SeizureTracker – Great Tool For Tracking and Recording Seizures
This week I started using an online program called SeizureTracker. Over the past few months, Addi and Cassi have been having seizure episodes and we have been dosing them up and down on different medications.
SeizureTracker was created by Rob and Lisa Moss, parents with a son named Evan who suffers from a severe seizure disorder called Tuberous Sclerosis (TSC). Their personal story is incredibly inspirational because the Moss family has turned their hardship and frustration in tracking Evan’s seizures into a web based program to help everyone afflicted with seizures.
The video about their journey with Evan won the American Academy of Neurology 2010 Neuro Film Festival award. Please take a moment to watch this video as it’s one of the most compelling videos I have seen.
Seizure Tracker is very easy-to-use and has terrific graphs and reports. The website even has printable logs enabling you can track seizures when you are on the go, at the hospital, or even when kids are in school. Currently, I log Addi and Cassi’s seizures each day on paper and then sit down and do the data entry at the end of the week. You can also access your account on any web enabled mobile phone and soon users will have the capability of recording rescue medication usage and daily notes through the mobile site.
Seizure Tracker also allows you to share epilepsy and seizure related data and trends with your doctor. I feel this is the biggest benefit of all of the SeizureTracker program. I must admit it was hard to enter in all the seizures and see the number tallying higher and higher. But at the same time Seizure Tracker’s trend charts will allow us to make better decisions on medications for Addi and Cassi and to know if a seizure medicine is actually working or not.
Thank you to the Moss family for the amount of time an energy you have put into creating this website and program for all of us. You have made a difference in our daily lives. I hope and pray someday our twins can reach a seizure free state.