Eleven-year-old Naomi suffered from seizures, movement disorders, staring spells and even bouts of paralysis on half of her body for nearly five years. From the time she was 3 until she was 8 years old, her mother and father, Shannon and Steve, searched tirelessly for answers.
“We visited multiple neurologists, doctors and naturopaths, but only received partial diagnoses,” Shannon explains.
Naomi was put on a number of different seizure medications that were unable to completely stop her seizures, making it a very long road for both Naomi and her entire family.
“I just remember a blank part of my life–it was all black,” Naomi recalls.
In January 2014, Naomi had an appointment with neurologist Steven Parrish Winesett, M.D., at Johns Hopkins All Children’s Hospital, where they finally received a definitive answer. She was diagnosed with GLUT1 Transporter Deficiency Disorder, a rare neurological disorder. There are only about 500 diagnosed cases known in the world.
“It was a huge relief because for so long we were just fighting this invisible monster,” Shannon says.
Now Naomi is seizure-free under the care of Winesett and Stacey Bessone, R.D., a registered dietitian within Johns Hopkins All Children’s Institute for Brain Protection Sciences. She is an expert in a special diet used to treat childhood epilepsy and neurological disorders called the ketogenic diet, which is Naomi’s course of treatment. It is often a viable option when a patient has failed two seizure medications.
“Not a lot of medical centers offer diet therapy,” Bessone says. “Patients are traveling in from all over Florida to be seen here. They are quite motivated by the time they come to the clinic.”
The ketogenic diet is a high-fat, adequate protein and low carbohydrate way of eating in which 87 to 90 percent of the caloric intake comes from fat. The high-fat food that Naomi eats is metabolized into ketone bodies, which the brain uses as a fuel source instead of glucose. Naomi’s diet follows a ratio of three grams of fat to every one gram of carbohydrate and protein.
“She can still eat a majority of foods as long as the whole meal is in ratio,” Shannon explains. “One of her favorite meals is loaded mashed potatoes. It has a little bit of potato, bacon and cheese, and I put heavy whipping cream and butter in it to make it fattier.”
About 50 percent of patients on the ketogenic diet will have a 50 percent reduction in seizures, and of that, 15 percent will be seizure free like Naomi. In comparison, when a patient is put on another medication, they may only have a 30 percent reduction in seizures with only a five percent chance of becoming seizure free.
“To see the results, it’s amazing,” Shannon says. “It’s great that we are able to treat my daughter with food. She’s back to our little girl.”
Bessone and Winesett also work in close partnership with Eric Heath Kossoff, M.D., at Johns Hopkins Medicine in Baltimore, Maryland, who is a world leader in the ketogenic diet. Bessone routinely consults with the team in Baltimore via virtual conferences to provide world-class, personalized care for each patient.
To learn more, visit the Johns Hopkins All Children’s Institute for Brain Protection Services.