The Whole-Child Approach
Controlling seizures, although extremely important, is only part of the equation of adequately caring for an individual with epilepsy. Equally important is enabling children with epilepsy to reach their full potential in terms of learning, socialization, communication, and enjoyment of life. This ambitious goal requires a strong commitment from and a collaborative approach among doctors, patients, families, and educators.
Even when seizures are well controlled, epilepsy may present a host of other issues that can impact a child's development and ability to function normally. Cognitive impairments that affect language, memory, attention, and other abilities critical to normal development are common among people with epilepsy. As many as half of those with the disorder experience learning problems, ranging from mild difficulties to severe dysfunction. Although cognitive problems are neither unique to epilepsy nor inevitable, a growing recognition of their prevalence has broadened the focus of epilepsy treatment and intervention.
Approximately half of the children who have epilepsy will have some sort of learning difficulty. The most common difficulties would be attention, language and memory.
Amy Morgan, PhD
Learning and Brain Development
Our knowledge of why seizures occur and how they relate to cognitive problems such as learning disabilities is limited. However, it is thought that the electrical discharges responsible for seizures disrupt connections between nerve cells that are essential to normal brain function. To better understand how loss of these neural connections can lead to cognitive impairment, it is important first to understand the relationship between learning and brain development.
On average, the human brain is made up of approximately 100 billion neurons. Most of these develop prior to birth. During gestation new neurons may arise at an astounding rate of 250,000 per minute. As the fetus develops, each new neuron migrates to the location of the brain where it will ultimately reside and begins to form connections with other neurons. A single neuron may ultimately connect with as many as 15,000 other nerve cells.
Amy Morgan, PhD
Early intervention is important because from the ages of zero to three the brain is most malleable and available to rewire or make alternate connections that are necessary because seizures have disrupted normal development.
Learning occurs in large part as a result of the creation of connections between neurons. Neurons establish these so-called neurocircuits with their axons and dendrites, the projections through which nerve cells transmit and receive signals. As a child's brain develops, neurons create an increasingly complex network of connections. The complexity of the brain's neurocircuitry reaches its peak when a child is two or three years old. After that, as part of a natural process that improves the efficiency of neurocircuitry, unused or unnecessary connections are periodically eliminated through a process called pruning.
A child's interactions with people and the environment drive learning and the creation of new connections between neurons. For example, when a child sees a color or a face, or hears a voice, neurons send signals to other neurons along existing connections. They also create new connections, which over time may provide the child with a deeper understanding of experiences or a greater range and complexity of responses to particular stimuli. Learning occurs in this manner throughout childhood, adolescence, and early adulthood. However, the capacity to form new connections diminishes over time.
To learn more about brain anatomy and development and how they relate to brain function, see the section on The Brain.
The Impact of Seizures
The abnormal surges of electrical activity in the brain that are responsible for seizures can disrupt connections between neurons. Such disruptions may make retrieval of memories and information difficult. Regular disruptions may also inhibit the formation of new connections, making it difficult or impossible for an individual with recurrent seizures to acquire new skills or knowledge.
The extent to which seizures impact learning or language depends on seizure frequency, location of seizure activity in the brain, and how much of the brain is involved. For example, partial seizures that occur infrequently in the small region of the brain responsible for motor control of the hand or arm may have little or no direct effect on a child's ability to learn. In contrast, regularly occurring generalized seizures involving large portions of the brain may have profound impacts on learning and may even affect a child's overall intelligence.
Age of seizure onset, early diagnosis, and the success of seizure treatment can also affect a child's learning potential. The brain has an astounding capacity to create new connections and relearn information or behaviors that were lost due to seizures or other insults to the brain. This capacity is called plasticity. In some cases, functions once controlled by one hemisphere, or side, of the brain are transferred to the opposite hemisphere. However, this relearning process takes time, and the brain's capacity to create new connections diminishes with age. This is why early diagnosis and intervention may be critical not only to the success of seizure treatments but also to a child's ability to meet his or her learning potential.
To learn more about seizure types and their relationship to brain anatomy, see the Seizure Types and Syndromes page.
Epilepsy and Cognitive Function
Approximately 50 percent of children with epilepsy have some form of learning difficulty. This compares to approximately 15 percent of the general population who have learning difficulties. The types of learning problems associated with epilepsy range from very subtle effects that may go unrecognized but still impact performance, to severe disabilities in several areas of brain function and overall aptitude.
Mental retardation is the most serious of all cognitive effects associated with epilepsy, but even this condition has variability, ranging from mild to severe. Mental retardation is defined as a condition in which an individual possesses an intelligence of less than approximately two-thirds that of the average intelligence in the general population. The incidence of mental retardation among those with epilepsy is between 20 and 29 percent, as compared to 1 to 2 percent of the general population.
Epilepsy may also affect speech and language, attention, memory, and executive functioning. (Each area is described below.) These four domains are interrelated and integral to success in school and beyond. If any of these areas is compromised, learning often suffers. Therefore, early recognition of problems in any of these areas is critical, so that parents and teachers can take the appropriate steps to help children achieve their learning goals.
Speech and Language
Learning and daily social interactions depend on communication. Human beings express thoughts, feelings, and desires through both spoken and written language. When speech and language are impaired, learning and socialization are greatly compromised.
Although epilepsy increases a child's risk of developing speech and language problems, the particular problems that occur vary according to the location of seizure activity in the brain. Seizures that occur in the temporal and frontal lobes of the left hemisphere—the regions responsible for speech in most individuals—commonly cause problems with speech and/or language. Depending on exactly where seizures occur, they may cause a child to have difficulty recognizing speech sounds or understanding what is being said, or have difficulty expressing his or her own ideas or speaking clearly.
Attention is the ability to remain alert and focused on a particular task, while filtering out unimportant stimuli. Critical to the learning process, attention requires the brain to analyze the environment, categorize and organize stimuli as relevant or irrelevant, and focus the mind on the task at hand.
Staying attentive is challenging for many children, especially in a busy classroom. However, some children struggle inordinately with maintaining attention and concentration. Forty percent or more of children with epilepsy may have attention deficits. These problems take many forms and may be related to specific seizure types. For example, children with generalized seizures are more likely to show restlessness and inattentiveness than are children with partial seizures. In addition, some anticonvulsant medications are known to cause attention problems and hyperactivity in some children. Changing the dosage or type of medication can often reduce or eliminate these problems.
The creation of memories is the set of processes by which we store information and experiences. The capacity to remember information and experiences varies from one individual to another and from one experience to another. For example, emotional moments or stories that pique our curiosity are more easily remembered than are facts that have little emotional significance.
Of particular importance to the learning process is what is referred to as working memory. This is the ability to not only access information previously acquired, but also to make generalizations about this information and apply it to other types of situations. By accessing this prior knowledge, a child acquires a deeper understanding by discovering how the original information fits within the context of other knowledge.
The capacity for working memory varies from one individual to another. However, children with epilepsy tend to have more difficulty with this type of recall, most likely because seizure activity disrupts the storage and/or retrieval of information. This disruption may cause children to advance more slowly than their cognitive abilities would otherwise allow.
Executive functioning describes the processes of developing and applying systematic approaches to solving problems and challenges. This is one of the most complex functions that our brains perform. It involves planning, self-regulation, and the ability to think flexibly or creatively. This allows us to consider more than one option, choose one, and then create a plan of action based on past experience, rather than acting on impulse or emotion.
Executive functioning is critical to a child's ability to access and use other intellectual abilities effectively. Thus, if epilepsy has compromised executive functioning, a child whose basic skills are intact may struggle in the classroom or in communication with others. This problem tends to become more pronounced as children get older and encounter more problem-solving challenges and higher level thinking.
Additional Impacts on Learning
Epilepsy may also be associated with other common learning disabilities, such as those affecting reading, writing, spelling, and math. Such problems are not due to a lack of instruction, nor are they consistent with a child's overall intellectual level. They may be related to some of the dysfunctions previously mentioned, such as cases in which a language problem interferes with a child's ability to read. However, they may also occur independently. For example, seizures may cause motor control issues that would make it difficult for a child to write letters and words properly.
Anticonvulsant Medications and Learning
Elizabeth Thiele, MD, PhD
Medications are a critical first line of treatment in the care of people with epilepsy. In most cases, the first drug prescribed controls seizures effectively and causes few, if any, cognitive side effects. However, in some cases anticonvulsant medications can cause significant cognitive impairment, either because the medication is not well tolerated or because its dosage level is too high.
The goal in treating children with epilepsy is zero seizures or complete seizure control and zero medication side effects.
If such a situation occurs, physicians may lower the dosage or replace the medication with a different drug. There are many anticonvulsant medications, and an adverse cognitive side effect from one does not suggest the same adverse effect from another. In rare circumstances, a medication that adversely affects cognition but effectively controls seizures that are otherwise difficult to control will be continued. Talk with your medical provider—and your child, as appropriate—about all aspects of a medication, not just seizure control.
For more information on treatment options, see the Mass General Childhood Epilepsy Clinic.
Lines of Communication—A Whole-Child Approach
The current standard in care for children with epilepsy takes a whole-child approach, moving beyond seizure control to making every effort to help children reach their full potential. Since epilepsy is associated with a wide range of learning problems, efforts must be made to ensure that children have the appropriate support both at school and at home. This may also require interventions such as speech, physical, and occupational therapies.
Cooperation among medical providers, educators, patients, and families is key to accurately assessing a child's educational needs and planning a program of intervention. In addition to the classroom teacher, specialists such as a pediatric neuropsychologist or an educational psychologist can make determinations about an appropriate course of action. To help determine the areas of need, a neuropsychological evaluation is strongly recommended for all children with epilepsy.
Ultimately, the goal is to implement educational interventions that are appropriate to the child's learning problems and needs. For classroom teachers, this may require that some traditional educational approaches be modified or changed to accommodate a child's particular learning issue. For example, teachers can help children with working memory deficits by not insisting that they recall pieces of information that might not be readily accessible. Providing simple modifications with visual cues, in the form of charts or posters, can provide the needed scaffolding to help a child progress further.
Reinforcing learning through thematic instruction, in which information is emphasized in themes throughout the day, can help a child to make connections and solidify his or her knowledge base. For example, a child might explore similar content or materials in a speech therapy session and in a classroom session.
Learning does not stop at the end of the school day. Parents can have a huge impact on their child's development by coordinating with educators and implementing strategies at home. Not only will this help to reinforce the learning process, but it will also support the work that is being done with the child in the classroom.
Many parents find it helpful to meet with teachers and other school staff regularly regarding their child's epilepsy and any effect it might be having on his or her learning. At these meetings, parents can present medical information as well as insights about their child's personal experience that may help school staff better understand the student's needs. Parents may also find it helpful to put their child's teachers in direct contact with doctors so that any unanswered questions can be addressed.
You can also download our Teaching Strategies for Educators (PDF) guide, which you can use to prepare for or bring with you to school conferences and discussions with teachers.
Parents must often take on the responsibility of facilitating communication between their child's doctors and teachers. Some epilepsy clinics may provide the help of a neuropsychologist, an educational psychologist, or a social worker to serve as a child's school liaison and support parents in their role.
Whether or not a parent has access to an established school liaison program, it is important to remember that there are networks of support available.
When you need help, remember that your child's physician and/or an educational specialist may be able to help you explore specific ways to ensure that your child receives the educational assistance needed, or refer you to someone who can. Schools are legally required to meet the educational needs of all children. Keeping this in mind may make it easier to confidently advocate on your child's behalf.
One of the best first steps toward supporting a child who has learning issues is to understand their educational rights. The Individuals with Disabilities Education Act (IDEA) was created to ensure educational opportunities for students with disabilities. In many cases, school systems provide all of the specialized instruction, modifications, and accommodations that a child with learning disabilities may need. In some cases, however, parents may need to take the initiative in encouraging schools to recognize their child's disability and provide the services and support that their child needs in order to best succeed.
For a list of sites that provide assistance and information on educational issues, see the Patient Education page.
It Is Important to Remember
- Learning occurs as a result of the creation of connections between neurons.
- The surges of abnormal electrical activity in the brain that are characteristic of seizures can impact learning by disrupting connections between neurons.
- Approximately 50 percent of children with epilepsy have some form of learning difficulty.
- The functions most often influenced by epilepsy are speech and language, attention, memory, and executive functioning.
- Anticonvulsant medications can sometimes affect cognitive function but are generally very well tolerated.
- Parents must often assume the responsibility of bridging the gap between the medical world and the educational world.
- By advocating for the educational rights of children with epilepsy, parents and educators can support children in realizing their full potential.
An educational psychologist is a licensed psychologist who evaluates children with learning difficulties and advises educators and parents on the child's development and educational progress.
A neurologist and a pediatric neurologist are physicians who take care of people affected by disorders of the nervous system. An epileptologist is a neurologist or a pediatric neurologist who specializes in the treatment of epilepsy.
A neuropsychologist is a licensed psychologist with expertise in the evaluation of cognitive and behavioral functions.
A social worker is a licensed professional who provides support to families and children with medical or psychological issues.
Patient & Family Stories
In addition to describing experiences common to most people affected by epilepsy, each story illustrates a particular issue that has been important to that family and that other families affected by epilepsy may encounter.