You’re sitting at dinner with friends when, suddenly, one of them collapses. Their body shakes uncontrollably, their eyes roll back, and they seem completely unaware of their surroundings. What’s happening? A seizure. For millions of people with epilepsy, this frightening moment is a reality they live with every day.
In 2021, approximately 51.7 million people globally were living with epilepsy, according to the Global Burden of Disease Study (GBD). That translates to 658 per 100,000 people, a statistic that demands attention. The age-standardised prevalence rate provides a clearer understanding by adjusting for age differences, allowing for more accurate comparisons across populations. Epilepsy includes both idiopathic epilepsy (where the cause is unknown) and secondary epilepsy (caused by identifiable factors like brain injuries, infections, or strokes). Despite these staggering numbers, epilepsy remains largely underprioritised. But why? This isn’t just a medical issue; it affects families, workplaces, schools, and communities. It’s time to acknowledge the far-reaching consequences of epilepsy and focus on meaningful solutions.
How epilepsy is diagnosed
Diagnosing epilepsy involves a combination of medical history, physical examinations, and diagnostic tests. Here’s a breakdown of what to expect:
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Medical history review
The doctor will ask about symptoms, seizure frequency, and any family history of epilepsy. Providing a detailed description of the seizures is essential for an accurate diagnosis.
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Neurological exam
This exam tests the brain’s function and neurological health, checking reflexes, balance, muscle strength, and coordination.
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Electroencephalogram (EEG): Measuring brain activity
An EEG records the electrical activity and is one of the most common tests for diagnosing epilepsy. It can detect abnormal patterns that signal seizures.
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Brain imaging: Looking for underlying causes
MRI or CT scans may be used to check for structural abnormalities in the brain, such as tumours, lesions, or brain injuries, which could be contributing to the seizures.
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Blood tests: Ruling out other conditions
Blood tests help doctors rule out potential causes of seizures, such as infections, metabolic disorders.
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EXPERT TIP
Most children diagnosed with epilepsy will be under the care of a paediatrician or paediatric neurologist, with additional support from the child's general practitioner. For children with suspected seizures, a series of investigations are typically carried out, including EEG (electroencephalograms), MRI, or other neuroimaging scans (such as CT scans, PET scans, and SPECT scans), as well as genetic testing, to determine the underlying cause of the epilepsy.
Once a diagnosis is made, the majority of children will begin anti-seizure medication. However, certain causes of seizures, such as febrile seizures, may not necessitate medication. Additionally, some forms of epilepsy in childhood may resolve on their own as the child grows, eliminating the need for ongoing treatment.
Beyond medication, it is crucial that parents, caregivers, and schools are equipped with the knowledge and tools to ensure the safety of children with epilepsy and properly manage seizures when they occur. This is where education plays a vital role. Dr Macdonald-Laurs emphasises that families, caregivers, and educational institutions should receive guidance from treating clinicians and organisations such as the
Epilepsy Foundation. This education covers essential areas like supervision around water and other potentially dangerous situations.
Furthermore, Dr Macdonald-Laurs stresses the importance of an epilepsy management plan for every child with epilepsy. This plan provides detailed instructions for caregivers on how to respond effectively in the event of a seizure, ensuring the child's safety and wellbeing.
The impact of epilepsy: More than just seizures
Epilepsy is more than just seizures; it's a neurological disorder that triggers recurrent episodes of abnormal electrical activity in the brain. These episodes can range from severe convulsions to brief lapses in awareness. Despite this, people, especially children, live through these episodes with little understanding or support.
Epilepsy’s causes vary. Some people are born with it, while others develop it after experiencing brain injuries, infections like meningitis, or even strokes. In many instances, the origin remains undetermined. Despite its complexity, epilepsy is still not taken seriously enough. Left undiagnosed and untreated, it can severely impact a person’s life, leading to cognitive impairments, developmental delays, and an increased risk of injury. But perhaps the most damaging effect is social isolation. People with epilepsy are frequently sidelined in school, workplaces, and social settings; not because of their condition, but because of the stigma that continues to surround it.
The emotional and social impact on children
While epilepsy affects people of all ages, its impact on children is especially profound. It’s not just the physical toll; the emotional and psychological weight can be just as devastating. Children with epilepsy face much more than medical challenges; they also experience emotional and social isolation, often feeling the weight of their condition in ways that adults might overlook.
For children, the effects of epilepsy aren’t just physical; they are deeply emotional and psychological. Imagine a child who experiences seizures in school. They may become fearful of embarrassment, isolation, or being treated differently. These fears can erode their confidence, causing them to withdraw from activities they once enjoyed, like sports or hanging out with friends.
The consequences? A lack of social engagement and anxiety surrounding public episodes can hinder their growth, education, and ability to form meaningful relationships. These children don’t just need medication; they need understanding, empathy, and a supportive community to help them lead fulfilling, independent lives.
EXPERT TIP
It is important for children and young people with epilepsy to develop independence and engage in the same activities as their peers. Having open discussions about epilepsy with friends and adults outside the family can be crucial, allowing children to participate in activities away from their parents.
For older children, wearables such as seizure detection watches and medic alert bracelets can be valuable tools. These devices help alert those around them in the event of a seizure, enhancing safety and promoting confidence in their ability to manage daily life.
Children with epilepsy: Struggling for independence
Epilepsy presents more challenges than simply managing seizures. Children with epilepsy often struggle with independence, a challenge that many of their peers don’t face. Simple tasks like going to school, participating in sports, or hanging out with friends are often overshadowed by the constant fear of when the next seizure might strike.
Why do so many children with epilepsy miss out on the same opportunities as their peers? Why are parents often overly protective, limiting their child’s ability to take control of their condition?
Children with epilepsy need more than just medical treatment; they need community support that fosters confidence and independence. Empowering them to understand their triggers, manage their medications, and face challenges head-on provides them with the tools to live their lives just like any other child.
EXPERT INSIGHT
In young children, the most common trigger for seizures is fever. Febrile seizures, typically affect children between the ages of 12 months and 6 years. These seizures are usually brief and self-resolving. Febrile seizures are managed with first aid and caregiver education, usually other investigations are not required. Preventing febrile seizures is often not possible, as fever is a frequent occurrence in young children. For more information on febrile seizures, visit
this resource.
In older children with diagnosed epilepsy, sleep deprivation is a significant trigger. Ensuring adequate sleep for children and adolescents with epilepsy is essential. Other common triggers include missing medication and stress, both of which should be managed to help prevent seizures. Dr Macdonald-Laurs emphasises the importance of managing these triggers as part of an overall epilepsy management plan.
Recognising the subtle signs of epilepsy
Seizures aren’t always the dramatic falls or jerking movements most people think of. In fact, they can be much more subtle and easily overlooked, especially in children.
Classic seizures: The convulsions
The most obvious type of seizure is the tonic-clonic seizure, which involves a sudden loss of consciousness, body shaking, and uncontrolled movements. While this is the type most people associate with epilepsy, it’s only one of many.
Absence seizures: The “daydreaming” moment
In children, absence seizures are often mistaken for simple daydreaming. A child may suddenly stare into space, unaware of their surroundings, for just a few seconds. These brief episodes can happen multiple times a day and often go unnoticed by teachers or parents.
Focal seizures: The subtle twitch
Sometimes, seizures only affect one part of the brain, causing jerking or twitching in a specific body part, such as an arm or leg. These subtle movements can go unnoticed, especially if the person remains conscious or if the twitching is minor.
Auras: A warning sign
Before a seizure, some individuals experience aura, a warning signal that the seizure is imminent. Auras can involve strange smells, tastes, or feelings of déjà vu. Recognising these early signal is crucial as they offer a chance to take action before a full seizure occurs.
EXPERT TIP
It is essential for families to have an epilepsy management plan that clearly outlines how caregivers, adults, and teachers should respond when a child experiences a seizure. Organisations like the
Epilepsy Foundation offers training to families and schools on the safe use of emergency medications, such as midazolam, to help terminate seizures when necessary.
Children with epilepsy require 1:1 supervision when they are in or near water, such as during bathing or swimming, to ensure their safety. Additionally, educating families on the importance of adhering to antiseizure medications is crucial for effective management. To further assist in monitoring seizures, families may also utilise seizure detection devices, including video cameras, movement sensors, and wearable devices, which can alert caregivers when a seizure occurs.
Progress in treatment: A beacon of hope
Significant progress has been made in its treatment and management of epilepsy, with advances in medications, surgery, and vagus nerve stimulation (VNS) improving the quality of life for many. Medications, particularly antiepileptic drugs (AEDs), are the most common treatment, tailored to the type of epilepsy. For severe cases, surgery or neurostimulation devices like VNS and responsive neurostimulation (RNS) may be considered. Dietary therapies, such as the ketogenic diet, are also being explored, particularly for children who don’t respond to traditional treatments. Early intervention, personalised care, and ongoing research remain key to improving outcomes for those affected by epilepsy.
EXPERT INSIGHT
Over the past decade there has been significant progress in the diagnosis and treatment of epilepsy, particularly with increased access to genetic testing and high-quality neuroimaging. This advancement is crucial, as accurately diagnosing and understanding the underlying cause of epilepsy is essential for providing the right treatment.
As an expert in surgical epilepsy, Dr Macdonald-Laurs notes that it’s an exciting time in this field. Precision epilepsy surgeries now allow for the removal of much less brain tissue than in the past. High-quality neuroimaging and tools like stereo-EEG help locate surgical targets in patients without visible lesions on MRI, while minimally invasive therapies such as laser interstitial thermal therapy (LITT) and thermocoagulation offer effective options for targeting small lesions.
Globally, there is also growing access to neuromodulation therapies for patients who cannot undergo resection or ablation. These include vagal nerve stimulation, deep brain stimulation, and responsive neurostimulation. Additionally, clinical trials for gene therapy and disease-modifying medications for genetic epilepsies are becoming more widely available, offering new hope for patients.
When to seek help
If you or someone you know has a seizure for the first time, it’s important to seek medical attention right away. Prolonged seizures (lasting more than 5 minutes) or multiple seizures without recovery between them are medical emergencies. Additionally, any noticeable changes in seizure patterns should prompt a visit to the doctor as soon as possible.
A call for greater awareness and action
Early diagnosis is essential for effective treatment and improving the quality of life for individuals with epilepsy. Community support for children with epilepsy can help them build the confidence and independence they need to live fulfilling lives. Public education about the different types of seizures will promote earlier recognition and treatment. Guidance for families on managing seizures can reduce anxiety and ensure better care for those affected.
In our social media posts, many young individuals responded with personal concerns about the lack of awareness and understanding of epilepsy. These responses highlight the pressing need for greater public education, empowerment, and support for those living with epilepsy, particularly within schools and workplaces. Addressing these concerns can help create a more inclusive environment and reduce stigma surrounding the condition.
EXPERT CONTRIBUTOR
Dr Emma Macdonald-Laurs
Paediatric Epileptologist & Neurologist, The Royal Children's Hospital, Victoria, Australia
Post-graduate Researcher, Murdoch Children's Research Institute, Victoria, Australia
X: @_emma_m_l
This article has been written by Healthful For You and does not represent the opinions, views, or endorsements of the Expert Contributor of this article. The Expert Contributor has solely provided expert insights and tips for informational purposes. Any interpretations, conclusions, or statements beyond these contributions are those of the author and do not reflect the views of the expert contributor. This content is intended for informational purposes only and should not be considered as medical, legal, or professional advice.
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