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Emotional and Social Issues
Marissa A. Broadley
Joan of Arc, Ludwig van Beethoven, Michelangelo and Julius Caesar. What do all of these famous people have in common? They proved the creativity of their minds, the greatness of their beings and the goodness of their hearts regardless of the fact that they had epilepsy.
Epilepsy is the most common neurological disorder among children worldwide. 60 percent of the cases of epilepsy are diagnosed in childhood. When this occurs the diagnosis of epilepsy may become a very traumatic experience for the child as well as the parents and siblings of the child.
Devinsky suggests that much of what society believes about epilepsy is actually not true. It is important that parents become educated about epilepsy. So that they know that it is not a curse, their child is not retarded or violent and crazy, their child will probably not become brain damaged and their child will most likely be able to live a normal life with all the dreams they had hoped for (1994). This is especially imperative as the child will sense how the parent feels about the illness and will therefore take on the same feeling. In addition, the parents could subconsciously put a stigma on their child and become overprotective and discourage independency. Thompson and Upton state that the child will most likely gain more attention from the parents and this will result in resentment from the other siblings. Siblings should be given a chance to express their own feelings, which may include fear and guilt (1994).
Depending on the severity of the illness the parents, doctors and child can make reasonable restrictions together. The goal of the pediatrician or neurologist should be to control the seizures but to still maintain a normal lifestyle for the child. Different factors are considered when a therapeutic plan is being created. First, they must consider whether or not the seizures have a particular time that they occur or if there is a specific trigger. For example, some epilepsies are photosensitive, in other words flickering light is generally the cause of the seizure. In this case some children with epilepsy may not be able to play video games or watch television. Although, it is very uncommon that the photosensitive epilepsy would be so severe, it does occur. There are two other factors that play a role in determining the intensity of the restrictions on a child with epilepsy: the age of the child and any comorbid diagnoses. A child who is five years of age and had Attention Deficit Hyperactivity Disorder (ADHD) is less likely to be responsible about their illness than a 12 year old with no comorbid disorders. The 12 year old has a better ability to understand the consequences and is probably more willing to adhere to the therapeutic plan the doctor has created. Good communication and a good relationship the child has with the health care provider and parents is essential to successfully treat epilepsy without depriving the child from the most fulfilling and least restrictive life. This will prevent many problems including low self-esteem, social isolation and future seizures.
The fact the child may be striving to be like everyone else can be positive or negative. The child could be taking his/her Anti-Epileptic medication (AEDs) consistently in order to maintain seizure control and therefore have few restrictions. However, most children do not think that far in to the future about those kinds of consequences. They are more concerned with the present and therefore would prefer to not take medications because the other children do not have to take AEDs. Furthermore, Richard and Reiter confirm that some AEDs have many side affects such as weight gain, hair loss and fatigue and this will deter the children from taking the drug (1995). In this case the parents need to devise a plan in which they will be sure that the child has taken the medication to receive the most successful control. When negative side effects occur it is important the parent and the child express to the doctor, so that the doctor can provide the parents and child with options of other medications. Neville conveys that one must also remember that not every child is treated with medications. The risks and benefits of this has not been determined, as there are no placebo controlled studies for obvious ethical reasons (1997).
As the child grows into adolescence new issues arise that will carry into adulthood. It is important that it be dealt with in the most positive and least restrictive way possible. Adolescence is already a difficult time for a child without epilepsy, for children with epilepsy it may be immensely more difficult. These issues include driving, part-time employment, career prospects, dating, sexual activity, alcohol and illicit drug use. These issues affect the adolescent and their relationships with their peers and parents.
The first and the most inhibiting issue is whether or not the adolescent can drive. Being able to drive provides independency, without the ability dependency is increased. The fact that a person with epilepsy may not be able to drive should not inhibit social activities or interfere with education or a job. Unfortunately, not being able to drive usually does result in these unfavorable consequences. It is imperative during this time that the person with epilepsy obtain the utmost seizure control. This is typically done by consistently taking the anti-epileptic drugs on time. The patient should take extra care when traveling between time zones as to take the medications at the accurate and precise time, and when traveling one should make sure that they have an adequate amount of medication. In addition, the person should avoid the triggers of their seizures. Although, triggers of seizures are different for everyone, some include: flashing lights, stress, lack of sleep, menses, alcohol/drug use and some over the counter drugs. This seizure control is essential if the person with epilepsy would like to drive. In most states in the United States, a person must be seizure free for a year before they can legally drive. As Freeman and Vining note it is actually safer for a woman with epilepsy to drive than for a man without epilepsy to drive. In addition, seizures only account for one in every 10,000 car accidents, while six in 10,000 car accidents are attributed to natural deaths and a incredible 2,500 of 10,000 car accidents are associated with alcohol use (1997).
During this time peer relationships change and dating becomes an issue. The thought of having to tell a date that one has epilepsy is very anxiety producing. Thoughts of rejection run through the mind of the person with epilepsy. This is the same worry that the person with epilepsy had with friendships. Since they feel this way, they may avoid dating all together. Often, the person with epilepsy does not tell the date until the relationship becomes serious; unless, of course, the epilepsy is very severe.
Along with the issue of dating comes the issue of sexual activity. This complicates matters further and increases the teenager’s responsible concerning the control of their epilepsy. The partner needs to know how to handle a seizure. In addition, some AEDs may affect the efficacy of birth control pills and therefore increase the risk of pregnancy. Lastly, many AEDs are potentially teratogenic, so both the partner and the person with epilepsy needs to be aware of the increased chance of birth defects if a pregnancy should result. Smith and Chadwick report that the risk of congenital malformations is 4-6% in patients receiving monotherapy, 7-8% in those receiving dual therapy and 15-20% in mothers receiving polytherapy. The defects include neural tube defects, fetal valproate syndrome and fetal anticonvulsant syndrome. Although, it is generally preferred that the mother plan her pregnancy and not be taking an AEDs at the time, it is still preferred that if the woman has uncontrolled epilepsy off of AEDs this is a greater risk to the fetus than the drug effects. It is estimated that 40% of epilepsy patients are women of childbearing age. It is important that these women become educated on the possible risks by an epilepsy specialist or other professional equipped to deal with this. This type of counseling should be done in early adolescence (2001).
Today, people with epilepsy are still trying to prove themselves to the world. With the right attitude and support, they should be able to prove themselves successful.
Freeman, J.M., & Vining, E.P., (1997). Seizures and epilepsy in childhood: a guide for parents (2nd ed.). Baltimore: The Johns Hopkins University Press.
Devinsky, O. (1994). A guide to understanding and living with epilepsy. Philadelphia: F.A. Davis Company.
Haynes, S.D. & Bennett, T.L., (1992). Historical perspective and overview. In T.L. Bennett (Ed.), The neuropsychology of epilepsy (pp.3-15).
Mack, C.J. (2001). Treating the person. The Lancet, 357 (9257).
Neville, B.G. (1997). Fortnightly review : epilepsy in childhood. British Medical Journal, 315, 924-930.
Richard, A. & Reiter, J., (1995). Epilepsy: a new approach. New York: Walker and Company.
Sharvan, S. (1995). Epilepsy and driving. British Medical Journal, 310, 885-886.
Smith, D. & Chadwick, D., (2001). The management of epilepsy. Journal of Neurology, Neurosurgery and Psychiatry,70(Suppl.II), 15-21.
Thompson, P.J. & Upton, D., (1994). Quality of life in family members of persons with epilepsy. In M.R. Trimble , & W.E. Dodson (Eds.), Epilepsy and Quality of Life. New York: Raven Press.
Watts, J. (1998). “Pocket Monsters” fell Japanese children. The Lancet, 31 (9095).
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