In March 2019, life seemed pretty routine at the Semelbauer house.
True, Lucas—a toddler at the time—had been struggling to bounce back from a minor virus.
“He was grouchy, not eating well and hadn’t slept well the night before,” said Anna, his mom. But she didn’t feel especially worried.
She settled Lucas in front of the TV, went to pour herself a cup of coffee and came back to a scene that would terrify any parent.
“He was staring off to the right and unresponsive and then started to convulse,” Anna said. As a physical therapist, she recognized his symptoms as a seizure right away.
She carried him upstairs, woke her husband, Wes, and told him to call 911.
“The event probably lasted just three minutes or so, but it seemed like forever before he stopped convulsing and started breathing again,” Anna said.
Wes whisked Elijah, Lucas’ older brother, to a neighbor’s house while Anna rode in the ambulance with Lucas to a hospital near their Traverse City home.
In the emergency department, doctors told the couple that Lucas had suffered a febrile seizure, likely resulting from a fever related to his illness. Though terrifying, such episodes aren’t unusual. They occur in 3% to 4% of children under 5 and they usually don’t happen again.
Relieved, the family returned home.
Hunting for a cause
As Lucas started to eat a snack of strawberries and blueberries, he experienced another seizure, just as severe as the first.
“This time, we drive him to the ER ourselves,” Anna said. “Then as the physician was examining him, he had another one.”
Doctors admitted Lucas into the hospital, where he had a few more seizures that night. They prescribed him Keppra, a medication commonly used to combat seizures. At first, it seemed it might work.
“They told us that if he could go 24 hours without a seizure, we could take him home,” Anna said.
But then the seizures continued.
Anna and Wes decided to take Lucas to Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids, 150 miles south.
Settling into the hospital’s epilepsy monitoring unit, the couple watched as doctors tried multiple different medications. Nothing seemed to work.
The constant attacks began to exhaust Lucas, who couldn’t eat or sleep.
“At all,” Anna said.
His heart rate rose dangerously high. The seizures intensified. His health care team then made the difficult decision to sedate and intubate him, inducing a coma to eventually stop the attacks.
After 10 days, they began to bring him out of the coma and wean him off medications, a process that took five weeks.
The doctors worked to identify the cause. It had become clear that Lucas faced an unusual pediatric epilepsy.
Food and medicine
Epilepsy, sometimes referred to as a seizure disorder, is an umbrella term covering a diverse group of neurological disorders, characterized by recurrent seizures.
And it’s more common than people realize.
“Between 1% to 2% of the population is diagnosed with epilepsy every year,” said Seth DeVries, MD, a Spectrum Health pediatric neurologist who treated Lucas. “That means about 1 in 26 people will have a diagnosis of epilepsy at some point in their life. That’s roughly one child in every classroom.”
One by one, doctors ruled out possible causes of Lucas’ seizures. Genetic testing helped.
Ultimately, they diagnosed him with a variant of a rare form of epilepsy called febrile infection-related epilepsy syndrome.
The days ticked by.
One medication after another failed to stop or even slow the seizures.
“Lucas’ epilepsy has been incredibly challenging to get under control,” Dr. DeVries said.
Then, at the five-week mark, they identified a combination of medication that helped. They also introduced a non-medication approach—a strict ketogenic diet, high in fats, moderate in protein and very low in carbohydrates.
The care team finally readied to send Lucas home to Traverse City.
Lyndsay Cooper, RD, a ketogenic dietitian at Spectrum Health, worked with Anna and Wes to map out a precise eating plan for Lucas, right down to the tenth of a gram.
Lucas’ medical diet, nothing like the Keto weight loss craze currently sweeping the nation, is very strict.
“To be medically effective, the ketogenic diet has to be followed 100%,” Cooper said. “There are no cheat days or no foods outside the diet parameters. And we have to help parents work very closely with schools and caregivers to stick to the plan.”
When kids deviate, they often have breakthrough seizures.
But when patients stick to the program, ketogenic diets are about 70% effective at decreasing the number of seizures, she said.
Normally, it’s a daunting assignment for a family.
Wes, a food broker and trained chef, leaped at the challenge.
“His culinary background has been a dream come true,” Cooper said. “It’s not just that he’s done such a good job of finding foods that are palatable for Lucas, but that he then figures out how to cook in batches and make it easy to stick to the plan.”
A family favorite? Waffles.
Wes measures them out and refrigerates them by the serving. Lucas likes to eat them with blueberries. He’s also a big fan of eggs.
The Semelbauers routinely measure the ketones in Lucas with a finger prick, to ensure the plan is working. They meet with Cooper periodically to make sure the diet is still on track.
And they are grateful for the current Keto craze, which has made many more products commercially available, Anna said.
“There’s a kind of a Keto version of Froot Loops that he likes to eat with heavy whipping cream,” she said.
They also feel lucky to live in the age of social media.
“In Michigan, there are very few kids fed a Keto diet orally,” Anna said. “But across the U.S., there are hundreds. We’re sharing recipes and ideas. And that kind of support helps.”
Within a month of starting the Keto diet, Lucas went 10 days without seizures, Anna said.
“He is one of our great examples of what the ketogenic diet can do for a child,” Dr. DeVries said.
Faith, family and friends
Several months after Lucas started his new diet and medication, doctors implanted a vagus nerve stimulator in his chest. The device sends regular, mild pulses of electrical stimulation to his brain, which stops some seizures.
“Between those two non-pharmacological interventions, plus medication, our hope is we can get him closer to seizure-free,” Dr. DeVries said. “That isn’t always possible. But we can aim for the fewest possible seizures with the least possible side effects.”
Everyone hopes Lucas’ seizures, which he continues to experience, can be brought under control.
Until then, they continue living their lives to the fullest—monitoring Lucas, caring for his big brother, Eli, and making time for Gryffindor, the family dog.
Both boys remain active. They ride bikes, ice skate and enjoy the many excitements of childhood.
Lucas has also been diagnosed with autism. His physical mobility is appropriately matched to his age, 5, even with all the seizure medications, Wes said.
“He’s got the best-case scenario of the worst condition,” Wes said.
For now, it’s still a marathon.
Both Anna and Wes work full time. Lucas attends half-day school, four days a week, and he needs constant supervision at home.
Each week, he undergoes hours of therapy for autism, including speech therapy.
“He has to be watched one-on-one all the time, in case he has a seizure,” Anna said.
Both of Lucas’ grandmothers are caregivers, so they alternate weeks to help out.
“Our parents helping has saved us,” Anna said. “We couldn’t do it without the grandmas.”
The family has also leaned into support from their church. “Having that faith family has been such a big help, too,” she said. “I don’t know what we’d do without that support.”
Navigating the emotional terrain hasn’t always been easy.
During Lucas’ time in the hospital, the family held steady to faith. “Thinking, ‘There’s a problem. We’re going to solve it and things will go back to the way they were before,'” Anna said.
Given her work in physical therapy, Anna has witnessed firsthand the successes of children amid adversity.
“I had seen children go through catastrophic events and make amazing recoveries.”
Two and a half years into their journey, they continue adjusting as needed.
“I think we’re accepting that Lucas isn’t ever going to go back to being a normal, healthy kid, without any issues from all this,” she said. “But we are still searching and hoping for seizure control.”
Lucas now experiences about 10 seizures a month.
“But he’s gone as long as 37 days with no seizures,” Wes said. “And that gives us hope.”
It’s also comforting to know research is ever underway for epilepsy and other neurological conditions, Anna said.
“If you look at science, there is so much change,” she said. “And there are so many exciting possibilities coming down the pipeline.”