As more adults and teenagers with refractory epilepsy are trying dietary therapies to control their seizures, many of them are reporting that they tried the ketogenic diet when they were younger (sometimes even when they were infants!). In some cases, the diet was stopped because of problems (intolerability, or poor seizure control), but, in others, the diet was stopped after 2 years as "planned."
Years later, we were seeing several of these patients coming to us and asking the question, "What would happen if I (or my child) tried the diet again? Would it work the same? Better?" Knowing the commitment required to restart the diet (and these families definitely remembered…), this is a very important question.
Results from this research were just published in the Journal of Child Neurology. We looked at patients who tried a dietary therapy (either ketogenic or modified Atkins) at least 6 months after stopping the ketogenic diet (average 5 years later). We found 26 such patients, most of whom were now teenagers, but a few were adults. These are the reasons for trying the diet again:
- Persistent seizures 66%
- Recurrent seizures after seizure-free 19%
- Status epilepticus 12%
- Retry due to adverse affects the first time 3%
What did we find?
- Overall, the second try of the diet in these 26 patients was not as successful as the first try (77% with >50% response with the first try, 50% with the second try).
- The only factor that helped predict >50% response with the second try was being older during the first try (7.4 vs. 3.9 years). This may tell us that babies trying the diet have a more difficult epilepsy and therefore tougher time later on too.
- Looking at each person case-by-case, what happened the first time is likely to happen the second time! 54% had the same results, 16% were better the second try, 35% were worse.
- Of the 4 who were seizure-free the second time, 3 of them were seizure-free the first time too.
- Only 1 of 6 who had poor results the first time responded the second time.
- Tolerability and side effects were the same the second time, even when trying the modified Atkins diet (which one might think would be better tolerated). 88% had the same tolerability.
These results suggest that trying the diet again, years later, is helpful. What happened the first time with the diet is likely to happen again (good or bad). If the ketogenic diet was a big help for you or your child years ago, and you're thinking of giving it another try, go for it!
Kossoff EH, Doerrer SC, Winesett SP, Turner Z, Henry BJ, Bessone S, Stanfield A, Cervenka MC. Diet Redux: Outcomes from Reattempting Dietary Therapy for Epilepsy. J Child Neurol. 2016 Mar 9. pii: 0883073816636225. [Epub ahead of print]