Demanding diet helps control 10-year-old’s seizures
DULUTH — It’s a good thing Kylie Haxton likes French toast.
“Very much,” the 10-year-old Lakewood Township girl confirms.
Kylie has had French toast, an egg and cream for breakfast almost every morning for the past three years, say her parents, Jared and Jennifer Haxton. The bread, a half-slice, is specially made from coconut flour. It’s delivered to the Haxton home from Florida.
It’s part of a demanding diet that has everything Kylie eats weighed on a scale to make sure the foods she is allowed are eaten in exact proportions.
It’s not easy.
Kylie can’t partake of the sweets a fourth-grade classmate at Lakewood School brings when there’s a birthday. When the Haxtons go out to eat, they bring Kylie’s food with them.
It also has transformed her life.
From the time she was 4, Kylie had been experiencing epileptic seizures 50 to 75 times a day. Over time, Jared and Jennifer were guided to try eight different medicines. Several came with nasty side effects, but none helped.
“We just kept trying and trying,” Kylie recalled.
She has been on the diet for three years and hasn’t had a single seizure during the past two. She takes none of the medications.
Epilepsy, a neurological condition that affects the nervous system, afflicts 65 million people worldwide and more than 2 million in the United States, according to the Epilepsy Foundation. More than 300,000 of the U.S. cases involve children younger than 15.
Often for those children, a ketogenic diet — high in fats, extremely low in carbohydrates with just enough protein — can make a huge difference.
“For many of these children it controls the seizures and helps them to develop mentally,” said Susan Eckert, a dietitian at the Mayo Clinic in Rochester who works with the Haxtons.
“I’ve seen patients where the seizures have halted their ability to develop speech,” she said. “And once the seizures are controlled, all of a sudden these children start talking, and it’s fascinating and rewarding.”
For Kylie, a bright, poised child who likes to write stories and songs, the effects hadn’t been as dramatic. They may not have even noticed the first seizures, the Haxtons say. It was their day care provider who first noticed the spells when Kylie was 4, Jennifer said.
The family talked in detail about Kylie’s story after she came home from school one day last week. With a little help from her mom, she prepared her afternoon snack: 13 grams of apple slices and 28 grams of heavy whipping cream. She measured the portions on a scale.
Jared and Jennifer, both of whom grew up in Cook, sat on an L-shaped couch in the living room of their ranch-style home, with 4-year-old son Ellis in Jared’s lap. Kylie joined them after she finished her snack, and Remington, a golden retriever-puddle-cocker mix, crawled up between Kylie and her mom. The family’s other dog, Buddy, also a golden retriever, sprawled on the floor.
Kylie listened quietly as her parents answered questions, but didn’t hesitate to contribute her thoughts.
‘She would just stare’
The seizures, which began six years ago, quickly increased in number, the Haxtons said. They’d typically last anywhere from 10 to 50 seconds.
“She would just stare,” Jared recalled. “She would stop what she was doing. She would stare off and she would not respond.”
Kylie had her own memories.
“I used to be dizzy a lot, where everything was blurry and I would be walking like this,” she said, demonstrating by walking unsteadily along the front edge of the couch. “I would have to feel around, kind of like I was blind except for I could see everything. It was just really blurry.”
The Haxtons, who lived in St. Cloud at the time, took Kylie to their pediatrician. They were referred to a neurologist in the Twin Cities whose diagnosis of epilepsy took them by surprise. They associated the disease with grand mal seizures, the sort that causes the individual to lose consciousness and suffer violent muscle contractions. The seizures Kylie experience are known as absence seizures.
But the diagnosis was disturbing.
“It is scary,” Jennifer said. “Their whole life flashes in front of your eyes. Will she be able to drive? Will she be able to work? All that stuff.”
It got worse when one anti-seizure medication after another failed to have any positive effect. They learned that with each succeeding drug, the chances of success diminish, Jared said.
One of them caused their normally sweet-natured daughter to become angry and lash out.
“That was kind of my last straw with the medications because they didn’t work,” Jennifer said. “Why have your kid on them?”
A diet from 1924
That’s when they heard about the ketogenic diet. They went to the Mayo Clinic, where they met with neurologist Dr. Katherine Nickels, who specializes in childhood epilepsy, and Eckert, also a pediatric specialist.
The diet’s roots date back hundreds of years, Eckert said, when it was realized that “when you don’t eat it often can help seizures.”
But the much more refined ketogenic diet was designed at the Mayo Clinic in 1924, according to The Charlie Foundation, which advocates for the diet. It has gained more attention since the 1990s, when a boy named Charlie Abraham was placed on the diet and recovered from daily seizures. The Charlie Foundation, named for him, was founded in 1994.
The ketogenic diet mimics what the body does when it is in starvation mode, Eckert explained. With minimal carbohydrates, the body is forced to break down the fats instead — basically changing the body’s fuel source. When the fats are broken down, ketones are produced.
“It appears that these ketones, which we know can power the brain, also can have the effect of reducing or ceasing seizures,” Eckert said.
The diet has to be monitored closely, Eckert said, to make sure the child is getting enough calories, to make sure she is getting enough minerals and vitamins, and to guard against kidney damage.
But out of 10 children placed on the diet, nine will have a noticeable improvement, and seven will have a significant enough drop in seizures to stay with the diet, she said. Sometimes, the improvement happens within days.