How an iPhone Helped Us Stop Our Son’s Seizures: A Game-Changing Journey
For 30 years, we’ve been living through an emotional rollercoaster, navigating the challenges of autism, seizures, and the constant search for a solution. Our son, now 33, has been living with profound autism and complex partial seizures with secondary generalization. Despite all the treatments, medications, and therapies, nothing seemed to give us lasting relief. Seizures continued to disrupt his life, leaving us feeling helpless, exhausted, and desperate for a breakthrough.
Then, something unexpected happened. A simple iPhone, a touch of desperation, and a small act of hope changed everything. This is our story of how something as ordinary as an iPhone helped us stop our son’s seizures—and gave us back a sense of control.
The Long Road of Seizure Management
It all began when our son was just three years old. Seizures struck without warning, and for decades, we tried every possible solution: medications, restrictive low-carb diets, and even surgery. Yet, his seizures persisted, sometimes lasting up to an hour or more. On average, we’d deal with a seizure once a month, often requiring emergency intervention.
His seizures weren’t like the ones you hear about in textbooks—they didn’t stop quickly, and they came with complications that made things even harder. Being nonverbal and having profound autism meant he couldn’t communicate or understand what was happening to him, and that made seizure management even more challenging. Despite being on a cocktail of four seizure medications, including Vimpat and Epidiolex, the seizures continued to take a toll.
We explored all possibilities. Surgical options like the vagus nerve stimulator (VNS) seemed promising, but given our son’s profound autism, the risks outweighed the benefits. We needed something more, but what?
A Chance Discovery
Then, about six months ago, in the middle of one of his seizures, my wife did something we never would have expected: she grabbed her iPhone, opened his favorite music playlist, and waved the phone in front of his face. This wasn’t a medical strategy. It was just a desperate attempt to comfort him.
We had no idea what would happen next. Typically, during a seizure, our son’s eyes are unfocused, his pupils dilated, and he’s completely unresponsive. But this time, something incredible occurred. Within 30 seconds, his eyes started tracking the phone, and within a few minutes, the seizure stopped.
At first, we thought it was a fluke. But we tried it again the next time a seizure occurred—and it worked again. And again. Every time. Six to eight instances later, we couldn’t ignore the pattern. The iPhone, paired with music and visual stimulation, was interrupting his seizures.
What Seems to Be Happening
While we’re not experts, we’ve observed a few things that seem to be key in this breakthrough:
- Music Is Key: It doesn’t matter what type of music we play, as long as there’s some auditory stimulation. The music seems to be enough to engage his brain and distract it from the seizure’s electrical activity.
- Visual Stimulation Helps: Waving the phone in front of his eyes creates a visual focus, helping him track movement, which seems to have a calming effect.
- Disrupting the Seizure Pattern: We think the combination of sensory inputs—both auditory and visual—might be enough to override the abnormal brain activity that causes the seizure. It doesn’t stop the seizure immediately, but it significantly shortens its duration and prevents it from escalating.
We’re still not entirely sure why this works for our son, but we know it has made a world of difference
The Impact on Our Lives
Before this discovery, seizures could last 30 minutes or longer, leaving our son in a fog for hours or even days. We’d often have to rush to the hospital, carrying oxygen tanks just in case. But now, the seizures are shorter, lasting five minutes or less. We no longer have to worry about emergency trips to the hospital.
The change has been nothing short of transformative. Our son has more energy and is more engaged with the world around him. As a family, we finally feel like we have some control over his condition.
Why This Matters
For us, this breakthrough isn’t just a small improvement—it’s a life-altering change. The toll of managing our son’s seizures for so long was immense. The worry, the stress, and the heartbreak of watching him suffer were constant. Finding something that consistently shortens the seizures has been a game-changer.
We’ve learned that even the smallest victory is worth celebrating when you’re dealing with something as unpredictable and difficult as seizures. For families like ours, every second of relief is precious.
What We’ve Learned
This experience has taught us a few important lessons:
- Never Stop Experimenting: Innovation often comes in unexpected ways. We were willing to try something unconventional in a moment of crisis, and it worked.
- Tailored Solutions Matter: What works for one person might not work for another, and that’s okay. Every person’s journey is different, and persistence is key to finding what helps.
Share What Works: Since discovering this method, we’ve been eager to hear from other families. If this works for just one more person, it will be worth sharing.
A Note of Caution
While this method has worked wonders for our son, we want to emphasize that it may not be effective for everyone. Seizures are complex, and what helps one person might not help another. Always consult your medical team before trying something new, and never replace prescribed treatments or emergency interventions with untested methods.
Our Hope for Others
If you’re reading this and struggling with seizures, we hope our story gives you a spark of hope. This method might not be the solution for everyone, but it’s a reminder that sometimes the most unexpected breakthroughs come from thinking outside the box.
We hope you’ll share your own experiences with us. Whether this method works for you or not, your feedback is important. Together, we can continue to explore new ways to improve the lives of those living with seizures.
Looking Ahead
As we continue this journey, we feel more empowered than ever. The future still holds its challenges, but with this newfound tool, we have a renewed sense of control. We’ll keep exploring new solutions, and we’ll keep sharing what we learn along the way.
Life with profound autism and seizures isn’t easy, but moments like this remind us that even in the darkest times, hope can lead to extraordinary outcomes.
Final Thoughts
Managing seizures with profound autism has been a long, difficult road. But the discovery of using an iPhone to stop our son’s seizures has been life-changing. It’s not a miracle, but it’s a step toward a better quality of life. We encourage you to keep seeking solutions—no matter how unconventional they may seem—because sometimes, the answer is right in your pocket.
This video is about how we’ve been able to use our iPhone or iPad to stop our son’s seizures.
He’s 33 years old. He is autistic on the low end of the spectrum. He suffers from complex partial with secondary generalization seizures. And this has been going on for 30 years. So we’ve been going crazy, right? Anything that’s going to help address this problem is just a huge win.
Now, he’s on a restricted diet, a low carb diet. He’s on four kinds of meds. He takes 450 mg of Vimpat a day, 200 mg of Briviact a day, 800 mg of Aptiom a day, and to top it off, 600 mg of Topiramate a day.
And with all that medication, on the low carb diet, he’s still having seizures about once a month, which resulted in hospital trips, ambulance trips to the ER. His brain is always scrambled. Some of his seizures last 30 minutes, 45 minutes, an hour—with all kinds of medical concerns around the seizure that long.
The best thing we could come up with, after talking to a lot of neurologists, was what’s called a Vagus nerve stimulator, where you put a pacemaker-like device in your chest through a surgical procedure. Then when he has seizures, you wave a magnet over this thing, and hopefully it will end a seizure. But it’s not effective all the time, and it’s not effective for all the patients. And plus, our son is low-functioning. He would not understand what was going on, and he’d be constantly scratching at that thing, trying to get it out after the surgery. And we just felt like that was not a good solution.
So about six months or so ago, he had a seizure. And my wife decided to play his favorite music on an iPhone. So she got the iPhone out. She waved it in front of his face, playing his music.
And normally his eyes don’t track at all. Right? Normally when your kiddo’s in this seizure, there’s this blank stare. The pupils are dilated. They’re not tracking anything. And that’s one of the ways you know that they’re in the seizure, besides the fact that they’re drooling and all this other stuff. Well, lo and behold, after about 30 seconds, his eyes started tracking.
Within a couple of minutes, he was out of the seizure. We didn’t know if this was a fluke, so we’ve tried it every time since then—six to eight times, at least. Every single time he’s come out of the seizure!
We don’t think it makes any difference what music you’re playing. And we’re not sure it makes any difference what’s on the video screen. What seems to work, at least for our son, is that he’s listening to music, and there’s some visual stimulation, right? There’s something being waved in front of his eyes and his pupils almost automatically then start tracking. And then maybe the sound disrupts the electrical signals the seizures created in his brain.
Can Music Help People With Epilepsy?
https://www.apa.org/news/press/releases/2015/08/music-epilepsy
Who knows, right? We’re not medical experts. We don’t view this as medical advice in any way, but it has made a huge difference in our lives. It is a game changer. We don’t have to carry oxygen with us anymore. The seizures are now 5 minutes versus 30 minutes or 45 minutes.
So we hope this works for you. If it does, please let us know! And if it doesn’t, please let us know. We’d just like to know if this turns out to be something of assistance to anybody.
