A person that started on ketogenic diet back in 1945
epilepsy.com/article/2008/12/remembrance-life...
epilepsy.comPosted Jul 21, 2014, 4:12 PM UTC
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epilepsy.comorange- thank you for posting this article and the review below. Doctors were skeptical about the keto diet for 50 years after the first successes at John's Hopkins (check out the movie "First Do No Harm", which was instrumental in increasing awareness about the diet), but since that time, thousands of other kids have used the diet successfully, and there are now more options for starting very low-carb diets. This is now a very well accepted medical therapy for children with treatment-resistant epilepsy; although, like everything else in epilepsy, even with perfect use, it doesn't work for everybody.
It is not at all uncommon for childhood-onset seizures to fail to respond to medicines (back then, there was only phenobarbital, but we see this even today), then to resolve on their own. It is also not uncommon for severe childhood-onset treatment-resistant epilepsy to go into remission with the diet, then continue in remission after coming off a few years later. It is standard practice for the diet to be taken off a few years after starting, especially when seizure freedom has been obtained; however, this has never been subjected to prospective research, as far as I know.
There have been limited successes in keto diet in adults, in large part because you can't prevent most adults from going to the grocery store and getting their own food when they don't like what is being served at home.
What I really want to know: how does it work? Can it be put in a pill? There are a few leading theories about this, but none have yet resulted in tangible new and easier therapies.
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The better question which should be asked is would these children have outgrown their condition anyway? It's not uncommon at all for children to outgrow their epilepsy. The same can't be said for adults.
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That's a great question, but first let me pick a bone. Children with so called "benign" epilepsy syndromes may outgrow their seizures, but we now know that they often don't outgrow their "condition"- that is, the many co-morbidities of childhood epilepsy that lead to poorer psychosocial outcomes in adulthood. If you are interested in reading further on this topic, I can point you to a few good scholarly articles.
It is widely accepted at this point (based on animal models) that many children outgrow seizures because of transient expression of certain abnormal genes during some stages of development, but exactly which genes is a much more complicated question. There are molecular pathways (e.g. JAK-STAT, MTOR) that are extremely important in epileptogenesis and initiation of seizures. Outside of major syndromes that cause aberrations in single genes in this pathway (more the exception than the rule), it has now been shown that the majority of people with epilepsy have abnormalities of many genes in several of these pathways with the final result being epilepsy and co-morbid developmental issues (the discussion on these developmental issues, which don't resolve as often as seizures themselves, is even more complicated).
Unfortunately, there are literally millions of gene combinations that can lead to transient seizures and "benign" epilepsy syndromes, and even similar clinical presentations are caused by differing combinations, thus creating challenges for the development of broadly effective targeted gene therapies for any particular part(s) of one or more pathways. This is a hot topic right now in molecular neuroscience.
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An anecdote does not constitute scientific proof. I'm tired of this argument.
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And the plural of anecdote is not "data". ;)
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For the sake of others:
1 - This is one case of the early treatments of epilepsy with the ketogenic diet.
2 - The study the Dr. Livingstone published encompassed 400 children.
3 - Ketogenic diet is an approved therapy: see
Henderson, C. B., Filloux, F. M., Alder, S. C., Lyon, J. L., & Caplin, D. A. (2006). Efficacy of the ketogenic diet as a treatment option for epilepsy: meta-analysis. Journal of child neurology, 21(3), 193-198. Link.
Data indicate that children remaining on the diet for more than 3 months have approximately a twofold chance of sustaining improved seizure control. Children with generalized seizures have a greater chance of obtaining both improved seizure control and/or antiepileptic drug reduction.
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i am on keto right now, and its the only reason why im not having seizures every day.
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Excellent, I'm happy that it's working for you. You are literally one out of a six thousand. It's not statistically significant in the scientific sense and there are many reasons a change in diet could be helping that are unassociated with Keto, but anyone overcoming their epilepsy is a reason to celebrate.
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Hahah that's not true at all, but thank you.
"About a third of children who try the ketogenic diet become seizure free, or almost seizure free.
Another third improve but still have some seizures.
The rest either do not respond at all or find it too hard to continue with the diet, either because of side effects or because they can't tolerate the food." source: http://old.epilepsyfoundation.org/about/treatment/ketogenicdiet/chanceofsuccess.cfm#.U9Qss4BdVgU
So, buck up and try the diet. Who knows what could happen.
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Yeah, that's for juvenile myoclonic epilepsy. About a third grow out of it with proper medication as well. And JME accounts for a very small percentage of epileptics. But hey, I'm only a neuroscienist. What do I know, right?
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And only used it for a couple years. Sounds like a normal case of outgrowing seizures to me, nothing to really do with the diet at all.
It is not clear that it was only two years: somewhere else they had mentioned that he maintained it longer (Again, can't find the link). Livingston went to publish some results, lasting for longer than that, and indicated that some of the kids kept on the diet, even though compliance was difficult to maintain outside of a clinical environment.
I agree that the details of Mr. White's case are not clear and memory of events 45 years before is sure to be rife with error.
I have seen more than 10 cases of children with medically intractable absence seizures occurring tens to hundreds of times per day that suddenly stop within days of starting the diet (with 24 hour EEG before and after showing a clear response). This is not the natural history of any type of epilepsy featuring absence seizures.
Livingston's results were excused for a long time on the basis of arguments such as this. His results have been replicated so many times now in controlled experimental settings by so many other researchers that it is absolutely undeniable that the diet is at least as good as any other medication on the market (which are subject to the same types of studies) for many epilepsy syndromes, and much better than medications for some epilepsy syndromes that feature absence seizures, such as Doose syndrome.
This article serves as a good reminder that much of what is now accepted as standard in epilepsy care started with anecdotes. We are no longer in 1945- we no longer have the luxury of accepting reports of improvement with this or that substance at face value, but rather we must do rigorous hypothesis testing. We are still discovering new therapies and are hopeful for real cures, not just for "benign" epilepsy syndromes, but epilepsy of any age and cause.
"only" a couple years? keto literally worked for me the first day it kicked in.
but i suppose that's anecdotal for you too.