Diet of butter and cream helps Que. girl's rare brain disorder
Published Monday, November 13, 2017 9:55AM EST
Six-year-old Tiana Raposo eats high-fat lunches loaded with mayonnaise, avocados, and cream -- not as part of a fad diet, but on doctor’s orders, to keep her epilepsy at bay.
Four years ago, the Laval, Que., girl was diagnosed with a rare brain condition called anti-NMDA receptor encephalitis, an autoimmune disease in which the body’s immune system attacks proteins called NMDA receptors that control electrical impulses in the brain.
The condition caused Raposo to stop talking and eating, and to waver between being unresponsive and being unusually aggressive.
“At one point, I feared for her life,” Tiana’s mother, Linda Florio, told CTV Montreal. “A bomb could have gone off beside her, she (would) not turn. She did not know who we were. She did not know who she was. It was tough, it was brutal.”
The condition also caused Raposo to experience hundreds of epileptic seizures a day. Though doctors at Montreal Children’s Hospital tried the standard forms of treatment, Raposo’s seizures continued, says her neurologist, Dr. Bradley Osterman.
“We were never able to get the encephalitis under control so there were constantly attacks on her brain from her own immune system,” he explained.
Dr. Osterman advised the family try feeding their daughter a “ketogenic” diet – a high-fat, low-carbohydrate diet that would force her body to burn fat for energy and thus produce an acid in her blood called ketones.
“Ketones can often be metabolized into other molecules that are very protective of the brain. It sort of calms the brain,” Dr. Osterman explained.
Ketogenic diets have long been recommended for children with difficult-to-control epilepsy, but Florio admits she felt strange when first feeding her daughter meals laden with butter and oil.
“I would be like, ‘Ugh, I have to give her this?’ She would get cream in a cup. She would get little butter sticks,” she recalled.
“It was bizarre, it was, but I had nothing to lose at this point. I was ready to try anything.”
Raposo now eats meals containing 4:1 ratios of fat to protein, along with a small amount of fruits and vegetables. She eats lots of mayonnaise, avocados, oil, and other high-fat foods, but no sugar is allowed.
Florio says her daughter’s meals are difficult to prepare, since everything has to be measured and weighed, but she says she noticed the effects of the high-fat meals almost immediately.
“Four weeks into the diet, we saw she slept better,” Florio said. “She was calmer, her eye contact was visible.”
The number of seizures Raposo experienced each day dropped off significantly, too, and although she is still developmentally delayed, she is now walking and talking again.
The ketogenic diet carries many risks, including vitamin deficiencies and kidney problems, and is not recommended for the general public.
But Raposo’s family has high praise for her high-fat menus.
“The diet is a miracle diet,” said Florio. “I'm getting my daughter back.”
With a report from CTV Montreal’s Cindy Sherwin