How an iPhone Helped Us Stop Our Son’s Autism and Seizures: A Game-Changing Journey
For 30 years, we’ve been on a wild ride dealing with autism and seizures, always searching for something – anything – that might help. Our son is 33 now, and he has severe autism along with complex partial seizures that can spread to his whole body. We tried everything the doctors suggested – different medications, special diets, you name it. But the seizures kept coming, and honestly, we were running out of hope.
Then something happened that changed everything. And it involved something as simple as an iPhone. I know it sounds weird, but let me tell you our story.
Living with Seizures
The seizures started when he was three. If you’ve never seen someone have a seizure, it’s terrifying. They would come out of nowhere, and sometimes last an hour or more. Usually, we’d have to deal with one every month, and often we’d end up in the ER.
These weren’t your typical seizures either. Since our son can’t talk and has severe autism, he couldn’t tell us what was happening or understand what was going on. Even with four different seizure medications (including Vimpat and Epidiolex), they just kept coming.
We looked into surgery too – something called a vagus nerve stimulator (VNS). But with his autism, the doctors thought it was too risky. We felt stuck.
The Day Everything Changed
About six months ago, something crazy happened. During one of his seizures, my wife grabbed her iPhone, pulled up his favorite music, and waved it in front of his face. She wasn’t thinking it would help – she just wanted to comfort him somehow.
What happened next blew our minds.
Usually during his seizures, his eyes are glazed over and he’s completely out of it. But this time, within 30 seconds, his eyes started following the phone. A few minutes later, the seizure stopped.
At first, we thought it was just luck. But we tried it again the next time. And it worked. Again. And again. After it worked 6 or 8 times, we knew we were onto something. The combo of music and moving the phone around was somehow stopping his seizures.
What We Think Is Going On
We’re not doctors, but here’s what seems to help:
- The music itself – doesn’t matter what kind, just having sound seems to help
- Moving the phone around for him to track with his eyes
- Doing both at the same time seems to interrupt whatever’s happening in his brain during the seizure
It doesn’t stop things instantly, but it makes the seizures way shorter and keeps them from getting worse.
How This Changed Our Lives
Before we figured this out, his seizures could go on for half an hour or longer. He’d be out of it for hours afterward, sometimes days. We always had oxygen tanks ready and were ready to rush to the hospital at any moment.
Now? The seizures last five minutes tops. No more emergency room visits. He has more energy and seems more present. For the first time in forever, we feel like we have some control over this thing.
The Big Picture
Finding this out wasn’t just a small win for us – it changed our whole lives. After years of watching him suffer through these seizures, feeling helpless and scared, we finally had something that worked. Every minute we can cut off a seizure is huge.
What We’ve Learned
This whole experience taught us a few things:
- Don’t be afraid to try something new – sometimes the weirdest ideas work
- What helps one person might not help another – you have to find what works for your situation
- Talk about what works – maybe it’ll help someone else
Important Note
I need to be clear about something: this works for our son, but it might not work for everyone. Seizures are complicated, and everyone’s different. Always talk to your doctors before trying something new, and don’t stop your regular treatments without talking to them first.
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.
Moving Forward
If you’re dealing with seizures too, I hope our story gives you some hope. Maybe this exact thing won’t work for you, but maybe it’ll inspire you to think differently about solutions.
We’d love to hear your stories too. What’s worked for you? What hasn’t? Even if this method isn’t right for you, sharing our experiences helps everyone learn.
Living with severe autism and seizures isn’t easy. But finding this simple trick with the iPhone reminded us that sometimes help comes from the most unexpected places.
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.
Follow us on YouTube: @autismlabs
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.
