It was a hot August morning in 2016 when our gorgeous little boy Cameron suddenly collapsed at home. At first we thought he might have fainted but we soon realised by his floppy body, his unresponsiveness and his open eyes staring blankly up to the left, that something was seriously wrong. The paramedics were there in seconds and before we knew it, I was in the back on a ‘blue lighted’ ambulance with my unconscious son and paramendics calling into resus to prepare for a ‘3 year old male’
My husband and I will never forget that morning and the days that followed when Cameron was admitted to St Georges. After a series of tests and a few days of agonising waiting we were told that the EEG showed abnormal activity in his brain which could be related to epilepsy. He wasn’t diagnosed then and we were still hopeful it was a ‘one off’. However we got to the end of that year and just before Cameron’s 4th birthday he had two more ‘episodes’ similar to the first which we later understood as ‘Tonic Clonic seizures' and he was diagnosed with Panayiotopoulos syndrome. This diagnosis gave us hope as we understood it to be a benign form of childhood epilepsy.
What followed was a really tough journey for Cameron and us as a family. He was put onto his first anti-epileptic drug; Carbamezepine (the first of many) which he hated taking. The medication along with his seizures caused severe anxiety for Cameron and the side effect of this was huge behavioural problems. He had just started pre-school and he and the school didn’t know how to cope. He struggled with his surroundings and his feelings and it resulted in momentous aggressive meltdowns and often being sent home. We would later find out that Cameron also had ADHD, cognitive delays, delays in his fine and gross motor skills, Sensory Processing Disorder all of which made absolute sense of this little boy in crisis and unable to cope at school and in social situations.
For much of these first years Cameron was in and out of hospital, on new medication combinations which had their own side effects, he struggled to make friends, he was frequently having meltdowns and in all honesty - our little boy was very unhappy. This was a heartbreaking and stressful time for us as a family. We knew how wonderful our boy was but he struggled so much during this time that it was hard for people to understand him. We all felt lost and alone.
At the end of 2018 Cameron was on a combination of 3 anti epileptic medications which controlled his clinical seizures. His behaviour had settled and thankfully by this time the school had developed a fantastic SEND service with a new ‘head’ and SENCO and Cameron was getting an EHCP which would mean 121 provision. He was happier and had made a few lovely little friends at school. In 2019 a new consultant reviewed Cameron’s case and sent him for further tests; a 48hr EEG, a MRI and a lumber puncture. The results showed that Cameron had ESES which are night seizures. It also showed that there was a consistent area of his brain that showed up in his historical EEGs that could be the source of all his epileptic activity. The consultant concluded that Cameron most likely did not have Panayiotopoulos syndrome but instead another type of epilepsy and referred him to Great Ormand Street to see if there might be a surgical option to treat Cameron’s epilepsy. Whilst we waited for the referral, Camerons ESES was treated with an intense 12 week course of steroids in the Summer of 2019. These had some unpleasant side effects but were worth it as they had seemed to treat the ESES however early in 2020 Cameron’s behaviour started to worsen again and it was so intense that he was given an emergency EEG on the 13th March 2020 - just before lockdown, which showed that his ESES was back. With Coronavirus, Cameron couldn’t go on another intense steroid treatment again and in all honesty - we didn’t want him to either, knowing it didn’t work the first time. During lockdown Cameron was trialed on 3 new different medications and sent for EEGs to see if they had worked. They hadn’t. He is now on a combination of 3 medications to control his clinical seizures and we are awaiting further tests at GOSH later this year.
We are currently in a phase of waiting for what's next. There is a lot of that for us as parents of children with epilepsy and at first it can be scary or sad to think of what might be, but then you start to realise what’s in front of you right now and for us that’s our gorgeous Cameron; our 7 year old boy with the funniest sense of humour, utterly lovable and caring, so empathetic and warm to his friends and family, so creative and animated, loud and very chatty! In fact he will often delight strangers in the street with an out of the blue compliment! Yes he still has his moments but over time and with the support of his medical team, his school, friends and family, he is learning to cope with his feelings and we are learning to help him and ourselves too.
Written in 2020