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.
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.