March is Epilepsy Awareness Month. Sadly our family is aptly aware. We live with Epilepsy every day. Our seven-year-old daughter was diagnosed at the age of three. I refused to believe it at first, but we couldn't dispute the squiggly lines on the electroencephalography monitor that confirmed a life threatening seizure disorder. The onset was sudden and the year it took to bring her seizures under control was brutal.
Avery’s seizures were classified as Status Epilepticus—life-threatening seizures that don’t stop without medical intervention. My heart still races when I allow myself to think about those early days.
Having a child with a seizure disorder affects the entire family. Avery’s older brother witnessed those early episodes and we can see the emotional affects of it today.
After tweaking her medications, we were thankfully able to control the seizures and Avery has now been footloose and (nearly) seizure free for nearly two years. Though she still has the occasional absence seizure, the BIG ONES seem to be a distant memory.
We are very fortunate that the meds work. They don’t always. In fact, thirty per cent of people with Epilepsy have seizures that are resistant to medication.
Avery is scheduled for an EEG to see if she is one of the lucky ones who will outgrow Epilepsy. The test results will determine if we will wean her off her medications. We hope for this, but also fear it. What if the seizures—the big ones—come back? This is something I’d rather not contemplate.
Though our daughter’s Epilepsy is a component of a rare genetic disorder, Epilepsy in the general population is much more common than people realize. It affects one in every hundred people worldwide.
March 26 is International Epilepsy Awareness Day and Gary Collins, the Executive Director of Epilepsy Canada, will dye his hair purple on that day to raise money for epilepsy research. Anyone who wishes to sponsor Gary or others who have pledged to colour their hair purple can do so online at www.purplehair4epilepsy.com. For more information about Epilepsy and how you can help fund the research being done to find a cure, visit www.epilepsy.ca.
Lisa Thornbury is the author of foreverinmomgenes.com where she writes about the sometimes serious, but mostly sweet moments of raising a child with special needs.