Boyce’s parents explained on Tuesday that he had epilepsy and died of a seizure, but, as New York City neurosurgeon Dr. Nitin Mariwalla tells PEOPLE, his family may never know exactly how the seizure caused his death.
Mariwalla says that unless there was a witness to the seizure — and reports on Boyce’s death said that he was “found unresponsive in his home” on Saturday afternoon — it is difficult to determine that a seizure actually occured.
“It’s hard to say,” says Mariwalla. “I think he would probably be classified under sudden, unexpected death in epilepsy. It goes by an acronym called SUDEP. It’s basically a grab bag diagnosis. It means that somebody with epilepsy died unexpectedly and there’s no toxicological or anatomical cause of death during the autopsy. It’s sort of a non-answer answer. We’re just saying what it is, it’s a sudden death in a patient who has epilepsy. It does not describe the cause of death.”
The problem, Mariwalla explains, is that there are many different ways that a seizure can lead to death, and they can be hard to sort out postmortem.
One option is that Boyce had brain swelling from the seizure.
“When you have a seizure, you can go into a state called status epilepticus,” Mariwalla says. “Status epilepticus is where you’re continually having seizures. In other words, the seizure doesn’t break. When that happens, you build up some very toxic metabolites in the brain that can make the brain swell. Your brain requires immense amounts of oxygen and glucose to continue firing away like that, and you can in a sense burn out your brain.”
Brain swelling can also occur when the patient’s airway is blocked, and they have difficulty breathing, a common side effect of a seizure.
Mariwalla says it’s also possible for people to die of a cardiac event related to the seizure, or if they lose consciousness and hit their head — though he says that is rare. He says in some cases, epilepsy patients self-medicate with over the counter drugs, which can interfere with seizure medications and their ability to prevent seizure.
Mariwalla says that living with and managing epilepsy is difficult, and varies significantly from patient to patient. People are diagnosed with epilepsy if they have had two or more unprovoked seizures, meaning those who have had a seizure from other conditions — such as low blood sugar, overheating or alcohol withdrawal — do not qualify.
The disorder means that a person’s brain cells are not functioning correctly.
“In a basic way, we think about epilepsy as a misfiring of the nervous system, of the brain cells,” Mariwalla says. “Most brain cells are meant to do is fire off electrical signals in meaningful patterns. Even as we develop memories, those memories are formed from repeated, patterned firing of neurons. What happens with epilepsy is you basically get a misfiring or a spread of that electricity which then fires off all the surrounding neurons.”
People with epilepsy can have a wide range of seizure frequencies. Some have one or two a year, while others have over 20 a day. And not all of them look like the “classic Hollywood seizure” where the patient falls down and their body starts to jerk, Mariwalla says.
“Epilepsy sometimes can be very, very focal and not cause any kind of motor movements at all,” he says. “There is a type of epilepsy called absence or petit mal seizures, which are considered generalized seizures, but it’s just a blank staring spell that kids will get. They come in all different forms.”
For those that have over 20 seizures a day, they often opt for an extremely difficult but life-saving brain surgery to remove the part of the brain that is causing the seizures. But for others, they can manage it with medication.
“The majority of those medications are aimed at calming down the neurons and preventing the electrical activity from spreading abnormally,” Mariwalla says. “The problem with some of these medications is they can be toxic to the body. Sometimes they can literally slow you down in general. But we’ve come up with some really great medicines that are well-tolerated, that we can start in younger and younger populations, and that can be very effective and, obviously, lifesaving.”