This review is courtesy of Wynsum Arts' Every App Has a Story, the stories behind Wynsum Arts' distinguished apps.
â€śIn the epilepsy world, quality of data drives quality of life.â€ť
-Robert Moss, creator of Seizure Tracker
Robert and Lisa Moss began tracking
their son Evanâ€™s seizures when he was one month old. But Evanâ€™s seizures were
so frequent that it was difficult to track them on the paper form theyâ€™d been
given by the neurologist. Robert Moss looked for a web-based solution. He
couldnâ€™t find anything that would help track the seizures and the medications
in order to monitor the effectiveness of different drugs and dosages. So he
created a simple web-based diary with the ability to chart Evanâ€™s progress.
â€śEvanâ€™s neurologist asked if we would
make the diary system public to help other patients,â€ť Moss says. â€śWe spent
about six months refining the system and we launched SeizureTracker.com in
2007. We actually launched the website in the waiting room while Evan -- then
four years old -- had surgery to remove three brain tumors.â€ť
Did You Develop the Seizure Tracker App?
Moss: After the surgery, Evan was seizure-free for about two
years. When the seizures returned they were less frequent but more dramatic.
Because of the change in the type of seizure, Evanâ€™s neurologist wanted video
of the seizures. We had to capture the seizure on video and time it. We had to
call 911 if a seizure lasted more than five minutes. After fumbling around with
a watch, camera and phone in the middle of the night, it occurred to me that
the iPhone could be used to video and time a seizure. The iPhone4 had just come
out with light and video, and I knew we could build a recorder app that would
integrate with our diary website. At the time, we had the ability to share
private videos on YouTube via our website but an iPhone recorder app would make
it that much easier to upload and share private videos with neurologists.
We chose Element 84, a web and mobile
development firm with impressive experience in iOS development, to help us
create the app. They helped us understand the capabilities of the iOS platform
and developed the interface. The app was released in December 2010.
Does the Seizure Tracker App Work?
Moss: The app can serve as a basic stand-alone diary,
self-contained on the phone. Physicians can use the video to determine seizure
type and prescribe the appropriate medicines.
If you sync the data from the app with
the website, you can access the graphing feature and track additional
information, including diet, ketone levels, menstrual cycle, and medications.
The website is also set up to collect device settings data from a Vagus Nerve
Stimulator (VNS), an implant device that administers mild electrical pulses to
help prevent seizures. All of this data can be presented in charts that help
neurologists pinpoint patterns and make treatment decisions. For example, when
we added a time-of-day chart, we noticed that most of Evanâ€™s seizures occurred
at a certain time of night. We realized he was metabolizing his medicine too
quickly and we adjusted the timing and dose of his medicine.
One of our clients has been
seizure-free since the time-of-day chart helped her doctor adjust her
medications. Prior to that, she had multiple seizures each week.
Parents can also see patterns that help
to predict when the next seizure is likely to occur. Charting the timing helped
us to realize Evanâ€™s seizures occur every 10 to 14 days. We know to be more
vigilant after nine days. This really helps with quality of life.
But quality of data is what really
drives quality of life. When we first began tracking seizures, we had to
remember the characteristics of the seizures and try to accurately report the
information to doctors. As he recovered from a seizure, we were trying to take
notes to give the doctor. Now all of this is recorded. It is more accurate --
and we can focus on our son instead of our notes. One button uploads the video
for the neurologist to view.
In the epilepsy world, it is so
important to communicate good information with physicians.
Seizure Tracker goes beyond providing
accurate information to patientsâ€™ doctors; a separate platform based on the
Seizure Tracker design is also being used in a clinical trial studying possible
neurocognitive benefits from treatment with Everolimus in patients with
Tuberous Sclerosis Complex (TSC).
Note: The Wynsum Arts app, i.AM Search, is currently geared toward helping
children with autism. We decided to profile this app because we knew
anecdotally that many people with autism also have seizures. During our
research, we found that the National Institute of Mental Health (NIMH) reports one
in four children with autism has seizures, often starting in childhood or
in the teen years. The NIMH cites â€śMedical Problems, Treatments, and
Professionalsâ€ť by Fred Volkmar in the second edition of Children
with Autism: A Parentâ€™s Guide (2000) as
the source for the statistic.
Artsâ€™ mission is supported through the purchase of apps from i.AM Search
- available in iTunes. Thatâ€™s
how we can do what we do for free!