Robert Moss, TSC father, explains how the need to keep track of his young son Evan’s TSC-related seizures, led to the development of Seizure Tracker™.
When we became parents we never expected to be dealing with a chronic health issue. When Evan was born, we were thrilled to have a second child and enjoyed watching our daughter Aria meet him for the first time. Evan was perfectly healthy and we went home to adjust to life with a new baby in the house.
Evan began having seizures before he was a month old and we later learned that the cause of his seizures, and many more medical issues yet to come, was tuberous sclerosis complex (TSC).
Keeping track of all the seizures and medications became a daunting task. The sheet of paper we were given with 365 boxes on it to log a year’s worth of seizures was a jumble of numbers, notations and highlighted codes. We began working on a website to organize the medical maze, spending many late nights at the computer. We realized Seizure Tracker could be helpful to other families dealing with Epilepsy and began to broaden our scope to make the site more comprehensive.
Improving diary access…
Access has been a main priority in the Seizure Tracker™ development. The Seizure Tracker mobile apps, on Android and Apple, provide a real-time seizure recorder. With a single press of a button, mobile app users can time and videotape a seizure as it happens. The mobile interface also allows for recording rescue medication administrations and vagus nerve stimulator (VNS) magnet swipes while the seizure is happening.
Along with the seizure diary, Seizure Tracker™ allows users to collect other data that could be associated with seizure activity. Additional diary tools include: medication, rescue medication administration, diet therapy, VNS activity (settings and magnet swipes), hormonal fluctuations, and much more!
The reports generated by Seizure Tracker™ become a valuable communication aid when meeting with doctors. All the necessary information is in one brief report. With a simple keystroke, a user can customize a report to outline any talking points, questions and concerns. Reports created on SeizureTracker.com include graphs that visualize seizure activity against therapies and can be printed or emailed directly from the website.
Since the initial website launch in 2007, Seizure Tracker™ has grown to be the largest collection of patient reported seizure activity in the world. Through a user mandated initiative, Seizure Tracker™ has focused on leveraging the data collected through its web based and mobile tools to better understand the cause and progression of epilepsy. A strong collaborative relationship with the National Institutes of Health has enabled the ethically reviewed sharing of anonymized Seizure Tracker™ data across the globe. This data has supported research published in renowned medical journals and has changed the way we look at the natural progression of seizure activity. The Seizure Tracker™ “Data Share” system also allows industry, research and advocacy partners to link outside databases to Seizure Tracker™ user data.
Founded by parents struggling to understand their own son’s seizure activity, Seizure Tracker™ has become a valuable tool for patients, doctors and researchers alike. It is changing the understanding of epilepsy and how to care for individuals struggling with seizures.
You can learn more and join the Seizure Tracker™ community by visiting www.SeizureTracker.com and setting up a free account. The Seizure Tracker™ mobile apps can be found on iTunes and Google play. Look for the red “track it” icon.