As I’ve mentioned in this blog before, we have been weaning my 10-year old son, Andrew, off his seizure medication. We started several months ago, on the recommendation of a seizure specialist who informed us many kids had seizures and that our son needed to grow out of them. Andrew had been taking this medication every day for over seven years, after an EEG showed petit mal seizures. As he grew, his dosage was increased to maintain a “therapeutic” level in his bloodstream, a level verified regularly with blood tests. At the time of the doctor’s recommendation, Andrew took eight pills a day to control his seizures. The weaning process reduced his daily intake by one pill every two weeks.
This week, Tuesday, Andrew took his final pill. There had been no issues over the last several months. Our biggest concern had been the possibility of grand mal seizures. Andrew had endured only two in his life. A few weeks prior, we received the results of Andrew’s latest EEG. Andrew’s seizures were benign. We celebrated. Andrew was excited. We and our extended families were ecstatic. High-fives all around.
On Friday morning, before I left for work, I went to kiss my wife and kids goodbye. I do this every morning, trying not to disturb their slumber, but am seldom successful. When I entered my sons’ room, I noticed that Andrew seemed to be shivering. Both my boys sleep with two blankets; Andrew had kicked one of his off. I went over to fix his blankets again.
“Are you cold, Andrew?”
Though I knew he was asleep, I half expected a groggy “Yes, Daddy.” None came. As I moved his second blanket to cover him, though, I realized something was wrong. Andrew’s entire body was shaking. Fear raced through my body.
I went to the bedroom door, flipped on the light, then returned to Andrew’s side. I looked at his face; a pool of saliva was pouring out of the corner of his mouth. “Motoyo!” I cried, calling for my wife.
I looked at my son, “Andrew! Andrew!” No answer. I checked to see if he was breathing. His chest rose and fell to confirm it. I yelled a second time for my wife, all the while trying to get Andrew’s attention…to get him to talk to me. Nothing.
I went to the bedroom door and yelled for my wife again. “What?!” she bellowed, coming out the door. Seeing me at the boys’ door, though, her mood changed from annoyance to alarm. “Oh my God! Is Andrew having a seizure?” “Yes,” I responded.
I returned to Andrew. A few seconds later, my wife entered, carrying Andrew’s emergency seizure medication and the cordless phone. The medication was to be administered if Andrew had a seizure longer than five minutes. I didn’t know how long Andrew had been shaking before I found him. However, as the shaking had finally subsided, we chose not to administer it. “Try to sit him up,” my wife suggested. I did as best I could, but Andrew fell back on the bed, “Andrew! Andrew! Speak to us!” we both pleaded. No response.
My wife dialed 911. I tried to sit Andrew up again with little success. I looked at his eyes. They had rolled back partially into his head; I could see only half of the pupils.
“Is he breathing?” my wife asked. Again, I found myself looking at Andrew’s chest to confirm it was moving. In and out. In and out. He coughed and his breath came out in a huge gasp. “Yes,” I said.
I then heard the voice of my other son, “What’s wrong with Andrew?” I turned behind me. Christopher, six years old, was awake and sitting on his bed, looking scared and clutching his teddy bear. “Andrew’s sick. He’ll be fine. Don’t worry.” I knew Christopher was concerned. I wished I could help him more, but knew I didn’t have the luxury. I turned back to Andrew.
“Try to stand him up,” my wife commented, still on the phone with 911. I did my best, but nothing worked. Andrew’s body was like Jell-O. Motoyo finished the call and came back to us. “Andrew, can you hear us?” We worked hard to elicit a response, knowing that getting him to say something was paramount. First, a few groans, then finally, “Mommy.” At last, a bit of relief.
“We need someone to meet the ambulance,” my wife said. “Can you go downstairs? I’ll take care of him.” I agreed, went over to Christopher and asked, “Want to come with me squirt?” He nodded. I picked him up and carried him downstairs, then found a blanket, which I wrapped around him and his bear. We went to the door.
The ambulance arrived shortly. As they drove towards us, I stepped on the porch and waved to make sure they wouldn’t miss the house. I let them in and directed them to Andrew’s room, following them up the stairs. Andrew, still disoriented, was scared of the paramedics, but let them take his vitals. He was talking a little more and preliminary tests showed him to be fine.
Motoyo told the paramedics about Andrew’s seizure history and the medication changes. “We’ve seen this many times before,” the paramedic said. “People have seizures within a few days of stopping their meds. We can transport him, but his vitals are fine. The best thing is just to call his doctor and get some advice.” We agreed and kept Andrew at home.
We reached the doctor’s office later that day. They suggested still keeping him off his meds. Andrew’s grand mal seizures occurred while he was sleeping, not uncommon for children, and the EEG had shown his seizures to be benign. The doctor said that we could restart the meds if we wanted to, but that Andrew’s body still needed to learn to fight it. Being able to take him off his meds had been a dream for many years. He had been med free for two days, before the seizure on Friday morning. We were willing to deal with it, hoping it would get better.
On Saturday morning, Andrew woke up without incident. I must have gone to his room at least six times during the night to check on him. During Andrew’s other seizures, I had already left for work. My only experience had to been show up at the hospital, after my wife had already taken care of it. This was my first time dealing with it and it’s scary. I hope Andrew grows out of it soon.