Four-year-old Christian Bertotti sits propped on the couch listening to music, his deep blue eyes sparkling. In the kitchen, his mom, Amy Bylsma-Bertotti, pulls out her gram scale and blender to prepare his daily meals.
She pours exactly 18 grams of avocado oil into each of four feeding bottles. She carefully measures out the amounts of steamed vegetables, cooked pork and filtered water the day’s recipe prescribes, then purees the ingredients and divides the puree among the four bottles.
“Everything is weighed up by the gram. It’s very regulated,” says Amy, of Hudsonville, Michigan, a clinical nurse specialist with Spectrum Health.
These meals, fed to Christian through a gastric feeding tube, provide the nutrition his body needs to function and grow.
But in a way medical researchers still can’t fully explain, they also serve as a treatment to alleviate his epileptic seizures.
Fat becomes fuel
Christian, who developed epilepsy at age 2, now follows the strict requirements of the medically monitored ketogenic diet.
Anastasia Luniova, MD, a pediatric neurologist at Spectrum Health Helen DeVos Children’s Hospital, oversees Christian’s care, managing his treatment in collaboration with dietitian Lyndsay Hall, RD.
Since starting him on the ketogenic program, Amy has seen Christian’s seizures decrease dramatically.
At the peak, he would suffer as many as 50 short seizures a day, the worst of them leaving him unconscious. On the ketogenic program, he’ll go weeks at a time with no seizure activity.
“He’s been just doing amazing, amazing on that diet,” Amy said. “He really has responded well.”
The ketogenic diet was developed as an epilepsy treatment at the Mayo Clinic in the 1920s. It fell by the wayside when anti-epileptic medicine emerged in the mid-20th century, but in recent years the diet has caught a second wind. Its comeback was prompted by parents desperate for a solution for children who didn’t respond to anti-seizure drugs.
Christian is one of about 60 Helen DeVos Children’s Hospital patients who use this high-fat, low-protein, ultra-low-carbohydrate diet as a treatment to control seizures.
Ketogenic Diet Clinic
Christian Bertotti is one of the first patients to be treated at the neurology team’s new Ketogenic Diet Clinic at Spectrum Health Helen DeVos Children’s Hospital.
The clinic, led by Anastasia Luniova, MD, and Lyndsay Hall, RD, serves as a one-stop shop for patients using the ketogenic diet for seizure control. Patients can see their neurologist, dietitian, nurse and social worker, as needed, all in one comprehensive, streamlined visit.
“It will allow us as a team to work better together,” Hall said.
Patients on the ketogenic diet typically see the neurology team every three to six months for ongoing monitoring. To learn more about the clinic, call 616.267.2500.
As with many of Dr. Luniova’s epilepsy patients, his treatment plan includes a combination of the ketogenic diet and anti-seizure medications.
In simple terms, the diet works by boosting the level of healthy fats in proportion to proteins and carbs, and forcing the body to use fat instead of sugar as fuel. Imposing this metabolic shift is called putting the body into a state of ketosis. It can work for both children and adults, Dr. Luniova said.
For pediatric patients, initiating the ketogenic diet is a delicate process that requires a three- or four-day admission to the hospital for close monitoring. The neurology team runs daily labs to measure blood nutrient levels, while watching for complications and ensuring the body achieves ketosis.
Conservative reports say the ketogenic diet decreases seizures by no less than 50 percent in at least half the patients who follow it.
Some patients, Dr. Luniova said, will be completely free of seizures. Many can eventually be weaned off anti-seizure drugs.
For her ketogenic patients whose disease won’t let them quit medications entirely, Dr. Luniova can often decrease the dosage.
This reduces the amount of “grogginess and tiredness and withdrawal and fatigue that they have during the day,” she said. “And that alone is a great improvement to their quality of life.”
A delicate balance
Despite his tremendous progress, Christian’s first few weeks on the ketogenic diet were far from encouraging.
Trouble arose the first day in the hospital, when it became clear that his chronically sensitive stomach couldn’t tolerate KetoCal, a pre-formulated liquid used to induce the diet in young children.
Christian could never achieve ketosis if he couldn’t keep his food down, so his mom worked with Hall to shift him to a version of the diet based on blended whole foods. Because he’d tolerated blended foods before, it was worth a try, they thought.
“Lyndsay gave me a recipe, I called my husband, told him to get some salmon, get some vegetables, bring the olive oil, and bring up the blender,” Amy said.
There, on the sixth floor of the children’s hospital, Hall gave her a tutorial on how to measure and blend the ingredients.
Christian kept that first meal down. His stomach has been happier ever since.
Yet, for the first two months, Christian’s seizures persisted. Hall periodically adjusted Christian’s recipes, knowing success with a diet this complex involves trial and error.
Finally, Hall suggested upping the ratio of fats to proteins and carbs in Christian’s diet to nearly 4:1.
That made all the difference.
“Within a week of changing the ratios, the seizures completely stopped,” Amy said. “It was just so exciting.”
At the start of this year, Christian experienced no seizures for more than three months. His family breathed a collective sigh of relief.
In the spring, however, a few seizures broke through. Since then, seizure activity has cropped up whenever his body has been under stress from seasonal allergies or a cold.
He’s not in the clear yet.
“It’s still a challenge,” Dr. Luniova said. “I’m hoping that we’ll find a way to get back to that period where he was seizure-free.”
But even if his seizures don’t evaporate, reining them in with the ketogenic diet can bring a string of benefits. The doctor said these include:
- Better sleep
- Less irritability
- Improved mental focus
- Improved social involvement
“I think it kind of spills into a chain reaction,” Dr. Luniova said. “When you do better, you sleep better; you sleep better, you do better.
“Even when you don’t have complete resolution of seizures, but you see other changes, that makes parents happy and kids happy.”
This assessment rings true for Amy. The ketogenic diet has made Christian more even-keeled and engaged with his three older sisters, his biggest fans.
At clinic visits, Hall sees the changes in Christian, too.
“Overall, even from a cognitive standpoint, he has improved so he’s more aware,” she said. “When I see him, I just can’t believe it’s the same child.”
Day by day
No one imagined when Christian was born that this is how his life would look at age 4.
For his first three months, he had been a healthy, happy baby.
Then, while napping at a cottage in northern Michigan, he managed to roll from his back to his stomach. When his mom peeked in on him, he was unresponsive, deprived of oxygen. She scooped him up and performed CPR while her husband called 911.
After stabilizing him, the local hospital flew Christian to Helen DeVos Children’s Hospital. There, the family learned their baby had suffered extensive brain damage.
The injury would lead to a constellation of difficulties with swallowing, speech, vision, cognition and mobility.
Life since then has been an intense journey through inpatient and outpatient therapies, conventional and alternative treatments.
Today, Christian attends a school for kids with special needs and does hippotherapy to strengthen his trunk and neck muscles. He loves interaction and activity—hanging out with his sisters, taking walks, riding the school bus, going on boat rides.
Though his future is impossible to predict, Amy said she’ll never stop dreaming big for Christian, pushing for the best quality of life possible.
And taking life a day at a time.
“This experience with Christian has taught me that,” she said. “Just take it day by day. Be thankful for what we have today and go from there.”
Dr. Luniova intends to support the family wherever the journey takes them.
“With good care and new treatment options that we may develop in the future, I’m hopeful that we will get him to a better place,” she said—a place “where he will be much more capable of enjoying life … and bringing hope and joy and happiness and love to his family.”