Researchers studied how to safely stop the ketogenic diet (a special high-fat, low-carb diet) in children with epilepsy. They looked at 57 children who had started and stopped this diet between 2016 and 2022. About half of the children had fewer seizures on the diet, and a quarter became seizure-free. However, when stopping the diet, 62% of children experienced more seizures or needed changes to their seizure medications. The study found that children who didn’t have problems while stopping the diet were more likely to stay seizure-free one year later. The researchers suggest that doctors should create personalized plans for each child based on how well the diet worked, brain wave patterns, and how many medications the child takes.

The Quick Take

  • What they studied: How to safely stop the ketogenic diet in children with epilepsy and what happens to their seizures when they do
  • Who participated: 57 children with epilepsy who started the ketogenic diet and then stopped it between 2016 and 2022 at a major epilepsy treatment center
  • Key finding: About 6 out of 10 children had more seizures or needed medication changes when stopping the diet, but children who had smooth transitions were more likely to stay seizure-free after one year (65% vs. 30%)
  • What it means for you: If your child is on the ketogenic diet for seizures, stopping it needs to be done carefully and slowly. Working with your doctor to create a personalized plan based on your child’s specific situation may help prevent seizures from coming back.

The Research Details

This was a retrospective study, which means researchers looked back at medical records of children who had already started and stopped the ketogenic diet. They examined records from 2016 to 2022 at a specialized epilepsy center. The researchers collected information about how long children stayed on the diet, how quickly they stopped it, their brain wave test results (EEG), their seizure patterns, and what medications they were taking.

The study excluded children who had a specific genetic condition called GLUT1 deficiency, children still on the diet, and those who weren’t followed for at least one year after stopping. This helped the researchers focus on children who had completed the full process of starting and stopping the diet.

The researchers defined success as children who had at least 50% fewer seizures while on the diet. They then tracked what happened to these children when they stopped the diet, looking for seizure increases or medication changes.

Understanding how to safely stop the ketogenic diet is important because many families want to know what happens next after their child has been on it for a while. This study helps doctors learn which children are more likely to have problems when stopping and what factors make the transition smoother. This information can help doctors create better plans for each individual child.

This study looked at real patient records from a specialized epilepsy center, which is a strength because these doctors have lots of experience with the ketogenic diet. However, because it’s a retrospective study looking at past records, doctors may have recorded information differently over time. The study size of 57 children is moderate, so the findings may not apply to all children everywhere. The researchers were careful to exclude certain groups to make the results clearer, but this also means the findings may not apply to every situation.

What the Results Show

Among the 57 children studied, 49% responded well to the ketogenic diet (meaning they had at least 50% fewer seizures), and 25% became completely seizure-free while on the diet. When children began stopping the diet, 62% experienced either more seizures or needed changes to their seizure medications during the weaning process.

The researchers found that certain factors made it more likely a child would have problems when stopping the diet: if they had only been on the diet for a short time, if they stopped it too quickly, if they were taking many seizure medications, or if their brain wave tests (EEG) showed abnormal patterns before stopping.

One year after stopping the diet, children who had smooth transitions without seizure increases or medication changes were much more likely to still be seizure-free (65% of them) compared to children who had problems during the stopping process (only 30% of them). Interestingly, among children who had responded well to the diet, how fast they stopped it didn’t seem to matter as much as other factors.

The study found that children taking multiple seizure medications had harder times stopping the diet. Children whose brain wave tests showed problems before stopping the diet were also more likely to have seizures return. The length of time a child stayed on the diet seemed important—those on it longer generally had better outcomes when stopping.

This study adds to what doctors already know about stopping the ketogenic diet. Previous research suggested that stopping too quickly could cause problems, and this study supports that idea. However, this research shows that speed alone isn’t the whole story—other factors like how many medications a child takes and their brain wave patterns are equally or more important.

This study looked at records from the past, so doctors may not have recorded all information the same way. The study only included 57 children from one specialized center, so results might be different in other hospitals or countries. The study didn’t randomly assign children to different stopping methods, so we can’t say for certain that one method causes better outcomes than another. The researchers recommend that future studies should follow children forward in time and test different stopping strategies to find the best approach.

The Bottom Line

Based on this research, doctors should create personalized plans for stopping the ketogenic diet that consider: (1) how well the diet worked for each child, (2) the child’s brain wave test results, (3) how many seizure medications the child takes, and (4) stopping the diet slowly rather than quickly. These recommendations have moderate confidence because the study was well-designed but involved a limited number of children.

This research is most relevant for families of children with epilepsy who are on or considering the ketogenic diet, and for doctors who manage children with seizures. It’s particularly important for children whose seizures haven’t responded well to medications. This research may not apply to adults with epilepsy or children with the specific genetic condition GLUT1 deficiency.

Based on this study, children who stop the diet smoothly may maintain seizure control within the first year. However, some children may experience seizure increases during the stopping process, which could take weeks to months depending on how slowly the diet is reduced.

Want to Apply This Research?

  • Track daily seizure count and medication doses during the weaning period. Record the date, time, type of seizure, and any medication adjustments. Also note diet changes (percentage of ketogenic diet being followed) to see patterns between diet reduction and seizure activity.
  • Work with your doctor to create a slow, gradual weaning schedule rather than stopping the diet suddenly. Use the app to monitor your child’s seizures daily and share reports with your doctor at regular check-ins to adjust the weaning plan if needed.
  • Continue tracking seizures and medications for at least one year after stopping the diet. Set monthly reminders to review trends with your doctor. If seizures increase during weaning, the app can help document this so your doctor can decide whether to slow down the weaning process or adjust medications.

This research describes what happened in one study of 57 children and should not replace personalized medical advice from your child’s doctor. The ketogenic diet and how to stop it should only be managed under close medical supervision. If your child is on the ketogenic diet for seizures, talk with your epilepsy specialist before making any changes. Every child is different, and what works for one child may not work for another. This information is educational and not a substitute for professional medical diagnosis, treatment, or advice.