Saturday, September 13, 2008

Medication does not always control seizures

I am writing because I would like to share a story about my grandson Evan's struggle with Tuberous Sclerosis and Epilepsy and how my daughter and her husband, Lisa and Rob Moss, turned their family's experience into something positive. Lisa was a student in Barbara Houle-Schwanke's first grade class during her first year of teaching. Although we moved away when she was still young, Lisa has always felt strong ties to this area.

When Lisa and Rob became parents I knew they would be great with kids but I didn't expect them to face such challenges. Their daughter Aria was born perfectly healthy and Evan appeared to be the same but that changed rapidly. Evan was born with Tuberous Sclerosis, a genetic disorder that causes tumors to form in different organs. As a result of this condition he had three benign brain tumors that caused him to have Epilepsy.

In Evan's case, medications did not control his seizures, but we were among the lucky families who had brain surgery as an option for seizure control. It's crazy to think that most people who are Epileptic don't have this choice. The technology isn't sophisticated enough to pinpoint a seizure focus for everyone.

Last Fall Evan was having over 400 seizures a month and after having a series of three brain surgeries in November, he isn't having any! I feel like we've been granted a miracle.
As Lisa and Rob tried to keep track of Evan's seizures and medications, they ended up with a notebook bursting at the seams in a jumble of notes, charts and scribbles.

There was no easy way to document this information to have readily available at doctor's visits, so they designed an online tool to do just that. Rob worked on his computer many late nights developing this tool and Lisa logged Evan's seizures into it and helped find all the bugs and glitches--together they created

They quickly realized Seizure Tracker could be helpful to other families dealing with Epilepsy and began to broaden their scope to make the site even more comprehensive. It provides a free, secure tool to log seizures and medications, and create reports with graphs that can be emailed to doctors from the website. Ironically, the tool was ready to be launched during the same month Evan had surgery, so from a quiet corner of the hospital, Lisa wrote her first post to the TS Alliance message board to let everyone there know it was available.

I raised Lisa with the strong values of Northern Minnesota and it didn't surprise me when she told me she and Rob were going to create a free website designed to help anyone with Epilepsy. Lisa and Rob found out the Minnesota Stroll for Epilepsy was being held during their summer visit and she quickly enlisted me to set up a team. We will be walking in Duluth on Thursday, August 14. All the funds raised will stay in Minnesota to raise awareness through programs that educate, connect and empower people.

It has been great having the kids here this week and has been a joy to watch Evan run through the house without worrying about seizures. He now has a completely different life and is no longer bound by the confines of daily seizures -- he runs through the house causing mischief just like any other 4-year-old!


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