Intellectual and behavioral issues in children with epilepsy

This article discusses behavioral and intellectual disabilities in children who have epilepsy.

Children with epilepsy can face greater intellectual and behavioral problems compared to their peers. New research presented at the American Epilepsy Society's (AES) 68th Annual Meeting explores the complex emotional, behavioral and intellectual disabilities associated with childhood epilepsy and their effect on development.

The first of three studies (Platform Session A.04) presents a culmination of 20-30 years of research that sought out to understand if intellectual disability (ID) predicts a low chance of remission and a high risk of intractability in epilepsy. Researchers of this study focused on examining the severity of ID to predict epilepsy outcome.

A cohort of children from Nova Scotia who developed epilepsy between 1977 and 1985 and had ID was followed for an average of 21 years following diagnosis. The initial study followed 692 children with incident epilepsy, of which 147 (21%) had intellectual disability. The degree of intellectual disability was established by standard psychometric testing around 5 years of age, and confirmed by subsequent academic achievements.

Researchers at Dalhousie University found that the degree of intellectual disability in children with epilepsy did predict seizure outcome. Mild intellectual disability was associated with a substantially better prognosis for remission and absence of intractability than moderate or severe/profound ID. Focal epilepsy and mild intellectual disability had the same rate of remission and intractability as focal epilepsy with normal intelligence. While mild ID seriously affects social outcome, it is not an important prognostic factor for seizure outcome, particularly if the epilepsy is focal.

The level of ID varied by the type of epilepsy present, with focal epilepsy apparent in 70% with mild ID, 38% with moderate and 29% with severe/profound ID. Generalized symptomatic epilepsies were most common with moderate (53%) and severe/profound ID (65%) than with mild ID (13%). Participants with mild ID were more likely to be in remission at the end of the twenty-year follow up (50%) than moderate (34%) or severe/profound ID (28%). Intractable epilepsy was more common with moderate (35%) and severe/profound (59%) than with mild ID (17%).

"Mild intellectual disability has a profound effect on a child's adaptation to adult life," said Dr. Peter Camfield, M.D., Professor Emeritus, Department of Pediatrics, Dalhousie University. "However, it is not particularly associated with severe epilepsy. Moderate to severe ID has ominous implications for seizure control."

A second study (Poster 1.097) explores the relationship between behavioral/psychiatric disorders and childhood epilepsy. Researchers at Northwestern University's Feinberg School of Medicine referenced children with the Connecticut Study of Epilepsy (CSE) that were recruited between 1993 and 1997, and underwent comprehensive reassessments between 2002 and 2006, 8 to 9 years after they were diagnosed with epilepsy. Within those 16 years, cognitive testing was conducted with a Wechsler IQ test and behavioral assessment with the parent-reported Child Behavior Check List (CBCL). Controls of this study were similar-aged siblings without epilepsy who received the same assessment instruments.

"Further analyses suggest the findings based on parent-reported behavior largely reflect parental emotional impact," said Dr. Soong Eom, Ph.D., Northwestern University Feinberg School of Medicine.

Researchers analyzed the CBCL and Wechsler IQ test results of 301 children with epilepsy (CWE) and 156 controls. The average age of CWE cases was 12.5, and 13.2 for controls. The cases of CWE were divided into two groups, "complicated" indicating a clear brain insult or abnormal exam, and "uncomplicated" indicating all normal exams. The case group was comprised after excluding complicated cases and those who were not seizure-free and on medication.

In an initial comparison, children with epilepsy across the board had worse behavioral problem scores and a lower social competency score than controls. After excluding complicated cases and those who were not seizure-free and off medication, there was a persistent difference between children with epilepsy and controls on parental reports of behavioral problems.

In a third study (Poster 2.023) presented by the University of Wisconsin Madison, a standardized psychiatric interview was conducted to determine whether children with recent-onset epilepsy would have higher rates of any psychological disorder than controls.

The study followed 178 children between the ages of 8 and 18, consisting of 105 children with epilepsy and 73 controls. The inclusion criteria for CWE were diagnosis of epilepsy in the past 12 months, no developmental disabilities or neurological disorders, normal neurological examinations and clinical imaging. Controls in this study were first-degree cousins of CWE with no history of seizures, early initial precipitating injuries, developmental or neurological diseases, or loss of consciousness greater than 5 minutes. Information was gathered through separate interviews with parents and participants at baseline and at a 2 year follow-up.

"This study indicates that rates of psychological disorders are higher in children with epilepsy compared to children without seizures," said Dr. Jana Jones, Ph.D., University of Wisconsin. "This study also indicates that there may be differences in the course of psychological disorders in children with epilepsy associated with focal and generalized seizures."

Results of the study found that compared to controls, children with epilepsy have higher rates of psychological disorders at baseline and 2-year follow-up (59.0% vs. 23.3%). At baseline, children with epilepsy were more likely to have depression (15.2% vs. 2.7%), anxiety (34.3% vs. 15.1%) and ADHD (22.9% vs. 6.8%). These differences remained at the two-year follow-up with one exception; rates of depression were no longer significantly different (7.6% vs. 2.7%) between the CWE and the controls. At baseline, children with focal seizures and generalized seizures had similar rates of psychological disorders (67.3% vs. 51.0%). At 2-year follow-up children with focal seizures had higher rates of psychological disorders (65.5% vs. 36.7%). Children with focal seizures also had higher rates of anxiety disorders (43.6% vs. 20.4%) and ADHD (25.5% vs. 8.2%) but not depression (7.3% vs. 8.2%) when compared to children with generalized seizures.

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Study: Special-Ed Students at Greater Risk of Being Bullied

Students with visible disabilities and those receiving special education services for behavioral problems are at greater risk of being bullied and of bullying others, according to a new study.

These children also are more likely to engage in antisocial behavior and have disciplinary problems at school, the researchers found.

The findings reveal the complex nature of bullying, the study authors pointed out in the report, which was published June 27 in the Journal of School Psychology.

"These results paint a fairly bleak picture for students with disabilities in terms of bullying, victimization and disciplinary actions," lead author Susan Swearer, professor of school psychology at the University of Nebraska-Lincoln, said in a university news release. "Sadly, these are the students who most need to display pro-social behavior and receive support from their peers."

The study included more than 800 special-ed and general-ed students between the ages of 9 and 16 from nine different schools. The investigators found that 38 percent of the students admitted to bullying other students and 67 percent said they had been the victims of bullies.

Not only were special-ed students at greater risk for being bullied or bullying others, students with visible or more obvious disabilities, such as language or hearing impairments or mild mental handicaps, were victimized most often. They also reported the highest levels of bullying.

On the other hand, the study authors found that students with non-observable disabilities, such as a learning disability, were not affected as much by bullying and reported similar levels of bullying as students without disabilities.

"The observable nature of the disability makes it easy to identify those students as individuals with disabilities, which may place them at greater risk for being the easy target of bullying," Swearer said in the news release. "Also, being frustrated with the experience of victimization, those students might engage in bullying behavior as a form of revenge."

There were no significant differences in bullying between boys and girls, the findings showed. General-ed students in fifth grade were victimized more often than students in grades six through nine. For students in special-ed, however, there was no difference in bullying by grade level.

Anti-bullying interventions should focus on students' pro-social skills, the study authors concluded. Those in general education could serve as pro-social role models for students with disabilities, they suggested. In addition, students with visible disabilities should be better integrated into general-education classes, which may prevent them from being bullied.

"Programming should be consistently implemented across general and special education, should occur in each grade, and should be part of an inclusive curriculum," the authors noted. "A culture of respect, tolerance and acceptance is our only hope for reducing bullying among all school-aged youth."

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Disabilities: Emergency Preparedness Training. Do you have a plan?

Disabilities: Emergency Preparedness Training

For the millions of Americans with disabilities, emergencies such as fires and floods present real challenges. Learn how people with disabilities, their families, and first responders can plan ahead for safety during a disaster.

More than 1 in 5 Americans have a disability, and many more are at risk for developing or acquiring one in their lifetime through illness, injury or aging.

Disasters can strike quickly and without warning, forcing people to leave or be confined in their home. People with disabilities and their family members should make plans to protect themselves in the event of an emergency. It is also important that first responders know how to evacuate people with disabilities safely and quickly.

Nickole's Story

In 2008, a rare winter storm buried Portland, Oregon under more than a foot of snow. The city was gridlocked. Nickole Chevron was stuck in her home for eight days. Many people would consider that an inconvenience. For Nickole, whose muscles are too weak to support her body, those eight days were potentially life-threatening.

Born with spinal muscular atrophy, a genetic disease that progressively weakens the body's muscles, Nickole is fully reliant on a wheelchair and full-time caregivers for most routine tasks.
Being alone for eight days was not an option. So Nickole signed up for "Ready Now!  [PDF - 4.8MB]," an emergency preparedness training program developed through the Oregon Office of Disability and Health.

"The most important thing I learned from 'Ready Now!' was to have a back-up plan in case of an emergency situation," she said. "When I heard the snow storm was coming, I emailed all my caregivers to find out who lived close by and would be available. I made sure I had a generator, batteries for my wheelchair, and at least a week's supply of food, water and prescription medication."

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