Friday, October 16, 2009

"What? She has to eat that?" The Ketogenic Diet Part 2

The diet and how it works:

The ketogenic diet is a mathematically calculated diet that is high in fat and and low in both carbohydrates and protein. It is a specific ratio of fat to carbs and fat to protein. Everything must be carefully weighed on a scale so as to ensure that the appropriate ratio is met. It also strictly limits both calories and fluid intake. It helps to control seizures and allows many children to become both seizure-free and drug-free. Because it is based on food, the ketogenic diet is considered by many to be an "alternative therapy." Through its demonstrated success, the ketogenic diet has become a part of the mainstream medical treatment for epilepsy.

The ketogenic diet uses fat as its main energy source, rather than glucose. When the body burns fat, ketones are produced. It appears that high levels of ketones are associated with better seizure control. Ketones that are produced as a result of the diet can have an anti-convulsant effect.

More than just a diet:

I say that it was more than just a diet because there were so many other things that were involved.

Ketosis seemed to be the main goal of the diet.If Karissa was in ketosis, we were good and the ratio of fat to carbs and protein was working. Most days I could smell Karissa's breath and know she was in ketosis. It was a sweet, but medicinal smell. How I miss that smell. :(( We actually had to check Karissa's urine every morning using a "keto-stix." This would then tell us to what degree of ketosis she was in.

But, it didn't stop there. Every 3 months or so, Karissa would have her blood drawn. There were many possible side effects to going on the diet: constipation, kidney stones, vitamin deficiency, dehydration, high cholesterol and triglyceride levels to name a few. She would have 17 different lab values checked every 3 months. Some of these included kidney and liver function tests, ammonia levesl, cholesterol and triglyceride levels.

Our journey:

We first considered putting Karissa on the ketogenic diet shortly after she turned 2 years old. That was around the same time we had changed Karissa's neurologist. It was the new neurologist that had encouraged us to consider trying the diet. She told us that we would need to meet with the Ketogenic Dietitian, a Registered Dietitian that specializes in the ketogenic diet, to discuss the meal plan that would be specifically tailored to Karissa.

Being a Registered Dietitian myself, I was vaguely familiar with the ketogenic diet. Although I had never actually instructed a patient on the diet, I knew that it involved eating large amounts of fat while restricting carbohydrate and protein intake. What I didn't realize was how mathematically intricate the diet was. I really thought it would be like an Atkins type diet. Just eat more foods that are high in fat and limit carbs. Unfortunately, I was wrong.

We, or maybe I should say that I, struggled for about 6 months with the decision to start Karissa on the diet. Initially, I was completely against putting her on such a restrictive diet. I mean, what kid wants to drink heavy cream mixed with MCT oil at every meal? Or how fun is it to only be allowed 4 bites of applesauce? I also knew it would be A LOT of work. How would we manage keeping her on the diet when she went to school? Even a bite of food that was not calculated into her meal plan could break ketosis and put us back to square one.

We talked about all the pros and cons. We had wonderful support from family. It wasn't until the end of November of 2007 that we decided to start the diet. Our decision to start the diet was driven by our intense desire to see Karissa reach her full potential. Not knowing all the side effects of the medications and how they were effecting Karissa's development was a factor in our decision. The biggest factor yet, however, was the possibility that the diet would allow Karissa to eventually become drug-free, thus providing her with increased alertness and mental clarity . This was beyond exciting for us! All we wanted was to see our daughter thrive and learn and if that meant going on a funky diet, then so be it! But, the excitement about working towards the ultimate goal of weaning Karissa off all her meds was met with many challenges and difficulties...

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