More than a year ago, Eli experienced his first seizure, but it was not his last.
“A good day was 100 seizures, a bad day was 600 seizures,” said Susanne, of rural Lafayette.
Eli experienced different types of seizures. Most of them would make him twitch his eyes and stare blankly. Others were more violent, forcing the toddler to thrust himself forward, hitting objects in his path. Still others made him convulse.
“If he wasn’t restrained, he had to wear this,” Susanne said, lifting up a helmet. “People would stare at him.”
When he ate, he had to be restrained. “There was no other way to prevent him from hitting his head,” Susanne said.
After seizure medications failed, Susanne turned to the ketogenic diet, a therapeutic high fat diet with minimal carbohydrates. But this isn’t your ordinary Atkins diet. It requires hospital oversight and parents who use it to treat their epileptic children have to be vigilant about every ounce of fat, protein and carbohydrate that goes into the child’s mouth.
“It works only for certain types of epilepsy, (such as) a child who has hard-to-control seizures, and is resistant to two or three medications, if not more,” said Dr. Hema Patel, a pediatric neurologist with Riley Hospital for Children at Indiana University Health in Indianapolis. “It does not work in all types of epilepsy patients.”
Although the diet was originally developed more than 80 years ago, its use declined as medications to prevent seizures were developed. A resurgence occurred after Jim Abrahams made a TV drama in 1997, featuring Meryl Streep, about the successful use of the diet to control seizures in a child. Now most children’s hospitals offer the diet, including Riley Hospital for Children, Peyton Manning Children’s Hospital at St. Vincent in Indianapolis and Lutheran Children’s Hospital in Fort Wayne.
Patel said Riley has been offering the diet for at least 10 years as an alternative form of treatment.
Typically, the body runs on glucose obtained from food, but when the body is deprived of food it burns stored fat. The ketogenic diet keeps this process going by forcing the body to burn fat instead of carbohydrates.
About 80 to 90 percent of the child’s calories come from a mix of saturated (animal) and unsaturated (vegetable) fats, 10 to 20 percent protein and a minimal amount of carbohydrates, said Laura Kenny, pediatric dietitian with Riley Hospital.
An example of a typical lunch for a child on this diet would be chicken salad with avocado on the side and one ounce of heavy cream to drink, said Beth Zupec-Kania, nutrition consultant to the Charlie Foundation, a ketogenic diet advocacy group.
Zupec-Kania said the diet forces the body to be in a state of ketosis, which simulates starvation or fasting.
However, the children are not actually fasting. “We are tricking the body, so the body is forced to use the fat,” Kenny said.
Kenny said the children get enough calories for growth and develop from the diet. They also take vitamin and mineral supplements to offset any nutritional deficiencies, she added.
However, there are risks involved, which is why the child’s diet and its effects on the body have to be highly monitored.
The most common side effects include kidney stones, elevated cholesterol levels, higher risk of infection and risk for osteoporosis.
But Kenny said these side effects affect only about 10 percent of patients and can be controlled with changes in the diet.
Most patients also are weaned off the diet within about two years of starting it because the longer they are on it, the more susceptible they become to side effects, she said.
But while they are on it, the objective is to create a high level of ketones, or fat byproduct, in the blood and subsequently in the brain, which for some children stops seizures.
“We don’t know why,” Patel said. Among patients who experience generalized epilepsy, where patients have damage in multiple parts of the brain due to some type of brain injury, about 60 percent will show some improvement and about 20 percent will show significant improvement, she said.
It even has a healing effect for some children. As they are weaned off the diet, they no longer experience seizures.
That is the scenario for young Eli. At 3 years old, his development had regressed. He was back in diapers, and couldn’t talk or walk.
“I grieved my son,” Susanne said. “I thought he was gone.”
But after about four months on the diet, Eli is back to normal, enjoying driving around in his toy Jeep, loving to farm with his father and playing on his mom’s iPhone.
“It was like a fog had lifted off of him,” his mother said. “He was back. We were rejoicing.”