Epilepsy is a paroxysmal disorder with unpredictable tuning regarding the onset of seizures. This erratic occurrence can be frightening to patient and family. The possibility of sudden onset of a seizure at school, during social outings, while playing sports, or even while driving or at work can have a large impact on the patient's lifestyle. The primary treating physician has the responsibility for ensuring appropriate medical evaluation and treatment for the seizure disorder. He or she should also realize the large impact this diagnosis may have on the patient and his or her family members. Although medications are often necessary and effective, their use represents only part of the management picture. These patients may have other emotional, social, or academic needs that must be addressed. Therefore, the treating physician must be an avid patient advocate and be aware of local community resources available to these patients.
The child with epilepsy needs good supervision and a safe environment in the home just as any other child.1 Common sense will dictate many of the precautions needed in the home. Children should not bathe alone and showers should be encouraged as soon as feasible. Locks should be removed from bathroom and bedroom doors. Open flames and heaters are a source of injury to any child who might fall unexpectedly. Sleeping on the top bunk could be dangerous. Because many seizures do occur at night, having the floors padded around the bed is a reasonable precaution to prevent injury. Helmets need to be worn when bicycling or skating.
Sleeping over at a friend's house and going to parties, movies, and other events are normal activities for children and should be encouraged. Other adults who will be supervising the child should be informed about the seizures and what to do if one should occur; they should be given a list of telephone numbers to call, and told what medications the child should take and when. It is useful for the child to wear a medical identification bracelet if he or she will be separated from the parents.
Siblings and selected close friends should be informed of the child's seizure disorder in a way they can understand. The pediatrician can be helpful in this situation. Often children assume some feelings of guilt if a sibling is diagnosed as having a medical illness. Also, siblings can become jealous if the child with epilepsy is perceived as receiving extra attention. Parents should be encouraged to maintain communications with all family members so information is shared and no one feels left out. Parents should also be aware that the diagnosis of epilepsy may not be accepted or understood by each of them equally. It is not uncommon for one parent to deny the seizures and the other to assume guilt for the condition, especially if they are separated. This can lead to compliance problems and marital discord.
There are many factors that can affect cognition and behavior in children with epilepsy.2 Possible causes include inherited traits, underlying central nervous system abnormalities, and frequent seizures. Studies measuring the intelligence quotient (IQ) of children with epilepsy show three patterns. Most children are within the normal range and remain so over time. Some have subnormal IQ scores compared with control subjects; many of these also have other neurologic deficits. A small group shows a decline in IQ scores as the child ages.3 It is unclear whether this is the result of frequent seizures, medications, or other factors. In general, children with epilepsy have a slightly lower mean IQ when compared with control subjects, but they also have a wider range. It should be noted, however, that many children with epilepsy score in the superior range.
Studies that have measured school performance show similar findings. As a group, children with epilepsy show less than expected academic growth than control subjects, when measured by the Wide Range Achievement test.3 Even when children with other neurologic handicaps were excluded, those with only epilepsy did not do as well as control subjects. The cause of this poorer school performance is not clear. Children with benign partial epilepsy generally test normal and those with generalized absence epilepsy also do well. However, results can be influenced adversely if the seizures are poorly controlled, and children with symptomatic epilepsy (ie, those with organic disease as a cause of seizures) do worse than those with idiopathic epilepsy. Other risk factors for poor performance are multiple seizure types, early age of onset, and lifetime total seizure frequency.4
Other factors besides epilepsy can affect school performance. Behavioral problems are slightly more common in children with epilepsy, but this generally correlates with intelligence. Parental and teacher attitudes may also affect behavior.
Although there are fewer studies in children than in adults, antiepileptic drugs (AEDs) have been implicated in academic difficulties. Many studies describe the detrimental effects of AEDs on various factors, including memory skills, concentration, irritability, and hyperactivity. AU AEDs can result in deleterious side effects, although the barbiturates (especially phénobarbital) have received the most attention. Phénobarbital causes behavioral problems and inattention in 30% to 50% of younger children. The cognitive effects of phénobarbital are subtler in older children and adults. Phenytoin appears to have the most cognitive side effects of all of the AEDs. All AEDs cause significant problems at high dosages and the effects are additive if more than one AED is used. However, in the majority of children taking AEDs, these effects are not clinically relevant. The pediatrician should be instrumental in comparing academic performance of the patient before and after AED use. The care provider should also inquire about behavior changes or alterations in personality after drug initiation. The risks versus the benefits should always be carefully weighed.
When a patient is enrolled in an academic setting, the care providers and educators should be made aware of the patient/ s seizure disorder. Some parents may have a natural tendency to withhold this information. This should be discouraged because educators should be prepared to act appropriately. "Hiding" the diagnosis may imply denial, shame, or other notions that the child may misconstrue.
The "typical" seizure type should be described. A printed description is useful and can be prepared by the pediatrician along with written instructions as to what to do in case of a seizure. Prepared information about epilepsy for schools (School Alert) is available from The Epilepsy Foundation of America (EFA).* The medications that the child is taking and expected side effects should be known by the teachers. They can report symptoms to the parents that suggest AEDs may need adjustment. A special arrangement may be necessary if the child is to take medications at school. Children who are having temporary problems with seizure control or medications may need extra time to complete their work in school. Teachers should be aware that most children with epilepsy may participate in almost all extracurricular activities, provided there is adequate supervision. The risk of injury or seizure is outweighed by the benefits of participation.
Educators are at times frightened by the possibility of seizure occurrence within the classroom. They may be afraid that an event will not be recognized or that they will be unable to administer proper care for the patient. This is often magnified after an initial seizure. Typically, fears are minimized by educating the teachers about seizure safety and having a well-delineated course of action in place.
Simple seizure safety instructions should be relayed. First, the teacher should remain calm and not leave the child alone. The child should be placed in an area where he or she will not harm himself or herself, such as the floor. Nothing should be placed in his or her mouth. Clothing should be loosened and glasses removed. His or her body should be slightly tilted to the left. The seizure should be timed with a clock or watch. If the spell lasts longer than 5 or 10 minutes (depending on the proximity of the school to the nearest emergency care facility), the local emergency medical systems should be activated and a parent should be immediately notified. The child will be confused, embarrassed, disoriented, and sleepy after the seizure and reassurance by a caring individual is needed.
Participating in normal youth activities is important for every child's sense of well-being. Summer camp is a popular activity in some areas and the child should be encouraged to attend if he or she shows interest. Often, it is more difficult to persuade the parents to let the child attend. Just as in school, the caretakers at summer camps should be aware of the child's seizure type and have a definite course of action should a seizure occur. Each camping facility has varying levels of medical personnel available. The information provided to schools should also be provided to the camp. Special attention should be given to participation in camp activities. If well supervised, the child can participate in almost all camp activities except climbing (rock climbing or repelling) and underwater swimming (scuba diving or snorkeling).
If a patient has frequent and hard to control seizures, special camps sponsored by local epilepsy support groups are often available. The medical personnel in these settings are well trained and equipped to handle almost any epileptic emergency. These summer outings are much enjoyed by the child and offer the parents an opportunity for a short respite as well.
During the past several years there has been an increased awareness of the psychological and general physical needs of children with epilepsy. These patients are now encouraged to lead as "normal" a life as possible with as few restrictions as feasible. Our society is an active one and physical activity and team sports play a large role in extracurricular activities.
Physicians who take care of children who are involved in athletics should realize that in today's culture, sports and athletic activity are extremely important to young people and that unnecessarily strict interpretation of medical conditions may in fact do more harm than good.3
As with other medical decisions, each patient should be treated as an individual, using common sense as the ruling factor. The risks of athletic participation should be considered by the patient (depending on the child's age), the parents, and the physician before a final decision is reached about participation. Reasonable seizure control and adequate supervision are essential to the safety of the individual.
Water sports have long been controversial. Swimming is acceptable for patients with seizures. All children who swim should do so under adequate adult supervision and preferably under the care of trained lifeguards. A buddy system is always a good idea. Swimming in rivers, streams, or lakes, especially with a strong current, leads to increased risk. Boating, sailing, or rowing should also be supervised and the use of life jackets is especially important. Scuba diving is one water sport that should be avoided.6
Team sports that involve contact, including football, have not been shown to result in any increase in seizure activity. Of course, appropriate protective gear is recommended and children with poorly controlled seizures may have additional risks. Although studies are limited, even repetitive minor head injuries in competition have not been associated with any greater risk for seizures.7 Other team sports, including hockey, baseball, basketball, and wrestling, should not be excluded for the child with epilepsy.
Unnecessary risks involving extreme heights should be avoided. These would include rope climbing, rock climbing, high diving, parallel bars, and hang gliding. Falls that would result from a "shorter" distance, including gymnastic exercise, horseback riding, and cycling, should be discussed on an individual basis, considering the type of seizure, seizure frequency, and the patient's overall physical condition. Headgear is recommended in any situation in which one could assume a reasonable risk of falling.
The physical and psychological benefits of sporting activities should not be underestimated. This can have a positive impact on the child's self-image with increased self-confidence. Athletic endeavors are a safe outlet for stress and anxiety. Increased aerobic activity may also result in decreased body fat and help battle the tendency for weight gain caused by some AEDs.
Adolescence is challenging by itself. This challenge may become exponentially increased when the child has a chronic medical disorder. Denial of medical illness, risk-taking behavior, and peer pressure often compromise medical management. The pediatrician who has established a relationship with the child is often the one best able to deal with problems as the child emerges from childhood and enters adolescence. The pediatrician should begin to discuss these potential problems with this age group as part of anticipatory care.
In general, responsibility for care is gradually relinquished by the parent to the child as his or her abilities and maturity level grow. Eventually, the child should become responsible for taking his or her own medications and alerting the parent when a refill is needed. Compliance may become an issue at this point. It may be necessary to monitor drug levels if previously controlled seizures recur. This can be an important lesson for the child in the consequences of poor behavior choices. The physician can help by simplifying the medication regimen. This may be done by decreasing the number of medications taken or reducing the frequency of dosing. A dose checklist, a pillbox, or both can serve as helpful reminders.
As the child participates in his or her care more actively, he or she should also become increasingly involved in clinical decisions, especially those involving medication changes. At this age, subtle side effects such as drowsiness and mental slowing can be personally identified and discussed. As the child becomes more involved in his or her care, there is an increased sense of self-control.
Other topics that should be covered are the interactions of some AEDs with oral contraceptives, possible teratogenic effects of some AEDs, and the effects alcohol and drug use may have on seizure control. Simple aspects of daily life, such as sleep deprivation or dietary changes, are typically seen in this age group. These may also influence seizure frequency. Questions about driving an automobile, further education, and career choices need to be addressed.
Currently in our society, driving an automobile is often an economic and social necessity. Limiting this privilege can be deleterious to the patient's job or academic opportunities. Public transit systems are available only in the larger metropolitan areas and, when present, their schedules may be somewhat limiting. In the United States, each state has laws that limit the driving privileges of patients with epilepsy, although the trend has been one of liberalization. The restrictions are intended to ensure the safety of the public.
The accident rate among epileptics is approximately twice that of age-matched control subjects. However, only 20% of accidents involving epileptics are actually caused by seizures. Seizure-related accidents are more common in men, even in those who have been seizure free for more than 2 years. In 12% of the accidents, the seizure was the first one experienced by the driver. Of seizure-related accidents, 80% involve the driver's vehicle only and 23% result in personal injury (3% serious).
Only patients with adequate seizure control may be granted a license to drive. The level of control is typically judged by the time since remission or last seizure. Some states require approval for driving from a treating physician. Six mandate physician reporting of patients with seizures to the Department of Motor Vehicles or Department of Public Safety. These include California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania. Up-to-date information on current state statutes may be accessed via Internet at www.EFA.org or by contacting the local Department of Motor Vehicles. Treating physicians should be aware of their own state's laws and document clearly in the medical record that the patient has been counseled regarding this matter.
Some states are beginning to consider special individual cases. Patients who have seizures when they are asleep, those who have simple partial seizures that do not impair consciousness, and those who consistently have an extended warning aura preceding a seizure may be given special consideration.
QUALITY OF LIFE
Although the majority of children with epilepsy are seizure free by adulthood, there is an increased risk for social and educational problems.8 When children who have epilepsy are compared with other children who have chronic diseases, those with epilepsy generally fare less well on quality of life issues. Children with active seizures do much worse than those with active asthma, and this difference persists even if the conditions are in remission.9 There are several causes for the differences. Children with epilepsy have less control over their illness. Epilepsy causes somewhat random, sudden events with little or no warning. Also, children with epilepsy may have other neurologic problems that affect behavior and performance. The medications used to control seizures also affect the sense of wellbeing. Finally, there are persistent prejudices against children with epilepsy. In one study, 24% of respondents predicted that a child with epilepsy would cause disruption in the classroom and 41% predicted a lessened quality of life, which was worse than predicted for those with asthma or hyperactivity.10 These attitudes are not lost on children with epilepsy.
These outcomes suggest a deficiency in the holistic approach to children with epilepsy and underscore the need for management of the "whole" child. Seizure control is of paramount importance. However, behavioral, social, and educational difficulties must also be addressed. Families do best when they openly discuss epilepsy and the changes that might also be needed because of this diagnosis and share feelings with one another and others when they feel it is helpful. Children and families also adjust better if they make good use of support systems. Staying active in enjoyable pursuits and approaching challenges confidently improve outcomes.1
1. Ritter FJ, Butler LM. Treating childhood seizures. In: Gumnit RJ, ed. Living Well With Epilepsy. New York: Eternos Publication; 1990:61-84.
2. Bourgeois BF. Antiepileptic drugs, learning, and behavior in childhood epilepsy. Epilepsia. 1998;39:913-921.
3. Rodin E. Prognosis of cognitive functions in children with epilepsy. In: Herman BP, Seidenberg M, eds. Childhood Epilepsies. Chichester, England: Wiley; 1989:33-50.
4. Seidenberg M, Beck N, Geissler M, et al. Academic achievement of children with epilepsy. Epilepsia. 1986;27:752-759.
5. American Academy of Pediatrics Committee on Children with Handicaps. Sports and the child with epilepsy. Pediatrics. 1983;72:884-885.
6. Commission of Pediatrics of the International League Against Epilepsy. International League Against Epilepsy Commission report: restrictions for children with epilepsy. Epilepsia. 1997;38:1054-1056.
7. van Linschoten R, Backx FJG, Mulder OGM, et al. Epilepsy and sports. Sports Med. 1990;10:9-19.
8. Sillanpaa M, Jalava M, Kaleva O, et al. Long term prognosis of seizures with onset in childhood. N Engl J Med. 1998;338:1715-1722.
9. Austin JK, Huster GA, EHinn DW, et al. Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia. 1996;37:1228-1238.
10. Bauman RJ, Wilson JF, Wiese HJ. Kentuckians' attitudes toward children with epilepsy. Epilepsia. 1995,36: 1003-1008.