Eight-year-old Madeline Mon of Chatham experienced her first seizure shortly after she turned six; a second one would follow two weeks later.

After receiving an official diagnosis of epilepsy and being prescribed medication, however, her condition continued to worsen. "Madeline had four tonic-clonic convulsive seizures 1-2 weeks apart followed by 20-40 staring seizures per day," said her mother, Kristin Mon.

"She was getting toxic and twitchy from the medication and was still having seizures; I remember having to carry her to the bathroom because she wasn't functional."

Desperate to help their daughter, the Mons brought her to NYU Langone's Comprehensive Epilepsy Center in New York City, where a team of experts tested Madeline to determine her exact type of epilepsy and then proceeded to recommend an unexpected alternative to medication - a special 'epilepsy diet' high in fat and protein that had produced improvement for others with Madeline's type of epilepsy.

Madeline responded quickly to the treatment, said her mother. "Within a few days of adopting the diet two years ago, she had no more seizures and has been completely seizure-free since that time," she said.

An Alternative Approach

Affecting upward of one percent of the population, epilepsy is a neurological disorder that's characterized by the presence of repetitive seizures and abnormal brain waves, said pediatric neurologist Judith Bluvstein, Director of the Dravet Center at NYU Langone's Comprehensive Epilepsy Center.

There isn't one single type of epilepsy but rather multiple types depending on a person's age, family history, presence of a metabolic disorder, or an unknown cause, those seizures can take a variety of forms., Bluystein noted. "A large number of seizures are mild and go undetected, while others can involve staring spells that may cause teachers to think a student is daydreaming, big convulsive (grand mal) seizures, 'focal' seizures that only affect one limb or a finger, or seizures that occur only when sleeping," she said.

Regardless of the form, however, there is no cure for epilepsy so far, only treatment for the symptoms.

After the Mons brought Madeline to NYU Langone for a second opinion in early 2014, Bluvstein said they did a two-day long EEG evaluation to confirm the diagnosis of epilepsy. She said that in this case, it was a diagnosis she was actually pleased to deliver because she thought that the epilepsy diet would be ideal for Madeline.

Compared to standard medications used to treat the disorder, the epilepsy diet has a completely different mechanism that it shifts the way the brain gets fuel, said Bluvstein. She explained that while the body and brain typically rely on glucose for energy, the diet effectively removes that source by severely limiting the consumption of carbohydrates. Instead, it uses protein and fat to supply fuel, calories, and a sense of satiety, or fullness.

Bluystien said there are historical references indicating that fasting was known to reduce epileptic fits as far back as biblical days. This so-called 'ketogenic' approach, which avoids burning carbohydrates as fuel, was popularized again in the 1950s in a study by Johns Hopkins University and then again in the 1990s by the Charlie Foundation.

"To some extent, however, it's still not clearly understood why this diet works," Bluvstein conceded. "It's believed that by limiting glucose as an energy source through the removal of carbohydrates, the body will be restricted to performing only the most necessary functions, which don't include 'extraneous' activities such as seizures," she said. "In other words, the diet helps ensure that there's no extra glucose laying around for 'naughty' activity."

A Game of Numbers

In a typical day in the Mon household, Madeline is busy counting. "She can have exactly 10 (grams of) carbs a day, which means no bread, pasta, rice, or any significant quantity of most fruits and vegetables," her mother said, adding that 10 raspberries equals one carb.

What she can have? Lots of protein supplied by grilled chicken, meat, and fish as well as 50-100 grams of fat every day, which is provided by a daily dose of bacon or chicken sausage and eggs for breakfast. Some other of Madeline's favorite menu items, as prepared by her creative mom, include quesadillas made with low-carb tortillas and zero-carb cheddar cheese (since milk has carbs) and 'special' low-carb pancakes.

"Neither the diet nor the meds work for everyone and the diet was definitely hard for Madeline in the beginning because she wanted the foods she was used to," said Kristin. "But there are no side effects from the diet except high cholesterol," a condition that's being closely monitored by neurologists and clinical dietitians at NYU Langone.

"Madeline gets upset about the diet every once in a while but she follows the rules because she knows it allows her to be independent. We've found suitable alternatives to things she used to eat and she's gotten used to different tastes," she said, noting that Madeline isn't currently on any vitamin supplements.

"This isn't something that should be undertaken alone," Bluvstein said. "It's an artificial diet that deprives patients of certain things, so it needs to be supplemented, particularly in children, or it could arrest development and lead to cardiac and kidney issues. Also, she said, patients can't cheat; they must embrace the diet fully for it to be effective. But once carefully controlled, there are no cognitive effects for patients with regard to energy or memory, she added.

"Research has shown that for some epilepsy patients, the higher ketone levels associated with this diet can lead to improved seizure control and it's definitely an option worth exploring when no other treatments are controlling a child's epilepsy," agreed Andrea Racioppi, associate director of the Trenton-based Epilepsy Foundation of New Jersey. With a recent Institute of Medicine Report revealing that 1 in 26 Americans will develop some form of epilepsy in their lifetime, she said they're seeing this diet being used more and are excited that an increasing number of parents are being educated about this non-invasive option.

Now in the second grade, Madeline a "super-smart, happy little girl" who loves to sing and be onstage, her mother said. She took part in a musical theater class that recently performed at the Paper Mill Playhouse in Millburn, an endeavor that wouldn't have been possible two years ago.

"Madeline wasn't herself with seizures or on medication and we were worried that we'd lose our happy kid," said Kristin of her daughter, who remains on a low dose, sugar-free version of the medication Zarontin to control her staring seizures without adding carbs to her diet. Doctors say she may naturally grow out of her epilepsy after puberty. "On this diet, she's seizure-free without side effects but can be herself,' her mother said. "This works and we're just going to stay the course."