Page 61 - SEN115 - November/December 2021

Epilepsy
About the author
Rajvinder Singh Gill is a psychologist working with children, young people, carers and their families as a therapist and facilitator.
rsinghgill@youngepilepsy.org.uk
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
“Just the beginning and for some, the end is further and further away.”
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.
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
senmagazine.co.uk
SEN115
61