Dave, Author at Epilepsy Dad

Epilepsy And The Lack Of Freedom

One day last week, after I dropped my son off at school, I walked past the playground and the late kids being hurried by their parents across the street. The kids were a few years older than my son and, on the walk home, I began to think of when I was their age and lived in an apartment complex in Connecticut.

I remember there was a common area between the apartments and the street that was covered in grass, with a big, green boulder that I used to climb, imaging it was the tallest mountain. My friends and I used to meet on the grass and play baseball, or tag, or ride our bikes on the sidewalk through the buildings.

My sister was among the older kids that used to also congregate by the boulder, usually either ignoring or taunting their younger siblings. But there were no parents. Many of our parents, including my mother, were single parents or low income parents trying to make ends meet, so they were working or inside catching up on chores and other duties. So we were left to go outside, and play together, and to fill up our days with whatever we felt like doing.

If the older kids got to be too much, my friends and I would grab our fishing poles and walk through the woods adjacent to the apartments to a small creek where we would catch frogs and small fish and where I swear I saw a river monster (which was probably actually something like a muskrat). There was a sledding hill on the other side of the complex, and patchy wooded areas that we could explore with plenty of trees to climb. Our ability to roam without parental supervision or babysitting by our older siblings made us feel very free.

We don’t have any spaces like that near our house, and living in a big city is a completely different environment than the area around those apartments when I was my son’s age, but I wondered if my son would ever get to experience that same sense of freedom that I had when I was living in those apartments. Even if there were places to roam and their weren’t busy streets to navigate, will his seizures prevent him from being able to run off and play without the watchful eye of my wife, me, or another caregiver? Will he always have to be around other people, particularly someone who knows what to do if he has a seizure?

I’ve always said that I didn’t want epilepsy to make my son feel “less than”, or for it to keep him from doing anything he wants to. But the reality is that it might, especially if we continue to have such a hard time getting his seizures under control. He probably doesn’t notice it as much now, because he’s six and because he’s not supposed to venture out in to the world by himself. But as he gets older, and as he’s not able to experience the same freedom that his friends do, I’m going to need to find a way to make it okay.

The Lonely Record – A Story Of Data In Epilepsy Diagnosis

Somewhere in a cluster of servers in windowless rooms spread around the world, there is a Great Machine. On that machine, there lives a database. In that database, there is a table, and in that table, there is a record about my son. The 1s and 0s in that record contain an anonymous listing of a six-year-old boy. Those bits and bytes also contain data of expressed genes captured during an exome sequencing.

In the same database, there are records of thousands of other children that have had their exome sequenced, too. Each individual record has at least one common attribute with all the other records…the child that the record represents has epilepsy.

The goal of the exome sequencing is to identify one of the known genetic variations that is known to cause seizures. If that happens, patients can benefit from those that came before. A potential treatment plan identified by other patients with the same genetic condition might provide a more targeted approach for the newly matched patient. It might also offer some insight in to prognosis. For better or worse, it may at least give some answers.

For the new records that are placed in to the database that are not matched to a known genetic cause, they sit unattached and alone. These records lack causation and, in their unjoined state, they also lack correlation. There are no patients that came before, no best practices or lessons learned. There is no prognosis. There are no answers.

My son’s record is that way. It rests alone in a database, somewhere in the world, on a cold, metal server in a windowless room, waiting to be called. Waiting to be joined with another record. Waiting for correlation. Because with correlation, there can be association. With association, there can be coordination. With coordination, there can be answers.

Every six months, the Great Machine tries to use new discoveries, new cases, to find patterns that were previously unseen or unknowable. It calls out to each record, looking to find those that it may bestow the gift of correlation. For most, there is no correlation, no gift, and they return to their lonely state until they are once again called upon.

Maybe someday, my son’s record will find a partner. A commonality between another record in a database. A non-uniqueness in the universe. In all likelihood, the result of a match will not produce a cause for the seizures. It may, however, start to provide correlation between cases that can be studied further.

To a lonely record, it’s at least something.

Exaptation And Innovation In Epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

In evolution, the term exaptation refers to a trait that has evolved for one purpose but is subsequently used to serve another. The classic example is feathers, which evolved in birds as a way to regulate body temperature but were later adapted for flight.

The same process is happening in technology, including technology related to seizures and epilepsy. Already this week, other bloggers writing about technology and innovation in epilepsy have described exapting technology developed for one purpose for the treatment of epilepsy. Whether it is how Whitney Petit described how she uses her fitness wearable to control her nocturnal seizures or how a sensor to measure the “fight or flight” response became part of the Empatica device indented to detect seizures, advances in general areas of technology are also spurring progress in the managing and controlling of seizures.

I think a lot about technology. My day job is to identify trends in technology and peer into the future to try to predict where things will be in five years, ten years, or even further in to the future. I also think a lot about epilepsy. My six-year-old son has refractory epilepsy, which means it’s not controlled with medicine. Being a technologist and an engineer, my natural inclination is to turn to technology to help my son, even if it is not currently able to offer any answers.

There is one trend that I have been focused on most recently, and that is the development, availability, and shrinking size and cost of sensors. For example, companies are putting gyroscopes that measure angles and tilt and accelerometers that measure acceleration in wearable devices simply because they can, because the sensors are so small and so inexpensive. There are already components smaller than a watch battery that can detect movement and relay information to another device. Smart textiles provide digital fabric that will allow sensors to be stitched seamlessly in to clothing.

When I look in to the future, I see the ubiquitous nature of sensors in everything from watches and rings to shirts and shoes as manufacturers attempt to measure, collect, and report on our every step, breath, and literal heartbeat. I also see unlimited potential to repurpose these objects in ways that will make my son’s life better by helping him manage his epilepsy. The ultimate goal is to remove the friction imposed by requiring a specific device to be worn for the detection of seizures and to, instead, put that capability everywhere.

There are challenges with making this happen. Manufacturers must open their platforms and allow communities to leverage the data or sometimes reprogram devices for new tasks, such as detecting seizures. Testing for medical devices is rigorous, necessary, and expensive. But, in many ways, the ground work will be done. The sensors and devices necessary to do the work will be out there already, and we will just need to find creative ways to take advantage of them.

And that is where you come in. Even if you are not a technologist or an engineer, you are reading this post, most likely, because you or someone you know has epilepsy. In order to make the future happen, it will be up to people like you to create it. The next time you pick up a new gadget, ask yourself how it can be repurposed to solve a different problem. Instead of detecting how many steps you are taking, observe the physical characteristics of your child’s seizures and ask yourself how the accelerometer in that device might be able to detect a myoclonic seizure or a fall. The next time you read about how a new athletic top can measure the performance of an athlete, think about how those same measurements might be able to detect the increased heart rate or breathing rate that happens during a seizure.

I think a lot about technology, and I want you to think a lot about technology, too. Because there is no one better equipped to find creative uses for this new technology in the treatment of epilepsy than those of you that are living it every day.

NEXT UP: Be sure to check out Jade Dolby – The Art of Living with Epilepsy for more on Epilepsy Awareness.