in these days of September there are many families that are starting the ketogenic diet for epilepsy. So we thought to share with you a “ten point guide” of things to do at the beginning of the diet. Or rather the things that were important to us.
1) Order a blood ketone meter. It will also be useful when you are in the hospital, if you start in hospitalization. At this link you can find one of Menarini. You can write or call them to get it for free
2) Get yourself a good balance, it will be your “traveling companion”. Below is a link to a good balance, which measures tenths of a gram and does not turn off during the measurement.
3) Study everything is available on the diet, brainstorm with others more experienced parents.
Start tstudying food composition, which foods are more ketogenic. Study the food labels.
4) Start building your personal database, collecting the nutritional values of various foods (calories, grams of fat, protein and carbohydrates per 100 grams of food). The so-called “ratio” (eg 2: 1 or 3: 1 or even 4: 1) consists in the ratio between the fat and the amount of carbohydrates and protein. FATTY / (+ CARBOHYDRATES + PROTEINS). For example, in a diet 3: 1, each meal must be composed of 3 parts of fat for each part of carbohydrates + proteins together. At this link you can find the nutritional value of fresh produce. Forr packaged foods, see the labels.
It will be useful to store these information on your computer, we use an excel file.
5) Ask your dietitian the exact prescription of your child: the amount of daily calories, the grams of fat, protein and carbohydrates that must be taken each day. And also how to distribute them throughout the day. Make clear how many calories, grams of fat, carbohydrate and protein should be taken for each meal or snack.
6) Take specific agreements with your dietitian. Decide together how to send a report on diet, and when the dietitian will respond with any changes to the diet. For example we organized so. Monday morning we send to the dietitian a report on diet (with a description of what you have eaten each day, the detection of ketone, the diary of seizures). The dietitian will endeavor to answer us in the day of Monday. In this way, the dietitian can “adjust the aim” on the basis of the information that we send.
7) Ask an emergency number to call in case of need. For example, to know what to do the first time your child has a flu. Or the first few times you face things later manageable alone (ketone too high, food refusal)
8) Inform friends, family and the school that your child is doing this diet and Make them to share in this great adventure. They will also learn many things and be proud to have contributed to the care of your child
9) Prepare the house. Put bread, biscuits and other foods that your child might want, in the highest shelves. During the fisrt weeks we have given up to bring the pasta on the table for us. Then you will see that you no longer need, because your child will become your first ally in the diet.
10) Before starting the diet, ask your dietitian some recipes to test; build yourself a small supply of recipies that you think will please your child.