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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The value of a disabled child

What is the life of a physically disabled child worth? It’s a cruel, but important question for the devoted people who work in pediatric rehabilitation as well as Treasury officials who want to cut costs and medical ethicists who think about what is morally right.

The annual financial cost of taking care of an Israeli child with cerebral palsy, muscular dystrophy or other disabilities is around $50,000. The US Environmental Protection Agency calculated that the “statistical value” of a coal miner, calculated by how much the government would invest in preventing him from dying in a work accident, is $6.1 million. Governments are willing to spend $129,000 a year to keep a kidney-failure patient alive using dialysis to clean their blood.

Related:

• Kids taught how to conquer world on wheelchairs
• Children play their way to improved concentration

According to Dr. Eliezer Be’eri, deputy director-general of Jerusalem’s Alyn Hospital, “taking care of a child in our pediatric rehabilitation hospital is worthwhile for society. But I can’t look at people as numbers. It’s easy to lose our humanity. Money is not the only thing to be considered. Our humanity is at risk. What are all our resources worth if we are not humane?”

“A brain-damaged child will not contribute to society, but I must take care of him because he’s a human being. I have to do it not because society might one day benefit from him. Even though economic benefits are important, expenses mustn’t determine if it’s ‘worthwhile’ to treat such a child. We look at their humanity, not their usefulness. It strengthens our own humanity.”

Be’eri was one of the speakers at Alyn’s First Conference on Pediatric Rehabilitation, which was held recently at Jerusalem’s Crowne Plaza Hotel and special workshop sessions at the hospital in the capital’s Kiryat Hayovel neighborhood.

The multidisciplinary medical institution, the only one of its kind in Israel and one of the few in the world, is directed by Dr. Maurit Beeri (no relation to Eliezer) and treats hundreds of children and teenagers as inpatients and outpatients. It has both regular rehabilitation and respiratory rehabilitation departments and a medical-educational rehab department for children as young as six months old. A rehabilitative day care center is available for infants and toddlers up to the age of three years, while kindergartens and a school serve children up to age...

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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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Being Left Out Puts Youths at Risk for Depression

The challenges that come with battling a chronic medical condition or developmental disability are enough to get a young person down. But being left out, ignored or bullied by their peers is the main reason youths with special health care needs report symptoms of anxiety or depression, according to a study to be presented`123 April 29, at the Pediatric Academic Societies (PAS) annual meeting in Boston.

Being bullied has been shown to increase students' risk for academic and emotional problems. Little research has been done specifically on how being a victim of bullying affects youths with special needs.

In this study, researchers led by Margaret Ellis McKenna, MD, senior fellow in developmental-behavioral pediatrics at Medical University of South Carolina, investigated the impact of bullying, ostracism and diagnosis of a chronic medical condition on the emotional well-being of youths with special health care needs.

Participants ages 8-17 years were recruited from a children's hospital during routine visits with their physicians. A total of 109 youths and their parents/guardians completed questionnaires that screen for symptoms of anxiety and depression. Youths also completed a screening tool that assessed whether they had been bullied or excluded by their peers.

The main categories of youths' diagnoses included attention-deficit/hyperactivity disorder (39 percent), cystic fibrosis (22 percent), type 1 or 2 diabetes (19 percent), sickle cell disease (11 percent), obesity (11 percent), learning disability (11 percent), autism spectrum disorder (9 percent) and short stature (6 percent). Several children had a combination of these diagnoses.

Results of the youths' answers on the questionnaires showed that being bullied and/or ostracized were the strongest predictors of increased symptoms of depression or anxiety. When looking at both parent and child reports, ostracism was the strongest indicator of these symptoms.

"What is notable about these findings is that despite all the many challenges these children face in relation to their chronic medical or developmental diagnosis, being bullied or excluded by their peers were the factors most likely to predict whether or not they reported symptoms of depression," Dr. McKenna said.

"Professionals need to be particularly alert in screening for the presence of being bullied or ostracized in this already vulnerable group of students," she added.

In addition, schools should have clear policies to prevent and address bullying and ostracism, Dr. McKenna suggested, as well as programs that promote a culture of inclusion and sense of belonging for all students.

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Unruly Behavior May Be Caused By Mental Disorder

When children behave badly, it's easy to blame their parents. Sometimes, however, such behavior may be due to a mental disorder. Mental illnesses are the No. 1 cause of medical disability in youths ages 15 and older in the United States and Canada, according to the World Health Organization.

"One reason we haven't made greater progress helping people recover from mental disorders is that we get on the scene too late," said Thomas R. Insel, MD, director of the National Institute of Mental Health (NIMH) and the featured speaker at the American Academy of Pediatrics' Presidential Plenary during the Pediatric Academic Societies (PAS) annual meeting in Boston.

Dr. Insel discussed signs of mental illnesses in young children and the importance of early diagnosis and intervention in his presentation, "What Every Pediatrician Needs to Know about Mental Disorders," on April 29, in the Hynes Convention Center.

As the first line of defense, pediatricians can detect mental disorders early and ensure children get treatment as soon as possible, Dr. Insel said. While questionnaires currently are the best way for doctors to screen for mental illness, better tools are on the horizon, such as cognitive and genetic tests.

It's also important to understand that mental illnesses are a developmental brain disorder even though they can look like behavior problems, Dr. Insel explained.

"The future of mental illness has to be at the point where we aren't treating behavior separately from the rest of the person," he said. "There needs to be full integration of behavior and medical concerns to ensure that we are able to care for the whole person and not just one system."

In addition to serving as director of the NIMH, Dr. Insel is acting director of the National Center for Advancing Translational Sciences, a new arm of the National Institutes of Health that aims to accelerate the development of diagnostics and therapeutics.

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Being Bullied Tied to Anxiety and Depression in Certain Children

Special-needs youth with chronic medical conditions or developmental disabilities are at risk for anxiety and depression if they're excluded, ignored or bullied by other young people, a new small study says.

It included 109 youngsters, ages 8 to 17, who were recruited during routine visits to a U.S. children's hospital. The patients and their parents completed questionnaires that screen for symptoms of anxiety and depression, and the youngsters also completed a questionnaire that asked them about bullying or exclusion by their peers.

The patients in the study had one or more conditions such as: attention-deficit hyperactivity disorder (39 percent); cystic fibrosis (22 percent); type 1 or 2 diabetes (19 percent); sickle cell disease (11 percent); obesity (11 percent); learning disability (11 percent); autism (9 percent); and short stature (6 percent).

The researchers found that being bullied and/or excluded by peers were the strongest predictors of increased symptoms of depression or anxiety in the young patients.

"What is notable about these findings is that despite all the many challenges these children face in relation to their chronic medical or developmental diagnosis, being bullied or excluded by their peers were the factors most likely to predict whether or not they reported symptoms of depression," study leader Dr. Margaret Ellis McKenna, a senior fellow in developmental-behavioral pediatrics at the Medical University of South Carolina, said in an American Academy of Pediatrics news release.

"Professionals need to be particularly alert in screening for the presence of being bullied or ostracized in this already-vulnerable group of students," she added.

McKenna said schools should have clear policies to prevent and address bullying and exclusion, as well as programs that promote a culture of inclusion and a sense of belonging for all students.

The study was slated for Sunday presentation at the Pediatric Academic Societies' annual meeting in Boston. The data and conclusions should be viewed as preliminary until published in a peer-reviewed medical journal.

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AccessSurf - Surfing for People with Disabilities

AccessSurf Hawaii

I just had patients return from Hawaii where they took their son
surfing with accessSurf.

They had a great experience.
Check with your physician if this is appropriate for you or your child.

JR

AccessSurf

Our Mission:

AccesSurf empowers people with disabilities by providing adaptive surfing instruction and therapeutic educational programs on water recreation and enriches lives by assisting families to access the beach and ocean in a barrier free environment.

Our Vision:

In the aloha spirit that Duke Kahanamoku, “The Father of Surfing,” introduced surfing to others, AccesSurf will be the leader in recreation and leisure opportunities in the beach environment for people with disabilities through providing therapeutic instruction for the advancement of adaptive surfing and ocean recreation throughout the state of Hawaii and worldwide for generations to come.

http://www.accessurf.org/about.html

https://www.accessurf.org/

Holocaust Memorial Day: NAZI PERSECUTION OF THE DISABLED: MURDER OF “THE UNFIT”

The Nazi persecution of persons with disabilities in Germany was one component of radical public health policies aimed at excluding hereditarily “unfit” Germans from the national community. These strategies began with forced sterilization and escalated toward mass murder. The most extreme measure, the Euthanasia Program, was in itself a rehearsal for Nazi Germany’s broader genocidal policies.

The ideological justification conceived by medical perpetrators for the destruction of the “unfit” was also applied to other categories of “biological enemies,” most notably to Jews and Roma (Gypsies). Compulsory sterilization and “euthanasia,” like the “Final Solution,” were components of a biomedical vision which imagined a racially and genetically pure and productive society, and embraced unthinkable strategies to eliminate those who did not fit within that vision.....

AN OPEN SECRET

On July 14, 1933, the German government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law called for the sterilization of all persons who suffered from diseases considered hereditary, including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against the disabled, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

The term “euthanasia” (literally, “good death”) usually refers to the inducement of a painless death for a chronically or terminally ill individual. In Nazi usage, however, “euthanasia” referred to the systematic killing of the institutionalized mentally and physically disabled. The secret operation was code-named T4, in reference to the street address (Tiergartenstrasse 4) of the program's coordinating office in Berlin.

Ashes from cremated victims were taken from a common pile and placed in urns without regard for accurate labeling. One urn was sent to each victim's family, along with a death certificate listing a fictive cause and date of death. The sudden death of thousands of institutionalized people, whose death certificates listed strangely similar causes and places of death, raised suspicions. Eventually, the Euthanasia Program became an open secret.

On August 18, 1939, the Reich Ministry of the Interior circulated a decree compelling all physicians, nurses, and midwives to report newborn infants and children under the age of three who showed signs of severe mental or physical disability. At first only infants and toddlers were incorporated in the effort, but eventually juveniles up to 17 years of age were also killed. Conservative estimates suggest that at least 5,000 physically and mentally disabled children were murdered through starvation or lethal overdose of medication.

http://www.ushmm.org/museum/exhibit/focus/disabilities/

A parent's guide to Section 504 in public schools

This important civil rights law can provide educational benefits to kids with learning disabilities and/or AD/HD in public schools.

By Mary Durheim

Section 504 — just what exactly is it? You've probably heard about it, but every school district addresses Section 504 in a different manner. Some districts have even been heard to say, “We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional. This article attempts to answer basic questions pertaining to the implementation of Section 504 in public school systems.

What is Section 504?

Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.

Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...” [29 U.S.C. §794(a), 34 C.F.R. §104.4(a)].

Who is covered under Section 504?

To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability) [34 C.F.R. §104.3(k)(2)].

Who is an “individual with a disability”?

As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” [34 C.F.R. §104.3(j)(1)].

What is an “impairment” as used under the Section 504 definition?

An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities” (Appendix A to Part 104, #3)].

http://www.greatschools.org/special-education/legal-rights/868-section-504.gs?page=1