. The dog is also able to provide resources that parents and teachers may not; a companion. The individual will have trouble creating friends, due to the stigma of their disability and the seizure response dog can increase confidence and allow the student to attempt activities they might not have felt comfortable doing before (UCB, 2010).
With any family with a member that has a disability, there are various changes and feelings associated. For example, a sibling of a child with a disability may feel left out or neglected because his or her parents only focus on the other child. Or a parent might feel that their connection with their spouse is weakening because all or most of the time and energy is spent on their child. Also, having a child with a disability impacts finances greatly. Worrying about money will impact everyone in a family unit. In National Goals, there are two definitions of family. One definition is a legal definition held up in court: Those who are related by blood or marriage or by legal adoption or foster-parent relationship (Miller and Sammons 2005). The second definition is an adaptive and universally accepted definition from Miller and Sammons; "A family includes the people who think of themselves as part of a family, whether they are related by blood or marriage, and who support and care for each other on a regular basis."
Family supports are very important when one member has a disability. A main factor in shaping the support of a family unit is the understanding and attitudes of the family, community and school system. When one or more of these support systems fail, the family has a greater chance of not being able to cop as well (Engle, 2008). "The epilepsy support community is advocating for greater family support systems, including information, respite care, counseling support and communication, evaluation and coordination of services" (Engle, 2008).
In adolescence, specifically, there are many different issues that families go through. Adolescence is a period of change physically and socially for an individual. Adding epilepsy to adolescence makes this phase of life even more challenging. Physically, the body is changing, because there is a greater production of hormones. For a woman with epilepsy, this change in hormone production can affect how many and how often a seizure can occur (Professional Advisory Board). The transition during puberty to an adult, medication and dosages change as much as the individual changes (Hilditch, 2010).
Driving and obtaining a drivers license is an important milestone for individuals around age 16. For an individual with epilepsy, obtaining a license involves a different process. Depending on the state the individual is in, different laws and regulations are in place for someone that has seizures. Connecticut, for example, does not have a seizure-free period that restricts individuals from getting their license if they have had a seizure previously in a certain number of months (Epilepsy Foundation, 2010). A seizure-free period must be confirmed by a doctor's note and he or she must be able to submit periodic medical information proving that they have stayed seizure free. For an adolescent, this process is much more than other individuals their age have to go through and can hinder their social activities.
Another area that specifically affects adolescents with epilepsy includes socializing outside of school; having and keeping friends and dating. As a teenager, personal information about health problems is usually thought to be kept within the family. For a teenager with epilepsy, it is safer and usually best practice to tell friends or people you will spend time with, your condition. It is important for the teen to take responsibility of their disability and stay as in control as much as possible. This includes taking the appropriate mediation at the appropriate time with the appropriate dosage. This also includes discussing epilepsy with people he or she socializes with, in and outside of school. Epilepsy Advocate encourages families to make a point to discuss their plan to tell friends, teachers and coaches about the teen's condition.
Extracurricular activities, specifically sports, cause the greatest concern among parents with children with epilepsy (Epilepsy Foundation, 2010). Both contact, and non-contact sports can be hazardous for someone with epilepsy. For example, swimming, a non-contact sport could be dangerous if the individual had a seizure in the water. Soccer is contact sport and has more possibility of a seizure than non-contact. Soccer can still be played by an individual with epilepsy, through a mutual understanding of the player, coach and family. A doctor is the best resource to ask whether a specific sport will make the condition worse or cause seizures (Schneider, 1983).
Public Policy and Law
IDEA and APA are the main policies in place in America that advocate for individuals with disabilities. Focusing on adolescents, Individuals with Disabilities Education Act is most important. Americans with Disabilities Act will come into play when the individual turns 21.
Disability rights advocates are still in the process of making a change in health care coverage in America (Engle, 2008). A major concern for Americans with epilepsy is the health insurance issues. Ironically, individuals that are in most need of health insurance coverage are the population that are the least likely to obtain coverage. Insurance companies do not want to cover an individual if they are in the high-risk category, which people with epilepsy are. This insurance coverage also falls under driving insurance. It is more difficult for an individual to get car insurance if he or she has epilepsy because of the worry that they are more likely to cause an accident. It has been found that, more people have epilepsy due to car accidents, than are covered by insurance.
There is plenty of information available about epilepsy on the internet and in books. For adolescents, there are support services to discuss their disability and their transition in life. Epilepsy Foundation of America (www.epilepsyfoundation.org) is a resource for any individual with epilepsy. Epilepsy Advocate: Strength in Numbers (www.epilespyadvocate.com) is a website that has information on being a personal advocate of epilepsy and gives information for discussing an individual's condition with parents, educators, and peers. Specifically for adolescents, The Spot for Young People with Epilepsy (www.goeyc.org) has information about teens with epilepsy and common areas of interest, such as driving, dating and school concerns. Any individual with epilepsy that is interested in learning more about seizure support dogs, the organization 4 Paws for Ability (www.4pawsforability.org) can guide you in what support animals are for. For more information on Individuals with Disabilities Education Act for ages three to 21, please see www.idea.ed.gov.