Paul Barney had his first seizure four days after his fourth birthday. By the time he was 10, his mom worried that if they didn’t get the seizures under control soon, he might lose IQ points along with his ready smile.
When Brian Manning, 11, had a seizure on the school playground – instead of in his bed as usual – his parents knew it was time for drastic action. He’d already had brain surgery once, but doctors said he might need five or six more operations. Or he could have one, to completely remove the right half of his brain.
Both boys have epilepsy and recently underwent surgery at Boston Children’s Hospital. And both represent the promise and frustration of epilepsy treatment today.
Patients have more options, and there is more awareness, less stigma, and a better understanding of epilepsy than there has ever been. But available medications can’t control seizures in about one-third of patients, including Paul and Brian, and while surgery is safer, it still comes with high risks. It also remains unclear what causes the electrical disturbance in patients’ brains that triggers seizures.
Roughly 1 in 26 Americans will develop epilepsy at some point in life – more than will have autism, AIDS, or Parkinson’s disease.
Some patients do fine between seizures and can function normally. In others, their brains are constantly being disrupted, like a radio station filled with static, according to Dr. Blaise Bourgeois the director of the Division of Epilepsy and Clinical Neurophysiology at Boston Children’s.
Improvements in treatments have come slowly, as scientists have learned more about the brain and the possible causes of epilepsy, which range from brain damage to inflammation.
New medications are beginning to arrive that address the brain’s over-excitation in different ways, offering hope to patients who haven’t had success with existing drugs. Some patients have done well with vagal nerve, deep brain, or transcranial magnetic stimulation, procedures that send pulses of energy, hoping to tamp down excessive brain wave activity.
And doctors are getting better at understanding seizure patterns. Some people are more likely to seize in the morning, some in the evening, some while they sleep.
“If you know when seizures are most likely to occur, you can strengthen the defense against them,” said Tobias Loddenkemper, an assistant professor of neurology at Boston Children’s who recently controlled one boy’s seizures by increasing his medication dose in the evening, when his seizures were more frequent.
Doctors are now treating seizures more aggressively to minimize danger to the brain. “Every single seizure causes some kind of damage,” Loddenkemper said. That’s why the old bias against surgery — putting it off until there’s nothing left to do — is slowly changing.
Only about 5 percent of epilepsy patients — the lucky ones, according to some — are even eligible for surgery, because their epileptic “hotspots” are small enough or well-located enough that they can be cut out.
In some cases, the spot where seizures begin is in a relatively harmless part of the brain, and that focal point can be easily removed. At other times, families like Brian’s and Paul’s have to choose between an unmanageable quality of life, and the prospect that their child might lose motor control, memories, or their sunny personality.
Brain imaging has improved dramatically in recent years, giving surgeons a better idea of what they’re dealing with before they enter the brain. A MEG or magnetoencephalography scan, for instance, offers a three-dimensional look at electrical activity between seizures, and a better sense of whether surgery will be useful.
Still, surgical treatments at Boston Children’s Hospital often start with an invasive procedure called “grids and strips,” in which a flap is opened in the skull and left open for up to a week to measure electrical activity from within the brain.
In Paul’s case, it was clear after just two days where his seizures originated and what activities were controlled just around that focal point. Dr. Joseph Madsen, an associate professor of neurosurgery at Boston Children’s, used that information on July 20 to carefully sever the tissue in the boy’s brain.
Surgery could have robbed Paul of his ability to control muscles needed to speak, eat, and smile. But without it, Paul’s mother, Christi Barney, of Medfield, worried he would be deprived of a future.
So far, Madsen is pretty confident that Paul didn’t lose any essential skills. Four days after the surgery, the boy was able to host a dance party in his hospital room, and crack jokes with visiting doctors.
“What’s gray and wears red boots? A getwellephant!” he told them.
“He’s his funny self again, which is really a blessing to see,” Barney said later that night.
Brian’s parents couldn’t bear to put their 11-year-old through the grids and strips procedure a second time. A first round of surgery gave him more than two seizure-free years. The family could try doing a minimal procedure again, Madsen told them, and potentially face five or six more surgeries in the years to come. Or they could opt for a full hemispherectomy in hopes of putting a real end to the seizures, which is what they chose.
Brian has cerebral palsy along with epilepsy — both caused by a brain bleed that struck shortly after his premature delivery, 14 weeks early.
Luckily, Brian’s brain had rewired itself since his injury at birth, and the left side of his brain had taken over control of both sides of his body. So far, Brian seems to be doing well. His mom is pretty sure he hasn’t lost any motor control, but it will probably take a few physical therapy sessions to be sure. And his vibrant, empathetic personality is intact, his parents say.
“Will this take care of everything? They can’t give you that answer,” said his father, Eric Manning, of Watertown. “Right now, I want two months of [seizure-free] peace. If I get to two years, four years, I will still always be watching. You just don’t want to get too comfortable.”
Karen Weintraub can be reached at Karen@KarenWeintraub.com.