Providence High School Sports Medicine teacher Heidi Johnson has helped her son overcome a so-called incurable disease with a life changing diet.
At 16 months old, Johnson’s son Geoffrey began to experience seizures.
“It started out once or twice a day but then it progressed to multiple times a day,” Johnson said.
As the seizures continued, Johnson took her son to the emergency room, where he was admitted for three days and he continued to have seizures.
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At the end of the three days the doctors diagnosed Geoffrey with epilepsy.
“They handed us a brochure about epilepsy, gave us some medication and sent us home,“ Johnson said.
The only option the doctors gave the Johnsons was medicine to minimize the seizures, but nothing to prevent them. The seizures continued and Johnson took Geoffery to several other neurologists but no one could offer course of action to prevent them.
The Johnsons learned of the ketogenic diet through their own research. According to The Charlie Foundation, the ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control epilepsy in children.
After consulting with several doctors, the family found someone who was willing to try the ketogenic diet with Geoffery. Dietitian Danna Brim informed the Johnson family how difficult the diet would be and that only one-third of the people who do the diet have positive results.
In the summer of 2011, at 18 months, Geoffrey was admitted into the hospital to begin his diet.
“It was really difficult, he lost weight, and he was still having epileptic symptoms,” Johnson said. “The diet can be really dangerous if your body goes into ketoacidosis,” a dangerous and serious condition when levels of ketones in the body are too high. The diet had to be highly regimented to avoid this.
At the end of the week, Geoffrey was allowed to go home. The Johnsons left the hospital with a scale, recipes and dietary restrictions.
The Johnsons had to follow very detailed procedures, including weighing all the food Geoffery was allowed to eat. It was very important to make sure Geoffrey’s ketones stayed regulated.
“We had to put cotton balls in his diaper to see if he had enough ketones,” Johnson said. “Ketones keep him from having seizures.”
Johnson says it was very hard to be prepared at all times and not be able to feed Geoffrey the typical food a child his age eats. It was especially difficult on family vacations and dinners out. Geoffrey could eat no chips, no crackers, no cupcakes. He had to have high fat and low carbs including butter, mayonnaise and oils.
Johnson says it was worth the difficulty to avoid seeing her son have another epileptic seizure.
“Once you experience the fear you never forget it,” Johnson said.
Within a few months, Geoffrey was medication-free and still seizure-free. He continued the diet for two years, and at 6 years old is living a seizure-free life.
This story was written as a part of the Charlotte Observer’s high school journalism Explorer Post.