It has been more than 4 years since we started the medical ketogenic diet for our son who was 3 years old at the time. Although it was very difficult in the beginning, we are glad that we persevered. Thanks to the diet, Naois has far fewer seizures and has also become much more alert. In collaboration with Nutricia, I wrote down tips for Ketocafé in Dutch for those who are now or will soon start the diet. Via this post I also want to make these tips available for people who speak English.
When we started the diet, the medical ketogenic diet as a dietary therapy for epilepsy was still in its infancy but thankfully nowadays there are more and more resources, recipes and informative websites that parents can consult for help and support:
- On the Keto Cook website there are all kinds of delicious recipes and links to other informative websites.
- On Facebook there are several private groups for people who follow the medical ketogenic diet for epilepsy. Examples are “Epilepsy the ketogenic way“, “Diets for epilepsy” and “Doose friends diets“. You can find a lot of useful information in these groups and ask questions to other parents in similar situations.
- The websites of Matthews Friends and the Charlie Foundation contain a lot of useful information about the diet and what it entails. They also offer lots of yummy recipes for free.
Keep it as easy as possible
When your child starts with the diet, make it as easy as possible for yourself. Initially, you can just follow the plan provided by the dietician(s) at the hospital. They will probably give you a some recipes and also tell you exactly what you can prepare for your child at each meal. Do not hesitate to call the responsible dietician(s) regularly if you need information, support and/or clarification.
At the beginning I was very shocked by the amount of fat I had to give my child. I also thought the amount of fruit and vegetables I was allowed to give my child was far too little. But children who follow the diet often get a prescription for extra vitamins in order to ensure they do not have a lack of anything. Now, 4 years later, I can say that our son Naois has hardly ever been sick and is still on track with the Dutch average in terms of growth and weight.
I also wanted to understand everything immediately and tried to prepare something different for my son for every meal. He often didn’t even like what I had prepared and so all my efforts were in vain. I then had to prepare something else at the very last minute resulting in stress and panic. I therefore recommend a different strategy:
- If there is something that fits in the nutritional values your child needs and that your child likes, do not hesitate to make a larger quantity of that dish at once. That way you always have something on hand in case of an emergency.
- You can freeze each portion in a separate small plastic container and take the dish out of the freezer a day in advance. This works if you are preparing something where each bite has the same ratio. In our case, 3:1.
- Often, small children like repetition and usually don’t feel like tasting all kinds of new dishes. In this case, that’s very convenient. I would say: “Make use of it”.
Convenient foods in the right proportions
Unfortunately, ready-made products that match the strict medical ketogenic diet are still hard to find. But fortunately there are at least some foods that have exactly the 3:1 ratio. For example, pieces of coconut. I also make great use of macadamia nuts, avocado, mayo and olives. They contain more fat than necessary, which means that you can combine these foods with fruits like cherry tomatoes or strawberries. With these ingredients you don’t even need to cook.
Relax and persevere
Based on my own experience, I totally understand how difficult and scary it can be for parents to start with a medical ketogenic diet. But persevering is really worth it. And hopefully these tips and all the information, support and resources out there today will help you to start the diet without panic. If I can do it, so can you.