Like many families, we don’t have a formal Seizure Action Plan. It’s all in our heads. Not the best plan I admit. My son, Theo, divides his time between his dad’s house and mine, but we communicate regularly and fortunately it’s an amicable situation. One night, a few weeks ago, his dad phoned me close to midnight to tell me that Theo had been seizing every 2 minutes. He’d administered a drug that we use as an emergency rescue medication to stop cluster of seizures and was considering calling 911. But we hesitated as many do these days, because we were hoping to avoid being in a hospital environment because of COVID-19. We decided to wait 20 minutes, and every two minutes exactly, I could hear the horrible sounds of my Theo’s seizures through the phone. Fortunately, the time between seizures grew longer and longer until they finally stopped. When we discussed this with our son’s neurologist at his next appointment, we were told that we had done the wrong thing and we should never hesitate when our instincts tell us to call an ambulance.

There were several lessons learned that night:

Have a written Seizure Action Plan that addresses situations just like this. Make sure this plan is available to caregivers other than ourselves – respite workers, his adult sisters, a significant other that isn’t the parent, emergency responders, hospital personnel, etc. Do not avoid a hospital visit because of COVID. If he needs to be there, then we just need to take him there. If an individual moves between 2 households, make sure the other parent is contacted and consulted when there is an emergency. We didn’t have a Seizure Action Plan before, but now we do!