Dad, Can You Create a Light that Turns On When My Brain Switches Off?
With this question from his 10-year-old son on March 15th 2015 at bedtime, Tim Buckins'1 life took a new direction. His private and professional lives merged into one. Suddenly all that had foregone seemed only to have been a preparation for this moment. But it turns out that the story had actually started 6 years earlier. Tim shares his story.
When he was five years old, our son had great plans: he wanted to become an inventor. But at the beginning of 2009 “shaking” came into his and our lives… The first time my wife and I saw our son shaking we were in the kitchen. I’ll never forget it. As the shaking occurrences continued, we knew instinctively that they would not just blow over. The hollow gaze, the clinging in the air, the convulsions and especially the anxious, support-seeking look on his face. These continued for a while…
“That’s called ‘shaking’ daddy, haven’t you seen it before?” No, we had not seen this before. A few days later we could no longer miss it, seeing these shakes several times a day.
Slowly, hospital visit after hospital visit, the pieces of the puzzle started to form a painful picture. The seizure notebook became fuller and fuller and more lines were added every day - until one page per day wasn’t enough. His dreams became nightmares and his periods of sleep became shorter. Sometimes he didn’t recognise us anymore and we didn’t recognise him either. Despite the birthmarks still being in the same place, our son just wasn’t himself anymore. Still, the days passed and we kept hoping that we would all be able to get some sleep; to just sleep through the night.
Cocktail of pills
We heard terms like “cognitively impaired”2 and “refractory”3 before, but what did they mean in real life, outside the hospital building? With a new cocktail of pills, we saw something in our son change again. “Did you notice that too?” we’d say. We had our son switch schools because he had been bullied. He has now made new friends, and as a result of the drugs his seizures no longer involve “shaking”. They are now “on pause”! This is better of course. But even with his seizures being “on pause” the fears of us all still remain. Fears for today, for yesterday, for tomorrow and for the future. We continue to look for the best possible medicine combination. Sometimes this goes wrong, the “on pause” turns to ‘“play” and things turn ugly again. So we return with the silent hope that the “on pause” button is still available.
“People are always angry with me.”
Our son said:
“People are always angry with me.” with a sad look on his face.
I asked him:
“What do you mean? No, people are not angry with you. You can sometimes be a bit cheeky and of course, then, the teacher and we are angry with you!
You have to listen and behave well.”
“Put on your clothes, brush your teeth, we have to leave, the school bus is here.”
“Hurry up! You’re late for the bus.”
“The bus is almost here! I’ve asked you three times and you aren’t ready yet. It’s the same thing everyday…
Yes, I’m angry.
No, I’ve already asked three times!”
”What? You only heard me once? Could you have been “on pause?”
He didn’t know and neither did I - I’d been busy with the school bag and lunch. But then I figured out what had happened!
I said:
”Son, so because the teacher doesn’t notice when you’re “on pause” miscommunications happen regularly, and this is for you the biggest impact of your epilepsy?? Really?”
He said:
”Yes dad, I just want a light that turns on when my brain switches off so people know what’s happening so they don’t get angry with me.”
A light turns on
So, I dived into researching EEG4 technology, speaking to other parents and children affected by epilepsy, to teachers, and to neurologists, and learnt that we all have the same need: access to evidence regarding seizure frequency and severity.
I learnt when a “I’m not here for a moment because I’m on pause!” light would be useful for a child and teacher to avoid misunderstandings. This would let the teacher know what subject matter they’d need to repeat for the child. It’d let them know when they’d need to give a child a little more time to complete a task and tell them why the child might be so tired sometimes. They’d know about the seizures.
Knowledge is power
Epihunter collects ongoing, personal, objective EEG data from the person wearing the device which simply cannot be obtained elsewhere (unless a person spends their life inside a hospital!).
As parents, we can view the data and know if our son has had a good or challenging day, whether it’d be better for him to have a rest or for him to do his homework first.
The data is very useful for the neurologist because it enables them to assess our son’s epilepsy objectively - rather than basing key decisions on just our memories, notes and descriptions.
After launching epihunter back in 2018, we started to get a lot of feedback on the impact of epihunter on daily life. Working with top neurologists such as Dr Alexander Rotenberg5 (neurologist at Boston Children’s Hospital6, US) we got verified that getting video recordings could have a big impact on the neurologist consultations and follow-up.
Taking the reporting pressure off your shoulders
I remember our neurologist asking if we could make some videos of my son's seizures. However, when seizures took place at home, my wife and I would often fiddle with our phones and there would typically be quite a delay before the video recording started. Sometimes we even forgot to press the "record" button! It was very frustrating not being able to provide the neurologist with those valuable videos.
As Dr Rotenberg put it:
With epihunter, we enable the front-facing camera to automatically record a seizure video 8 . Including the 30 seconds before a seizure is taking place, adds a great deal of information for the neurologist. The videos recorded are made available in a separate app, epihunter Companion, which also shows seizure detections and notes made with epihunter.
Clinical validations and community
These days we’re also busy with a clinical validation study, funded by Epilepsy Foundation9, with Dr Rotenberg’s team at Boston’s Children Hospital and multiple European epilepsy reference centers.
I’d also like to thank our community and maybe especially the UK mum Sophie for starting our epihunter support & chat group on Facebook10 All new epihunter users are warmly welcomed to join this group and be part of the conversation. The feedback from our fantastic community is driving our entire team to think of new ways to reduce the impact of epilepsy on daily life.
But a final thank you goes to my son: the true inventor of our first epihunter product!
Epihunter will be working with the following organisations in the clinical validation study:
Fact box: epihunter
- The first digital solution to help people with absence and focal impaired awareness seizures11
- Provides an alert, plus records a video of and logs these “difficult-to-notice” seizures
- Available in the UK, Ireland and mainland Europe; consisting of epihunter Core; a seizure detection app, a Companion app, and a slim EEG headband
- The software is a CE marked Class I medical device12
- Already used in the United Kingdom, Republic of Ireland13, the Netherlands14, and Belgium15 by children, teenagers and adults
- Winner of the EIT Health - Digital Health - 201916 prize for promising, health-tech companies.
Ordering epihunter
Go to: www.epihunter.com17 - with free shipping!
You will receive a welcome kit, which includes:
A light and comfortable headset17 to record your EEG/brainwaves
The epihunter Core app17 (Android only) collects and analyses the EEG signal from the headset in real-time to detect absence seizures and some focal onset impaired awareness seizures18 in real-time. Upon detection, it can turn on the smartphone light, make a sound or video record the seizure happening
The epihunter Companion app (Android and iOS) provides you with access to your epihunter seizure records and insights
A handy smartphone stand for use at school, at work, or even at the dinner table!
