I hang out sometimes on a forum for parents of children with epilepsy. It’s a heartbreaking place. If there are kids whose seizures are controlled by medication and who are doing well — or even making it through the day — in school, their parents are posting somewhere else.

The forum’s purpose is to let parents know about ‘alternative’ treatments for epilepsy. We’re not talking about flower essences, mega doses of vitamins, or Reiki, either. The treatment that parents tell each other about most often is the ketogenic diet — and its cousins, the modified Atkins, low glycemic index, and specific carbohydrate diets.

The ketogenic diet has been tested repeatedly — including a recent RCT that demonstrated its efficacy at helping children with intractable seizures despite multiple medications. But, as far as I can tell, most parents still learn about it from each other, not their physicians.

Most of the kids I know about from this site have multiple types of seizures, and they’re on at least two, and commonly three, anti-epilepsy drugs. These drugs have significant side effects, and more than one parent believes that their child’s medications have increased the frequency of seizures, brought about a new type of seizure (myoclonic or drop seizures, for instance, in a child with absence seizures), or caused developmental delays.

The ketogenic diet induces long-term ketosis, a condition in which the body converts fat into energy instead of carbohydrates, by extreme dietary modifications. The mechanism behind its effectiveness might be an increase in leptin. This has only been demonstrated in animal studies so far, but the parents on the forum don’t really care why it works. They only care that it does.

Reponses to the ketogenic diet can sometimes be dramatic. One mother posting on the forum indicated that her son went from having roughly 90 seizures a day to none within three weeks. Sometimes, it takes longer to work, and, in some children, it helps to a minimal degree. It’s not without risks, but its effect can be nothing short of miraculous.

Most epileptologists are well aware of the diet’s potential to help children who are otherwise trapped in a body that’s out of their control. But many other physicians aren’t, even though prominent specialists recommend that the ketogenic diet should be second-line or even first-line treatment for certain types of seizure disorders.

If ever there was an ‘alternative’ treatment that doesn’t deserve the label, it’s the ketogenic diet.

I’m not blaming individual physicians. The Institute of Medicine estimates that it takes 17 years for a proven therapeutic technique to become the standard of care. 17 years. That’s enough time for a child with infantile spasms to become a disabled young adult.

How can we increase the speed at which treatment paradigms in medicine shift? Because that’s what we’re talking about here. If the ketogenic diet were a new medication, it would have the support of Big Pharma. But it doesn’t make money for anyone, least of all the companies whose drugs these kids are often finally able to discontinue.

It’s just an alternative — no, a better — way of treating some children with epilepsy.

References

Lin Xu, Nicholas Rensing, Xiao-Feng Yang, Hai Xia Zhang, Liu Lin Thio, Steven M. Rothman, Aryan E. Weisenfeld, Michael Wong, Kelvin A. Yamada (2008). Leptin inhibits 4-aminopyridine– and pentylenetetrazole-induced seizures and AMPAR-mediated synaptic transmission in rodents Journal of Clinical Investigation, 118 (1), 272-280 DOI: 10.1172/JCI33009

E NEAL, H CHAFFE, R SCHWARTZ, M LAWSON, N EDWARDS, G FITZSIMMONS, A WHITNEY, J CROSS (2008). The ketogenic diet for the treatment of childhood epilepsy: a randomised controlled trial The Lancet Neurology, 7 (6), 500-506 DOI: 10.1016/S1474-4422(08)70092-9