Children and adolescents with difficult-to-control epilepsy are at greater risk for serious emotional problems than children without epilepsy or children with well-controlled epilepsy. They may experience difficulties in regulating their emotions. There are several approaches parents and caregivers can use to help children deal with heightened emotional distress.
Self-esteem
Self-esteem is how a person sees themselves, feels about themselves and values themselves. It is the extent to which a person feels positive about themselves. Self-esteem is important because how a person feels and thinks about themselves influences how they act and behave. Self-esteem is influenced by internal thoughts that we have about ourselves, which often have been influenced by how others view us.
Self-esteem can be at risk in children with epilepsy because they may receive many messages focused on what they cannot do because of their seizures. Talking with your child about these feelings and changing the "focus" to what your child is able to do is a positive step toward combating a negative self-image. Building self-esteem can have beneficial effects in all areas of life, including relationships with peers and academic achievement.
Here are some ways you can help your child develop positive self-esteem:
- Show love by spending quality time with them. Use eye contact, physical contact and loving words. Children who feel loved, comfortable, safe and secure and who understand boundaries and limits are children with positive self-esteem.
- Respect their feelings and create an environment where expression of feelings is accepted.
- Respect their uniqueness and build on their strengths. Help them feel competent by learning from both their successes and their mistakes. Balance your need for protection with their need to take risks.
- Encourage your child’s independence at home, at school and in the community. Where necessary, advocate for your child so that others understand epilepsy and your child is included in activities with their peers.
- Talk to your child about epilepsy in an age-appropriate way. Highlight that epilepsy is only one aspect of who they are as a person, not a condition that defines them. When your child must cope with difficulties related to their epilepsy, emphasize the strength and bravery that it takes for them to get through these difficult times.
- Include your child as part of the epilepsy care team. This will show them that their opinion is valued, and they are able to direct some aspects of their care.
- Create an environment where they can feel responsible, capable and independent. Help them take on responsibilities, with adequate support systems in place to help them succeed.
- Encourage social contacts. Ensure a sense of belonging by creating opportunities for them to play with other children.
- If you feel there are issues you cannot help your child with, discuss them with the epilepsy care team and get professional help from a social worker or psychologist where necessary.
Anxiety
It is normal for children and teens to experience occasional fears, worries or sadness. However, if these worries or fears continue for a long time and/or are causing significant disruption in a child’s life (e.g. affecting school, social life or routines) they may meet the criteria for a type of problem called an anxiety disorder.
It is estimated that between 23% and 33% of children with epilepsy also have anxiety disorders. Children with epilepsy may experience anxiety because of:
- worry and uncertainty about seizures
- abnormal brain activity related to epilepsy
- side effects from drugs
- drug withdrawal
Increased anxiety can result from fear and worry surrounding the unpredictable nature of seizures (when and where a seizure might happen) and the potential for injury and embarrassment. In an effort to avoid risk of injury or potential embarrassment, children and teenagers may feel less confident about participating in social or physical activities with their peers, which may increase their sense of social isolation.
Children with anxiety disorders may not talk openly about their worries, but may show their anxiety in different ways, such as:
- looking tense
- nervous mannerisms such as nail biting, leg jiggling, breath holding or gulping
- concern about being on time
- reluctance to leave their parents and go to school, or to leave their teacher and go out to the playground
- constantly seeking approval and reassurance about their performance
- redoing tasks because they are not satisfied with their performance
- trying to avoid new or challenging situations
If your child seems unusually anxious:
- Talk to their epilepsy care team. Counselling to improve coping skills in dealing with worries about seizures and the stigma surrounding epilepsy may help reduce your child’s anxiety.
- Create an environment that allows your child to discuss their worries and concerns.
- Some adolescents have reported that supportive discussion with peers or older youth with epilepsy about how they cope and manage life with seizures can be very helpful.
In rare cases, there may be situations in which a child or adolescent’s anxiety is overwhelming and limits their ability to function normally (e.g., unable to attend school or leave the house). In those situations, assessment by a social worker, psychologist or psychiatrist might be required, as well as treatment with therapy and/or anti-anxiety medication.
It should also be noted that severe anxiety in children can be an expression of depression. The following section describes this more fully.
Depression
Depression is more than just "the blues" or feeling very sad. It is a serious illness, or mood disorder, that is caused by a combination of biological and social factors. People who are depressed cannot just "snap out of it." Depression can impair a child’s social and emotional development: children with depression tend to be more isolated, with poorer social relationships and low self-esteem. Children and teenagers with depression are also more likely to attempt suicide. In the long term, depression often returns and may continue into adulthood.
Between 10% and 26% of children and adolescents with epilepsy report that they are depressed, compared to 2% to 8% of children in the general population. However, depression in children with epilepsy is often overlooked. Factors that increase the risk of depression include:
- frequent seizures
- long duration of epilepsy
- family history of depression
- negative attitude toward having epilepsy
- stressful family relationships
- feelings of loss of control over seizures
Some anti-epileptic drugs can increase the risk of depression. As well, focal seizures affecting certain locations of the brain have been found to be associated with depression in adults. Possible signs of depression in children include:
- persistent anxiety that reduces a child or adolescent’s ability to participate in normal activities of daily living
- emotional symptoms:
- frequent sadness, tearfulness and crying
- increased irritability, anger and hostility
- extreme sensitivity to rejection and failure
- behavioural symptoms:
- a loss of interest in activities or the inability to engage in previously enjoyed activities
- talk of or attempts to run away from home
- social isolation, poor communication and difficulty with relationships
- frequent absences from school or poor school performance
- alcohol or drug use
- expressions of suicide or self-destructive behaviour
- cognitive symptoms:
- low self-esteem
- feelings of worthlessness, hopelessness and guilt
- feeling unloved
- poor concentration
- decline in school performance
- frequent thoughts of death or suicide
- physical symptoms:
- low energy
- frequent complaints of physical illnesses such as headaches and stomach aches
- a major change in eating habits or sleeping patterns
Between 40% and 70% of depressed children and teenagers have other psychiatric disorders as well, such as anxiety or substance use disorder.
If you suspect your child may be depressed, talk to their epilepsy care team, family doctor and/or paediatrician. They will need to evaluate your child’s situation fully, including their school and family environment. The earlier your child can be assessed and treated, the sooner they can receive treatment.
Treatment for depression in children may include:
If your child has had more than one episode of depression, or if they are considering or have attempted suicide, the team may suggest referring them to a specialist in mental health for children or teenagers.