Keeping safe with epilepsy and seizures: Robert Moss Seizure Tracker Founder
In every issue of the Northeast Regional Epilepsy Group (NEREG) newsletter, we present a ‘Safety Feature’ that is meant to educate and inform about safety measures for the lives of people with epilepsy. This issue, we focus on revolutionary, free software called Seizure Tracker, an endeavor headed by Robert Moss. Seizure Tracker is an innovative tool that combines on one platform seizure history, details about anti-epileptic drug (AED) therapy, changes in AED dosages, doctor appointments and other daily notes.
Moss has a son who started having seizures starting when he was a month of age. On going to the neurologist, they were given a piece of paper to log seizures for the rest of the year. Moss and his wife quickly realized that logging seizures this way was not the best way to track their son’s information, as they wanted to track not just seizures but other information like drug use, dosage, mood and seizure triggers as well. After looking online if there was a better way to track all this information and not finding one, Moss decided to put together this comprehensive program known as Seizure Tracker.
Anyone who has experienced seizures (or has seen a loved one experience seizures) knows how important (and difficult) it is to remember details about seizures for proper care and management. For example, if there were a way to know over time, that one’s seizures are exacerbated by sleep deprivation, the information would help the patient to pay more attention to her sleep schedule. Another example could be if seizures occur usually at night – in this case, the AED regimen can be changed so as to make sure to have adequate AED levels in the blood during that time.
This free, easily downloadable software can help log details of seizures such as duration and type; there is a feature to record the seizure and upload the video on YouTube to show to your neurologist on your next visit. In addition, it has the capability to track doctor’s appointments; to log in information about vagus nerve stimulator (VNS) settings, menstrual cycle information, tracking of diet information (for someone on the ketogenic diet, for example), rescue medications (in the case of breakthrough seizures) and tracking of drug levels in blood. All these features are remarkably easy to use, thanks to the intensive information the site provides. These features make Seizure Tracker a truly remarkable and worthwhile tool in one’s seizure management armamentarium. The newest addition to Seizure Tracker that Robert is very excited about is the iTunes app – a simple and easy way to track seizures and daily variables using a smart phone. What makes Seizure Tracker stand out is how easy it is to use, and share with medical professionals.
Seizure Tracker has truly revolutionized the way we can use data to help children and adults with seizure disorders.
