Long term efficacy of Ketogenic diet for kids with intractible epilepsy

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KarenB

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Our son, who was seizure free for 11 months on the Ketogenic diet, has recently relapsed. Our Pediatric Neurologist told us he sees this from time to time. So, I thought I'd research studies on this, and post it here, for any other parents who might be interested.

The first study I found was published in Seizure. 2011 Oct;20(8):640-5. Epub 2011 Jul 16. Title: "Long-term follow-up of the ketogenic diet for refractory epilepsy: multicenter Argentinean experience in 216 pediatric patients."

This study followed 216 kids who started the diet between 1990 and 2010 (which would mean not so long term for those who only started in 2010).

Of these 216, 160 were still on the diet when the study ended.

Of these 216:
20.5% became seizure free.
An additional 36% had at least a 75% reduction in seizures.
Thus, 56.5 % had significant reduction in seizures.

Did the seizure control last?
Of those who became seizure free, and then discontinued the diet, 25% had a recurrence of seizures within the next 6 years.
Also, those who had at least a 50% decrease in seizures and then stopped the diet also had a 25% relapse rate.

So, children who have failed at least 2 AEDs and then initiated the diet had a 56.5 chance of seizure freedom or significant seizure reduction, and 75% retain seizure control or reduction for up to 6 years, even when going off the diet.

The study didn't mention relapse rate in patients who continued the diet (I'd personally be interested in that detail).

The study also said that the best success rates were with kids myoclonic-astatic seizures, Lennox-Gastaut syndrome, and West syndrome. Dravet syndrome also responded well.
 
This study was on a certain type of childhood epilepsy.

Pediatrics. 2008 Aug;122(2):e330-3.

Long-term outcome of the ketogenic diet for intractable childhood epilepsy with focal malformation of cortical development.

47 children in the study. All had failed medications. All 47 kids started the diet, and of that number, 22 of the children later had surgery.

After 3 months on the diet, 61.7% of the kids had at least 50% fewer seizures.
44.7% were seizure free 3 months after initiation.

75% of the 21 kids who were seizure free at 3 months completed 2 years on the diet without relapse.

Of the kids who were seizure free after 2 years on the diet, and then ended the diet, 47.6% remained seizure free (mean follow-up for 3 years, 10 months).
 
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