Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy
1 IN 26 AMERICANS DEVELOP EPILEPSY
DEVICES & TECHNOLOGY
While no device has been proven to prevent epilepsy-related mortality (including SUDEP), Living Autism is devoted to seeking out seizure detection and seizure prediction devices - as well as other technologies - that are designed to enable intervention by a caregiver. Intervention is believed to reduce the risks that accompany epilepsy. We list the resources below for further review and investigation by anyone connected to seizure disorders.
Living Autism cautions that not all devices listed on this page are approved by the United States Food and Drug Administration. Unless noted, these resources are consumer products and not medical devices. Further, the Living Autism encourages and strongly recommends your communication with the manufacturers of these products, as well as consultation with doctors, to determine the possible efficacy of such devices for your situation.
Please note, Living Autism does not warrant these products and is not a manufacturer, distributor, seller, representative, or broker of the products shown on this website. Living Autism offers only cursory and introductory information about the potential of these devices and does not accept responsibility for the consequences of the actual use of any device listed on this website.
SELECTING A SYSTEM, QUESTIONS TO ASK
Be sure to review these key factors when considering which system is a fit for child users, and these factors when considering for adult users. We also recommend this article from Epilepsia for a big picture overview of devices in the epilepsy space.
For a webinar in Spanish that provides a similar overview, click here.
For educational content from our "Dissecting Devices" webinar series that is specific to individual products, see the links within the product descriptions below.
NON-INVASIVE ALERTING SYSTEMS
Emfit Movement Monitor & Emfit QS
Emfit makes two products that may be of interest to people with epilepsy. One is a non-invasive detection device that monitors for movement activity during sleep. It is used and marketed in Europe as an Epilepsy Seizure Alarm. Emfit also makes a second product called the Emfit QS, which track multiple variables during sleep. Learn more about Emfit here.
The SmartWatch Inspyre™ by Smart Monitor is designed to be used on an Samsung or Apple Watch to detect repetitive shaking motion. When the Inspyre detects abnormal motion, it sends a signal to the app running on the user’s device (iPhone or Android phone) to send text and phone call alerts to whomever the SmartWatch Inspyre™ user designates, such as multiple family members and care providers. When that occurs, family members receive these alerts which include the date, time, location, and duration of the event. SmartWatch Inspyre™ users can also summon help with the push of a button. Alerts can be sent to any phone, anywhere, and reports of each event can be accessed for later review with physicians. To use the system, you must have or purchase specific hardware (an Apple or Android watch). Other costs include payment of a monthly subscription fee. Visit the SmartWatch Inspyre website here to learn more.
Embrace Watch by Empatica
Embrace2 is a product is made by Empatica. It is a wristwatch worn device that is designed to detect and alert for tonic-clonic (convulsive) seizures after 20 seconds, and to monitor physical activity and rest. Embrace2 transmits data to a paired smartphone via a Bluetooth connection, and has the ability to alert others via a text message and phone call when certain seizure types occur. The system requires the person wearing the watch to have a compatible smartphone, which they must keep within approximately 25 feet.
The costs for this system include a one-time purchase of the watch, as well as payment of a monthly subscription fee. Embrace2 received FDA approval in 2018 for its ability to alert to convulsive seizures. If you are applying for funding for a child user, please note that the child must have their own smartphone with them at all times, and the caregiver must have their own phone to receive the alert. A short overview video is here. To learn more about this product, visit the company website here.
SAMI – The Sleep Activity Monitor
SAMi is a sleep activity monitor for caregivers and individuals who need to watch for abnormal movements at night. During sleep, audio-video information from a remote infrared video camera is sent to an app running on an iOS device such as an iPhone or iPod Touch. The SAMi app records and analyzes the video for unusual activity. When an unusual event is detected, an alarm is sounded, followed by live sound and video from the SAMi network camera. A parent/caregiver can then take any necessary action. Click here to visit the SAMi-Alert website. To watch a video demo of the SAMi system, click here.
The Miku Smart Monitor offers parents and caregivers real-time, contact-free respiratory monitoring. Miku’s technology combines multiple sensor modalities and artificial intelligence to see breathing in different light conditions, under clothing, and in any body position. Using the Miku app (compatible with iOS or Android), caregivers can customize, real-time alerts for movement, breathing, sound, and awake/asleep notifications. Caregivers can also view, save, and share HD video and audio, play MikuMusic sleep sounds and lullabies, and communicate via two-way talk. Miku’s technology has been tested in a clinical study where it was compared against worn, medical grade equipment. Click to visit the Miku website, watch a video of Miku in action, or read the white paper on Miku’s technology.
Portable Pulse Oximeter
Portable pulse oximeters are non-invasive medical devices that typically attach to a fingertip or a toe to measure heart rate and blood oxygenation percentage —both vital statistics that are affected while a person is seizing. These devices are not explicitly designed or manufactured to detect seizures, but pulse oximeters do have applicable monitoring and alarm-sounding functions that can be useful to some who experience seizures. One company that makes this product is Masimo. Please contact the manufacturer and your doctor to determine if a portable pulse oximeter fits into your sleep-time seizure-detection plan and whether access for this device (or others like it) can be enabled to individual patients for home use. Learn more information on the Masimo Rad-97 pulse oximeter HERE. The customer support phone number for Masimo is (800) 326-4890. Be sure to ask for the "home care sales representative" that covers your zip code. That rep will work to connect you with the nearest Durable Medical Equipment (DME) provider (or "home care provider") that sells this product in your area. Note, Masimo does not sell this product direct to consumers, the transaction must route through a home care provider.
SeizAlarm / Mobile App
SeizAlarm is an iPhone and Apple Watch app designed to monitor to seizure-like motion and/or changes in heart rate. Emergency contacts set up within the app will be automatically alerted if certain perimeters have been triggered. In addition to the detection, this platform also features help request buttons. One of these help request buttons has a time delay, which may be helpful for individuals with auras that may or may not result in a tonic-clonic seizure. SeizAlarm can also be used with the iPhone alone if you do not own an Apple Watch, but only motion based detection would be available in that scenario. When help requests are sent to caregivers, they will receive a phone call, text message and email, or any combination of those. Text messages and emails include the GPS location of the individual. The subscription cost to enable the detection and alerting features is $14.99 per month, or $149.99 per year. To learn more or to download the app, visit the product website at http://seizalarm.com.
CAPTUREPROOF / Mobile App
CAPTUREPROOF is a visual health record that allows patients and healthcare providers to securely share photos and videos as part of their medical communication and collaboration. After downloading this free app, you can send videos or photos of seizure activity with your doctor at any time, offering the potential for faster diagnosis and treatment. Caretakers can also use this app simply to keep their own visual seizure diary. The app also saves all visual records so that it is possible to track the progression of seizure activity over time. To learn more about CAPTUREPROOF, visit their website HERE, or call (415) 770-2020 to have someone walk you through how to set up your account.
Seizure Tracker / Website and Mobile App
Created by parents who have a son with epilepsy, Seizure Tracker is designed to provide patients, doctors and researchers with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic medications. Patients can create personalized reports of logged seizure activity and medication history that can be shared with their medical team. The mobile app version of this system allows users to record seizure activity as it happens with the Seizure Tracker. Having a seizure recorder handy can improve the accuracy of the data you collect and help to inform better treatment decisions. Note, this system is not designed to alert to seizure activity, but only to improve tracking. Learn more at SeizureTracker.com.
IMPLANTED, SURGICAL TECHNOLOGIES
VNS Therapy / LivaNova
Vagus nerve stimulation (VNS) is a technique used to treat epilepsy that involves implanting a pacemaker-like device into the chest that generates pulses of electricity to stimulate the vagus nerve. The VNS Therapy System is an FDA-approved medical device specifically developed for the treatment of drug-resistant (medically refractory) epilepsy. The vagus nerve is one of the 12 cranial nerves, which conduct impulses between the brain and other parts of the brain and various body structures, mostly in the head and neck. VNS is not a cure, and the total elimination of seizures is rare. However, some people who undergo VNS experience a significant reduction in the frequency of seizures, as well as a decrease in seizure severity. In 2015, a version of the VNS called the AspireSR generator was cleared for FDA-approval. The AspireSR is different from conventional VNS treatment in that it features responsive stimulation to heart-rate increases. A smaller and more advanced version of VNS called SenTiva became available in 2017. The VNS system now has FDA-approval for use in patients as young as 4 years old. To learn when to consider VNS and to gain additional background, talk with your doctor and visit the LivaNova website HERE.
NeuroPace RNS (Responsive Neural Stimulation) System
The RNS System involves the surgical implanting of a matchbook-size device that is attached to the surface of the brain. It focuses on a closed-loop approach to interrupting and preventing seizure activity. The RNS is programmed to continuously monitor brain wave activity, to sense the onset of a seizure within a neural network, and to deliver seizure-stopping electrical stimulation once seizure activity is detected. In late 2013, NeuroPace received FDA-approval to market the RNS System as a treatment for medically refractory (uncontrolled) epilepsy in adults. It has been evaluated in three clinical trials. Learn more about the NeuroPace RNS system.
Visualase Laser Surgery / Medtronic
Visualase is minimally invasive MRI-guided laser surgery technique for people whose seizures are not controlled by medication that is now being used at a select number of medical centers around the country. Rather than standard open brain surgery, a laser fiber is inserted into the skull to precisely target areas of the brain causing seizures. Light energy from the laser heats the brain tissue, effectively destroying it. Upon removal of the laser applicator, only one stitch is needed to close the wound. The technology usually requires only an overnight hospital stay. To learn more about this new technology and whether it could be an option for your loved one, talk to your doctor. For more background and to see locations where this surgery is performed, visit http://www.visualaseinc.com/location-sites.
NON-TECH SAFETY RESOURCES
MiTable Topper Place Mat
The MiTable Topper Place Mat is made of thick and easy-to -clean foam construction. The soft foam protects heads and hands from making contact with the hard table surface. The foam is vinyl-coated and is easily cleaned with warm soapy water. This place mat is 19 inches wide by 15 inches tall. It is suitable for round edge tables, and its recessed surface design also minimizes cleanup when a spill occurs. Note: this product is made-to-order, and takes 5-7 days to manufacture once it is ordered. To learn more or to buy this product online ($56 each), visit the Danmar Products website here. The company phone number is 800-783-1998. This company also makes safety helmets.
Sleep-Safe ® Anti-Suffocation Pillow
Developed by a pharmacist whose son is prone to seizures while sleeping, the Sleep-Safe ® Anti-Suffocation Pillow is a registered Class I Medical device as categorized by the United Kingdom’s Medical and Healthcare Products Regulation Agency, which is the UK government agency responsible for ensuring that medicines and medical devices work and are acceptably safe. Learn more about the Sleep-Safe ® Anti-Suffocation Pillow and place orders here.
Drop Support Harness
Drop Support is a fall support harness for families and caregivers of individuals with epilepsy. This product is designed to manage and control falls to reduce the risk of injuries. The harness allows the user to walk unrestricted, but to still have fall support when assisted by the support handle. The support handle allows for a higher grab to reduce back strain. Drop Support is available in a variety of children's and adult sizes, with selection based on the user's size and weight. The cost ranges from $99-$129. This device can be used both inside and outside the home. To visit the product website for more product details, plus user reviews, click here.
Seizure response dogs are a special type of service dog specifically trained to help someone who has epilepsy or a seizure disorder. Tasks for seizure dogs may include: summoning help by finding another person or activating a medical alert; pulling potentially dangerous objects away from a person’s body; “blocking” to keep individuals from walking into obstacles that can result in bodily injury or death; attempting to arouse an unconscious handler during or after a seizure; and carrying emergency medication and information regarding the handler’s medical condition. Further, some dogs may develop the ability to sense an impending seizure. There are several companies that train seizure response dogs for adoption. Options to research include Domesti-PUPS and 4 Paws For Ability Seizure Dogs. For additional information or to inquire about funding support for seizure dogs, visit the Chelsea Hutchison Foundation.
Neurotech EEG provides in-home EEG testing and monitoring services. Neurotech reps interact with your doctor to set up the appointment, check on your insurance coverage, send a technician to conduct the in-home testing and monitoring, and send the results to your doctor. This is an alternative to EEG testing that is conducted in a hospital or clinic. To learn more, visit www.neurotecheeg.com