Executive (Dys)function

We’re probably those parents who have relied too much on technology while raising our son. Between the hospital stays, appointments, and sick days, we have spent a lot of time waiting. There have also been days where our son was too mentally or physically tired to do anything else, so we’d hand him one of our phones. Eventually, my wife and I also got bored sitting around with nothing to do. We also struggled with the reality and stresses of our complicated life and equally needed a way to escape, so we bought our son an iPad so we could disappear into our phones.

In the beginning, leaning on technology served a purpose. It was a portable distraction that helped pass the time. By the time our son had fewer appointments and more good days, the habit of reaching for a device was automatic.

The pandemic didn’t help. We played a lot of UNO and other board games, drawing, and finding ways to interact, but it felt like a lot of hours to fill, so we fell into our default of electronics.

I’d often look up from my phone and see both my son and my wife firmly fixated on their devices. We were alone, together.

As he got older, we would occasionally review his device usage to ensure he wasn’t doing anything inappropriate, but we didn’t use the parental controls or other settings to limit his access or screen time. Any time we would try, largely driven a realization that he was addicted to his devices, he would get sick or we’d find a reason why he needed his device, so we would remove the limits.

When our son started puberty, we began to notice our son being more secretive about his device usage. When we investigated, we found that he was looking at inappropriate sites. As we looked into it, between his ADHD and issues with executive functioning, we also saw that he was having a hard time regulating and controlling his impulses.

On more than one occasion, after we turned on parental controls, we would see a receipt for purchases he had made after disabling the “Ask to Purchase” feature. He would also bypass the content restrictions to download inappropriate apps and visit adult websites.

Each time it happened, we’d sit down with him and have a conversation about rules and consequences. But, in many ways, it was like trying to rationalize with an addict. Worse, his struggles with attention and processing and our flexibility on the enforcement of the controls only set him up to fail. A few weeks ago, I saw another receipt for $200 worth of purchases in my inbox, including charges for apps that he knew were off-limits.

This time, the conversation was different. We could see the struggle he was having to resist the urge to bypass the parental controls. It’s like when enough time passes and any previous consequences from the last incident has faded, his brain can’t make the right choice. The league of screen addiction, ADHD, and executive processing and decision making issues are simply too much to overcome.

There are a number of studies detailing the impact of electronics on children, specifically as it relates to executive functioning and decision making, including “Less screen time, and more physical activity associated with executive function“, “Mobile Technology Use and Its Association With Executive Functioning in Healthy Young Adults” and “Addictive use of digital devices in young children: Associations with delay discounting, self-control and academic performance.” Many of the studies are on healthy children without the additional complexities that our son has, which can only exacerbate the impact on his developing brain.

We tried to explain the situation to him in a way without shame by taking our responsibility for not providing more structure on his screen usage. We also let him know that these struggles are normal for children his age and that it’s our job as his parents to help him navigate this time in his life.

Executive functioning, impulse control, and decision making are like muscles. A muscle doesn’t grow bigger unless you make it work hard, and you make this muscle work hard by having consequences, both good and bad. Historically, our negative consequences haven’t been very heavy, and that muscle hasn’t been strained. This time, we swapped in a heavy weight by taking away his devices completely for a few days. It was interesting to watch his attitude and awareness during that time, as both seemed to improve.

When we gave him back his devices, we include time limits to help wean him off his dependence on them for entertainment and to pass time. Spending more time in the real world is where he can flex those muscles to help him continue to learn how to successfully live in the real world.

A Year With The VNS

Last December marked the one-year anniversary of my son’s VNS surgery.

Leading up to the surgery, I was a wreck. The week before, I had to give a preview of a presentation to one of our executives. I was not present and I stumbled through, relying heavily on the notes that I threw together on a handful of index cards. A few weeks later, my boss commented that she noticed how off I was. “You’re normally so put together. I don’t know what happened.” I did, I thought. My son was about to have surgery.

As I wrote about when we were contemplating the VNS, there is something about a surgery that is so daunting. With medications or the ketogenic diet, we can stop them if they aren’t working and the side effects eventually go away. But you can’t “uncut” my child. Once the scalpel breaks the skin, that’s it. It’s done. Even if the VNS is turned off or if the leads are removed, there is no going back. That thought weighed heavily on my mind right up to when they wheeled him back to the operating room.

Thankfully, we are near one of the best children’s hospitals in the country, and the surgery went smoothly. The device was turned on a few weeks later, and the waiting game began.

For the first six months, I didn’t expect much of anything to happen, which was great because not much of anything happened. Except for the vibration in his voice from the tingle of the VNS and the two visible scars, there was no change. We didn’t see any reduction in seizures, even as the doctors adjusted the intensity and frequency of the pulses.

At nine months, there was more of the same. His vocal cords seemed to adjust and his vibrato was less pronounced, but I could still hear it. Again, though, there was no seizure reduction.

A year after his VNS surgery, I would love to write that it took a year for the VNS to really start helping my son. I would love to write that he is seizure-free and that we were able to wean him off the ketogenic diet or remove a few pills from the handfuls of pills he takes every day. I would love to write that I sleep any better knowing that the VNS will protect my son from a catastrophic seizure and that I sleep much better at night.

But I can’t.

The obvious question is, knowing what I know now, would I have still gone through with the surgery?

The short answer is yes. The VNS helps a lot of people. At the time, we didn’t know whether it would work and I was and still am willing to try anything to reduce or prevent my son’s seizures. I’m disappointed that it didn’t do more for him, but it was worth trying.

Maybe someday it will help. Maybe it is already helping with seizures that we can’t see, or maybe it will someday prevent a really bad seizure.

Seizure Detection And Prediction

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31, 2018. Follow along and add comments to posts that inspire you!

As the parent of a child with epilepsy, I rarely sleep through the night. Instead, I periodically wake to check in on my son. We use a wireless camera that has an app that we run on an iPad that I prop up beside our bed. I can see in to his room, even at night, and hear any activity or seizures. For the most part, it’s a good setup. But occasionally a wireless issue will cause the connection to drop. I’ll wake up facing a dark screen, wondering if I missed a seizure as I fumble in the dark to restart the app.

That scenario repeats a few times a month, which is why the news that the FDA approved the Empatica Embrace as a medical device was so exciting. The Embrace is a wearable device that detects generalized tonic-clonic seizures and sends an alert to caregivers. Devices like the Embrace will provide a piece of mind to many people with seizures and those that care for them.

Unfortunately for us, we haven’t yet found a device that can reliably detect my son’s seizures. His seizures are short and without much movement, making them harder to detect. Generally, the longer a seizure is and the more activity it generates, the more likely it will be detected. But with new sensors and smarter algorithms, these devices will continue to improve. They’ll have a higher sensitivity to detect shorter and more subtle seizures. Instead of relying on my own eyes and ears to catch every seizure, I’m hopeful that these devices will work for my son someday, too.

Since the theme this week is technology and epilepsy, I thought I would spend some time talking about the magic behind these devices.

Detection versus Prediction

Detection

First, I wanted to differentiate between detection and prediction. Devices like the Embrace focus on seizure detection. Detection figures out when a seizure is happening. The device monitors activity from embedded sensors and runs it through an algorithm. The algorithm has been trained to look for patterns that look like seizure activity. Once it is confident enough that a seizure is occurring, it will send out an alert.

Prediction

Seizure prediction tries to figure out when a seizure is likely to happen. Some people have auras or other cues that let them know that a seizure is coming. Imagine a device that could provide that same warning to everyone. This is a hard but achievable goal. The clues may be more subtle and harder to see. We may need more data or new sensors, but we’re well on our way to developing them. When we figure it out, the warning it provides cold allow a person about to have a seizure to go sit down or get to a safe area. It could alert caregivers ahead of time so that they provide help before or during the seizure.

Training an Algorithm

Both seizure detection and seizure prediction use much of the same data but for different goals. The techniques used to learn the algorithm are similar, too. Data is collected from a group of people wearing different sensors. The data includes both seizure and non-seizure activity and it’s fed in to a computer with a label such as “seizure” or ”no seizure.” The computer learns the difference between the two and creates a model that can be used to look at new data to classify it as a “seizure” or ”not a seizure.” The more examples the algorithm sees, the better it gets at identifying the common traits in the data that are associated with a seizure.

The process is similar to teaching an algorithm to identify a cat. You feed the system a bunch of examples of cats and it identifies that a cat has two eyes, to ears, a nose, and whiskers. It generalizes traits using a technique called induction. Once it generalizes the traits, it can use them to identify a cat that it has never seen before using those traits. This is called deduction.

The same approach happens with seizures. People and seizures are different. If we trained a model to look for a specific heart rate, it wouldn’t be useful because that would differ for everyone. Instead, we train a model to associate common changes that happen during a seizure. Then, when it sees the data coming in from sensors in a device, it looks for those similar markers to decide how to classify the data.

No Algorithm Is Perfect

As in the cat example, there are an infinite number of combinations of data points necessary to always get it right. We can’t practically train a model by showing it every angle of every cat that might exist. And we can’t give it data reflecting every possible seizure for every person. But we don’t have to. The magic of these algorithms is that they can do a pretty good job using subsets of the data. But that does mean they can make mistakes.

There are two types of mistakes that are the most common: false positive and false negative. In the case of seizure detection, a false positive is when the algorithm said there was a seizure but there wasn’t. A false negative would be when the algorithm didn’t think there was a seizure but there was.

These two error types present different challenges. In seizure detection, a false positive means that a caregiver might have been alerted. This can be annoying, especially if it happens too much, like The Boy Who Cried Wolf. Too many false positives means people may turn off the notification feature or stop wearing the device altogether.

In seizure detection, the false negative is a much more severe problem because it means a seizure occured but the algorithm missed it. That means no notification was sent to alert a caregiver. If that is the primary purpose for the device then it can’t be relied on and won’t be used.

Making Things Better

The good news is that algorithms can learn from their mistakes and get better. We can use the times it was right and wrong to retrain the algorithm so that it can get better. That’s what Google, Facebook, and every other company that uses data does to make their products better. A popular concept in the world of machine learning and AI products is the Virtuous Circle of AI.

We create products and give them to customers. The customers use the product and generate more data. The data is used to make the product better by making the algorithms better or adding new features. This is how Alexa gets better at understanding what you’re asking for, how Google gives you better search results, and how music and movie recommendations today are many times more accurate than even a few years ago. In the same way, as more devices like the Embrace find their way on to the market and more people use them, these products will use the data to get better, too.

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

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