In February 2022 our son, then three years old, began complaining of an itchy eye. Concerned, we took him to the eye clinic and although he was given the all-clear, his symptoms persisted. Just two days later, we received a call from his nursery to say that he had experienced a seizure.
After a series of tests, he was diagnosed with epilepsy. At first, I did not fully take in the gravity of this. I had heard of epilepsy but couldn’t imagine the impact it could have on a person’s life. My son’s initial diagnosis was a benign childhood form of epilepsy which we were told he would grow out of. We started him on the anti-seizure medication Clobazam and hoped his symptoms would stabilise and eventually disappear.
After that initial diagnosis, his condition deteriorated at a frightening pace. Despite multiple medications, his seizures worsened and it quickly became clear that his epilepsy was far more complex and harder to control than initially thought. By March 2022, his condition had worsened so much that he began to lose his speech. We were eventually transferred to Oxford John Radcliffe hospital, for specialist neurological care. Within 24hours our son was in the Intensive Care Unit.
After a week, we were transferred to the Bristol Royal Children’s Hospital for further assessment. Throughout this time, our son remained very unstable requiring continuous emergency medical intervention as doctors performed every available test, culminating in a Stereo EEG, hoping to pinpoint the source of the seizures. Unfortunately, this was unsuccessful. We then tried the ketogenic diet, which, combined with a careful medication balance gave us enough stability to be able to bring him home.
A later attempt to reduce his medication landed him back in the hospital, but it also led to an effective balance of medications that, from November 2022, controlled his seizures. However, the looming question of when the seizures would return was a daunting prospect hanging over us.
In February 2023, we received a breakthrough — the team identified the brain abnormality causing his seizures. Our son underwent brain surgery and six months later we began the process of weaning him off his medications. Unfortunately, after tapering his first drug, our son’s seizures re-emerged after an 18-month absence. We’ve had to re-introduce his medications and are now adjusting to a different future than we had hoped.
Epilepsy has had a profound impact on my son’s life. He has spent a significant amount of time in various hospitals, enduring numerous medical interventions. Even once his condition stabilised, the heavy mix of anti-seizure medication has significantly affected his ability to focus, as well as his speech, mood and levels of fatigue. These side effects impact every aspect of his daily life, from his education and social interactions to his emotional well-being and communication.
Through my son’s journey, it has become clear how epilepsy can hinder a child’s development, particularly in critical areas like speech and motor skills.
Beyond the seizures themselves, the medications he takes have a significant effect on his cognition and ability to keep up in school. Research into the relationship between epilepsy, anti-seizure medication and neurodevelopment is crucial, not only to better understand these impacts but also to create tools and resources that can help parents, carers, and educators support children affected by epilepsy and any neurodevelopment delays they may experience.
I hope that with further research, we can develop more treatment options for difficult-to-treat forms of epilepsy — ones that minimise the detrimental impact on quality of life and support better integration into society. I also hope for a deeper understanding of the various types of epilepsy, allowing for faster, more accurate diagnoses.
