Living with epilepsy: stories of children and their families

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Rajvinder Singh Gill accounts of families and their children’s journey through the process of diagnosis and its aftermath.

The diagnosis of epilepsy is part of a journey that an individual will make alongside their family. The epilepsy journey varies and can be challenging for families. For some, the diagnosis leads to relief and better management of epileptic episodes to the point that normal life resumes while for others it is a difficult process of medical reviews and appointments often resulting in temporary relief without a long-term resolution. Parents often find that their child’s presentation varies day to day and at times there is the accompanying loss of cognition and emotional wellbeing.

Epilepsy is often a hidden condition even though it’s prevalence should make it more visible. In terms of numbers, around 87 individuals get diagnosed with epilepsy in the UK every day. The picture is complex. It presents differently in individuals and there are around forty types of seizures to account for. Perhaps most of us equate a seizure with the body writhing in pain from the loss of muscle functions. However, the source of epilepsy is in the brain. It is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Individuals experiencing a seizure may go blank or have an absence lasting a few seconds whilst some individuals fall to the ground. Individuals with epilepsy do lead normal lives although sometimes epilepsy occurs alongside learning disabilities and autism spectrum disorders. In young children with learning disabilities, epilepsy can have a profound impact as it compromises their quality of life.

The diagnosis of epilepsy is often an arduous journey for many parents and their children. The assumption on diagnosis is that the child will recover and get better soon. However, the truth is that this is just the beginning and for some, the end is further and further away. Due to the complexity of epilepsy, some cases are untreatable while for others there is a sense of relief as it will be better managed through medication. However, it does not go away.

The accounts below are of families and their children’s’ journey through the process of diagnosis and its aftermath. All the names have been changed and other identifiers have been removed.

Hank and his family

I met Hank and his parents when he was thirteen years old but the story starts when his parents first noticed that something about Hank was not right. Hank was around three years old when his parents shared their concerns with his paediatrician. The regular health review followed and, it became apparent to the medical staff that Hank was not reaching the milestones as expected. This led to further investigations and an appointment with a neurologist. This confirmed the suspicions that Hank had epilepsy. The parents’ expectations at this point were that it would be okay now that they knew what it was. Repeated visits to the doctors followed with frequent hospital appointments as further investigations were done. Both parents found themselves struggling with their own mental health alongside worries about finances and jobs.

On meeting with the family to discuss a school placement, I encountered a father who was still grieving for his lost child and angry that nothing appeared to have been done to make Hank better. He missed his three-year-old son. Hank’s mum appeared to have given up on life and was going through the motions of living. Their individual ways of grieving for a lost childhood and a hoped-for future were striking. Both had convinced themselves that the professionals had deceived them of the truth. Their story piqued my curiosity and I found myself wanting to know more of how it had been for them. As they told their story of the diagnosis and aftermath what struck me was the repetitive nature of their trips back and forth to the medical professionals for tests and further investigations. Each time they had a meeting with the professional concerned and each time the treatment and intervention was discussed with them, a little light of hope was lit however, as little changed for Hank, they stopped listening, feeling overwhelmed by the task ahead. In this state of mind, they could not retain the information or even process it for its truth. Hank has a particular type of epilepsy named Lennox Gastaut Syndrome. It is a progressive disease and will probably cause increasing deterioration in Hank’s capacity to participate in learning, social and physical activities as he grows older.

Medication.

Hank and his family’s story is not unique. It is quite usual to meet with parents of children with epilepsy who felt they were initially not believed and when they were taken seriously it led to more trips to the specialists and little to show for it. They were not looking for management of epilepsy, they were looking for it to be fixed. The deception lay not in the epilepsy being ignored or called something else but in parents’ certainty that epilepsy will pass away once the child was diagnosed and medication prescribed. We tend to hear what resonates with us and learn to see what pleases us. In doing so we often ignore the things that are uncomfortable to explain and observe.

In schools across the country children with absences (a particular type of epilepsy) are sometimes designated as daydreaming or not ‘with it’ until the persistence of the parent or the astuteness of a professional raises a concern about the child’s capacity to be alive to the situation.

Epilepsy by itself is not a learning difficulty since it is a medical condition however, the impact of epilepsy on a child and young person’s engagement with learning is profound. A child repeatedly having small absences in the classroom will be missing chunks of learning and losing any hope of catching up as their peers’ forge ahead. Self-esteem suffers as a consequence of not being quite there alongside their peers. Specialist appointments and missing school all play their part in the child not fully in education. Alongside this, the child experiencing seizures is worried about their presentation. Sometimes accidents happen and a seizure may lead to loose bowel movement or urine leaks. A child experiencing drop seizures is seen as vulnerable and as someone for whom it is difficult to provide care for in school. This in turn may lead to behavioural problems and the child is seen as difficult. Dom’s story below provides a context for this.

Epilepsy and Dom

Dom was in mainstream school doing well. He was observed to be polite and conscientious about his work. Around the age of fourteen epilepsy appeared in his life. The onset of epilepsy was gruelling; the family saw the boy they knew disappearing before their eyes and he found it difficult to hold his own in his mainstream class. Often, he was physically present but having absences and missing chunks of information. His presentation became a topic of conversation amongst peers with words that were meant to hurt. His behaviour was now the source of concern for the school and his parents. Dom himself was concerned about his lack of knowing and missing chunks of information that his peers appeared to grasp whilst he was not aware of it. His presentation changed from being lively and energetic to disorientated and confused. As epilepsy started taking over his life it became difficult for him to be present in learning and eventually in school. The consistency in his life was now the hospital stays. The family were in crisis as they worried about the next time, as his strain of epilepsy was drug resistant.

Dom’s case highlights the unpredictable aspect of the onset of epilepsy. No one in Dom’s family has epilepsy and this took the family by surprise as it turned their lives topsy turvy with such force that they can only dream of the lives they used to live. For Dom the future is one in which his cognitive abilities will deteriorate. At present he is aware of the deterioration and he himself is experiencing the loss of who he was. His mental health and emotional wellbeing are suffering as his quality of life worsens. From a position of independence, it is likely that with time he will become dependent on carers for most of his basic needs.

Both cases highlight the human cost of epilepsy that is often forgotten as parents stride from one episode to another with professionals holding their hands but not able to do what the parents actually want; get rid of epilepsy. Management through medication appears the most that can be done. Parents find themselves chasing and fighting bureaucracy to get the right provision for their child. A fight on top of others. Managing epilepsy and the care for their child becomes an all-consuming affair and at times is relentless in its urgency. School staff often do not understand the nature of epilepsy and find themselves at a loss to support the child and the family.

The challenge for the parents and the school is to maintain the placement while providing a sense of normality to the learning environment.

Rajvinder Singh Gill
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Rajvinder Singh Gill is the Head of Wellbeing
St. Piers School, Young Epilepsy
E: Rsinghgill@youngepilepsy.org.uk

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