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!
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.
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...
6 years ago