Stacy Riley – “we attended another support group meeting and it was so incredible to express and see the recognition on the faces of those present.”

  There were so many questions concerning Eric and his behavior. After much discussion and prayer we decided to enroll him in a local private school (we were homeschooling). It was his teacher who asked if we had ever heard of petit mal seizures. We had but never in connection with our child. An EEG was scheduled through our pediatrician. The EEG technician was patient, encouraging, personable…she answered my questions and Eric’s questions. We could see the monitor with all of the squiggly lines jumping all around especially when Eric had to blow the pinwheel and then again when the strobe light was used. As we were leaving I asked how long before someone called with results. She said we’d be hearing from someone pretty quick but not more than seven days. The next morning our pediatrician called and asked me to bring Eric in right away. He never said the word epilepsy – just Eric was having seizures. He began taking Depakote that morning and an appointment was made to see a local neurologist (8 weeks away).
We were still in the spin cycle when we saw the neurologist. The word ‘epilepsy’ had still not become part of our vocabulary. Eric was just having seizures. I hadn’t even researched anything. It was as though he would take this round of medicine and be ok like an antibiotic. Even the neurologist didn’t say the word; the intern is the one that said it first.
“When an individual has epilepsy you need to beward of…” and she began listing what to ‘beware of’. I didn’t hear her anymore. The word ‘epilepsy’ was circling round and round in my head. Eric has epilepsy? Really? Why? How long? Since when? What does it look like? The pediatrician said he had seizures.
Future neuro visits and research revealed Eric’s seizures. Eric really has epilepsy. He won’t grow out of it. We don’t know when it began so we don’t know how long he’s been affected. We don’t know a physical/medical reason of why he has it. But we do know what it looks like! It took a few times to recogonize the little ones and learn that if they start coming too fast a big one is on it’s way!
Eric’s been on multiple AED’s trying to get some measure of control. It’s been almost seven years since the diagnosis and we’re as close to controlled as possible. In 2009 a VNS (Vagus Nerve Stimulator) was implanted in his chest. It works like a pacemake for his brain.
We felt completely out of touch with the rest of the world around us. Nobody we knew had epilepsy. Sweet, dear, loving friends would listen and empathize but they couldn’t identify. Three years ago I stumbled across the Epilepsy Foundation phone number in the phone book. After talking about it we decided to attend a support group meeting but we were the only ones there…then Eric’s seizures went out of control and we spent the next year trying to get him stable. Then we attended another support group meeting and it was so incredible to express and see the recognition on the faces of those present. They had been there – they knew what we were talking about – they understood.
Eric requires full time care. He is stable but it requires a lot of planning and patience on our part to keep him there. He’s our priority. I want to do so much more with and for the Epilepsy Foundation…I’m so thankful they are here for us and I wish I had found them seven years ago when our journey first began.