Pediatric Epilepsy: Underutilization of Metabolic Treatments

Key Findings

1. The ketogenic diet (KD) is a safe and effective treatment for epilepsy: The ketogenic diet has been proven as a highly effective intervention for managing epilepsy with up to 50% of children who do not respond to medications, achieving a significant reduction in their seizures, with up to 20% becoming seizure free. This has been demonstrated over dozens of clinical trials and two Cochrane Reviews.
2. The KD has been used in healthcare for over 100 years: The ketogenic diet has a long history of use dating back to the 1920s, with a major resurgence in the 1990s due to its success in treating epilepsy. 
3. The KD works by shifting our body’s main fuel source: The diet shifts the body’s metabolism to a state of ketosis, where fat is burned for fuel instead of glucose.
4. But most health care providers never learn about this intervention: Despite its effectiveness, there are barriers to broader use of the ketogenic diet – including perceived complexity, lack of knowledge, and limited access.
5. What this teaches us: The ketogenic diet is a proven and effective treatment for epilepsy. Its use is limited by the limited number of specialized clinics and a lack of public and patient awareness and advocacy.
6. What we need to do: We must recognize the importance of proven, effective, and safe treatments like the ketogenic diet for chronic diseases like epilepsy, and ensure Americans have access.

Introduction

Chronic diseases, including neurological disorders, are an increasing burden on healthcare systems across the United States. Among the various neurological conditions, epilepsy – a seizure disorder affecting nearly 3.4 million Americans (~1% of population)¹ – remains one of the most pervasive and challenging to manage. The ketogenic diet has top level evidence supporting its safety and effectiveness in treating epilepsy. Despite its proven success, the ketogenic diet has not become a mainstream treatment option. This report delves into the ketogenic diet’s historical application in epilepsy, its effectiveness, and the lessons that can be learned from this intervention to lower the burden of chronic diseases like epilepsy in the U.S. Additionally, it highlights the importance of access to non-pharmaceutical interventions like the ketogenic diet for patients facing chronic disease management.

The Ketogenic Diet: A Brief Overview

The ketogenic diet was first developed in the 1920s as a treatment for epilepsy, particularly for children who did not respond to anticonvulsant medications. The diet works by altering the body’s metabolism, inducing a state of ketosis, where the body uses ketone bodies derived from fat as its primary fuel source instead of glucose. Several mechanisms have been identified in the diet’s anti-seizure activity, including changes to brain energetics, neurochemicals, epigenetics, and the gut microbiome^{2, 3}.

The diet has proven highly effective in treating epilepsy, particularly in cases where conventional medications fail. Clinical studies suggest that up to 50% of children on the ketogenic diet experience a significant reduction in seizure frequency, and roughly 10-20% become seizure-free.⁴ These results are noteworthy when seen in the context of children who did not respond to any other medications. These results have prompted renewed interest in the diet, particularly for pediatric populations where drug-resistant epilepsy is a significant concern.

The Success of the Ketogenic Diet in Treating Epilepsy

The ketogenic diet has been shown to be particularly effective in treating drug-resistant epilepsy, a condition in which seizures cannot be controlled with medication. This is a serious concern, as approximately one-third of people with epilepsy have seizures that are resistant to medication, leaving them with few treatment options.

Clinical trials have repeatedly shown that the ketogenic diet can significantly reduce seizure frequency in about 50% of children with drug-resistant epilepsy, with around 10-20% becoming completely seizure-free. Even in cases where complete seizure freedom is not achieved, many patients experience a significant reduction in seizure activity, which greatly improves quality of life.

Additionally, the ketogenic diet has been shown to have positive effects on cognitive function and behavior in children with epilepsy. It may improve attention, learning, and memory, and can help mitigate the developmental delays that are often associated with drug-resistant epilepsy⁵.

Barriers to Wider Adoption of the Ketogenic Diet

Despite its proven effectiveness, the ketogenic diet has not been widely adopted as a mainstream treatment for epilepsy or other chronic conditions. There are several reasons for this: perceived complexity, medical infrastructure and expertise, socio-cultural barriers, lack of awareness and advocacy.  

At last count, the United States had 99 centres offering ketogenic diet for epilepsy care. There are 6,093 hospitals in the United States⁶, meaning <2.0% of American hospitals offer ketogenic diet therapy for the treatment of epilepsy. Of course, 6,093 includes all hospitals, big and small. But every community of 1000 people will, statistically, have 10 people in it living with epilepsy. So that number should be much higher.

Lessons for Chronic Disease Management

The history of the ketogenic diet in epilepsy offers important lessons for managing chronic diseases in the United States.

• The ketogenic diet’s success illustrates the importance of exploring alternative treatments alongside traditional therapies. An interdisciplinary approach involving doctors, nutritionists, and family support is key to the success of such interventions.
• One of the key barriers to success with the ketogenic diet is the lack of patient and family education. Effective patient education and ongoing support are essential for the long-term success of dietary interventions. Tailored educational resources, counseling, and support groups can improve adherence and outcomes.
• Access to metabolic therapies like the ketogenic diet can offer a viable alternative for patients who do not respond to pharmaceutical treatments. Reducing the barriers to accessing such therapies, through capacity building, better training of healthcare providers and policy support for nutrition-based interventions, is critical.
• As we seek to lower chronic disease rates, we must invest in ongoing research to better understand the mechanisms behind various dietary therapies. The ketogenic diet’s success in treating epilepsy suggests that other chronic neurological and psychiatric conditions could benefit from similar interventions, particularly those with metabolic components.

Conclusion

The ketogenic diet has proven to be an effective, though underutilized, intervention for managing epilepsy. Its history reveals the potential for metabolic therapies to revolutionize chronic disease management. The barriers to broader adoption are not intractable and, if addressed, could help improve the lives of the 3.4 million Americans living with epilepsy.

As we look toward reducing chronic disease rates in America, we must consider the role of metabolic therapies like the ketogenic diet in providing diverse and effective treatment options for patients across the nation.

Dr. Kirk Nylen, a neuroscientist and researcher, has led our understanding of metabolic therapies for epilepsy, demonstrating through personal experience and scientific inquiry the profound impact of ketogenic diets on seizure control and cognitive function in both pediatric and adult populations.