Quicklink: Epilepsy’s Big, Fat Miracle

Fred Vogelstein, parent of a child with epilepsy that’s been unable to be effectively controlled pharmaceutically, describes his family’s positive experience with a ketogenic diet as a treatment regime: a diet that involves a whole lot of fat in a restricted calorie regime that requires measuring food in fractions of grams. The whole story behind this increasingly accepted but horrendously complicated to manage treatment is a fascinating read.

A ketogenic diet is definitely not a treatment for every epileptic, because for those whose seizures can be controlled pharmaceutically without major side effects, that’s still so much easier to manage. But especially for young children suffering dozens or hundreds of seizures daily, this regimen can make an absolutely huge difference to how they get through every day until they might (as nearly all many but not all will do) naturally progress beyond the intense seizure stage.

In particular, what jumps out is that a treatment initially dismissed as quackery was quickly viewed as a serious therapeutic option once a research team could display unequivocal data demonstrating that the diet was indeed effective in preventing seizures. Now the scientists are looking into it further to find out the exact physiological mechanism whereby ketoacidosis inhibits seizures, and are hoping to eventually find a simpler method of stimulating that mechanism. This is exciting stuff.

See, that’s all it takes for a genuinely revolutionary iconoclastic idea to be accepted by the scientific establishment: evidence. If it really works, then it can be shown to work in a trial that adheres to the scientific method. Of course, convincing scientists and medical specialists is one thing. “Ordinary people” are still going to think it’s weird and probably wrong, because they nearly always do, because they lack the specific education in the area to properly evaluate it, so they default to “that can’t be right”. See: any global warming debate on a blog near you.

Categories: health, medicine, parenting


5 replies

  1. this regimen can make an absolutely huge difference to how they get through every day until they (as nearly all will do) naturally progress beyond the intense seizure stage.

    Uh, no.
    Some types of childhood epilepsy–childhood absence E, benign rolandic E–are often naturally outgrown. Keto is useful occasionally for those, but it’s more often a treatment/cure for more severe types of epilepsy which are otherwise *not* naturally outgrown.
    Prolonged (not permanent) use of keto can, however, for some kids–even those with severe childhood E–permanently reduce or even altogether eliminate seizures.

  2. P.S. I really do appreciate the link! I didn’t mean to come across so snottily, but I have a feeling you can gather how frustrating it is to hear “Oh, my friend had seizures…but they went away by the time she was your age…you really still have them?”

    • I do appreciate the frustration, and I apologise for my less than scrupulous wording. I never meant to imply that the seizures disappear entirely for most. Like a lot of children with invisible disabilities, epileptics can become very good at pretending not to be disabled as often as they can manage it, so I’m sure that there are many people whose friends are still seizing without the friends realising it – all they know is that they don’t notice it when they do.
      Of course, that’s a lot harder to get away with if one’s seizures are grand mal rather than petit mal.
      I’ll change the wording to ‘many’ rather than ‘nearly all’. My impression was that even those who still seize into adulthood tend to have far less frequent episodes though? Perhaps down to a dozen daily rather than 50 or 100s like some of the kids currently on the ketogenic diet?

  3. In general, epilepsy does whatever it wants to. Seizures can drastically increase, decrease, change in length, change in type, etc. for seemingly no reason in people with all sorts of E syndromes. Adults with epilepsy (not “epileptics,” BTW 😉 ), both those who’ve had it since childhood and those who develop seizures as adults, generally experience cycles of seizure activity, with periods where it’s worse and periods where it’s better.
    I think in Lennox-Gastaut and a couple of the other really, really severe childhood epilepsies, there tends to be a small decrease in number of seizures. But except for people with a syndrome like where it vanishes entirely, one isn’t going to go from 50-100s/seizures a day to 1-2 without signficant intervention. (With the caveat that, again, epilepsy usually just does whatever it wants to. It’s such an individualized disorder, even for people with the same syndrome. I guess you could say it is a disorder with, literally, a brain of its own. ^_^ )

    • Adults with epilepsy (not “epileptics,” BTW 😉

      Bugger. My apologies for falling into that outdated and hurtfully depersonalising usage.
      Thanks for the extra information.

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