"What? She has to eat that?" The Ketogenic Diet Part 3

The meeting:

So, here we go...beginning of December 2007 we officially started the diet. We met with the dietitian and one of the first things she made us agree upon was that we would commit to at least 3 months on the diet. Of course we agreed. We didn't just decide to put our child on a such a restrictive diet for the fun of it...we wanted to see results! As long as there were no side effects, we were in this for the long haul.

She gave us a wonderful computer program for calculating Karissa's diet. I will spare you the details, but basically, you put in the grams of fat, carbs and protein for a food item and it tells you how many grams of a specific food is allowed based on the prescribed ratio. Nice! She was started at a 1:1 ratio of fat to carbs and fat to protein which was gradually changed to a 4:1 ratio. What this meant was 4 grams of fat to 1 gram of carb and 1 gram of protein. Fluid was also restricted. We even had to avoid certain shampoos, lotions and toothpaste because they contained a nominal amount of sugar that could break ketosis. We also had to order a funky, chalky tasting (yes, I tasted it) vitamin supplement to prevent certain deficiencies that may be caused by the diet. Karissa DID NOT like the taste of it...who could blame her? I wouldn't want to swallow a chalky tasting drink either! But as always, she was a trooper!

The results:

By the time March rolled around, we thought we would be able to start weaning her off the meds. If I remember correctly, Karissa had to remain seizure-free for 3 months before we could start the weaning process. Not only had she had a few seizures, we also stopped the diet for one week (I don't recommend doing this) because we were curious to see if it was actually working. I was also getting frustrated with the diet and I wanted so badly to quit. So we did, for a week. Actually, I think it was more like 5 days.

So, was the diet working? Yes, indeed it was!! Even though is was for a short period of time, we noticed an immense change in her behavior once the diet was stopped. Karissa had a very difficult time concentrating on tasks and staying still long enough for us to work on activities, all of which improved once she was on the diet. On the diet, she was much more 'calm' as we would say. Off the diet, her behavior was noticeably different. That was very encouraging to us since we hadn't even started weaning her meds. If her behavior was different as a result of the diet with no medication changes, we couldn't even imagine what she would be like once the meds were weaned. That was exciting to us.

The challenges:

So, back on the plan we go. Yes, we had to start from the beginning but seeing the improvement in Karissa's behavior was worth it. The next 3 months were a bit of a struggle. After turning 3, Karissa transitioned out of the Early Start Program and into the school district. She started going to school every day for 3 hours. It was a special day class, meaning, it was for children with special needs. She was there from 10:50-1:50. That meant Karissa would need to bring her lunch to school.

I can't begin to tell explain how stressful this was for me. Dealing with Karissa's teacher and the aides was a challenge I didn't need. I don't know how many times I had to reiterate the reasons for putting Karissa on the diet. The teacher made me feel like a horrible person for having placed my child on such a strict regimen. I expected her to be supportive, but instead was judged. She would say things like "Karissa seemed so hungry all day" or "cant' we give her more food?" I know for a fact, that they did sneak her food on a few occasions because of the change, although very brief, in Karissa's behavior and the decrease in ketones in her urine. I was livid!!

I couldn't believe her attitude. First, she had no place to judge me. Second, you would have thought she would have understood, since she works with kids with special needs and it is her job to help them learn and help them catch-up if at all possible. I had to tell her time and time again that we had her on this diet with the goal of getting her off her meds with the hope that her learning and development would improve. She never quite understood. I knew that in the fall I would probably be looking into another program for Karissa. But unfortunately, that never happened.

Another challenge we had was traveling while on the diet. In February, we flew to Utah with my parents for a ski trip. I wonder what TSA thought of the ketogenic ice cream that I had packed in my suitcase. Luckily, we stayed in a huge condo so I prepared everything there, except for the ice cream of course.

The week before Karissa died, we were on vacation. I remember planning out and preparing all her meals. She ate 5 times a day. We brought 2 mini coolers full of Karissa's meal for the trip and asked to have a microwave in the room. There was already a refrigerator and freezer in the room. We were set. Planning and preparing her meals was so easy for me. Of course, being a registered dietitian didn't hurt either. It became a way of life. It became routine. It was a lot of work but again, well worth it...

"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...