It arrived on a quiet early evening. I was watching a work related program on my computer in the sun room when I heard a loud crash. I did not get up immediately as I had just given Micah a bowl of popcorn that I assumed he was still eating less than 10 feet away from me in the living room; so my first thought was to wonder what in the world Dean was doing to make such a loud noise. But after a few more seconds I thought I had better make sure all was well, and was alarmed to find that Micah was not on the couch munching popcorn, nor was he anywhere in sight. I headed towards the bathroom door which was closed just as Dean came upstairs asking what the loud bang was.
I knocked on the bathroom door, waited a few more seconds then peeked in to see Micah face down on the bathroom floor with blood around his head and feet. The scene was so surprising that I had trouble registering what I was seeing. Years ago I worked at a center for special needs children and had witnessed a number of seizures, but Micah had never had one in his 27 years until …he did. The seizure seemed to go on forever as I tried to keep Micah from further hurting himself. Dean called 911 and the local police and EMT’s arrived quickly to help. Thankfully, they allowed me to ride with him in the ambulance despite Covid precautions so I could be close by to speak for him as needed. I did warn the EMT that it was unlikely that Micah would keep the IV in his hand, but we were able to monitor him closely enough to prevent him from tearing it out until we got to the hospital where, in one swift move, he pulled it out and tossed it on the floor of the ambulance. The EMT said he was just happy that Micah kept it in until we got there.
Micah was groggy once we arrived to the hospital, so our few hours in the ER were uneventful except for the poor man a couple of beds down who was yelling at the top of his lungs while the ER staff tried to settle him down. I was thankful Micah was not reacting to the volume of his cries, as typically that noise would have triggered his stress level to the point of self abuse. While Micah dozed, I passed the time connecting with family and friends via text messages, thankful to have the support of so many caring people while we waited. After a CT scan and a time of observation with no more seizures, I shared my theory that the seizure was most likely caused by a new medication that had recently been prescribed to reduce Micah’s escalating compulsive behaviors. We were discharged after midnight with instructions to call his physician in the morning for followup.
Alas, the hoped for quick fix of taking him off the new medication was not reality, as his physician thought it was unlikely that the medication triggered the seizure and we found within a couple of days without the medication that his compulsive behaviors sky rocketed. His doctor reminded me that people with Autism have a 70% chance of having seizures, a statistic I had apparently forgotten over the seizure-free years. I reluctantly agreed to have him resume the medication we had paused in addition to meeting with a neurologist for input on how to protect Micah from another seizure.
The neurologist recommended starting Micah on a seizure medication as well as completing an EEG to assess for ongoing seizure activity. I was skeptical that we could get Micah to tolerate having multiple wires glued to his head, not to mention keeping him from ripping them right out like he did the IV, and told the doctor that I thought our best chance for success was to have his brother with us for the EEG. He agreed to waive the Covid rule of allowing just only one support person in the room in hopes of a successful procedure. The good news is that Micah, with Josh there to assist, tolerated over 24 wires glued to his head and lay quietly for almost an hour. This was a miracle given that he typically cannot tolerate a band aid on his skin for more than 15 seconds. Micah did not fall asleep during the EEG, as the technician hoped, but overall he tolerated the procedure remarkably well.
The hard news is that we have no answers. The CT scan and EEG results were normal so no additional tests are planned for now. Micah will remain on seizure medications for the time being which brings some comfort, but I hope he does not have to stay on yet another medication for years. The good news is that he seems to have fully recovered and the fear that drove me to check him multiple times during the nights following the seizure has dissipated as life seems to be back to our normal, which compared to most families is not remotely normal, but is at least predictable for us.
I have new respect and compassion for families who live with ongoing seizures as experiencing one was traumatic enough for us. The reality is that Micah may only have one seizure in his life or more may be lurking in the future. For today, that possibility is yet another fear to give back to God; focusing instead on enjoying the seizure-free days one day at a time.
Jan Lessard Peightell April 29, 2021