Preparing to Start Ketogenic Diet Therapy – Tips and Advice

The ketogenic diet works by using fat as an alternative source of energy for the body, producing ketones¹. Ketosis is a natural state the body finds itself in when it is using fat as its main fuel instead of glucose. Ketones and the biochemical changes in the brain associated with ketosis can lead to reduction of seizures.

The ideal outcome for the ketogenic diet is for the patient to be initiated on the diet, become seizure-free, reduce or eliminate anti-seizure medication, come off the diet after 2 years and remain seizure free. This does happen for some, but there are varying degrees of success on the diet³:

• Reduction in the frequency and intensity of seizures
• Reduction in drugs and their associated side effects
• Increased alertness
• Increased energy levels
• Increased level of wellbeing

Be really honest with yourself and understand your expectations. Try to set realistic targets and keep an open mind. Focus on all the possible benefits of the ketogenic diet and not just controlling seizures. Remember that in most cases of complex epilepsy, the diet is not for life (the duration will depend on the syndrome or condition being treated). Time goes by faster than you think and a successful ketogenic diet is very much worth the effort and time you invest.

You may be concerned about the difficulty of complying with the restrictions of diet at the beginning of your ketogenic journey. The ketogenic diet is restrictive and can be time consuming. But watching your child seize uncontrollably or go through the side effects of anti-seizure medication is incomparably more difficult. You may find that spending time in the kitchen, actively supporting your child’s care can be very rewarding.

Check out ketogenic recipes, as well as the cooking tips and advice from our specialist chef on our Chef's Corner section. 

Following a ketogenic diet will bring a considerable change in food choices for you or your child and in how meals will look line. Easing into this change with a few weeks’ preparation period in which consumption of high carbohydrate foods is gradually reduced and keto friendly foods are gradually introduced can make a big difference. This will help build your confidence, build acceptance of keto friendly foods and allow the other members of the family to adjust to the change. 

You will need to adopt a more organised approach to meal planning. An openness to organised meal planning and preparing basic meals from scratch is essential.

Careful record keeping will also be important. You will need to keep daily records of seizures and associated symptoms, ketone levels, diet and any changes made, weekly weights.

You may find though that the impact of the diet on seizure frequency and intensity and overall quality of life will make the effort worthwhile.

Keep close contact with your ketogenic team who can support you on this transition.

Watch Chloe’s Story and find out how Ketogenic Diet Therapy has helped her manage her epilepsy

Discover more real life ketogenic diet stories here: Your Ketogenic Stories

• Below is a list of some of the foods useful when cooking ketogenic meals and snacks².
• Sources of fat: oils like rice bran oil (which has a low boiling point, is flavourless and can be used in large quantities), olive, sesame & other vegetable oils (which give a variety of flavours) , butter (adds texture to cooking without excessive moisture), cream, coconut cream, mayonnaise, nuts and seeds (almonds, pistachios, Brazil nuts, Pecan nuts, macadamia nuts, sesame, hazelnuts, pine nuts, peanuts), nut spreads, seed pasta (tahini), peanut butter, cheeses, avocado, coconut (cream, desiccated or shredded)
• Sources of protein: meat, fish (tuna, salmon, white fish), eggs (essential for quiche, frittata and as a binder in baking), cheese
• Sources of carbohydrate: vegetables (courgette, carrot, onion, peppers, bean sprouts, cabbage, tomato, lettuce, green beans, pumpkin, fresh herbs, broccoli, celery, cucumber, aubergine, mushrooms, avocado), fruit (strawberries, raspberries, blueberries, blackberries, watermelon, pineapple, rhubarb). Other fruits may be permitted, but in smaller quantities due to the high content of carbohydrate. 

Transitioning to a ketogenic diet should be done gradually to improve the likelihood of success of ketogenic diet therapy.⁶ 

Take a 4 week period before starting on ketogenic diet to gradually introduce the main dietary changes: 

• Establish regular meal and snack times
• Reduce intake of sugar and remove sweet and chocolate snacks
• Increase consumption of higher fat foods
• Reduce intake of foods high in carbohydrate
• Try out some ketogenic recipes

Under no circumstances should you reduce any medication without first talking to your neurologist. If, at the end of the 3 months, there has sadly been no positive effect of the diet, at least you can be confident that you have done your best. Living with epilepsy is difficult enough without punishing yourself with ‘what if’ questions.

Starting a ketogenic diet can be overwhelming; charities working for people with drug resistant epilepsy can provide a lot of support and opportunities to meet other epilepsy families, share experiences, tips and advice. For more on this, check out our Ketogenic Community page.

School / Nursery

Attending school or nursery while on a ketogenic diet may pose some challenges. Close communication with your child’s school or nursery is crucial to ensure they are supportive. Make sure they understand that the diet is a medical treatment and should be treated with the same seriousness as a child needing to take medication. They must understand that for your child, their food is part of their treatment therapy. School staff and lunchtime helpers should be aware that your child must not eat another child’s food and that no one else may eat your child’s food. More supervision around lunchtime may be needed to ensure this does not happen.

Nut flours are used frequently in ketogenic baked foods which can pose a challenge with schools imposing a ‘no nut’ policy. Discuss with the school whether this can be managed in a way in which no child is put at risk who has a nut allergy, but also your child is given the opportunity to enjoy these foods.

Eating out

Eating out as a family can be difficult on a ketogenic diet. Some restaurants may allow you to bring your / your child’s food and have them reheat it. Contact them ahead of time and check to avoid disappointment.

Birthday parties

Travelling

If you plan to travel longer than a week or to a foreign country, it is recommended that you contact your ketogenic diet team in advance so they can advise and guide you on all the preparations needed.