Kaiden

Kaiden lives in Kent with Mum Alicia, Dad Taylor and sister Marla. Alicia shares their story.

Kaiden had his first seizure at 4 months old, when he had his first immunisations. He was shaking all over and jerking. He stopped breathing and started going blue. We rushed Kaiden to hospital and were told it was a febrile seizure triggered by the jabs.

As parents, we were scared and terrified it was going to happen again. Kaiden was okay for a month and a half after his first seizure – I’d just started to relax.

His next seizure happened on Christmas eve when we were sitting, watching TV and drinking tea. Kaiden’s dad, Taylor, was at work, so I called him on the way to the hospital. We spent Christmas eve, Christmas day and boxing day in hospital, with Kaiden going for a CT scan on Christmas day, which came back clear.

The next few weeks were spent going back and forth to the local hospital with Kaiden’s seizures – he became well-known there and the staff even got him birthday cards because they knew he’d likely be in hospital to receive them. We always had go bags by our sides, ready to head back to the hospital.

Getting a diagnosis

Soon after, we started to see the consultant in our local hospital and they diagnosed Kaiden with epilepsy, putting him on different drugs to try to help and control it. This didn’t work. His consultant admitted he was at a complete loss and was referring Kaiden to a local team at Evelina Hospital and a consultant; Dr Elaine Hughes. My husband started researching and found that Dr Hughes was a specialist in Dravet Syndrome. After googling, we realised that Dravet Syndrome ticked every box for Kaiden.

We met with Dr Hughes and Amanda Tomalin, Epilepsy Nurse Specialist, who started to change Kaiden’s medication. They put him on a new one we hadn’t tried before; Stiripentol. This was a game changer for Kaiden. They referred us for a genetic test. Kaiden had his genetic test just before COVID hit. We got the results to confirm Dravet Syndrome not long into the first lockdown – it was really hard as we couldn’t see anyone or hug anyone while coming to terms with the diagnosis.

Facing challenges

The biggest challenge we’ve had to face is when Kaiden contracted COVID in December 2021, along with the rest of the family. He was admitted to our local hospital three days after a positive test. Kaiden’s condition worsened while he was in hospital and he couldn’t breathe by himself. His seizures were constant and nothing seemed to work. He was incubated and sent to Great Ormond Street Hospital where he spent almost 10 days on ventilator support. Being told that your child’s condition was critical was terrifying and our family had travelled down from the North, just in case the worst happened. We were overjoyed when the ventilator support was reduced and Kaiden started to breathe by himself. We owe a lot to GOSH and their incredible team.

Earlier this year there was a time where Kaiden was having seizures every day. It got to the point where we couldn’t even leave the house. I remember trying to head out the door to pick Marla up from school, but Kaiden had a seizure in the hallway. We believe he was very light sensitive at the time, which triggered the seizure. After speaking with Kaiden’s medical team, they put a new medication in place – Zonisamide - which has helped. His seizures still happen, but not as bad now.

Dravet Syndrome is not just epilepsy. Activities that other families might take for granted are hugely difficult for families affected by Dravet Syndrome; things like going to the park can be overwhelming for him. Kaiden has a developmental delay (learning disability). He is also autistic and sensory overload can lead to seizures.

It’s incredibly hard on my daughter, Marla, who misses out on a lot. She loves her younger brother so much and although she does get upset and frustrated at times, she is a very clever young lady and tries her best to understand.

Support from Dravet Syndrome UK

Dravet Syndrome UK has helped us by providing a video monitor, which gives me the peace of mind to be getting on with things around the house, while always keeping an eye on Kaiden. He can’t be left alone.

They’ve also helped by putting us in contact with other families who know what we’re going through. This really helps, sharing knowledge and experience of Dravet Syndrome and the day-to-day challenges we experience. And to be honest, it’s good to know you aren’t on your own. My advice to newly diagnosed families is to reach out – there is support and help out there.

A smiley little boy

Kaiden is an amazing young lad. He puts up with a lot and takes things in his stride. He has this infectious smile - you can't help but smile and just fall in love with him no matter what’s happened. His favourite things are Mr Tumble and Peppa Pig and these two shows are on repeat in my house!

He is starting school this September and we are worried about that. We know if he gets ill it will trigger his seizures, but I know that he is going to the right school that can cater for his needs. That’s all I can keep telling myself; it will be good for him but also good for me too.