CECILIA AND OLIVIA

Since the very beginning, Olivia has seemed to sense when an episode could be about to happen and has come to find us in our room, searching for a safer environment and adult support. I find it remarkable that she could have this awareness.

Olivia is five years old and lives with Lennox-Gastaut syndrome – a severe and rare form of epilepsy characterised by cognitive disorders and multiple seizure types. In this interview, Olivia’s mother Cecilia discusses her diagnosis, treatment journey and the various impacts of epilepsy on their family life.

How did you find out Olivia had epilepsy? What tests were given?

We first noticed certain things in Olivia’s behaviour like her facial expressions changing, head dropping slightly, eyes seeming blank, and jerking movements. Before going to the GP for the first time, we as a family had suspected Olivia could have West syndrome. This was extremely concerning due to many factors associated with the syndrome, including the reduced life expectancy.

Epilepsy was first diagnosed after an EEG that was carried out at Poole Hospital in November 2018. Olivia was two and a half years old. An MRi scan showed Olivia’s brain to be normal and tests had also revealed her metabolism and blood levels were as they should be, so the doctors suspected that the underlying cause for her condition was probably genetic. A later EEG carried out at a hospital in Florence revealed a slow spike-wave pattern, indicating Lennox-Gastaut syndrome. West Syndrome was dismissed following the EEG, however we later discovered that Lennox Gastaut syndrome is often the evolution of West Syndrome as the child grows. This type of epilepsy is called catastrophic epilepsy as it is gradually regressive and has a very significant impact on the child’s development, who may stop learning and growing mentally, socially, and emotionally from the onset.

Initially, we were relieved to have found an answer with this diagnosis, but the journey really started there. We had longed for answers about the causes, but what we wanted more at this point was an effective treatment. Olivia is now five years old and takes several medications to help with her atypical absences, myoclonic, tonic-clonic seizures. Despite being five, she is currently working towards progress expected from a 12 to 24 month’s old baby.

Early last year we also started using CBD oil and saw a huge improvement in her cognition, to the extent where she can now focus on a task for up to 20 minutes at a time. She is also more active and talkative. We have many good days now, when we used to only have bad days – this has made such a huge difference.

Initially, we were relieved to have found an answer with this diagnosis, but the journey really started there. We had longed for answers about the causes, but what we wanted more at this point was an effective treatment.

Since the very beginning, Olivia has seemed to sense when an episode could be about to happen and has come to find us in our room, searching for a safer environment and adult support. I find it remarkable that she could have this awareness.

How has epilepsy interrupted Olivia’s life?

The seizures really are just the tip of the iceberg. The surrounding problems are a huge part of the challenges of epilepsy. Olivia seems to experience almost constant abnormal background activity in her brain. One minute she can be dancing and happy, and the next minute she will be still and expressionless. Epilepsy tends to interrupt Olivia’s life roughly every 10 minutes in some way or another.

Olivia has been so exhausted from myoclonic seizures, which we have found to be the most destructive and disruptive. There are times when she has had 50 or more seizures in succession. Coupled with all the other effects of her condition, this meant that she struggled to walk. Her mobility became a huge concern of ours for around two years.

Her behaviour has been through many changes due to her condition and the medications used to treat it, and Olivia remains practically non-verbal. She faces challenges in focussing and engaging in activities and social situations. Her energy levels and eating habits have also been greatly affected.

Another issue has been sensory impairment, which causes Olivia to put pretty much any object she finds in her mouth – be it nails, buttons, plastic, pens, safety pins, or sand.

For us as a family, it is very hard to ever relax or do “normal things”. We rely on various aids around the house, such as cameras to cover the rooms when we cannot be with her and an anti-suffocation pillow and numerous chewy toys. Olivia’s sleep, and ours, is disrupted most nights. Since the very beginning, Olivia has seemed to sense when an episode could be about to happen and has come to find us in our room, searching for a safer environment and adult support. I find it remarkable that she could have this awareness.

Cecilia went on to tell us about Olivia’s father Laurence doing the New Forest Half Marathon last year in aid of Epilepsy Research UK, and why the family feel it is important to support research into epilepsy.

Laurence had always wanted to do something like this for a charity. The half marathon was his first proper race and we were so proud of him.

I think parents and researchers need to work together to better understand and treat epilepsy. The knowledge each group has is really two sides of the same coin – parents have lived through the experience and know about the day-to-day impact of the condition, and researchers know about the underlying scientific causes and potential ways to treat epilepsy.

Our hopes for the future would be to see a more complete and connected data system where information from epilepsy patients across the different health services is shared. This would aid quicker diagnosis and, amongst many other things, would help so many get the right treatments before it is too late.

One positive effect of the pandemic is how much more information has been made accessible online. I have watched various webinars from across the world and gained so much more knowledge about the causes and treatments of epilepsy.

Ultimately, I hope that one day we are able to reduce Olivia’s seizures and that she can experience a better quality of life.

– Cecilia, April 2021

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