Month: June 2021

Introduction

Students living with epilepsy can display poor social processing (e.g., reading facial cues, understanding language nuances, taking perspective), lower level of functional independence, and lower educational status which can make it difficult for them in the social realm.

They may also remove themselves from social situations to avoid having an unpredictable or embarrassing seizure in front of their peers. This worry can be significantly reduced through teacher and classroom preparedness. If everyone knows what to expect prior to a student having a seizure and how to help when a student has a seizure the collective response can be reassuring and calming. It can reduce the worry of the student with epilepsy, their parent, teacher and classmates.

Social stigma is common in epilepsy and can lead to a child having low self-esteem and a reduction in motivation to engage with school learning and activities (Elliott et al., 2005).

In an Ontario survey or parents of children with epilepsy, 69% felt that their child was not doing well socially, and 57% were worried that their child would be teased or bullied at school (ESWO, 2018).

Children who do not socialize or interact with their peers are at risk for poor outcomes as adults (Camfield et al., 2014). Often the effects of seizure activity, medication and close adult supervision will have delayed the development of independence and emotional self-control in a child with epilepsy. To meet the social-emotional competence of their peer group, children with epilepsy may need more support.

Childhood-onset seizures can impact the development of basic and complex cognitive skills that form the core foundation for long term educational, vocational and interpersonal adaptation (Smith et al., 2013).

• In some students with epilepsy, typical development milestones may have been missed and may need to be re-taught.
• Throughout development, children are learning to share and to socially interact with others. Due to their epilepsy, some children may not have acquired these important skills and may have difficulty with social interaction. They may appear self-focused and not play well with others.
• They may experience emotional or behavioural outbursts after relatively small issues because they do not have the social skills or emotional control to deal with their peers.
• They may experience severe separation anxiety when they are away from their parents and/or withdraw socially and isolate themselves from their peers.

Adult Overprotection and Restrictions at School

Students may experience reduced autonomy due to ongoing seizures and the need for greater adult supervision.

A parent or teacher may overprotect the student with epilepsy as a way to cope with the unpredictable nature of seizures. Conversely, children and youth living with epilepsy may become over-reliant on parents or teachers.

Fearing that the student is not safe or will be injured, a parent or teacher may restrict the student’s activities and remove them from social encounters, recreation and school programming (Elliott et al., 2005).

Adult monitoring and placing restrictions on age/appropriate activities suggest to the students that they are not “like other children”, that the world is a dangerous place, and that they are not capable of doing things on their own. The restrictions can cause the student with epilepsy to experience dis- continuous and fragmented learning, to feel helpless or to withdraw from social groups.

Asking parents whether their child’s health care provider has placed restrictions on activities, and if so for what, can help to ensure students engage in the activities they are capable of doing.

Strategies to support the development of autonomy and prosocial skills

• Provide opportunities that will help the student develop a sense of mastery.
• Support the development of decision-making skills and resiliency.
• Model and explicitly teach appropriate social behaviour.
• Teach alternative behaviours to achievement the student’s social goal (e.g., other ways to gain attention, other ways to create fun).
• Model ways of showing interest and respecting personal space.
• Incorporate “Social Behaviour Mapping” to support the student’s understanding of what is acceptable and how to meet the expectations.
• Encourage involvement in extracurricular activities of interest.

For More Information

You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, go to  https://cpa.ca/public/whatisapsychologist/PTassociations/.

This fact sheet has been prepared for the Canadian Psychological Association by Dr. Mary Lou Smith, University of Toronto, The Hospital for Sick Children; Dr. Elizabeth N. Kerr, The Hospital for Sick Children; Ms. Mary Secco, Epilepsy Southwestern Ontario; and Dr. Karen Bax, Western University. 

Revised: June 22, 2021

Your opinion matters! Please contact us with any questions or comments about any of the Psychology Works Fact Sheets:  factsheets@cpa.ca

Canadian Psychological Association

Tel: 613-237-2144
Toll free (in Canada): 1-888-472-0657

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References:

Camfield, P. R., & Camfield, C. S. (2014). What happens to children with epilepsy when they become adults? Some facts and opinions. Pediatric neurology, 51(1), 17-23.

Elliott, I. M., Lach, L., & Smith, ML. (2005). I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy & behavior, 7(4), 664-678.

ESWO (2018). Living with Epilepsy: Voices from the Community, www.clinictocommunity.ca

Smith ML., Gallagher A, Lassonde, M. Cognitive Deficits in Children with Epilepsy. In Duchowny M, Cross H, Arzimanoglou A (Eds.). Pediatric Epilepsy, New York: McGraw-Hill, 2013, pp. 309-322.

Introduction

In an Ontario study of 144 parents, 111 expressed concerns about their child with epilepsy’s behaviour (ESWO, 2018).

Inattention, irritability, agitation, negativity and angry outbursts are frequent among children living with epilepsy. These issues may be primary or they may represent or mask anxiety and depression. Anxiety and depression do not necessarily present as the traditional signs of overt worrying, and changes in appetite or sleep patterns.

Feelings of irritability, anger, aggressiveness as well as anxiety and depression can occur from a few hours or a few days before a seizure occurs and then resume to a prior level after a child has a seizure. The change can be due to dysfunction in the neurons or seizures arising from the emotional control centres of the brain and/or be secondary to the consequences of living with epilepsy.

Anxiety and depression

The incidence rates of anxiety and depression among children with epilepsy are higher than in the general population, occurring in approximately a third of children living with epilepsy (Bermeo-Ovalle et al., 2016; Reilly et al., 2011; Ekinci et al., 2009).

There may be multiple causes for a child’s anxiety and depression:

Primary:

• There may be structural abnormalities in the areas of the brain related to emotion regulation and mood.
• Ongoing seizures may disrupt areas that control emotion regulation and mood.

Secondary:

• Approximately one-third of children with new onset seizures report worrying about having another seizure (Besag et al., 2016).
• Approximately one-third of children report worrying about talking to others about their epilepsy (Besag et al., 2016).
• Students may also experience periods of intense emotional distress related to the unpredictability of their seizures and the loss of control over their bodies (Elliott et al., 2005).

Strategies to support positive behaviour and emotional well-being

• Create a predictable schedule when possible.
• Talk about emotions, label them, and discuss and model strategies for coping with emotions to help students develop emotional self-regulation.
• Teach specific ways to identify and express feelings of stress and develop a concrete strategy for what to do in these situations:
  • Who should the child tell? What should the child say?
  • Give the student a script to follow.
• Provide time away from the desk (walk around) – all kids need an escape.
• Try to reduce or eliminate triggers.
• Practice “time-in” by placing the student close to an adult so that they can feel the adult’s presence, which in turn may support the student to calm down and self-regulate.
• Think of activities that can help the student (e.g., visual activities might be useful for a student with language impairments, sensory tools may assist others, a quiet place in the room might be useful).
• Incorporate “Social Behavior Mapping” to support understanding of the outcomes of expected and unexpected behaviours.
• Use language that promotes self-regulation (e.g., “it is time to calm down”, “try to think of something else”, “count to ten and breathe out”, etc.).
• Empathize with the student’s feelings without focusing on the inappropriate behaviour.
• Help de-escalate problems by using distractions appropriate for the student (e.g., humour, change of scene/activity/person working with them).
• Organize family meetings.

Strategies to support the student’s self esteem

• Set the student up to make progress in something that matters to them.
• Help the child to develop an “Island of Competence”, for example: introduce them to sports, drama, music, art, mechanics, volunteering, friendships, computers, biking, martial arts, scouting, 4H, faith-based groups, etc.
• Assist in developing responsibility and making contributions.
• Find opportunities where the student can help younger children.
• Provide leadership roles in the classroom.
• Encourage the student in solving class problems.
• Offer choices regarding topics, schoolwork and homework.
• Give encouragement and positive feedback.
• Recognize the student’s academic and non-academic accomplishments.
• Recognize at least one of the child’s strengths each day.
• Acknowledge that it’s ok to make mistakes.
• Model acceptance when you make mistakes.
• Avoid overreacting to mistakes.
• Accept mistakes as part of the learning process.
• Use errors as teachable moments.
• Praise the process.
• Praise effort.
• Praise persistence.

Some children may benefit from a psychological or psychiatric evaluation and may require psychological or pharmacological treatment.

For More Information

You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, go to  https://cpa.ca/public/whatisapsychologist/PTassociations/.

This fact sheet has been prepared for the Canadian Psychological Association by Dr. Mary Lou Smith, University of Toronto, The Hospital for Sick Children; Dr. Elizabeth N. Kerr, The Hospital for Sick Children; Ms. Mary Secco, Epilepsy Southwestern Ontario; and Dr. Karen Bax, Western University.

Revised: June 22, 2021

Your opinion matters! Please contact us with any questions or comments about any of the Psychology Works Fact Sheets:  factsheets@cpa.ca

Canadian Psychological Association

Tel: 613-237-2144
Toll free (in Canada): 1-888-472-0657

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References:

Bermeo-Ovalle, A. (2016). Psychiatric comorbidities in epilepsy: we learned to recognize them; it is time to start treating them. Epilepsy Currents, 16(4), 270-272.

Besag, F., Gobbi, G., Caplan, R., Sillanpää, M., Aldenkamp, A., & Dunn, D. W. (2016). Psychiatric and behavioural disorders in children with epilepsy (ILAE Task Force Report): epilepsy and ADHD. Epileptic Disorders, 18(s1), S8-S15.

Ekinci, O., Titus, J. B., Rodopman, A. A., Berkem, M., & Trevathan, E. (2009). Depression and anxiety in children and adolescents with epilepsy: prevalence, risk factors, and treatment. Epilepsy & Behavior, 14(1), 8-18.

Elliott, I. M., Lach, L., & Smith, ML. (2005). I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy & behavior, 7(4), 664-678.

ESWO (2018). Living with Epilepsy: Voices from the Community, www.clinictocommunity.ca

Reilly, C., Agnew, R., & Neville, B. G. (2011). Depression and anxiety in childhood epilepsy: a review. Seizure, 20(8), 589-597.

 

Cognitive issues present in the majority of children with epilepsy

Cognition refers to a variety of skills such as attention, processing speed, learning and remembering, intellectual reasoning abilities, expressing and understanding language as well as planning and problem solving.

Cognitive issues are often present early on in the course of epilepsy or may even predate the onset of seizures (Smith et al., 2013; Besag et al., 2016).

The most common issues affecting academic achievement are:

• Attention
• Processing Speed
• Memory
• Intellectual Disabilities

Students with epilepsy may also have difficulties in executive, language, and motor functions, which may impact their performance in school.

The cognitive, psychological and social consequences of epilepsy play a major role in school success and in determining the educational and occupational outcomes of a student living with epilepsy.

Attention is readily impacted because attention networks are widely distributed throughout the brain

Sustained attention, or the ability to remain focused for extended periods of time particularly if something feels boring or tedious, is a common issue for many students with epilepsy.

ADHD is significantly more common in children/youth with epilepsy than the general population. Approximately 30 to 40% of children/youth with epilepsy meet criteria for ADHD (Besag et al., 2016). The inattentive subtype is most common. Males and females are equally represented.

Educational and behavioural supports used for any student with attention problems can be effective for children living with epilepsy.

 Strategies to support students who have attention issues

• Set up the environment to reduce distractibility.
• Consider having the student sit at the front of the class, close to the teacher and away from doors and windows.
• Provide the opportunity for access to a quiet workspace.
• Consider the effect of the atmosphere: calm, music, colours.
• Provide notes in advance.
• Provide clear, explicit, concise instructions.
• Use engaging and varied activities, emphasizing the student’s interests.
• Tailor appropriately paced/time activities.
• Use visual prompts: timetable or checklists.
• Gain attention before giving instructions: use eye contact/child’s name.
• Provide prompts to attend (look, listen, respond).
• Modify/limit the task length (clear beginning/clear end).
• Have the student identify something to look forward to after the work is done.
• Encourage the student to participate actively in the classroom to maintain attention.
• Provide regular work breaks.
• Alternate intense working periods with periods of recreation.
• Assist in breaking down information into short pieces that are “do-able”.
• Offer a lot of positive feedback and try to limit corrective feedback.
• Identify and encourage strengths.
• Use reward systems to boost self-esteem.
• Evaluate the student using short tests over a series of days.

Slow or inconsistent processing speed is common, resulting in:

• Variable responding
• Slower reaction time on tasks
• Difficulty in working quickly and methodically
• Difficulty in learning a routine
• Difficulty keeping pace with lessons
• Gaps in learning
• Frustration

Strategies to support students who have slow processing speed

• Speak at a slower pace and provide concise information.
• Use sequential and clear language.
• Simplify tasks by dividing information into chunks.
• Use a multisensory approach – visual, auditory, kinesthetic.
• Recap and fill in the gaps in learning as much as possible.
• Give extra time.
• Use cueing mechanisms to prepare student for changes.
• Teach independent strategies (e.g., write lists, pack homework and class notes into knapsack after each subject to avoid rushing at the end of the day).
• Provide visual/written information to support verbal instructions.
• Use visual timetables and colour coding.
• Provide a note taker or audio or video record of lesson.
• Offer longer times for writing and exams.
• Avoid competitions (fastest first).

Memory is vulnerable to seizure activity

70% of children living with epilepsy report issues with memory in their daily lives (Smith et al., 2006) and over 50% of children with ongoing seizures display weakness in some aspect of memory when formally assessed (Reilly et al., 2014).

Memory is a complex operation which can be affected by other cognitive processes, such as attention, effort, self-monitoring, speed of information processing, the use of strategies, and organization.

For memory to work properly, the brain needs to continuously monitor itself. Seizures can interfere with the brain’s self-monitoring process.

Memories before a seizure can be lost because the brain does not store them properly.

After a seizure, confusion and fatigue can stop memory processes from working correctly.

Interictal discharges (i.e., abnormal firing of neurons below a level that would cause a seizure) disrupt the formation and retrieval of memories.

Memory issues involve consolidating, retaining and transferring newly learned information.

The most common issues with memory experienced by students living with epilepsy include:

• Forgetting what they have just heard or read.
• Forgetting remote events such as special trips they went on.
• Retrieving words or information that are needed in the moment in order to express their ideas or to participate in class discussions.
• Abnormally rapid forgetting of information that they had previously learned.

Strategies to support students who have memory issues

• Activate learning by making topics meaningful to the student.
• Find ways to relate the content being discussed to the student’s prior knowledge or interests.
• Use different learning styles (visual, auditory, kinesthetic).
• Teach information in clear, small chunks.
• Establish routines; keep things in the same order.
• Use hands-on activities.
• Repeat the important messages and information.
• Teach mnemonics, and use music cues, drills.
• Ask the student to generate his or her own memory cues.
• Use visual aids: photobooks, checklists, task cards, keywords, timetables, post it notes, pictures.
• Encourage the use of a journal to keep track.
• Allow the student time to review.
• Give students and parents review materials and lessons that the student can do at home or at a later date.
• Recognize that rote learning will require effort and support.
• Create an environment where students do not have to rely heavily on memory (open book, access to computer, access to notes).
• Focus less on information retrieval by recall and more on recognition.
• Avoid tests that emphasize memorization (e.g., fill-in-the-blank items).
• Provide students with a list of formulas for math and science, having them select and apply the appropriate one.
• Have the student practice retrieving the information to be learned (using cues, recognition, exercises).
• Communicate with parents via planners or online about class programs.

Intellectual reasoning abilities

Intellectual reasoning abilities refer to general mental abilities.

Compared to other individuals their age, a greater number of students with epilepsy will experience mild (Low Average), moderate, or significant weaknesses in their intellectual reasoning abilities (Prasad et al., 2014).

Those with significant weaknesses will meet criteria for an intellectual disability (i.e., at or below the 2nd percentile for their age).

Overall, approximately 15-25% of children with epilepsy meet criteria for an intellectual disability; however, rates are higher when only children with ongoing seizures are considered (Reilly et al., 2014).

Strategies to support students with weak reasoning abilities

• Check for understanding.
• Provide concrete examples.
• Teach reasoning overtly by talking out loud, modelling, and offering rehearsal.
• Be direct – express complex ideas as simply as possible.
• Provide opportunities for experiential learning.
• Set up opportunities for learning to be reinforced at home.

Executive functioning

Students with epilepsy, as well as those with ADHD and learning disabilities, can display problems with executive functioning.

Executive functioning refers to a set of self-directed skills including:

1. Concentrating on things.
2. Planning and organizing problem solving approaches.
3. Regulating emotions, behaviour, and attention.
4. Cueing oneself to use previously learned information.
5. Initiating activities.

Strategies to support students with executive functioning and organization

• Change the environment to support skills.
• Set up and have the student follow routines; when activities become habitual, they require less active processing and are less likely to be forgotten.
• Use short instructions and have students check off each step as it is completed.
• Use visual prompts.
• Use engaging, varied activities and learning styles.
• Use eye contact.
• Modify the tasks to support development.
• Provide the student with more time.
• Tailor the pace and time of activities.
• Provide regular breaks, including those with physical exercises.
• Limit multi-tasking; focus the student on one activity at a time to reduce the demand on working memory and to limit distractions.
• Consider the effect of the class atmosphere on learning and remove distractions.
• Give warnings well ahead of time for changes in routine to aid with transitions.
• Proactively plan for changes in routine whenever possible.
• Check notebooks frequently.
• Have duplicate copies of worksheets for students who misplace items.
• Model problem-solving explicitly (thinking out loud).
• Use step-by-step problem-solving approaches and provide a template.
• Prior to initiating the task, teach the student to divide the activity into multiple steps.
• Model organizational strategies throughout the school day.
• Teach students how to use a planner.
• Break the planner into sections: a calendar with sufficient space for writing daily activities, address book, general to-do list, assignment due date.

Language and communication

Children living with epilepsy may experience language difficulties. Sometimes the disturbance relates to difficulty in a broad range of receptive and expressive skills. Some types of epilepsy may produce specific patterns of difficulty.

Strategies to support students who have language and communication difficulties

• Speak clearly, slowly and be specific.
• Use non-verbal communication to enhance verbal instructions.
• Allow more time and check for understanding.
• Repeat and rephrase instructions.
• Use open ended questions to promote dialogue.
• Use group work and role play.
• Teach key words.
• Use visual prompts (objects, photos, pictures, symbols).
• Classify and group objects and pictures together.
• Teach singing.
• Engage the student in conversation – include new words and explain their meaning.
• Encourage parents to read to the child every day.
• When the lesson contains a new or interesting word – pause and define the word.
• Play word games.
• Have a daily checklist of take-home materials in the student’s planner.
• Provide a daily schedule on the board or in the student’s planner.
• Provide parents with important dates/reviews/tests.
• Support word retrieval.
  • Provide phonemic and/or semantic cue.
  • Encourage visualization and gestures.
  • Encourage self-cueing.
• Consider consultation with or assessment by speech and language therapist.

Motor co-ordination

Children with epilepsy may experience problems in motor functioning, including both reduced fine-motor and gross-motor skills.

• Slow motor output
• Weakness in both sides or one side
• Gait and balance issues
• Difficulties with coordinated movement

These issues may have implications for handwriting and note-taking, and for moving between one class and another.

Strategies for fine motor issues

• Provide a note taker to scribe for the student.
• Provide hand-out of board work.
• Offer the opportunity to take tests orally to access understanding.
• Provide extra time for assignments and tests.
• Consider key-boarding as an alternative to printing or cursive writing.
• Check to see if the student is eligible for Special Equipment (e.g., SEA claim for a computer).

For More Information

You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, go to  https://cpa.ca/public/whatisapsychologist/PTassociations/.

This fact sheet has been prepared for the Canadian Psychological Association by Dr. Mary Lou Smith, University of Toronto, The Hospital for Sick Children; Dr. Elizabeth N. Kerr, The Hospital for Sick Children; Ms. Mary Secco, Epilepsy Southwestern Ontario; and Dr. Karen Bax, Western University.

Revised: June 22, 2021

Your opinion matters! Please contact us with any questions or comments about any of the Psychology Works Fact Sheets:  factsheets@cpa.ca

Canadian Psychological Association

Tel: 613-237-2144
Toll free (in Canada): 1-888-472-0657

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References:

Besag, F., Gobbi, G., Caplan, R., Sillanpää, M., Aldenkamp, A., & Dunn, D. W. (2016). Psychiatric and behavioural disorders in children with epilepsy (ILAE Task Force Report): epilepsy and ADHD. Epileptic Disorders, 18(s1), S8-S15.

Prasad, A. N., Burneo, J. G., & Corbett, B. (2014). Epilepsy, comorbid conditions in Canadian children: analysis of cross-sectional data from cycle 3 of the National Longitudinal Study of Children and Youth. Seizure, 23(10), 869-873.

Reilly, C., Atkinson, P., Das, K. B., Chin, R. F., Aylett, S. E., Burch, V. & Neville, B. G. (2014). Neurobehavioral comorbidities in children with active epilepsy: a population-based study. Pediatrics, 133(6), e1586-e1593.

Smith, ML., Elliott, I. M., & Lach, L. (2006). Memory outcome after pediatric epilepsy surgery: objective and subjective perspectives. Child Neuropsychology, 12(3), 151-164.

Smith ML., Gallagher A, Lassonde, M. Cognitive Deficits in Children with Epilepsy. In Duchowny M, Cross H, Arzimanoglou A (Eds.). Pediatric Epilepsy, New York: McGraw-Hill, 2013, pp. 309-322.

Introduction

Epilepsy is defined as a “disease of the brain characterized by a predisposition to generate epileptic seizures, and by the cognitive, psychological, and social consequences of this condition” (Fisher et al., 2005).

Understanding epilepsy and the cognitive, psychological, and social consequences of the condition is the first step in supporting students living with epilepsy. Other Psychology Works Fact Sheets address these consequences.

Understanding the brain, seizures, and the impact of seizures on brain function

The human brain contains billions of specialized cells, called neurons. The electrical and chemical signals these cells transmit and receive are at the heart of how the brain functions. Everything we do, think, say, and feel is the result of the signals that are generated by the neurons in the brain.

The brain is often compared to a computer – a processing unit that receives inputs and generates outputs. However, the brain is so much more than a simple input-output device. The brain is a living organ that modifies itself based on the experiences and the interactions we have with our environment. It is the control centre of our thinking, problem solving, consciousness, emotions, physical movement, and social behaviour. Brain cells form new connections when we have new experiences.

The lobes of the brain

Frontal Lobe
The frontal lobe provides executive control over the brain’s higher functions. Executive functioning is related to self-directed skills, including concentrating on things, planning, organizing, problem solving, as well as cueing ourselves to regulate our emotions and attention, and to use previously learned information.

Temporal Lobe
The temporal lobe helps form longer-term memories. Behaviours, emotions and language comprehension are also associated with structures in the temporal lobe.

Parietal Lobe
The parietal lobe helps process sensory information (e.g., touch), left and right orientation, as well as aspects of spatial relationships and language functioning.

Occipital Lobe
The occipital lobe is involved in visual processing and perception.

The Brain as a Network
Many parts of the brain work together to support complex functions. There is communication between different parts of the brain to enable us to carry out complex tasks that are important for school success, such as language, attention, reading, and mathematics.

What is a seizure?

Sometimes the neurons in the brain don’t signal properly and cause a sudden burst of electrical energy in the brain or what is known as a seizure.

Seizure symptoms depend on where in the brain the abnormal bursts of electrical activity occurs. Seizures may be observed as a transient change in sensation, movement, behaviour, or consciousness. Because the brain is responsible for a wide range of functions, there are many different types of seizures.

Between seizures, some students continue to have heightened electrical discharges in their brain (called interictal discharges) which are not strong enough to cause a seizure but cause transient issues with attention, thinking, memory, and behaviour.

Epilepsy is more than recurrent seizures

Epilepsy is a spectrum disorder with varying presentations of:

1. Seizure frequency
2. Seizure types
3. Seizure severity
4. Seizure control: some students have good seizure control while others have seizures which are persistent and severe
5. Chronicity: some students outgrow their seizures and others do not
6. Types of cognitive, psychological, and social problems
7. Severity of cognitive, psychological, and social problems

For each student living with epilepsy, the effect of a seizure has on his or her brain and consequently the related cognitive, psychological (behavioural, emotional), and social abilities will be different. While some students with seizures affecting only one area or lobe of the brain may have very specific problems associated with that lobe, many students with epilepsy experience problems across multiple domains. Students living with epilepsy may be similar to students with other types of neurological damage (e.g., Traumatic Brain Injury).

Some students living with epilepsy will have very few barriers to achievement while others are at risk of poor school performance and poor outcomes as adults.

Epilepsy is an invisible condition

If a student walked into a classroom with a cast on his or her arm, we would immediately recognize that he or she had an injury. We would not expect the student to throw a baseball or use a badminton racquet with the injured arm. It would be easy to modify most activities because we could see and understand the impairment.

Students living with epilepsy have an invisible condition. You cannot tell that they have epilepsy unless they are actively having a seizure. It is not possible to see “the cast” on the part of the brain where the seizures originate.

The cognitive, psychological, and social consequences associated with epilepsy are frequently unrecognized (Reilly et al., 2014).

The seizure is the tip of the iceberg. Below the surface of the iceberg lie the invisible or unrecognized consequences: the cognitive, psychological, and social impacts associated with this brain disease. It is important to recognize these consequences to ensure success at school.

School attendance

• Students with epilepsy may miss lessons or miss content even when they are present in class.
• They have higher rates of school absenteeism to recover from seizures, attend medical appointments, and to establish new treatments.
• Social factors including embarrassment, teasing, and bullying also impact school attendance.
• Some schools unnecessarily send students home when they have seizure at school or exclude them from activities due to concerns that they may have a seizure.
• A student who is absent 15 days per school year will have missed the equivalent of one full year of instructions by the end of Grade 12.

Reducing restrictions at school

While it may seem like limiting a student’s physical activity is in his or her best interest, doing so may actually encourage social isolation and interfere with many opportunities for the student to learn and practice important physical literacy and social skills.

Every effort should be made to include students in physical activities such as gym, recess, lunch, extracurricular sports, and field trips. There is evidence that seizures are less likely to occur if the student is engaged in satisfying and motivating activities, whether they are mental or physical.

Excessive adult monitoring and limit setting may actually increase seizure activity.

Medication side effects

Not all students with epilepsy experience medication side effects.

Side effects are most likely to occur when a new medication is introduced, the dosage of an existing medication is increased, or when the student is on more than one medication.

Potential side effects of anti-seizure medications may include:

• Fatigue
• Drowsiness
• Slower information processing speed
• Difficulties with attention and memory
• Problems with dizziness and coordination
• Double vision
• Changes in mood, behaviour, and appetite

Developing a communication plan with families is helpful to document seizure activity and observations following medication changes.

Fatigue is a consistent complaint of students living with epilepsy

The underlying brain abnormality causing the seizures, the recovery after a seizure, and the medications to treat the seizures can make a student feel exhausted.

Some students have frequent seizures at night causing them to be tired, irritable, or to function poorly the next day.

Students with epilepsy need plenty of sleep and may go to bed earlier than their peers. They may fall asleep in class or nap when they arrive home from school.

Fatigue can make it difficult for students with epilepsy to participate fully in academic endeavours and to concentrate for long periods of time. Fatigue may make it difficult to finish homework or to participate in after-school programs.

Strategies to help students with fatigue

• Offer less intensive classes later in the day.
• Reduce the amount of work you expect the student to complete within a specific amount of time.
• Offer frequent breaks.
• Do assessments over a series of several days.
• Reduce the amount of homework you assign.
• Reduce the course load for older students.
• Develop a communication plan with the parent and student to document seizure activity, medication changes and side effects.

Variability in functioning from day to day is typical

A student’s presentation can be variable from day to day and within days.

Good Days: You will observe times when a student living with epilepsy is available to learn, engages in discussions, appears to make connections, and displays an even temperament.

Bad Days: You may observe other times when the student appears to be readily distracted, has forgotten previously learned information, or may be irritable.

Without support, what does the future hold?

The potential trajectory for children with epilepsy is demonstrated through adult outcome data:

Studies around the world indicate that in adulthood, people living with epilepsy have:

• Lower education
• Higher unemployment
• Higher rates of poverty
• Higher rates of unplanned pregnancy
• Higher rates of mental health problems

In Canada, the projected indirect economic cost due to premature death and disability in epilepsy are approximately $3 billion in a year, second only to brain injury among all neurological conditions (PHAC, 2014).

For students living with epilepsy, school education and learning represent the primary interactive biopsychosocial components associated with their health outcomes.

Providing school-based support to students with epilepsy has the potential to reduce the burden of epilepsy on the student, parent, and school community. Developing skills and confidence in the early years may alter the negative trajectory for the student with child-onset epilepsy.

General strategies for teachers to improve school success

• Meet with the parents to understand the child’s epilepsy and to develop a plan of care.
• Empower students who had seizures by engaging them in the discussion on what to do and how it feels to have epilepsy.
• Invite a community-based epilepsy educator to provide you and your colleagues with an epilepsy professional development session.
• Invite a community-based epilepsy educator to provide age-appropriate videos or presentations explaining epilepsy and seizure first aid to the entire class.
• Ensure that the entire class understands what to expect when a classmate has a seizure and how they can help.
• Minimize known seizure triggers: heat, dehydration, lights, stress, fatigue in the classroom.
• Provide a rest area.
• Prevent social and emotional challenges by providing proper information to the class following the occurrence of a seizure.
• Promote social interaction.
• Keep the child in class following a seizure so they can develop social and emotional coping skills.
• Participate in epilepsy awareness programs, Purple Day for epilepsy, international days and fundraisers.

For More Information:

You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, go to  https://cpa.ca/public/whatisapsychologist/PTassociations/.

This fact sheet has been prepared for the Canadian Psychological Association by Dr. Mary Lou Smith, University of Toronto, The Hospital for Sick Children; Dr. Elizabeth N. Kerr, The Hospital for Sick Children; Ms. Mary Secco, Epilepsy Southwestern Ontario; and Dr. Karen Bax, Western University.

Revised: June 22, 2021

Your opinion matters! Please contact us with any questions or comments about any of the Psychology Works Fact Sheets:  factsheets@cpa.ca

Canadian Psychological Association

Tel: 613-237-2144
Toll free (in Canada): 1-888-472-0657

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References:

Fisher R.S., Van Emde Boas W., Blume W., Elger C., Genton P., Lee P., Engel Jr, J. (2005). Epileptic seizures and epilepsy: Definitions proposed by the International League Against Epilepsy and the International Bureau for Epilepsy. Epilepsia, 46(4):470–472.

PHAC (2014). Public Health Agency of Canada, & National Population Health Study of Neurological Conditions (Canada). Mapping connections: An understanding of neurological conditions in Canada.

Reilly, C., Atkinson, P., Das, K. B., Chin, R. F., Aylett, S. E., Burch, V. & Neville, B. G. (2014). Academic achievement in school-aged children with active epilepsy: A population-based study. Epilepsia, 55(12), 1910-1917.