If you have Epilepsy, Speak Up

This is a blog about a family's experiences with Epilepsy. Epilepsy in childhood is very common - more so than Autism, but rarely do you hear about it in the media. It is my tiny little vision to see a world where people are not afraid to speak up about Epilepsy and bring a voice to their stories. For many who choose not to speak out about their illness or that of a loved one, Epilepsy continues as a private physical and emotional fight for many.

Please, if you or a loved one have Epilepsy, speak up so that we can foster awareness and grow support for what can be a devastating disease.

Introduction

My 7 year-old son has Nocturnal Frontal Lobe Epilepsy. He was first diagnosed with Epilepsy at four months old. After one year he was given a clean bill of health. At about 3 1/2 years, after repeated episodes of periodic beligerant behavior after nap times and preschool teacher observations of his brief periods of "blanking out," Ethan was diagnosed with migraines. Six months later we began noticing that he was having more and more of what we thought were night terrors. On a weekend in September, when my husband was out of town, Ethan had 50-60 unusual episodes in his sleep. I suspected that he was having seizures. He was admitted to the hospital and was diagnosed with Nocturnal Frontal Lobe Epilepsy.

Since that time, we have traveled on a long journey of many peaks and valleys. We have experienced sadness, grieving, frustration and at times, moments of hope. This blog is an interactive documentary of this journey.