The Child with Epilepsy
By: Judith Siskind, Ph.D., Epilepsy Foundation of Florida Staff Psychologist
Parents need to help them lead as normal a life as possible
Many children with epilepsy experience few seizures and no significant learning difficulty. In fact, some excel academically in school despite occasional seizures. Children whose seizures have persisted for several years despite adequate treatment are the most likely to experience difficulty in school; the prognosis for successful learning is better if the seizures are promptly brought under control with an anticonvulsant regimen.
While earlier age of onset is associated with higher risk of cognitive problems, research has increasingly implicated both seizures and medications as playing a likely role in the cognitive difficulties of many children with epilepsy. Various studies report that between 10% and 30% of children with epilepsy underachieve in reading, spelling, and/or math. Those children with functional deficits in language-related abilities are likely to have learning difficulty. Short-term verbal memory is also essential for school success, as are attention and concentration. Any or all of these may be disrupted by medications or by the seizures themselves.
However, there are other factors which also play an important role in a child’s academic success and which are even harder to measure: the expectations of teachers, parents, and the children themselves. Much of the learning children do is through the feedback they receive from others’ evaluations of their abilities. If teachers or parents come to expect less of the child, the child will expect less of himself or herself and may not try as hard to surpass previous levels of achievement in school or beyond. For parents and teachers, the issue of how much to expect from a child poses a dilemma, for they wish to avoid placing unrealistic goals or too much pressure on a child with actual learning difficulties. However, parents should keep in mind that most children have mixed ability levels and may excel in some areas while needing extra help with others (e.g., memorizing a larger number of facts for exams).
Parents also need to be alert to signs of lowered teacher expectations. It is common for teachers to describe children with seizure disorders as “unmotivated” because of their combination of specific deficits, occasional drowsiness from medications, missed school days, and possibly diminishing self-confidence. Undetected absence seizures often make the child appear “tuned out” or simply dull.
To avoid this, it is important for parents to communicate with their child’s teacher. Most teachers are quite responsive to a child’s needs and strengths when they are made aware of the interplay of medical and cognitive factors. They are far less likely to “write off” the child as a low achiever and often become valuable observers/reporters concerning the timing of periods of reduced alertness that may signal either seizure activity or heightened side effects of medications. (The timing of the does can sometimes be changed minimize the side effects during key periods at school.)
In the interest of preventing both seizures and head injury, children with epilepsy are often prevented from partaking in physical activities at school or in sports. While it is true that excessive heat can lower the “seizure threshold” for some people, the damage done by removing athletic activities from a child’s schedule can be considerable. Enjoyment of a sport, participation on a team, and development of skills are all forfeited in the interest of seizure prevention, and the gap between the child’s skills and those of his peers widens. While swimming must be carefully supervised and certain activities with a heightened risk of head injury evaluated for their appropriateness, it is not in the child’s best interest to have any important area of his or her development thwarted because of concern about the possibility of a seizure.
Closely related to parental concerns about physical education are fears that stress in general, whether physical or emotional, will lead to increased seizure risk. Unusual stress may sometimes contribute to the likelihood of a seizure occurring, but a lack of challenge and enjoyable activity lead to an ongoing form of stress as well. It is stressful to a child to fear that he or she will never be able to stay alone, play on a team, swim, or drive. Mastery of such challenges fosters a sense of initiative and self-esteem, while not having mastered them, even through lack of opportunity, fosters self-doubt. Dr. John Freeman, a noted child neurologist, refers to the excessive restriction of activities for the child with epilepsy as “superimposing handicap on disability.”
It is not easy for parents who have witnessed their child’s seizures to avoid a tendency to overprotect, especially if prior physical or psychological harm has already occurred through seizures; it is basic and essentially healthy parental instinct. For many parents, however, it is necessary to willfully “override” this instinct in order to protect the child’s growth and self-esteem, to ensure that the child with epilepsy is not more disabled by a collective fear of the next seizure than by the seizures themselves.