The Journey Begins

We are all set to embark on the ketogenic diet journey. Grace goes inpatient on Monday, January 12th to start the process.

The Ketogenic diet is a special medical diet that has been shown to help with seizure control for people with hard to control epilepsy. We looked into the diet last summer and decided that this was not for Grace at that point. Along with Grace's medical team, we all felt that the burdens on the diet were too much for Grace for the anticipated benefit to her from being on the diet. Things changed in recent months as we found out that Grace needed a medication change. We decided that this is the best time to try her on the diet.

The Ketogenic diet is a high-fat, low carb calorie-restricted diet. The diet is measured in ratios. The most common ratio is 4:1. In a 4:1 diet, fats are consumed for 90% of the calories, protein is 7% of the calories and carbs are 3% of the calories. The goal of the diet is to put the patient into ketosis. When the body is in ketosis, it releases chemicals that have great anti-seizure properties. The goal is to be able to reduce the amount of anti-epileptic drugs that Grace is currently taking.

The biggest challenge with this diet is that Grace loves food. We have always said that she has eating days and non-eating days. On her eating days, Grace astounds people with what she can eat. Grace loves traditional healthy food as well like fruits and vegetables. She has been a good, well-balanced eater. Grace's favorite food at the moment is a hot dog. It is also her favorite saying! On a recent skills evalutation, she was asked to say if she is a boy or girl. She replied, 'I a hotdog' - consistently! Of course she laughed when she said it just to show you she wasn't going to give the answer we wanted to hear!

The next biggest challenge is keeping the food from Grace that she is not going to be able to eat. Grace is very mobile and has no problems getting into the cabinets and fridge on her own. Grace thinks nothing of taking food from the plastes of anyone at the table. She also is very good at enlisting the help of others to feed her. We have been talking to her for weeks, trying to prepare her that she can only eat food that we give her. The true test will be how she does as the diet kicks off.

Grace has been eating butter and loving it so we are not worried about that. She also likes to drink the little containers of half-and-half so we think she is ready for the heavy cream that will become a stape of her diet. We think that she will like the foods she can eat. We only worry that she will miss the foods that she can not eat. My biggest fear is how we will react when she begs for things she can not have.

We are getting ready for the entertainment we will need to have an otherwise healthy child in the hospital for several days. We are lining up the crayons, coloring books, movies, books, dolls, temporary tattoos, and of course her favorite musical toys. Grace loves the Christmas tree that lights up and plays Jingle Bell Rock so that will be going with her. Her new favorite though is a skirt that plays the Chicken Dance music. Her favorite part of the Chicken Danceis getting everyone to join in! I anticipate that we will hear that song many, many times over the next few days (as we have since she got the skirt last week for her birthday!) Grace's daycare class made some posters to decorate her room and they gave her a special book all about her and her special diet.

Ready, Set, Here we go.....