When We Met Epilepsy

This is the story about how our lives suddenly changed when our youngest daughter was diagnosed with epilepsy.

When you hear the word “epilepsy” what immediately comes into your mind? If you are like me, or like I was about a year ago you think of someone falling onto the ground and shaking uncontrollably. Well epilepsy, I’ve come to learn is so much more.

In June of 2018 my 7-year-old daughter had her first recognized seizure. It was a Friday morning, the day after her birthday. We were getting ready for school, my 11-year-old son, Mason, 9-year-old Lily, and 7-year-old Gabby. I work as a school nurse at my kid’s elementary school so I was busy getting ready as well. The kids were eating their breakfast in the living room while I made lunches in the kitchen. It was like any other morning until my daughter, Lily came running in screaming that Gabby had fallen. Mason too was yelling from the living room that Gabby had collapsed. I ran in to find Gabby on the ground, unresponsive, blue around the mouth. Unable to tell if she’d fallen from choking on her Lucky Charms I attempted to give her the Heimlich maneuver. Quickly, I realized that wasn’t the problem, as my other children pleaded with me to save her. I recognized that it was a seizure, turned her in her side and asked my son to call 911. After what seemed like hours her seizure stopped. It was really only about two minutes.

My husband, who is a police officer heard the call on the radio for an ambulance on our road. He called me while we were waiting and began to race home. When the ambulance arrived Gabby was sleeping. She slept the whole ride to the hospital and woke up when we were in the emergency room. She was confused and sick to her stomach. The doctor had no explanation, they ran some tests but they were all normal. He told us that these things just happen, and may or may not happen again.

We went home shortly after, in shock. Gabby slept for two hours and woke up like nothing happened. She had an appointment with a neurologist the following week along with an EEG. The neurologist didn’t have any answers either and we continued to watch Gabby closely that week.

She seemed back to herself until that Sunday, June 17. It was Father’s Day and around 2 AM I woke up to Gabby seizing again, we kept her in our bed after the first seizure. We were shaken but planned to call the neurologist in the morning as he said that would be appropriate to keep her home if she were to seize again. Then at 4, she had another seizure. We began to panic, it was one thing to have one, but two? She was scheduled to have an MRI that morning so we put her in the car at 6 and as soon as she was in her booster seat she made a moaning sound and her face began twitching, what I now know was a focal seizure.

Gabby had 4 more seizures that day. Two at our local hospital and 2 at the closest children’s hospital. That was even after she had been given a lot of rescue medication. She was diagnosed with status epilepticus, which is defined as a seizure lasting more than 5 minutes or having more than one seizure without returning to baseline between them. We spent one night in that hospital before being sent back home with our world upside down.

That was our introduction to what epilepsy truly is, it was like living a nightmare. Just like that our lives had changed.
When We Met Epilepsy