Towards the last few weeks of Karissa's life, her seizures had gotten pretty bad. At that point, we weren't sure what we were going to do. We had a plan to start weaning her off her medications, starting with the topamax. We knew the diet was working, but did we want to start decreasing her meds when her seizures were so bad? But, the plan was in place and we were going to start decreasing her medications the week she died. Unfortunately, we never got that opportunity.
I still struggle with whether or not we made the right decision putting Karissa on the diet. I will have days every so often where I will say to Mark "what if the diet is what killed her?" Or, "If she wasn't on that stupid diet (that is how I refer to it these days), would she still be alive and here with us today?" I even consider the possibility that she died from a low blood sugar or dehydration, both are which are possible side effects and totally preventable. But that is when I just have to stop and say to myself that maybe it was that 'stupid diet' that prolonged her life. Perhaps is was the diet that allowed us more time with her.
And then there are other days where I will start to cry just thinking about the foods that Karissa didn't get to eat or the foods that she had to eat like the heavy cream and MCT oil. I tried my best to make everything flavorful and fun but it still breaks my heart that she had to be on such a strict diet. I was so focused at the time on the goal that I didn't think about it. But now, it really does break my heart. From time to time, I will ask Mark if he thought she was starving all the time. Of course she wasn't because the diet actually suppresses the appetite. But, I hated when she would sign 'more' but I didn't have anymore food to give her. That is when I wanted to throw that plan out the window and quit the diet. But I didn't...I was determined to see my little girl get better and the hope of her reaching her full potential is what kept me going.
I know we did what we thought was best for her at the time. I have no regrets about that.
6 years ago