Let's face it, seizures stink. They really do. But when they are a part of your child's life, you do have to deal with them. One thing that has helped our family tremendously is the free online tracking and reporting tool offered by Seizure Tracker. It was created by a family in Virginia out of their need for a system to track their son's seizures. It beats any calendar or reporting form our neurologists have ever given us or that I've tried to put together myself.
Here's what the good folks at Seizure Tracker have to say about themselves: "Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure causes or triggers, seizure activity, seizure medications, along with other seizure treatments. Users have the capability of logging seizure activity on their personal computer, on any web enabled mobile device including the iPhone, or on paper forms that correspond to the online logging forms. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers."
Here's what we've found...it's easy (and we love free!) to set up an account with Seizure Tracker. It's quick to fill in the checklists and create reports and charts containing the information that you and your child's neurologist find most helpful. They have added a new section for people using a VNS to manage their seizures. I have never used the tool on a mobile device, which is a VERY useful capability, so I can't comment on how easy or difficult that might be. Another cool feature we've never used is the ability to email the data directly to your neurologist. If anyone has feedback on either of those, please do post a comment for other readers. Overall, Seizure Tracker is a very valuable tool that I recommend to any family needing to track their child's seizures.
On a different note, tomorrow is The Big Day for announcing the winner of the g-tube pajamas! Be sure to let your friends know about the giveaway since there's only one more day to enter to win...
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A correction to my post earlier today...I was reminded that Seizure Tracker allow you to customize for seizure symptoms. My apologies! If you find Seizure Tracker useful, I hope you'll drop a line to the sponsors to let them know. We can all use a little encouragement now and again. Thanks!
Rose-Marie
Creatively adapting the environment, the opportunities, the mindsets that touch our children with disabilities.
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