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Epilepsy Journal: An App to Monitor and Track Seizures

When wish parents Donny and Christina Cosic learned that their daughter, Olivia, had epilepsy, it changed their world. “After Olivia turned one, we started having concerns about her development,” Christina says. “Something didn’t seem right and at first we thought it was cerebral palsy.”

After visiting The Hospital for Sick Children (SickKids) in Toronto to undergo multiple tests, along with an MRI, the results came back inconclusive. There were no genetic causes or factors that explained why Olivia was experiencing 10-20 seizures a day. “We tried a bunch of treatments, including seven different drugs that we thought would help,” Christina says. “She even ended up in the ICU (Intensive Care Unit) a couple of times in induced comas, because the seizures wouldn’t stop.”

The Cosics started Olivia on a ketogenic (low-carb) diet when she was two-and-a-half years old, and noticed an immediate difference. “In the first month, pretty much all her seizures stopped,” Donny says. “She’s been getting better, and is now not on any medication.”

Tracking Olivia’s food intake, seizures, triggers and development is what led the Cosics to focus on her diet. “After trying so many treatments, we learned that the success of her health relied on how well we documented things,” Christina says. “SickKids gave us a binder with printed tables and pages, where we wrote everything down – those binders became massive!”

As the pages of notes multiplied, so did the binders with all of Olivia’s records and data. “We needed to centralize all this data in a way that was accessible and easy to share with the doctors,” Christina says, adding that tracking became especially important when Olivia had up to 20 seizures a day.

An Idea Brought to Life

Donny, a physics engineer, decided that the best and easiest way to track Olivia’s seizures as they happened, would be with an app. “I took a couple of computer courses to get things started, and my sister is a graphics designer, so that helped, too,” Donny says. “The idea was to keep it as simple as possible – something easy for anyone, of any age, to use, and something that would track in detail.”

The Cosics launched Epilepsy Journal in July 2016 on Google Play Store, under their company, Olly Tree Apps. The app, which has been downloaded over 5,000 times, worldwide, with 20 to 30 downloads each day, is also available in 10 different languages and already has a 4.3 star rating on Google Play.

According to the app description on Google Play:

“Epilepsy Journal is an app which allows you to quickly document daily variables concerning your epilepsy, such as seizure triggers, types etc. The information you provide is organized into easy to read graphs which allow for quick visualization of your individual epilepsy trends and patterns overtime. This app can serve as a valuable communication aid, by allowing you to generate a straightforward and professional report which can be shared with your physicians.”

“We want to keep this app free so that everyone can use it as they need to,” Christina says, adding that they’d eventually like to make it available on multiple operating systems.

The Cosics are now working with a dietitian at SickKids to try and incorporate the app into programs where patients are on a ketogenic diet. “We’re hoping that it will continue its use in helping people.”

Read Olivia's Wish Story.

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