Starting From The Beginning

One of the truths about anyone new coming into our lives today is that they will never know how bad things were. Eventually, anyone that hangs around long enough will hear my son’s story. We will tell them how dark the times were and how sick my son got and how grateful we are to be where we are. But looking at my son today, it’s hard for most people to believe that things were that bad.

That disconnect feels isolating. It’s a reminder that there aren’t many people in our lives from that time. We were largely confined to the hospital after moving to a new city. The only people we knew were the medical staff, but they were transitory. We rarely saw any with regularity. Instead, we repeated my son’s history to every new face we saw. But they moved on and we stayed trapped in our world scared, desperate, and alone in the dark. Every day, every week, every month.

Sometimes, when you tell a story over and over again, it can dull the pain. The repetition has a numbing effect that makes it easier to deal with. But when you’re in the middle of it, that doesn’t work. Instead, it keeps the pain and the fear fresh and present. After months of unrelenting confrontation with our new reality, I wanted it to stop. I wanted one person, just one person, who I felt knew us, knew my son and could understand.

After a long string of random faces, my wish was finally answered. One neurologist started coming back through on rotation. Instead of repeating our son’s entire history each time, we could give her updates. She provided consistency and stability through our endlessly repeating days. I began to feel like I was talking to someone who understood what we were up against. Someone who knew how bad things were. She cared about us. Without those connections, it’s hard to imagine anyone fighting as hard as we were to not go back to that place. But she did. And for the last three years, we’ve had her at our side every step of the way.

Until now.

The woman who in many ways saved my son is leaving. I’m trying to be stoic. I’m trying to be grateful for everything she did for us. I’m trying to be happy for her as she pursues more of a focus on epilepsy because of her experience with my son. I’m trying to think about the many more children she is going to be able to help. But I mostly feel afraid. Afraid to take these next steps without her. Afraid that no one is going to get us or my son like she did. Afraid that no one is going to fight as hard as she did because of how connected she was to our story. When there aren’t many people that can relate to what you are going through, the loss of one is significant.

We’re at one of the best children’s hospitals in the country. Our new neurologist is one of the best in that hospital. But she didn’t see my son at his worst and I’m struggling with whether that matters. Whether she’ll fight as hard as she would if she had seen him back when this all started. Whether she will be personally invested in his outcome. Because I need that. I need his caregivers to have that connection to him. I need them to know and call him by his nickname. I need them to know how important he is. I need them to know who he is. He’s not just a patient, he’s my son.

The thought of having to start over is stirring memories from when this all began. I’m afraid of having to start retelling my son’s story and reliving those dark and fearful days. But I’m also going to miss that light that lifted us from the darkness. I’m going to miss having her at our side.

We tell our son to be brave. To be grateful. To try to find the positive. And I am trying, but right now I just feel scared, and alone, and sad.

Heroes

It was the second game of the baseball finals. My son’s team won the first game and another win would secure them the championship. But the good guys found themselves trailing late in game two. With only an inning to play, the top of the batting order came around. If a rally was going to happen, it needed to happen then.

And it did. A leadoff single, followed by another put runners on base. A strikeout came next laying a thick blanket of tension over the spectators. But our team kept hitting, and a base-clearing triple made the game closer. Another few hits, they had rallied to take a one-run lead. With two outs, the bases were still loaded, and my son stepped up to the plate.

It’s impossible to describe the feelings I had watching him knock the dirt off his cleats with his bat. Being down so late in the game, I had already resigned to a loss. The excitement of coming from behind already had my heart racing. With my son at bat, my heart felt like it was trying to escape from my body.

I watched my son as he stood in the batter’s box and took the first pitch. There are no called strikes off the pitching machine, so he watches the first pitch to get the timing. He looked up at me and gave me a thumbs up.

The next pitch came in. My son took a big cut and fouled the ball back to the backstop. He did the same with the following pitch, so he stood in the box with two strikes, two outs, and the bases loaded.

My heart went from thunderous pounding to absolute silence. I stopped breathing. This is one of those scenarios that I replayed over and over as a kid. Now, my son was living it. The chance to put the game out of reach for good. The chance to be a hero.

I wanted him to get that big hit that I imaged myself getting when I was his age. I wanted him to be hero. I wanted for him to hear everyone cheering his name. I wanted him to come back into the dugout and have his teammates tap him on the helmet in celebration.

I thought about how hard this kid had to work just to be on the field. How he had two seizures earlier that morning. How he put up with the ketogenic diet every day. How he takes a handful of pills every morning and night. How much these games take out of him. How much he gives of himself in these games to contribute, even if that means that is all he can do that day.

I wanted the universe to balance things out.

My son stood in that batter’s box and got himself ready for the next pitch. He went through his setup routine and eyed the pitching machine. With a three-count from the coach, the ball left the machine. I held my breath and watched my son take a big swing over the top of the ball.

The mighty Casey had struck out.

My heart sank as my son walked back to the dugout. I didn’t know what to say to him. I wasn’t sure how he was going to react, so I waited for him to say the first word.

He looked at me and said “I hope I get to hit again. Next time, I’ll get a hit.”

He walked past me and his coaches and teammates tapped him on the helmet and said “nice try”, and “good job”, and “nice swing”. Then the team, my son included, took the field with smiles as they looked to protect their lead.

I walked over to talk to my wife. We both wanted him to get that hit. We felt like the universe hadn’t given us what we needed for things to feel fair. But after I told her what he said, we both fought back tears.

It wasn’t about being the hero or winning a championship. It was about being on the field. It was about being a part of a team. It was about doing the best he could. It was about getting hits and striking out. I had gotten so wrapped up in wanting him to feel like a hero that I almost forgot to be grateful that he was there at all.

There will be plenty of opportunities for him to be a hero on the field. But every day, he teaches me lessons about what is important. He lives fearlessly in spite of his challenges. He lives generously even when things are taken from him. He lives every day pushing through failure and willing to try again. He lives his life with a smile.

For that, he’s my hero every day.

Trends In Wearables For Seizure Detection And Prediction

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today kicks off week 3 of the Epilepsy Blog Relay when the theme changes to Tech and Innovation in Epilepsy. As a technologist and father of a child with epilepsy, this week represents the intersection of my two worlds. I am excited to be writing this week because of the promise of technology in managing epilepsy.

The Story So Far…

More than a year ago, I found a crowdfunding campaign for a wearable device that could detect seizures. At the time, we were struggling with detecting and recording my son’s seizures. It was difficult because he had many types of seizures and we knew from EEGs that we weren’t catching every one. The seizure devices already on the market didn’t work for him. Most used accelerometers and gyroscopes to capture exaggerated arm movements or falls. But his seizures often only created subtle body movements that were not detected. This new device included other seizure markers, such as galvanic skin response. I hoped the new sensors would make the difference. Since the device showed promise, I backed it and then anxiously awaited its release.

After a long delay, the device finally shipped. When we received it, I strapped it to my son’s wrist and hoped. The next night, my son had his usual handful of seizures but the device didn’t detect any of them. Initially, I thought I had configured the device wrong or that it lost connectivity to my phone. But after a few weeks of seizures with no detection, we stopped wearing the device and put it on the shelf.

Our story is one of many similar stories of unrealized expectations. But this post is not one of failure and despair but one of hope. While the device didn’t work for us, it does work for some people. Moreover, better methods of seizure detection continue to be developed. These techniques are being included in the growing number of wearable devices on the market. Soon, we’ll have clothing and accessories capturing biometric markers that will be able to detect seizures more reliably. We’ll have data captured that we’ll be able to use to predict when a seizure will occur. And this will happen in the very near future.

Devices, Data, and Machine Learning

There are three components necessary to create a device capable of detecting and predicting seizures: devices, data, and machine learning.

Devices

The devices represent the things that are collecting data. Today, we have wearables like watches and clothing that have sensors in them. These sensors measure some attribute such as heart rate, steps, or stress level. The trend towards smaller, cheaper, and more energy-efficient sensors will continue. New sensors to measure new markers will be created. Manufacturers will be putting sensors in nearly everything they create. The result will be a wealth of information streaming from us at all times.

Data

With the proliferation of sensors, the result will be a tsunami of data. Every measurement and data point we can collect will be available in near-real time. We’ll have access to data that required equipment at a hospital to measure. We’ll also be able to correlate that data with information from the world around us. The outside temperature, what our thermostat is set to, what we ate, how much television we watched. The more things we connect and make available, the larger the pool of data we will have with which to swim in and find answers.

Machine Learning

The component that I am most excited about is machine learning. Now that we have all of this data, what do we do with it? It’s too much data coming in too fast for a human to make sense out of. So we use machine learning to try to make sense out of it for us. We can train a system using real data so that, over time, it can use what it learned to predict better than a human can. It can find patterns in data that are invisible to us and make connections that we can’t. It can figure out when the data is aligning in a way that previously resulted in a seizure and notify us. It can help adjust our behavior in a way that reduces our risk of a seizure. And it will never stop learning and will continue to make more accurate predictions.

As depicted in the image about, machine learning isn’t the final stop. Instead, we will use the algorithms we develop to feed back into the devices. We’ll create new sensors to fill in our gaps in data. We’ll push the intelligence further down to the device to allow it to make smarter decisions closer to the person wearing it. The updates to the devices will result in more data, or better, more refined and reliable data. That, in turn, will make our predictions better. The cycle will continue to a point where many devices will be able to detect and predict seizures. It won’t be the job of one specialized device but, instead, a collaboration of things we wear everyday.

Challenges

There are challenges ahead. Securing the data and privacy are two top concerns. Battery life and powering the devices and sensors follow closely behind. These are huge problems and concerns. But just as there are trends impacting the components above, these challenges are not unique to wearables. Advancements in encryption and identify management will make their way into wearables. New battery and wireless charging technologies will keep our devices powered longer and without us thinking about it. A rising tide lifts all boats, and wearables will benefit from much of the same innovations as other technologies.

Conclusion

Even though our current experience with wearable devices to predict seizures has been disappointing, I am still optimistic. The trends in devices, data, and machine learning will continue to result in more reliable detection and prediction of seizures. In the near future, we’ll have these capabilities in everyday wearables, not just in specialized devices. The result will be a dramatic increase in peace of mind and in overall quality of life.

NEXT UP: Be sure to check out the next post tomorrow by Leila Zorzie at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.