Epilepsy is a complex disorder which is characterized not only by seizures but also by the behavioural (psychological), cognitive and social consequences of the condition. Behavioural changes, particularly with attention, are known to occur before seizure onset for many children. These behavioural changes are likely a result of changes in the make-up of the nerve cells (neurons) within the brain . In some children, the issues can remain even if seizures become well-controlled.
Attention deficit hyperactivity disorder (ADHD) is significantly more common in children with epilepsy than in the general population Approximately 33% of children with living epilepsy meet diagnostic criteria for ADHD. The inattentive sub-type of ADHD is most common in children living with epilepsy.
Other behavioural issues include crying, irritability, negativity and outbursts. These types of behaviours may mask other psychological issues in the child, such as anxiety or depression.
Causes of behavioural challenges in children with epilepsy
There are several underlying base causes of behavioural challenges in children with epilepsy. These include:
- Changes or dysfunction in the neurons in the of areas of your child’s brain that trigger emotional and/or behavioural control.
- Seizures and abnormal brain wave activity that disrupt the areas of your child’s brain that trigger emotional and/or behavioural control.
- Dealing with unpredictability of when seizures will occur and the intensity.
- Adverse (unwanted or unexpected) side-effects of anti-epileptic medications. It is recommended to carefully monitor your child for behaviour changes when they are on some medications, including phenobarbital, valproate, gabapentin, topiramate, levetiracetam and zonisamide.
- Coping with the impacts of living with epilepsy (e.g., worry, distress, learning issues, stigma and public attitudes).
The presence, nature and severity of your child’s behavioural issues can depend on many things, including:
- The type and location of the epilepsy
- The frequency and intensity of the seizures
- The type of medication your child is taking
- Other people’s reaction and response to the seizures
- Resulting level of distress for your child
Epilepsy-related behaviours
Seizure-related behaviours
Some children display changes in behaviour, personality and mood before or after a seizure. These changes may include inattentiveness, hyperactivity, irritability, or verbal or physical aggression and may occur minutes to days before or after a seizure. During this period, certain triggers may further irritate your child and increase their frustration or aggression.
Monitor when your child shows a behavioural change or when emotions such as irritability begin to escalate and note when your child experiences a seizure to see if there is a pattern. Watch your child closely during the time of seizures to learn what behaviours they may exhibit or emotions they may be feeling. These types of observations will help you tell the difference between behaviours that need modifying and those that are seizure related. During this period you may find that it is also a good idea to reduce stimulation in the school setting, for example, decreasing academic workload.
Mediation-related behaviours
Parents sometimes notice sudden negative changes in their child’s behaviour or mood when an anti-epileptic medication is introduced, or the dose is increased. For example, a younger child who was typically quiet and well-behaved might become very irritable and start to hit other children. Some medications are known to be associated with behavioural changes for some children.
If the behavioural side effects are intolerable, discuss them with your child’s neurologist to see if reducing or discontinuing the anti-epileptic medication while adding another medication could be considered.
Some anti-epileptic medications are also used to treat behavioural problems and some parents find that certain behaviours may improve when a child is started on a medication for seizures. Likewise, behaviour problems may develop when a child is taken off a seizure medication.
Support
Together with the epilepsy care team, discuss potential problems to watch out for and find out how you might obtain help in dealing with these issues should they arise.
If you are concerned about your child’s behaviours, consider seeking professional help for your child, ideally through a mental health professional specializing in children or adolescents.
Minor behavioural issues
Many children who have epilepsy learn to adjust to their situation over time, with the right support; however, just like adults, children can have good days and bad days. If your child is having a bad day, it may be hard to tell whether the cause is the epilepsy, the treatment or your child just being a child. Crying, irritability, anger, fussiness, acting out, tantrums, or withdrawal can all be typical behaviours for children at certain times. For children living with epilepsy, these behaviours may be caused by abnormal brain wave activity at the time or living with stress.
Having epilepsy can be a very stressful experience. Your child may experience stress related to the following:
- Having seizures or the unpredictability of having them
- Frequently experiencing symptoms that make them feel unwell
- Dealing with many doctor’s appointments or hospitalizations for procedures or treatments
Being away from home and encountering many new people and procedures is difficult for a child. A chronic condition such as epilepsy may mean that these unpleasant experiences become routine, but that may not make them any easier for your child to cope with.
It is helpful if you try to understand your child’s experience, to talk with them and to observe their behaviour for signs of how they are coping. Explore what they are thinking, doing and feeling. Understanding your child’s perspective places you in a strong position to offer support and help clarify any inaccurate beliefs your child may have about their health. Talk about emotions, label them, and discuss and model strategies for coping with unpleasant emotions (e.g., frustration, distress).
Respond to inappropriate behaviour with consequences that are suitable for your child’s age and stage of development. Prompt, consistent and clear responses are useful.
Stay with your child to help the co-regulate to calm down.
In some situations, talking is not always useful, and ignoring the behaviour may be the best strategy. This is something that you will be able to determine through experience or through trial and error.
To learn more about the approaches you can take to help your child cope with epilepsy and reduce minor behaviour issues, see the page: Helping your child cope with epilepsy.
Serious behavioural changes
A small proportion of children with epilepsy may experience sudden outbursts of verbal or physical aggression. The aggressive behaviour may appear with little or no provocation and can go on for some time. Supporting these children can be challenging for the family, school and health-care professionals.
The reasons for the outbursts are not clear, but may include:
- Electrical discharges in the brain may affect brain function, which then affects behaviour
- Abnormal areas of the brain produce both epileptic activity and behavioural aggression
- Behaviour may be aggravated by anti-epileptic mediation
Clinical observations as well as conversations with children, parents and teachers, suggest that these episodes of aggression often follow a pattern:
- The child perceives a situation as unpleasant or hurtful. For example, some children may have very sensitive hearing. Loud noises or a confusing number of noises in the classroom might trigger explosive behaviour from the child.
- Once the trigger stimulates an angry feeling, it is difficult for these children to "put on the brakes." It is not that they won’t control their aggression; rather, children say that they can’t control the aggressive outbursts.
Parents report that children often experience remorse or regret following an aggressive outburst. They may criticize themselves, for example, saying, "I’m a bad person." Learning self-regulation skills is important for all children. Serious behavioural changes require prompt attention from parents or health-care providers. For information on resources that can help, please see the page on Resources and support.
How to help your child with serious behavioural changes
Be aware of behavioural changes in your child. Try to identify patterns or triggers that agitate or upset your child and lead to verbal or physically aggressive outbursts and when these episodes are likely to occur. Steps can then be taken to reduce the impact of triggers that result in a behavioural meltdown.
It is important to quickly remove your child from situations in which a known trigger is present or remove the trigger that is precipitating the episode. If caught early, this strategy can sometimes defuse escalating negative behaviours. When you see the situation escalating, or your child is in the middle of an outburst, remember the following:
- Remain calm and speak to your child in a calm tone. Tell them that you are removing them or the item to help them. Staying calm can help your child learn appropriate ways to manage stressful situations. A calm and rational response can help your child learn that explosive anger is not the way to handle their frustration.
- 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")
- Do not try to reason with your child or to talk them out of their anger in the middle of the outburst as it will likely agitate them more. You can say something such as "Your behaviour is not appropriate. Let’s try to take deep breaths together."
- In the moment, do not lecture them about their behaviour or respond to name-calling or verbal abuse.
- Define the behavioural difference between will not (the child is not willing to modify their behaviour) and cannot (the child is unable to stop, and the behaviour seems out of their control). Then define how responsible your child should be held for their behaviour.
- Try to manage behaviour by using established behavioural techniques. However, for some children standard behaviour management strategies alone do not seem to be effective. In these cases, a combination of strategies is sometimes required.
Once both you and your child are calm, talk to them about why their behaviour was unacceptable.
- Ask your child what the experience was like for them. They may be able to tell you what triggers or situations cause them to become agitated and lead to their behaviour changes.
- If they cannot tell you, work through the situation with them by asking questions such as "What happened just before you blew up today?". Discovering the triggers helps your child understand them and to learn to respond in a more effective manner the next time they get angry or frustrated.
- Work with them to identify strategies that they can use to defuse their agitation and anger and help them gain more control over their feelings and behaviour (e.g., How might you handle something like this in the future”. This information can also help school staff to deal more effectively with your child’s behaviour. Involving a counsellor who has experience in working with children with epilepsy and who has dealt with such issues may be helpful.
- It is important to enforce natural consequences for destructive behaviours to help them learn.
- If the behaviour is threatening or if you are physically harmed, do not be afraid to call the police on your child. Calmly state, "I feel unsafe, and I am going to call for help." Talk to your child's doctor or the epilepsy care team about your child's behaviour. In some instances, meeting with, and assessment by, a social worker, psychologist, or psychiatrist may be needed to determine the nature and degree of the problem as well as whether your child requires further intervention. This intervention could include intensive behavioural therapy and/or medications that will help reduce or alleviate episodes of behavioural outbursts. It could also involve reducing the dosage of other medications or changing the medication.
Keep an open line of communication with your child’s teacher so that they can also watch out for and inform you of any concerns. Talk to them often and find out how your child is doing.