Since the diagnosis of epilepsy is based primarily on the existence of seizures, the primary focus in treatment and management must be on the main symptom, the seizure.
Many psychologists, psychiatrists, neurologists, and pediatricians have attempted to describe the epileptic personality. This is an impossible task since the range of emotional responsiveness, intellectual functioning, impulse control, and bizarreness of thinking covers a very diversified spectrum.
These characteristics range all the way from the emotionally warm and controlled, intellectually gifted, and unusually imaginative and creative to the emotionally immature and uncontrollable, mentally retarded, and schizophrenic fantasies. Since the range of possibilities regarding personality configuration is very broad, each patient with a diagnosis of epilepsy needs to be looked upon as an individual with unique personality characteristics.
Generally speaking, the intellectual and emotional elements of the epileptic's personality may or may not be related to the seizure disorder itself. Since there are various kinds of seizures emanating from different parts of the brain, it is extremely hard to generalize about the behavioral concomitants of epilepsy. Moreover, the onset of seizures plays an important role in the kind of personality configuration that may develop. For example, a person whose seizures have occurred from birth on will, by definition, be different from a person whose seizures began at 10 years of age following a traumatic injury to the brain. With the onset of seizures at age 10, the personality has gone through the earlier critical stages of development without the complications of a seizure disorder.
Oftentimes, the personality we observe in a person with epilepsy is markedly influenced by the kind of medication used for seizure control. Since varying dosages as well as various configurations of medication are required for each individual, some patients may show mildly tranquilized states while others may seem to be in a state of stupefaction from time to time when medicated to a symptomfree level.
In my experience in evaluating and re-evaluating children with epilepsy, I have encountered two major problems concerning their intellectual functioning. Many epileptic children with superior and genius levels of intellectual capacity, as measured by standard psychological tests, seem unable to function up to their capacity in the school environment when maintained on a level of medication that prevents the occurrence of seizures. For this reason, school authorities and parents often become perplexed by poor school performance, lethargy, and what sometimes appears to be withdrawal or schizoid behavior.
I think it is extremely important to be aware of this problem so that we can avoid stigmatizing the epileptic child with more problems than he or she really has. When this problem seems evident in school or in adjustment, the child should have additional tutorial help and a great deal of patience and understanding on the part of teachers and parents.
The second problem I encounter in my follow-up of children with epilepsy is the frequency with which professionals question the child's intellectual capacity and request repeated psychological evaluations. In a hospital setting, where many of these children are admitted for their neurologic disorder or for some other problem, the nurses and doctors who encounter them for the first time sometimes see these children as being "intellectually dull or withdrawn."
Just recently, a young teenage girl was referred to me for an evaluation because her behavior while in the hospital was described as dull and withdrawn. The staff had noted that she seemed a little awkward and clumsy and they wondered whether there was an underlying emotional disorder. On examination, I found her to have very superior intelligence and to be very imaginative and rather healthy emotionally. Her superficial behavior as observed by the staff seemed to be secondary to her neurologic dysfunction and to the medication she was on while in the hospital.
Parents who have sick children are understandably anxious and want specific answers concerning their children's illnesses. They want to know what is the cause of the illness, what is the best treatment, and whether the disorder is curable. Because of the broad spectrum of possibilities concerning all these elements for the epileptic patient, it is extremely hard to alleviate the anxiety of the parents. Understandably, they seek out many neurologists in many centers and are always keen to new medical developments that might shed light on a "cure" for their child.
I think it is important for pediatricians to recognize rather than belittle this anxiety and to help families deal with it. An unsympathetic attitude on the part of a pediatrician or neurologist may be all that is necessary to alienate the family and force them to start a totally new "work-up" in a new center when all that is possible has already been done.
What I am saying, in effect, is that the physician's role in the management of the child with epilepsy involves not only focus on the medical and physiologic factors, but also involves an understanding of the total environmental situation, the coaction of the medication with the child's behavioral performance, and a supportive role for the family so that the child is not dragged from place to place while the parents "shop around" for greater understanding of the child's problem.
What parents are probably shopping around for is a sympathetic doctor who understands their feelings about the child's disorder and who has compassion for the parents' real and deep concern for their child's health and happiness.