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Pediatric Patients Presenting with Psychogenic Non-epileptic Seizures
Psychogenic non-epileptic seizures (PNES) involve alterations in behavior, motor activity, consciousness and sensation that resemble epileptic seizures. Unlike epilepsy, PNES are not associated with epileptiform activity in the brain as measured with electroencephalography. The prevalence of PNES admissions to inpatient epilepsy monitoring units was found in various studies to be between 10 and 20% and estimated to be between 2 to 33 per 100,000 in the general population (1). A more recent study found a slightly smaller number, 3.5%, of pediatric patients admitted to an epilepsy monitoring unit to have PNES, with the average age at diagnosis being 13 years, 4 months (2). Comorbid medical illness, including epilepsy, is common in patients with PNES (3). Psychopathology in both the patient and their immediate family members is also common, with rates as high as 75% being found in some studies (3). Historically, PNES was thought to occur as the result of a devastating experience, often sexual abuse (4). Recent studies have not supported this initial theory, illustrating instead that there are often multiple factors contributing to symptom presentation, including psychological, social, and familial variables (5, 6). The data available on adult and pediatric patients presenting with PNES suggests that there are similarities and differences in terms of etiology and presentation of symptoms (7). Due to the high morbidity of this disorder, importance of early diagnosis and treatment, and difficulties diagnosing and providing feedback to parents and children, this article will describe possible risk factors and the diagnostic and feedback process.
Children with PNES often present with a multitude of physical, psychological and family stressors that may contribute to emergence of their symptoms. Factors related to the etiology of PNES have been studied extensively with some common themes emerging (8). Variables impacting presentation of PNES can include mental illness in both the child and immediate family members, social deficits, cognitive deficits, and presence of on-going chronic stressors within the family (9, 10).
PNES often represent a form of conversion or somatization disorder, psychiatric conditions, in which the patient’s experience physiological symptoms in response to psychological stressors (11). Conventional psychological theory postulates that conversion symptoms represent unresolved psychological conflict that is too difficult to express consciously. In some cases the patient may have experienced significant attention from caregivers concerning their physical medical symptoms, thereby reinforcing the symptoms as a means of coping with the stressors mentioned above (10, 9). At times the physical symptoms allow the child to avoid activities or situations that are stressful. In those cases where there is family conflict, the symptoms can allow the family to focus on the physical symptoms while at the same time avoiding the underlying conflict.
Research has demonstrated that there is a high incidence of co-morbid psychopathology in pediatric PNES patients, with estimates as high as 75% of those children having previously diagnosed psychopathology (9, 10, 3). A number of these children also experienced previous psychiatric treatment (6). Rates of psychopathology are higher in patients thirteen and older and there tend to be more girls than boys presenting in adolescence. In those children under the age of thirteen, the rates of boys and girls presenting is nearly equal or with slightly more boys than girls, and rates of psychopathology tend to be somewhat fewer (10). Mood disorders, including depression and anxiety, tend to be the most common co-occurring psychiatric diagnoses, with some studies reflecting rates of nearly 75% (9, 10, 3). Disruptive behavior disorders, including attention deficit hyperactivity disorder and oppositional defiant disorder, are the second most common types of co-occurring diagnoses (9).
Environmental factors that may contribute to presentation of PNES in pediatric patients include: domestic stress, feelings of parental rejection, poor intrafamilial communication, unresolved grief and unhappiness at school (11). Several studies have demonstrated that family conflict, specifically between caregivers, is a significant stressor identified by pediatric patients (12, 9). Social stressors, including bullying by peers or alienation, were described by nearly 70% of the children in a recent study (9). Educational stressors, that may not be recognized or acknowledged, have also been noted in this population. Academic challenges can be related to unrealistic expectations or perceived high expectations for performance, by either the child or their caregivers. Academic, athletic and social achievement may present challenges for some children especially if there is a discrepancy between their expectations and their abilities. Specific learning difficulties have also been noted, such as learning disabilities or the presence of undiagnosed ADHD, in some cases (9).
Unfortunately, the diagnosis of PNES in pediatric patients can take an average of three years. The longer it takes to come to accurate diagnosis, the more likely it is that the child will have been given anticonvulsant medication to treat their presumed epileptic seizures and go without treatment of the underlying psychopathology (13). Accurate diagnosis is made following video EEG (VEEG) recording of a “typical” episode in which epileptiform activity is not present. In conjunction with VEEG, psychological or psychiatric assessment is necessary to determine the nature of psychological problems or stressors contributing to the presentation (4, 10). Patients are frequently unaware of their distress or unable to understand the link between stressors and their symptoms. Children may be more likely to articulate distress related to their physical symptoms, but not have any awareness for other stressors in their lives (10).
Parent involvement in the diagnostic process is necessary to provide a foundation for understanding overall family functioning as well as child specific stressors. Family composition, mental illness, medical illness and caregiver understanding or lack thereof of the child’s current symptoms, all impact how quickly a child presents for evaluation and influences expectations about diagnosis and treatment (3, 14). Part of this diagnostic process involves understanding the degree to which parents are invested in their child having a medical rather than a psychological problem, evaluate how they respond to their child’s physical and emotional complaints, and gain a better understanding for their child’s stressors.
Neuropsychological assessment as part of the diagnostic process is indicated to identify the child’s learning difficulties. Self-reported school struggles and peer relationship problems are significant stressors described by a number of children with PNES (15). Frequently these social struggles are denied, or not believed to be as significant, by both parent and child. The full impact may become more clear through evaluation and eventual treatment (9). At times the true nature of cognitive and linguistic struggles are not fully recognized or understood by the child or their parents, as they may be subtle or compensated for by the child’s tendency for over-achievement. In order to perform well, some children with PNES may have to work harder than their peers to achieve the same results, but have little insight into the strain that this can cause physically and emotionally (16, 9).
Delivery of the Diagnosis
Following a thorough evaluation, it is important to provide feedback regarding the nature of the non-epileptic seizure diagnosis as well as a plan for treatment. The way in which feedback is provided to the child and their parents can impact whether they accept the diagnosis and proceed to treatment or choose to continue pursuing a medical diagnosis through further testing (10). A team approach is typically recommended with the consulting physician, psychologist/psychiatrist, social worker and possibly primary nurse when delivering the diagnosis. Parents are usually provided with information first and separate from the child so that they can ask questions and process their reaction without the pediatric patient. The physician’s role is to provide the framework for the diagnosis, highlighting that although the episodes in question are not due to epilepsy, they are real and due to stress and/or other psychological causes, and providing information on how this determination was made. The psychologist/psychiatrist involved then provides information regarding PNES in general and specific hypotheses regarding why the patient may have developed PNES, as well as the treatment plan. Care should be taken in how this information is delivered, respecting the patient’s privacy. Helping the patient and their parents understand conversion disorder is also an important part of this process. Parents and patients should understand that these episodes do not represent “faking” nor are they intentional in the majority of cases (4, 10).
Providing the family with information about return to normal functioning is a necessary and important part of this process. Perpetuation of the “sick role” and focus on the conversion symptoms will only reinforce the maintenance of the symptoms. Return to school and interaction with peers is a necessary step in treatment and should be the initial focus (9, 11). To do this, consultation with the school to ensure appropriate management of the symptoms and the child’s educational needs, in the case of identified learning difficulties, is also necessary (10). Referral to a therapist for individual treatment of the child, who will work in parallel with the parents, is essential to decrease the frequency and prevent recurrence of non-epileptic seizures. This will aide in management of difficulties as they occur and allow for development of strategies for problem solving. The presence of psychiatric diagnoses, such as depression, anxiety, and ADHD might also warrant psychopharmacological intervention.
Pediatric non-epileptic seizures are a form of conversion disorder that has significant morbidity for the patients effected and can be prevented by early diagnosis and treatment. The diagnostic process is complicated and requires sensitivity to the various factors that may contribute the emergence of conversion symptoms. Inclusion of professionals across both the neurology and psychology/psychiatry disciplines is recommended to best diagnose and inform treatment recommendations.
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