December 14, 2010 1 Comment
Last month the Times ran a really interesting article about the ketogenic diet. For reasons that scientists don’t really understand, a diet that is almost completely fat seems to have a remarkable ability to reduce seizures among people with epilepsy. Sounds great at first, but its hard to so ruthlessly cut out carbs and to really stick to the diet, especially for a kid. The story shares one family’s experience:
Doing all this once is fascinating. Who knew that a cup of milk had more carbs than half a slice of toast or that macadamia nuts have more than twice the fat of pork rinds? But administering the diet for three meals and two snacks a day, seven days a week for two years is relentless. There is no “Let’s just order pizza” in our house, no matter how crazy the week has been. A barbecue at a friend’s house takes Evelyn 30 minutes of prep time. A sleepover takes two hours, because she labels all the food and writes out heating and serving instructions for the parents. Evelyn spent six hours preparing food for a three-day camping trip in August. Unexpected events that barely register in most families — like the fact that I recently ate the applesauce that was to be part of Sam’s breakfast — create mad scrambles to recalculate and reweigh meals so Sam gets out the door on time.
In our case, we’ve been really lucky that we’ve never had to consider anything this radical. Lamictal has been Alex’s miracle drug. I’ve read a lot of stories of families using this diet on the TSC parents list-serve I belong to– a number of whom failed to stay on the diet. It’s hard. When your kid is having seizures, though, and the drugs won’t work, you are certainly willing to try anything.