CUBA CITY—Food is being used to treat a Cuba City teen’s seizures.
Tom White, 16, the son of Todd and Lisa White and a sophomore at Cuba City High School, was hit by a car while riding his bike when he was 5 ½ years old and suffered traumatic brain injury. Tom’s seizures weren’t visible until October 2011 when he had a grand-mall that lasted over 40 minutes. Since then, Tom has been averaging two to three seizures a day, each lasting 20 to 40 seconds.
“We have been exploring various medications and Tom is currently on three different seizure medications which haven’t led to total seizure control,” Lisa White said. “At the beginning of 2016 we started exploring more options for Tom.”
Lisa White said the pediatric neurologist from UW Health ordered a current MRI to determine if brain surgery was an option. In June they learned this was not an option as there was not one central focal point creating the seizures. In researching more options, they found that the ketogenic diet had been successful with children when medication wasn’t.
According to UWHealth.org, ketogenic diets are low-carbohydrate, high-fat diets that alter the body’s metabolism to produce ketones, which puts the patient into a state called ketosis. The state of ketosis has been linked to reduced seizure frequency in some adults with epilepsy. Dr. Elizabeth Felton, neurologist at UW Health, said 50 percent of patients using the ketogenic diet have a 50 percent or greater seizure reduction and approximately 10 percent of the patients are seizure-free.
“In discussing this option with UW Health, we learned they had recently hired Dr. Felton and she had the qualifications to administer this diet on approved candidates,” Lisa White said. “Tom submitted his request and it was approved at the end of July. Tom met with Dr. Felton for the first time on Aug. 15 and he passed her test in order to enter her ketogenic program at the beginning of September.”
The ketogenic diet, a modified version of the Atkins diet, uses a four-to-one ratio of fat grams to carbohydrates. The diet is mostly fat and requires close monitoring of cholesterol. It is recommended that patients limit themselves to 10 to 20 grams of carbohydrates. The diet differs from the Atkins diet in that sugar substitutes need to be eliminated as they can have some carbohydrates and the goal is not weight loss. Foods encouraged in this diet are eggs, meats, avocados, oil and butter. Patients need to be careful with fruits and vegetables as they can sometimes contain carbohydrates. Substitutes can be found for most foods, including cauliflower for potatoes and rice and nut flours for breads.
“Fatty foods taste pretty good,” Felton said. “They just have to get away from pairing their food with the traditional bread or potato. They have to move away from carb-heavy items.”
Tom started the ketogenic diet in the middle of September to allow him time to get into ketosis by Oct. 1, which he did. Tom’s doctor and nutritionist outlined a diet that allows him to have 15 grams of carbohydrates a day. He is also required to drink at least 88 ounces of water a day.
“Early on Tom has embraced this change in his diet and has done well implementing the new foods as well as increased water intake that had been hard for him to do previously,” Lisa White said. “Tom has had positive results with the amount of energy during the day, feeling better overall, and another positive side effect was some weight loss.”
His mom said she noticed a change when he wanted to stay up later than his normal 7:30 or 8 p.m. bedtime.
“He is now able to help both the girls and boys basketball teams by taping their games, which requires him to travel with the teams,” Lisa White said. “Prior to this diet he wouldn’t have considered it as he would have been too tired to be out that late.”
The diet has come with some complications.
“Tom had low sodium that was unexpected early on when implementing the diet,” Lisa White said. “This has taken about two months to resolve by reducing one of his medications and also increasing the amount of salt in his diet. As of the new year Tom has stabilized his sodium intake so we can begin tracking his results for consistency.”
Typically Tom’s age group has not been successful at implementing and staying on this diet for the required duration. They request a minimum of six months to determine if Tom would see the reduction in seizures and, if so, expect that he will need to maintain this diet for a total of three years.
Tom records all food and water intake, his ketosis levels, weight and seizure activity daily, then submits a weekly report for the team at UW Health to review and provide suggestions.
All patients in this program have to monitor his or her ketones at home using a urine dipstick. Felton sees the patients for regular clinic follow-up and to monitor certain labs such as the cholesterol panel. Typically cholesterol levels increase the first few months, plateau and then decline after the first year on the diet.
Tom has become very involved in the meal planning and preparation process. He researches recipes with fewer than five carbohydrates per portion. Typically on Sundays he prepares his meals for the coming week’s breakfasts and lunches.
“Tom loves to cook so he is also very involved with each meal and assisting us,” Lisa White said. “Having the ingredients and a plan for the week make meal times go smooth. The most difficult part of the diet comes with eating out. This would be Tom’s least favorite part of the diet, so we try to limit this as much as possible which is also a change in habit.”
Todd and Lisa White have been following Tom’s new diet during meals served at home to make it easier for him.
“This has been a very positive change for all three of us,” Lisa White said. “We have been very appreciative of the staff at Cuba City High School in helping Tom with this change, especially during the holidays.”
The school’s cook, Janet Loeffelholz met with Todd White to learn about Tom’s diet restrictions and provide options for Tom on days when he forgets his lunch.
“Then Mr. [Jason] Holzemer requested one of Tom’s favorite recipes and made it during the holidays,” Lisa White said. “Sounds like the buffalo chicken jalapeno recipe was a hit with the other students, so Mr. Holzemer posted the recipe for others to make at home. These are the keys to Tom’s success; having the support is greatly appreciated.”
Diet was first used more than 100 years ago when it was realized that starvation helped reduce seizures. In 1921, it was determined that the state of ketosis, when the body uses fat for fuel, was what reduced seizures. The ketogenic diet featuring a low amount of carbohydrates was introduced. New medications became available to assist with epilepsy and the diet treatment made a comeback in the 1990’s, especially for children with epilepsy.
The ketogenic diet is very strict and can be hard for some people and families to follow. Felton said some patients have trouble sticking with the dietary therapy all of the time.
“If they deviate from the carbohydrate limit and come out of ketosis they are at risk for having a seizure,” Felton said.
Felton said the dietary therapy isn’t perfect for all patients. Many of the patients who try the ketogenic diet have tried and failed many medications for seizures and their chances of getting a better result with a different medication is low.
“We will be hearing about food as medicine more in the upcoming years,” Felton said. Food is already being used to treat diabetes, heart disease, irritable bowel syndrome and gluten intolerance. “What we eat has a significant impact on our overall health.”