For the 20-30% of children whose seizures cannot be controlled with medication, dietary therapy can improve both seizure control and quality of life. The ketogenic diet has been used to treat children with intractable epilepsy since 1921, when the original high fat, low carbohydrate protocol was created. The limited intake of carbohydrates triggers the body to enter a state of ketosis by using fats as its primary fuel source. Being in a ketotic state has been shown to reduce seizure frequency, though the mechanisms are not well understood.
About 40% of children with drug-resistant epilepsy who are treated with a ketogenic diet experience a greater than 50% reduction in seizure frequency, and identifying children who are most likely to benefit is important. The diet has been shown to be highly beneficial in epilepsy populations including those with Dravet Syndrome, Tuberous Sclerosis, Infantile Spasms/West Syndrome, Lennox-Gastaut Syndrome, and Doose Syndrome. However, within these syndrome groups, some patients respond to the diet better than others. This extremely restrictive diet can be burdensome to families in both time and financial resources. Families referred to the ketogenic diet program often ask if the diet will work for their child, but factors delineating likely responders from non-responders within epilepsy types are not well understood.
The ketogenic diet can also impact bone health. Previous studies have revealed poor bone mineral density in children on the ketogenic diet, but the long-term effect of diet therapy on bone health is not well understood.
Finally, the ketogenic diet has a profound impact on families. Families report that implementing the diet can be a financial and time burden, as it may require preparation of separate meals for the child and purchasing vitamin and mineral supplements. Families must also coordinate with daycare providers, schools, and caretakers to ensure that the diet is being adhered to, and, in children who eat by mouth and can express food preferences, they need to develop creative ways to make the diet palatable. This study will examine how diet therapy affects family functioning.
Study Objectives:
- To evaluate changes in family functioning over time on the ketogenic diet.
- To identify factors associated with seizure response one year and two years after ketogenic diet initiation
- To examine long-term bone health in ketogenic diet patients
- To study the factors that lead to patients discontinuing diet therapy
Recruitment Status:
Enrolling by Invitation
Participating Sites
