26 Anxiety
Some worry and fear is a normal part of childhood. But anxiety disorders, where worry is persistent, excessive, and gets in the way of everyday life, are among the most common mental health conditions in children with epilepsy. Up to 40% of children with epilepsy develop an anxiety disorder at some point, compared to roughly 10-15% of children in the general population1.
26.1 Why is anxiety so common in epilepsy?
The reasons are layered. Some are neurological: the brain circuits involved in the fear response, particularly the amygdala and limbic system, overlap significantly with those involved in temporal lobe epilepsy2. Some are situational: seizures are unpredictable and frightening, and the uncertainty of not knowing when the next one will occur is itself a powerful driver of anxiety. And some are social: the stigma associated with epilepsy, and the experience of having a seizure in public, can generate real and lasting fear of embarrassment.
Like depression, anxiety in epilepsy can be directly tied to seizure activity. A rising feeling of dread or a sense that something bad is about to happen is a recognized aura (a warning that a seizure is starting) in some children with temporal lobe epilepsy. During a seizure, fear can appear suddenly and pass within seconds to minutes, not as an emotional response to the situation but as the seizure itself. Anxiety and agitation in the hours after a seizure are also common. And then there is persistent, pervasive anxiety that occurs between seizures, independently of any episode. This last pattern is what we call an anxiety disorder, and it is the one that benefits most from treatment.
26.2 What does anxiety look like in children?
In children, anxiety does not always look like worry. A child with an anxiety disorder may appear irritable or have angry outbursts, particularly when something feared is coming up. They may have physical symptoms such as stomachaches, headaches, nausea, or dizziness that have no clear medical cause. They may avoid situations they previously enjoyed, or refuse to go to school. They may seek constant reassurance, asking “are you sure it will be okay?” repeatedly. Some children have difficulty separating from parents, or struggle to fall asleep because of worry at night. Others become perfectionistic and excessively worried about making mistakes, or develop checking behaviours, such as repeatedly verifying that homework is complete or that doors are locked3.
Anxiety in children with epilepsy often shows up specifically around seizures: fear of having one in public, avoidance of activities associated with previous seizures, or reluctance to return to places where a seizure has happened. This is completely understandable. When it starts to significantly restrict your child’s life, however, it warrants attention.
26.3 Types of anxiety disorder
Several types of anxiety disorder can occur in children with epilepsy. Generalized Anxiety Disorder involves persistent, hard-to-control worry about a wide range of things. Separation Anxiety involves excessive fear of being away from parents or caregivers. Social Anxiety Disorder involves intense fear of being judged or embarrassed in social situations, and is particularly relevant for children who have had a seizure in public. Panic Disorder involves recurrent episodes of intense fear with physical symptoms such as a racing heart, shortness of breath, or dizziness. Post-Traumatic Stress Disorder (PTSD) can develop in children who have experienced a particularly frightening seizure, or who have witnessed someone else have one4.
26.4 The school refusal problem
School refusal is particularly common in children with epilepsy and anxiety. It can happen because anxiety makes the school environment feel overwhelming, because your child fears having a seizure in front of classmates, or because missed time due to seizures or appointments has left them feeling behind and unable to cope.
When this pattern develops, it tends to worsen quickly. The longer a child stays out of school, the harder it becomes to return. Engaging the school early, putting supports in place, and using a gradual return when needed, rather than expecting a sudden full return, are all important strategies. The chapter on school support covers the process for requesting accommodations and support plans in more detail.
26.5 Treatment
26.5.1 Cognitive Behavioural Therapy
Cognitive Behavioural Therapy (CBT) is the most effective treatment for anxiety disorders in children5. For anxiety, CBT focuses on several interconnected skills. The first is psychoeducation: helping your child understand what anxiety is and why their body reacts the way it does. The second is identifying triggers, meaning what situations, thoughts, or physical sensations set off their anxiety. The third is challenging anxious thoughts, or learning to question whether worried predictions are actually likely. The fourth, and most powerful, component is graduated exposure: gently and systematically facing feared situations, starting with the least frightening and working up over time. Avoidance maintains anxiety, while facing fears with support reduces it. CBT also teaches relaxation skills, including diaphragmatic breathing and progressive muscle relaxation, which help manage the physical symptoms of anxiety.
Parents are often actively involved in CBT for anxiety, particularly for younger children. One important goal is to avoid inadvertently reinforcing avoidance. Allowing repeated school refusal, or eliminating all anxiety-provoking activities from your child’s life, is a natural and loving response but tends to make anxiety worse over time. A therapist can help you find the balance between support and encouragement.
26.5.2 Medications
When anxiety is moderate to severe, or when therapy alone has not been sufficient, medication can help. As with depression, SSRIs are the first-line medications for anxiety disorders in children6. They take several weeks to reach full effect and should be started at a low dose and increased gradually. A child and adolescent psychiatrist should oversee prescribing and monitoring.
Medications like diazepam (Valium) and lorazepam (Ativan) are sometimes used for acute anxiety or agitation, but they are not suitable for long-term treatment of anxiety disorders. Their effectiveness decreases with regular use, and they can cause sedation. They have an important role in treating prolonged seizures, but a different role than managing day-to-day anxiety.
26.6 What you can do at home
Teaching your child to name their anxiety, “I am feeling really anxious right now,” helps them step back from it rather than being swept up in it. You can validate that the fear feels real without reinforcing avoidance: “I can see that feels scary” is different from “so we won’t go.” Modelling calm where you can matters too. Children are very attuned to parental worry, and managing your own anxiety about your child’s epilepsy, while genuinely hard, has a positive effect on them. Building predictability through consistent routines and advance notice about changes reduces background anxiety for many children. And when your child does face a feared situation, however small the step, notice it and name it. Progress with anxiety is gradual, and each step forward deserves recognition.
Living with epilepsy is genuinely difficult, and some degree of worry about seizures is understandable, in both your child and yourself. The goal of treatment is not to eliminate all anxiety. It is to make sure that anxiety does not prevent your child from living a full life.