Epilepsy: Impact on the Life of the Child
Parents of children with epilepsy describe many challenges that confront their children within the school system. In our experience, school personnel may have a basic understanding of seizures and related safety concerns, but are less well informed about how seizures and the child’s learning, emotional, behavioural and social adjustment are related. For example, genuine concern over a child’s physical safety in the schoolyard may supercede that of concern over his or her social integration. Furthermore, learning or behavioural issues specifically associated with epilepsy may not be clearly understood or are viewed as unrelated to the epilepsy, leading to inappropriate classroom management techniques, placement or inadequate support outlined in the individualized educational plan (IEP). The following paper provides a brief overview of the information we provide in a letter to schools (at the request of parents). In addition to this general information, we include in this letter specific information concerning the child: seizures [types, frequency, duration, emergency management, antiepileptic drugs (AEDs) ]; cognitive/psychological profile (if available); details of the child’s emotional or behavioural status and how problem areas might relate to an underlying brain abnormality, seizures or AED. Finally, we provide some suggestions to include in the child’s IEP that will optimize academic potential, as well as promote emotional well-being and social integration within the school setting.
Epilepsy is a disorder that involves a constellation of symptoms that vary in frequency and intensity from child to child. Of those children with epilepsy, approximately 25% continue to experience poor seizure control even with anti-epileptic drug therapy.1 In addition, it is well documented that epilepsy in children is associated with problems in multiple areas, including academic achievement, behavioural and emotional adjustment, and social competence.2-5 Even when seizures are well controlled with antiepileptic medications, these problems may persist6 because of abnormal brain formation or function, continuing epileptic activity in the brain (without symptoms), or side-effects from antiepileptic medications.
Although overall intellectual ability in children with epilepsy is comparable to the normal childhood population7 they are at greater risk for learning problems and academic under achievement8. Even in those with normal intelligence, reports of deficits in specific areas related to thinking and learning abilities are common, particularly in the areas of attention and concentration, memory, organizational skills and academic achievement.9,10 Indeed, many children do not fit the typical school definition of learning disabilities, as their reading, spelling and math skills may be appropriately developed. Nonetheless, they do have significant challenges for learning due to the particular areas of weakness described above.
While some children with epilepsy have global learning problems (developmental delay) caused by extensive brain abnormalities, more often these children have a variety of specific learning problems that can be attributed to a focal brain abnormality. For example, children who have a scar in the middle part of the temporal lobe (mesial temporal sclerosis) may have permanent short term auditory or visual memory problems. Other factors such as seizures, AEDs and fatigue may also contribute to transitory learning problems. For example, seizures and post-seizure fatigue or confusion (post ictal state) can disrupt learning for minutes or hours. Although it is well known that visible seizures interrupt learning, there is some evidence that epileptiform discharges which occur in the brain between seizures (interictal activity) may also disrupt learning. This is referred to as Transient Cognitive Impairment (TCI).11 Finally, in our study of a group of children with poorly controlled epilepsy, children themselves frequently cited fatigue as an important factor that decreased their availability to learn in school12. It is likely that these transitory disruptions in learning account for parent and teacher reports that academic performance in these often children fluctuates from day-to-day. Teaching and learning strategies that take into account the dynamic learning profile of these children, for example intensive programmes that utilize repetitive instruction techniques, are critical to the child’s academic success.
Emotional and Behavioural Issues
Emotional and behavioural difficulties are also disproportionately high in children with epilepsy. For example, psychiatric disorders were identified in 34.6% of children with seizures compared to 6.6% in the general population and 11.6% in children with other chronic illnesses.1 Some of the more common emotional and behavioural difficulties seen in these children include increased anxiety, depression, irritability, hyperactivity, aggression, and in some cases, irrational periods of rage. In a more recent study 3 of behaviour in children in the 6 months before a first recognized seizure, 24.6 % of the children had higher than expected rates of behavioural problems (particularly attention difficulties). This finding suggests that epilepsy is a more complex disorder that may manifest itself with behavioural disturbances, as well as seizures.
In a small proportion of these children, verbal or behavioural aggression may occur spontaneously with minimal or no provocation. There is a paucity of research exploring intermittent spontaneous aggression in children with epilepsy and mechanisms underlying aggression in these children are poorly understood. Aicardi 13 proposed one causal mechanism for behavioural disturbances by suggesting that epileptiform discharges in the brain may produce disorganization of brain function that then affects behaviour. The authors of another paper14 suggest that behavioural aggression may be result from certain abnormal regions of the brain producing epileptic activity or may be aggravated by the effects of antiepileptic drug therapy.
Many parents in our clinical setting describe a variety of scenarios in which they have observed changes in their child’s mood accompanied by increased aggression. The most frequently cited complaint is that introduction or high doses of certain antiepileptic medications coincide with behavioural changes including irritability, verbal, or even physical aggression. For example, this might take the form of a younger child hitting other children. If the behavioral side effects are intolerable, reducing or discontinuing the antiepileptic medication while adding another medication may be necessary. Second, behavioral changes, such as increased irritability and verbal or physical aggression, often herald the onset of a seizure. These behavioral changes can occur minutes to days before a seizure. During this period, certain triggers (stimuli) may further irritate the child, producing increased frustration or aggression. Therefore, it may be prudent to reduce over stimulation in the school setting during this period, for example decreasing academic workload. The third scenario comprises a smaller group of children who experience sudden outbursts of verbal or physical aggression. These children present special challenges to the family, school and health professionals.
Characteristically, the episode of aggressive behaviour may appear with minimal or no provocation and can go on for some time. Our clinical observations, as well as conversations with children, parents, and teachers suggest a trajectory for episodic verbal or physical aggression. It seems that the child perceives a certain situation as noxious. For example, some children with epilepsy may have very sensitive hearing. Loud noises or a confusing number of noises in the classroom might precipitate explosive behaviour. Once the trigger stimulates an angry feeling, it is difficult for these children to ‘put on the brakes’. It is not that they ‘won’t’ control their aggression, rather, children tell us that they ‘cannot’ control the aggressive outbursts. Parents report that children often experience remorse following an aggressive outburst. They frequently berate themselves, for example, saying, “I’m a bad person”. Interventions that focus on immediately removing the stimulus/trigger, or removing the child from the stimulus, can sometimes diffuse their anger and outburst. It is our experience that these children do not respond to standard behavioural management strategies or restraint alone. Rather a combination of strategies, including assessment and follow-up by psychiatry, and interventions such as psychotropic medications and/or intensive behavioural therapy, may be warranted.
Participation in physical activities and social engagement with peers is particularly important during childhood development. Yet in our conversations with families of children with epilepsy, we frequently hear that seizures, and the associated secondary problems, often exclude children from full participation in academic, recreational and social experiences. Concern for the child’s safety may lead to restriction of normal school activities, which most children take for granted. This increases the child’s sense of social isolation. Isolation from these important social learning experiences further enhances a negative perception of self, informing the child, that he or she is ‘not normal’ at time in life when being ‘normal’, not ‘different’ is highly valued. It is important that parents advocate for extra support in the school to facilitate the child’s participation in school activities (e.g. playground, gym) that facilitate interactions with other children. Involvement in school activities is paramount to fostering a sense of emotional well-being well as, promoting social and physical development.
In practical terms, the stigma associated with epilepsy, and the insensitivity of others, are also stressors that affect the emotional and adaptive behavioural responses in these children. It is our experience that many of the children with whom we come in contact are excluded from activities with classmates; teased and bullied; and sometimes suspended from school because of behavioural issues. These factors further reinforce the child’s negative view of him/herself and alienate the child from the usual social and learning experiences that promote self-esteem and normal social development.
In summary, epilepsy is a complex disorder that has an impact on many aspects of a child's development and functioning. As a result, many of these children are at increased risk for unsuccessful school experiences; difficulties in social engagement with peers; inadequate social-skills; and poor self-esteem. It is, therefore, important that a partnership between educators, family members, and health care providers be instituted so that a plan for academic success as well as a plan for safety, management of emotional or behavioural dysregulation and active social integration be developed and evaluated on an ongoing basis.
- Hauser WA & Hesdorffer DC. Remission, intractability, mortality, and comorbidity of seizures. In Wyllie E, editor. The treatment of epilepsy: principles and practice. Philidelphia. PA: Lippincott Williams and Wilkins, 2001. pp. 139-145.
- Bourgeois, B. F. D., Prensky, A. L., Palkes, H. S., Talent, B. K., & Busch, S. G. (). Intelligence in epilepsy: A prospective study in children. Annals of Neurology, 1983, 14: 438-444.
- Austin, J. K., Harezlak, J., Dunn, D. W., Huster, G. A., Rose, D. F., & Ambrosius, W. T. Behavior problems in children before first recognized seizures. Pediatrics, 2001, 107(1):115-122.
- Hoare P. The development of psychiatric disturbance among school children with epilepsy. Dev Med Child Neurol 1984, 26: 23-4.
- Seidenberg M, Beck N, Geisser M, Giordani B, Sackellares JC, Berent S et al. Academic achievement of children with epilepsy. Epilepsia 1986, 27: 753-759.
- Sillanpaa M., Jalava M, Kaeva P, Shinnar S, Long-term prognosis of seizures with onset in childhood, N Engl J Med 1998, l338:1715-22
- Rutter M. Graham P and Yule WA. Neuropsychiatric Study in Childhood. Philadelphia: J.B. Lippincott, 1970.
- Aldenkamp AP Learning disabilities in children with epilepsy. In: A.P. Aldenkamp, W.C.J. Alpharts, H. Meinardi, & G. Stores (Eds.). Education and epilepsy: Proceedings of an international workshop on education and epilepsy, 1987, 21-37. Berwyn, PA: Swets North America.
- Smith ML, Elliott IM, Lach L. Cognitive skills in children with intractable epilepsy: Comparison of surgical and non-surgical candidates. Epilepsia 2002, 43:631-7
- Williams J. Learning and behavior in children with epilepsy. Epilepsy & Behavior 2003, 4(2):107-111
- Rugland AL. ‘Subclinical’ Epileptogenic Activity. In: Sillanpaa M, Johannessen SI, Blennow G, and Dam M. eds. Paediatric Epilepsy. Wrightson Biomedical Publishing Ltd, 1990, pp. 217-224
- Elliott I, Lach L, Smith ML. Impact of intractable epilepsy on quality of life in children: child, adolescent and parent pre-surgical perspectives. Epilepsia 1999, 40 (Suppl 7): 112.
- Aicardi J. Epilepsy as a non-paroxysmal disorder. Acta Neuropediatr1996, 2:249-257
- Juhasz C, Behen ME, Muzik O, Chugani DC, Chugani HT. Bilateral Medial Prefrontal and Temporal Neocortical Hypometabolism in Children with Epilepsy and Aggression. Epilepsia, 2001, 42(8):991-1001
Reprinted with permission from Epilepsy Canada. Lumina, Fall 2004;4-6.