Six-year-old Tiana Raposo eats very differently from most other children her age.
Her parents feed her a high-fat ketogenic diet, not for weight control or because it’s a fad, but because it’s been useful in keeping her epileptic seizures at bay.
When she was two-years-old Tiana became ill while at daycare. Her mother says she left her Laval home that day behaving like any other toddler. Later on at daycare seemed sleepy, then she fell, hit her head, started vomiting, and became unresponsive.
At the Montreal Children’s Hospital Tiana began having constant seizures. She stopped talking and eating, and became aggressive.
“At one point I feared for her life,” said Tiana’s mother Linda Florio. “I would walk into the room and a bomb could have gone off beside her, she did not turn, she did not know who we were, she did not know who she was. It was tough. It was brutal.”
Her neurologist at the hospital, Dr. Bradley Osterman, finally diagnosed Tiana with Anti-NDMA receptor encephalitis, a rare auto-immune disorder. She also developed a severe type of epilepsy.
According to the website for the Anti-NDMA Receptor Encephalitis Foundation, the disease occurs when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. Those receptors are proteins that control electrical impulses in the brain. They are critical for judgement, perception of reality, memory retrieval and formation, human interaction and the control of autonomic functions such as breathing and swallowing.
“We were never able to get the encephalitis under control so there were constantly attacks on her brain from her immune system,” Dr. Osterman explained.
The standard epilepsy treatments failed, so he suggested the ketogenic diet. Ketones are produced when the body burns fat for energy.
“Ketones can often be metabolized into other molecules that are very protective of the brain,” he explained. “It sort of calms the brain.”
At first, Florio was taken aback by the suggestion but was desperate to save her daughter.
“I had to give her cream in a cup and little butter sticks,” she recalled. “It was bizarre, but I had nothing to lose at this point. I was ready to try anything.”
So Tiana now eats meals containing four grams of fat to one gram of protein, and fruits and vegetables. She eats lots of mayonnaise and other high-fat foods, but no sugar is allowed.
Having to be so precise means her meals are difficult to prepare. Everything has to be measured and weighed, but the diet has been working.
“Four weeks into the diet we saw she slept better,” Florio said. “She was calmer, her eye contact was visible.”
As time went on, Tiana began to flourish.
“It was amazing because we were really at a dark point,” said Dr. Osterman.
The ketogenic diet is risky and is not recommended for the general public. Patients need to take vitamin supplements. But for Tiana and her family, high-fat gets high praise.
“The diet is a miracle diet,” said Florio. “I'm getting my daughter back.”
