In June 2009, I took the kids to Virginia for a vacation with my family. Emily had a wonderful week. On the last day we went to our friends’ house, and she was a bit fussier than usual. She had a “stuck/staring” spell as she was trying to get into my friend’s car, but she seemed fine the rest of the day. The following day, we started on our 10 hour drive home. Within 5 minutes of our trip, Emily began to have one of her car episodes. She was completely unresponsive to everything I tried, and her eyes were open, deviated to one side, and staring. This was the longest episode she ever had. As the minutes ticked by, I called my husband to see what I should do. He called Em’s neurologist, and she told him to give a half-dose of her current seizure med and the emergency med that we always carry if we couldn’t bring her out of it. If we had to administer the emergency med, I was instructed to call 911. I had never had to use the emergency med, but I started to get it ready. Emily was still unresponsive as I got her out of her carseat and laid her on the driver’s seat to give the rectal Diastat. A second before I administered it, she came around. She was fuzzy and scared, but responsive. Using her past as a guide, I thought we were over the worst of it. Rather than subjecting her to a strange ER, I got back in the car and headed home again.
I was trying to keep her taking and engaged, but after 20 minutes of driving, she began to have another episode. I pulled over and began to get the Diastat ready again. As before, she came back around before I had to administer it, but this time she was extremely lethargic and her words were heavily slurred. I sent this picture to my husband so that he could explain to her neurologist exactly what was going on:
Back on the road again, Emily had yet another episode. I got off the highway and followed the signs for a hospital. By the time I reached the parking lot of the emergency room, Emily was stirring but not fully arousable or alert. I loaded her into her stroller, got my other two children, and started to run for the door. Emily started screaming and thrashing. I was worried that she was going to fall and hit her head. I tried to get her out of the stroller to carry her, but she was hitting and kicking me. Again, her past history was working against me–this was her usual “post-ictal” state, and nothing but time made a difference. (We had taken Emily to the ER at home when she was in this state the previous fall, and they would not do anything for her.) Back in the car we went. All I could think of was getting her home and back to her own doctor for help.
By the time we reached the next state, she had another episode. Again, I pulled over to look for a hospital. This one was much shorter. Emily was obviously exhausted, and she fell into a deep sleep. I had to reassure myself that she was still responsive even though she was asleep–she was–and I started driving again. A short while later, I pulled into a hotel for the night too shaken to go any further. Emily was aggressive and irritable, but she slept the entire night and woke up back to her usual self. I took the rest of the drive home very slowly with frequent breaks, but Emily did not have anymore episodes.