My Keto Kid

Well, here it is. Two years after claiming this blog address, I'm finally getting around to writing my first entry.

Many of you probably know that our two-and-a-half-year-old son, Micah, began having seizures this past June. After more than seven months of daily seizures, multiple failed medications, frightening diagnoses, etc., we are beginning a new treatment on Monday, February 14.

Called the Ketogenic Diet, it has been used in epilepsy treatment for 80 years. Committing to this diet means many changes for our family, and for Micah in particular. Beginning Monday he will become a "Keto Kid". His diet will consist of between 75% and 90% of calories from fat with the remaining 10%-25% consisting of protein and carbohydrate. Yes, he will eat butter and drink cream. No, he can't have pasta, rice, cereal, oatmeal (actually no grains of any kind), sugar, juice, fish crackers, pretzels...you get the idea. He can't use any soaps, lotions, toothpastes, play doh, wipes or anything else that contains carbohydrates, which can be absorbed through the skin. The trivial amount of carbohydrate he is allowed will come from fruits and vegetables.

The goal of this high-fat diet is to change his metabolism from burning glucose for energy to burning fat instead. When our bodies burn fat for energy, they produce ketones. For some reason, these seem to help in suppressing seizures. Portions are precisely weighed, down to the 10th of a gram, and he must eat everything to get the right proportions at each meal. You can see how this might be challenging for a toddler (and that toddler's parents...). But we're ready to try anything at this point! And the statistics are pretty good for children his age with his type of seizures, especially considering that other medicine treatments have not worked for him.

On Monday we will head up to Chicago to Children's Memorial Hospital to initiate the diet. It requires a 4-day inpatient stay to monitor blood sugar and to see how Micah will tolerate all that fat. In addition, David and I will have intensive training with the keto team to learn how to manage the diet (meal planning, label-reading, preparing, etc.), as well as how to get through food-intensive holidays, public situations, explaining the importance of adherence to others, and how to deal with the emotional changes that will come along with the food changes ("No, you can't have more food, even if you're still think you're hungry". Yikes!). Provided that everything goes well and he tolerates the meals, we will be discharged on Thursday. We'll be in close contact with the dietitian over then next weeks and months as we tweak the calorie count and proportions as needed. If it is going to work, we should see some improvement in the first two months, but it could happen sooner.

We are praying that this will work to ease Micah's seizures. This is initially a two month commitment. If it works in that time period, we will likely continue for several years. If you would like to read more about this diet for the treatment of epilepsy, please see the Charlie Foundation website (www.charliefoundation.org).