keto kid - part one

The only thing that might begin to resemble a cure for epilepsy is the Ketogenic diet. It’s unfortunate that the diet works only for a smattering of people, usually children, but at least it can work, though many conservative neurologists remain skeptics.

Soon after Calvin's diagnosis and while researching the diet (his local neurologist never mentioned it) I learned it had better efficacy when begun early in the treatment of seizure disorders. So, in March of 2008, when Calvin was four, we checked him into Massachusetts General Hospital for the three-day initiation.

We were hoping, as do all parents who put their kids on the diet, that Calvin would be one of the lucky few—the five to fifteen percent, or so, of children who try it—whose seizures would stop within a matter of days after starting the treatment.

We first had to fast Calvin for twenty-four hours to put him into ketosis—the state in which, for three thousand years, seizures have been known to stop. In the hospital they monitored his heart rate, oxygen saturation and respiration. His blood and urine were screened for ketone bodies, or ketones. The diet mimics fasting or starvation by increasing fat and severely limiting the amount of carbohydrates ingested. The liver converts the fat into fatty acids and ketones which pass into the brain and replace glucose as an energy source. An elevated level of ketones in the blood can lead to a reduction in the frequency of epileptic seizures, though it is not yet known whether it is the ketones themselves, or some other coexisting mechanism responsible for the effect.

Calvin’s first meal in the hospital consisted of egg, mayonnaise, cheese, heavy cream and melon. It didn’t sound too bad until we weighed it out on the sensitive gram scale, to the tenth of a gram. The boiled egg–yolk and white weighed separately and just enough to fill a tablespoon—were mixed with a similarly sized dollop of mayonnaise, and a small slice of cheese on the side. The diminutive portion of cantaloupe, about the size of a grape, shocked me. Calvin had to drink the heavy cream.

Dolefully, I contemplated the meal which was minuscule due to the high fat accounting for most of the calories. I worried that Calvin, who had always had various difficulties with eating, would refuse this strange new menu. I felt badly that he could no longer enjoy his favorite crispy graham crackers, orange cheese puffs and an unlimited supply of crunchy sweet grapes. After all, there were so few things Calvin really got to enjoy in life.

But, being the superkid that Calvin is, he choked it all down—every required morsel—and every bit of fat scraped up with a spatula. That night he got sick twice, but overall the initiation went smoothly and on the third day we were released from the hospital to try it ourselves at home.

To be continued

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