Doctors sometimes use special high-fat diets called ketogenic diets to help children whose seizures don’t respond to regular medicines. Experts from around the world came together to create clear guidelines for nutritionists helping these children. They reviewed scientific studies and asked 111 dietitians about their experiences. The result is the first set of international best practice recommendations to help healthcare professionals safely manage these special diets for children with epilepsy. These guidelines cover everything from deciding if a child is a good fit for the diet to knowing when to stop it.

The Quick Take

  • What they studied: How should doctors and nutritionists best manage special high-fat diets (called ketogenic diets) for children whose seizures don’t respond to regular seizure medicines?
  • Who participated: 111 dietitians (nutrition experts) from six continents who work with children on ketogenic diets, plus a core group of expert advisors who reviewed scientific research
  • Key finding: Experts created the first international guidelines for managing ketogenic diets in children with hard-to-treat epilepsy, based on both scientific evidence and real-world practices from dietitians worldwide
  • What it means for you: If your child has seizures that don’t respond to medicine, these new guidelines help ensure they receive consistent, evidence-based care from their nutrition team, no matter where you live. However, ketogenic diets aren’t for everyone and require close medical supervision.

The Research Details

This project brought together ketogenic diet experts from around the world to create practical guidelines. The team did two main things: First, they carefully reviewed all published scientific research about ketogenic diets for epilepsy, looking at topics from selecting patients to stopping the diet. Second, they surveyed 111 dietitians currently working with children on these diets to learn what actually works in real-world practice.

The researchers combined the scientific evidence with the practical experiences reported by dietitians. When at least 75% of experts agreed on a recommendation, they included it as official guidance. When experts disagreed, they reported the most common practices instead, recognizing that different countries and clinics may do things differently.

This approach ensures the guidelines are based on both scientific proof and what experienced professionals actually do in their daily work with patients.

Before this project, there were no clear international guidelines specifically for dietitians managing ketogenic diets in children with epilepsy. This created confusion and inconsistency in care around the world. By combining scientific research with expert opinion from six continents, these guidelines help ensure that children receive safe, consistent, and effective nutrition care regardless of where they live. This is especially important because ketogenic diets require careful monitoring and adjustment.

This review is strong because it: (1) included expert input from six continents, ensuring global perspective; (2) combined scientific literature review with real-world survey data from 111 practicing dietitians; (3) was transparent about where experts agreed versus disagreed; (4) focused on practical implementation, not just theory. The main limitation is that it reflects current practice rather than proving which approach works best—some recommendations are based on expert consensus rather than high-quality scientific studies.

What the Results Show

The research team successfully created the first international best practice recommendations for dietitians managing ketogenic diets in children with epilepsy. These recommendations cover the entire journey: how to decide if a child is a good candidate for the diet, how to start and adjust it, what to monitor during treatment, and when and how to stop the diet.

The guidelines show that while there is general agreement on many core practices among dietitians worldwide, there is also variety in how different countries and clinics implement ketogenic diet therapy. This variation reflects differences in healthcare systems, available resources, and local practices.

The recommendations emphasize the importance of close teamwork between dietitians, doctors, and families. They highlight that ketogenic diets require careful planning, regular monitoring, and adjustments based on how well the diet works and how the child tolerates it.

These guidelines are designed to be practical and usable by nutrition professionals in different settings around the world, acknowledging that one-size-fits-all approaches may not work everywhere.

The survey revealed important insights about international dietetic practice: Different countries use slightly different versions of the ketogenic diet (classical versus modified), and there are variations in how strictly dietitians monitor and adjust these diets. The guidelines acknowledge these differences while identifying core principles that should be consistent everywhere. The research also highlighted the importance of patient and family education, as understanding the diet is crucial for success.

This is the first comprehensive international guideline specifically for dietitians managing ketogenic diets in epilepsy. Previous guidance existed but was often scattered across different countries or focused on medical aspects rather than nutrition management. These new recommendations fill that gap by bringing together global expertise and creating a unified framework that respects local variations while establishing common standards.

The guidelines are based on expert consensus and current practice rather than high-quality scientific studies proving which approach works best. Some recommendations reflect what most dietitians do rather than what research proves is most effective. The survey included 111 dietitians, which is a good sample, but may not represent all dietitians worldwide. Additionally, the guidelines focus on children and young people, so they may not apply to adults with epilepsy.

The Bottom Line

If your child has seizures that don’t respond to regular medicines, ask your doctor about whether a ketogenic diet might help. If recommended, work with a dietitian experienced in ketogenic diet therapy who is familiar with these international guidelines. The diet requires commitment from the whole family and close monitoring by your healthcare team. Expect to work with your team regularly to adjust the diet as needed. (Confidence: High for safety and monitoring protocols; Moderate for effectiveness in individual cases)

Parents and caregivers of children with drug-resistant epilepsy should know about these guidelines. Healthcare professionals—especially dietitians, neurologists, and pediatricians—should use these recommendations when managing ketogenic diet therapy. These guidelines are specifically for children and young people, not adults. The diet is not appropriate for everyone and requires medical supervision.

Some children see improvements in seizures within weeks of starting a ketogenic diet, while others take several months to respond. The diet typically requires 3-6 months of careful monitoring before deciding if it’s working well enough to continue. If the diet helps, families may continue it for years, with regular check-ins with their healthcare team.

Want to Apply This Research?

  • Track daily food intake against the diet’s specific fat-to-carbohydrate ratio, seizure frequency and severity, and any side effects or tolerance issues. Record weekly weight and monthly lab work results if recommended by your doctor.
  • Use the app to log meals before eating to ensure they match the prescribed ketogenic diet ratio. Set reminders for scheduled check-ins with your dietitian and doctor. Track seizure patterns to share with your healthcare team during appointments.
  • Maintain a long-term log of diet adherence, seizure activity, growth measurements, and lab results. Review trends monthly with your dietitian. Use the app to prepare for medical appointments by having organized data about what’s working and what challenges you’re facing.

This research provides professional guidelines for healthcare providers managing ketogenic diets in children with epilepsy. Ketogenic diets are medical treatments that should only be started under close doctor supervision. Do not start a ketogenic diet for your child without consulting with a neurologist and experienced dietitian. These guidelines are informational and do not replace personalized medical advice. Individual results vary, and what works for one child may not work for another. Always work with your healthcare team to monitor safety and effectiveness.