Seizures While Sleeping: Finding Answers for One Child's Rare Epilepsy

Multiple times each night, as Baylie Williams sleeps, sudden electrical bursts in her brain will misfire and send the 4-year-old girl into seizures.

Her head and arms lift. Her eyes open, turned to the side. Her body goes rigid and she loses bladder control. Sometimes she moans; usually the episodes unfold silently. The next morning, Baylie doesn’t remember.

“It’s very tough to watch. It never gets easy,” said her mom, Brandi Williams. “Most of the time she just goes right back to sleep.”

Diagnosed at age 2, Baylie is among the estimated 12% of epilepsy patients who experience nighttime seizures. An electroencephalogram (EEG) monitoring study at the epilepsy monitoring unit at Cook Children’s found that her seizures occur six or seven times a night – even more than her parents initially realized.

Dave Shahani, M.D. an epileptologist at Cook Children’s, explained that nocturnal seizures cause special concern because of the risk that a child in the throes of a seizure might suffocate on fluffy bedding or soft toys.

“It’s not that they are any different from other seizures per se, but we tend to worry about them more,” he said. Seizures while sleeping are less likely to be witnessed by a parent, he pointed out. “Any number of nighttime seizures is a high number. Even one a month is a high number.”

The U.S. Centers for Disease Control and Prevention estimates that epilepsy affects 470,000 children nationwide. Irregular electrical activity in the brain characterizes this chronic disorder, which encompasses a wide variety of seizure types. Symptoms of epilepsy can look very different in different people.

Someone having a seizure might collapse, twitch or spasm, stiffen, blink rapidly, stare into space, or lose consciousness, for instance. Nighttime seizures pose the added challenge of sleep disruption. And studies have indicated a higher risk for Sudden Unexplained Death in Epilepsy (SUDEP) during sleep. SUDEP is poorly understood but suspected to involve cardiac or respiratory complications.

Damian Campbell, D.O., a pediatric neurologist at Cook Children’s in Prosper, said Baylie’s frequent and consistent sleeping seizures stand out as “the most extreme case that I’ve experienced.” But he’s encouraged about the prospect of surgically correcting her epilepsy.

Doctors think Baylie’s seizures originate from the right frontal lobe of her brain due to focal cortical dysplasia, a jumbling of the neuron cells as her brain developed before birth. In a surgical procedure scheduled for December, her medical team expects to pinpoint the abnormality’s exact location – and eventually reduce or even eliminate her seizures.

In November, as we observe Epilepsy Awareness Month, we’re highlighting Baylie’s story to illustrate the complexity of epilepsy, to share hope, and to feature the work of the neuroscience experts at Cook Children’s who treat the seizure disorders of more than 13,000 infants and children per year.

Starting to Find Answers

Baylie loves to sing and dance, can charm someone she’s just met, and in her dad’s words “she’s amazing.” So the discovery of their daughter’s epilepsy several years ago came as a surprise to Jabyrie and Brandi Williams. None of Baylie’s five older siblings has seizures. And judging just by appearance, nothing seemed obviously wrong with the toddler. But the family noticed occasional behavior they thought was unusual.

“Every once in awhile she would start staring off into space and then she would start laughing after she came out of it. We would snap our fingers and say ‘Baylie, Baylie,’ and she wouldn’t say anything,” Brandi remembered.

“We didn’t think it was anything at first,” Jabyrie said. “She would look around and laugh, and we thought it was an imaginary friend.” The Williamses referred to these strange bouts as “blanks.”

Then they picked up on other odd signs… dizziness after her blank spells, dark circles under her eyes, and complaints about feeling tired. She struggled to follow directions at home. At gymnastics, she couldn’t focus enough to complete a step-by-step routine. “Walk the beam and then do a handstand and do a cartwheel,” Brandi said. “Her mind couldn’t process doing those things in a certain order.”

After a referral from a pediatrician, Baylie underwent various tests, including an MRI, spinal tap and electroencephalogram (EEG). In 2020, they sought a second opinion at Cook Children’s, where she came under the care of both Dr. Campbell and Dr. Shahani. Further tests showed that Baylie’s “blanks” and trouble concentrating stemmed from the disorganized layering of neuron cells on one side of her brain.

She currently takes two medications that mostly control her daytime seizures. At full-day pre-kindergarten she hasn’t had a seizure during nap time. But a stressful day, Brandi said, might trigger a breakthrough seizure during waking hours. And the nighttime seizures still happen regularly.

“Focal cortical dysplasia can’t be fixed with medication. You can suppress the seizures, but you can’t fix anything. Surgery is the only thing that could fix it,” Brandi said.

Dr. Campbell characterized Baylie as a good candidate for epilepsy surgery. He cited the higher likelihood for surgical success in patients whose seizures onset lies in just one part of the brain instead of generalized in multiple locations. A lesion in Baylie’s right frontal lobe “as a result of being malformed, doesn’t respect the organization of how the brain produces electricity,” Dr. Campbell said.

Dr. Shahani concurred in the assessment of good surgical potential. The four medications Baylie tried didn’t stop her nighttime seizures. “Without any change in her treatment plan, she will continue to have seizures for the rest of her life,” he said.

Next Step, Surgery

A stereo EEG is scheduled for Dec. 13 to precisely locate the source of her brain’s erratic electrical waves. Daniel Hansen, M.D. a neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center, will make small incisions in Baylie’s scalp and skull to place electrodes that record brain activity. Those findings could pave the way next spring for either a resection (removal of a small amount of brain tissue), or thermal ablation (a probe that uses heat to destroy the area causing the seizures). Cook Children’s performs more than 30-40 epilepsy surgeries annually.

The odds are stacked in Baylie’s favor. Dr. Shahani explained that the target area doesn’t involve critical parts of her brain that control language or motor skills. ‘She presents as a very good candidate for potential seizure freedom,” he said.

For epilepsy patients whose seizures resist medication, alternatives may include dietary therapy or implanted devices such as vagus nerve stimulators. “Early recognition and early treatment always lead to better outcomes,” Dr. Shahani said. And from Dr. Campbell: “Earlier detection is better because uncontrolled seizures can affect patients cognitively over time.”

They encouraged parents to call a neurologist or epileptologist if they suspect their child might be having seizures. Videos can be a valuable diagnostic tool by capturing a recording of the twitches, spasms, “blanks” or other concerns. Seizures often go undiagnosed or misdiagnosed because they occur so uniquely in each person, Dr. Shahani said.

“It makes it challenging and extremely rewarding to help identify what is a seizure. Parents are our greatest asset because they know their child the best.”

Back in Rowlett, the Williams family keeps Baylie on an evening routine – dinner, medicine, bath, in bed by 8:30pm. She sleeps in her own bedroom, protected from falls by a guard around the edge of her mattress. A camera keeps watch.

“In the beginning she was sleeping with us because we were nervous,’ her mom said. “But we had to come to the agreement that we have to let her be a kid.”

Brandi and Jabyrie expressed optimism that this treatment path will put an end to Baylie’s nighttime seizures and allow her to come off the meds. They urged other parents to know that the signs of epilepsy can be silent and easy to miss. Their advice? Ask questions, pay attention to seizure triggers, and advocate for your child.

“We want answers, and that’s what Cook Children’s gave us,” Brandi said. “If we never would have switched to Cook Children’s we just would have been chasing seizures for the rest of her life. We want her to be as independent and normal as possible. Being on medication for the rest of her life just wasn’t what we wanted for her, if we could help it.”

Left uncontrolled over time, seizures can cause buildup of brain scarring, Dr. Campbell said. Nighttime occurrence interferes with the restorative sleep that children need. He applauded the Williamses for their willingness to follow the recommendation for surgery to stop Baylie’s seizures.

“I hope that this article helps other families with the expected fear with hearing someone say ‘Maybe we should consider surgery,’” Dr. Campbell said. “It is a scary conversation. But I think over time we’ve become optimistic that her story will make it less anxiety-producing for families.”