Aiden’s Embrace story - A teenager with epilepsy can still be a normal kid
Empatica
Mar 12, 2019• 5 min read
Aiden is a teenage boy living with autism, but no one knew that when he appeared to be spacing out, he was actually suffering from silent, difficult to recognize, seizures.
According to the National Institute of Neurologic Disorders and Stroke, people with autism have a higher than average risk of having epilepsy. In addition, The Epilepsy Foundation reports that “seizures are the most common neurological complications in autism.”
In this Embrace Stories edition, Shanna tells of her son Aiden, who was diagnosed with autism and started having seizures a few years later. Initially, they didn’t know he was having seizures- they assumed it was his autism that made him space out. However, after consulting his neurologist, it was discovered that those staring spells were actually seizures. A few years later, they found him unconscious on the floor after a seizure and decided to get him an Embrace watch. It has helped monitor his seizures, and has also provided important information for his neurologist. She can now leave him alone in his room without having to keep him under constant supervision.
His Story
Aiden is a 14-year-old that loves Boy Scouts and choir. He is a young wovian through and through, and enjoys video games and YouTube.
In 3rd grade, he was diagnosed with autism. In 8th grade, he had his first seizure. One day, as he was getting ready for school, he collapsed and started convulsing. We made a trip to the ER and the doctor immediately referred us to a neurologist. I didn't know at the time, but autism and epilepsy go hand in hand 20% of the time.
Two days later, I explained to a neurologist that he frequently would look like he was spacing out, but we thought it was his autism. Turns out, it had always been seizures.
He had 3 convulsive seizures that year, then, starting January of this year, he started having them once a month. At the start of his freshman year, he had 7 seizures in a day. He was hospitalized for 3 days while we tried to get him back on track.
We found him unconscious on the floor after a seizure, and then decided to buy him an Embrace.
After his hospital stay, of which he has no memory, he started having seizures once per week. One morning, I found him unconscious on the floor. That's when we bought him an Embrace watch.
Not one week after he put it on, he had 3 seizures in one day. From the 2nd seizure on, I was able to contact his neurologist with all of the important information. I was able to leave him in his room, where he was safe and comfortable, instead of the normal “after seizure routine” of me having to hover around him. It has given him peace of mind that if he has a seizure, we will immediately know and get to him.
The doctors and nurses were amazed after seeing the Embrace at work.
A few months later, Embrace came to the rescue again! He had a cluster of 4 seizures and we ended up in the ER. The ambulance took him and as I walked in the door and got all of the initial intake out of the way, the doctors and nurses were asking why his watch was blinking.
That started a 15 minute training session on the Embrace watch, how it works, and how it helps. They were all eagerly watching as I pulled up my texts to tell them the exact times of his seizures for the day.
Then came the big question, "how much was it?" They were all surprised at how affordable the Embrace was and commented on how it's totally worth it. I rave about this device to all of my epilepsy support groups.
"This just adds a layer to me and I'll continue to do the things I love.”
In spite of all of this, he hasn't slowed down. He has maintained his grades despite missing 1 day a week, and he has a positive attitude. To quote him, "I deal with it. It's not bad, it's not good, it's me. I'm used to being different and not being 'normal'. This just adds a layer to me and I'll continue to do the things I love."
With Embrace, I feel more comfortable letting him do just that. He wants to be a normal kid doing normal teenager stuff. But I couldn't allow him that out of fear. Now I can, thanks to Embrace.
For anyone with convulsive seizures, I highly recommend this for you.
Words worth reading
More Embrace Stories will be published soon! To share yours, feel free to write to us at support@empatica.com or post your story on Facebook or Instagram by tagging our page (respectively @Empatica on FB, @empatica_wearables on IG) or the hashtag #EmbraceWatch.
Embrace is a prescription-only medical device indicated as adjunct to seizure monitoring (subjects age 6 and up with epilepsy or at risk of epilepsy) in home or healthcare facilities during rest. Embrace detects patterns that may be associated with generalized tonic clonic seizures. For safety information, please refer to Embrace IFU.
Helpful resources: Autism and Sleep
We do not guarantee that EpiMonitor will detect every single seizure and deliver alerts accordingly. It is not meant to substitute your current seizure monitoring practices, but rather to serve as a supplement in expediting first-response time.