15 hours ago
Tuesday, May 26, 2015
Seizures are the devil
"Fireman Max! Fireman Max! Can you hear me?" I pleaded as Max lay next to me. It's the name he responds to these days. Only he wasn't answering.
We were down at the Jersey Shore for Memorial Day weekend, and Max and I had fallen asleep in the big bed at around 10. That turned out to be lucky, because otherwise I wouldn't have heard him having a seizure. I woke just before midnight when he let out a few yelps. And then, his arms and legs were shaking uncontrollably.
"DAVE! SEIZURE!" I yelled, and he came running in from the living room. "CALL 911! NOW!" Dave turned on the lights, and I could see Max's eyes rolled to the back of his head. I slid him onto his side and slipped my arm beneath his head as Dave dialed. I hugged Max into my body, willing the seizure to stop and terrified.
Max hasn't had a seizure since he was 5 years old, and it was a pretty mild one compared to the grand mal he'd had at 18 months that lasted for more than a half hour. Trileptal had kept them under control...until now. I realized that my purse with Max's emergency anti-seizure injection, Diastat, was at home. Dave and the kids picked me up from the airport Friday night (I'd been in Chicago at the United Cerebral Palsy conference), and we'd driven directly to the beach.
"Fireman Max! Fireman Max!"
He didn't respond.
We were actually having his medication levels tested next weekend. Max is at higher risk for seizures as he goes through growth spurts, the neurologist has said. A few seizures don't have an impact but if they become a regular occurrence and last long, they can cause brain damage.
Seizures are my boogeyman, one of the things I fear most in this world. As I helplessly watched Max convulsing, it seemed like the devil had taken over his body. Seizures are the closest I have ever come to seeing Max die. That was horrifying to write, but it's nowhere near as horrifying as seeing your child gone from you.
After about a minute and a half, the shaking stopped. For another couple of minutes, Max was unresponsive, his eyes staring straight ahead, his pupils dilated. Eventually, he nodded when I said "Fireman Max!"
By then, a policeman and a resort security guard had arrived. The EMTs were on their way. It turned out the guard was a firefighter by day, and he showed Max his ID. That barely got a rise out of him, he was so out of it.
When the EMTs came they took a look at Max and asked if we wanted him to go to the hospital. We didn't see any reason to subject him to it; there wasn't anything else to be done.
And then everyone left and soon it was just Max and me lying in the dark. He started snoring gently, as I held one of his hands. He'd been up late for several nights in a row. He'd also had a bunch of late nights back when he had the last seizure, and so fatigue was a likely cause of this, too. I got up and emailed the neurologist.
In the morning, Max literally bounded out of bed at 7:30. He was his usual Max self, maybe a little paler than normal but good-humored and eager to down one of his usual Dannon Whipped Chocolate Yogurts for breakfast.
"Max, are you feeling OK?" I asked.
"Yeah!" he said, smiling.
At age 5, Max wasn't able to explain stuff to me, but now he can.
"Max, do you remember having a seizure last night?" I asked.
"No," he said.
That was good.
"Leese!" he said.
He remembered that there was a policeman standing in the bedroom, but that was about it.
"Happy?" Max asked. I know I looked worried.
"Yes, I'm happy," I said, untruthfully. Later, Dave and Max headed out to rent a golf cart for a couple of hours, as we'd promised him, and Sabrina and I went to the beach. We talked about the seizure. She'd heard Dave calling the police, then fell back to sleep. She asked if Max was OK, and I said he was.
Sabrina built sand castles and I sat on a towel, envisioning Max having the seizure.
In a bit, Dave texted me a photo. He and Max were having a fun time watching a Memorial Day parade.
A fire truck passed by, and a firefighter recognized Max from a visit to his station.
"Hi, Fireman Max!" he shouted.
Max responded with a great, big grin.
The neurologist is raising the dosage of his medication, and hopefully that will work. We will do our best to ensure this doesn't happen again, although I have a feeling it will.
I had Max sleep in our bed last night. I tucked him in early, and lay down next to him for a bit.
"Happy?" he asked.
"Yes," I promised him. "Are you?"
"Yes," he said, and he was.
Photo: Martin Luff
Posted by Ellen Seidman at 7:00 AM