Preparing to Start Ketogenic Diet Therapy – Tips and Advice
The ketogenic diet used in the ketogenic dietary therapy is a calculated, medically managed diet with high intake of fats, restricted intake of carbohydrates and sufficient protein consumption to support growth.1 The diet can control epileptic seizures by changing the body’s primary metabolism from carbohydrate to fat as the main source of energy. Ketogenic diet therapy is usually suggested when people have seizures which do not respond to conventional anti-seizure medication or when people suffer significant side effects from their medication.
The diet has been used for nearly 100 years and has been shown to be effective in half of children who trial the diet.2
Other potential benefits of ketogenic diet therapy (KDT) - in addition to possible reduction in seizures - may include1:
- Potential reduction of drugs and their side effects
- Increased alertness
- Increased energy levels
- Increased feeling of wellbeing
There are different versions of ketogenic diet commonly used as dietary therapy for drug-resistant epilepsy: Classical Ketogenic Diet, Modified Ketogenic Diet, Medium Chain Triglyceride (MCT) diet1. And although the basic principles of the different types of ketogenic diet are the same, the “prescription” of every patient following ketogenic diet therapy is unique. The ensemble of requirements of protein, fat, carbohydrate, total energy, eating preferences, activity level, the dietary ratio will differ from person to person. Your ketogenic team will assess your situation and recommend the most suitable version of ketogenic diet for you or your child.
This guide aims to answer the questions most frequently asked by people embarking on the ketogenic diet therapy, provide you with tips and advice to better prepare for your ketogenic journey.
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
It is important to think about what success of the ketogenic diet means for you. While deep down we all hope for complete seizure control, removal of all medication and a good level of quality of life, in patients with very difficult to control epilepsy, patients who are having hundreds of seizures a day, a 50% reduction in seizures can mean a massive improvement in their quality of life.
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.
Another concern regards the palatability of the diet. All forms of ketogenic diet therapy are high in fat and low in carbohydrate. But that does not mean that meals cannot be enjoyable. Dietitians design the recipes taking into account as much as possible meals usually made at home. Some ingredients may have to change so that the meal provides the required intake of fat versus carbohydrate, but there are plenty of recipes available for you to draw inspiration from.
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
The nutrient components of food which provide energy are carbohydrates, proteins and fats. In the Western diet, people derive more than half of their energy requirement from carbohydrates.4 Foods rich in carbohydrate include bread, cereal, pasta, rice, potatoes, corn. On the ketogenic diet, the main source of energy is fat, with all forms of the diet limiting the intake of carbohydrates and providing sufficient intake of protein in line with your dietary needs. The main sources of fat are oils, butter, cream, mayonnaise, nuts, seeds, cheese, avocado, coconut5; these play an important role in the ketogenic diet.
Fat is an energy dense nutrient; it provides more energy per gram than protein and carbohydrate. One gram of fat provides 9 kilocalories compared with 4 kilocalories in one gram of protein or one gram of carbohydrate.5 Because of this, meals look much smaller than usual, and you may worry that you/your child will be hungry. But if the caloric intake is correctly calculated, this should not happen. However, if you/your child feel hungry or are not gaining weight appropriately, speak with your dietitian as the total energy requirement may need adjustment.
Using a meal calculator like MyKetoPlanner can make cooking for a ketogenic diet a lot easier. It provides hundreds of recipes you can use as inspiration and recipes can be shared with your dietitian who can check and adapt them if necessary. Read more about MyKetoPlanner here.
When buying food for a ketogenic diet, it is important to check the label for the nutritional values of each product. If you are using a meal calculator, check that the nutritional values of the product you purchase are the same as the values listed in your meal calculator. Manufacturers make changes to food products regularly, so it is important to check labels and update your product list if necessary whenever you buy a product.
Read each recipe ahead of time and check that you have the required equipment and the needed ingredients.
Cooking in large quantities so you can keep portions for future meals can make your life easier. However, not all recipes are suitable for batch cooking; single consistency recipes (for instance raspberry mousse) can be portioned with each serving having the same fat to protein and carbohydrate ratio. Meals like chicken stir fry, which do not have a uniform consistency are less suitable for batch cooking as you cannot ensure that each individual portion will have the same ketogenic ratio. A meal like this can still be prepared ahead of time, with each individual component weighed and frozen and then defrosted and prepared as required.
Batch cooking saves you time and allows you to feel more comfortable leaving your child in someone else’s care at meal times.
- 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.
- Baking products: desiccated coconut (useful in baking muffins or biscuits; its texture provides bulk making it useful as a flour substitute and its high fat content increases the ketogenic ratio), cocoa powder, gelatine (gelatine powder can be used as a setting agent for desserts such as mousse; its content is almost solely protein, so even small quantities need to be taken into account in calculating recipes), pure essences (can be used in baking and cooking with a wide range available)
- Others: dried herbs and spices (can be usually added for flavour without affecting the ketogenic ratio), sauces (even though they contain reduced carbohydrate, the content will still need to be taken into account in recipe calculations), stock (gluten free version have less carbohydrate than regular ones), powder and tablet sweeteners (best for sweetening drinks, larger quantities need to be counted; not suitable for baking), liquid sweeteners (ideal for baking; best to use only a small amount to avoid a bitter aftertaste), chocolate (small amounts of dairy free/sugar free chocolate can be incorporated into the diet; usually grated in baking, though it does contain carbohydrate so it needs to be taking into account in recipe calculations)
The following list includes some of the kitchen utensils usually needed for cooking ketogenic recipes:
- 1g increment weighing scales and spare batteries
- Non-stick frying pan
- Soft plastic or silicone spatula
- Chopping board
- Sharp knife
- Mixing ball and spoon
- Whisk
- Small food processor or hand mixer for blending or pureeing foods for soups and smoothies. This will help ensure the consistency of the dietary ratio
- Mixing ball
- Sealable plastic balls to store food when batch cooking & freezer labels
- Shaker
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
Commit yourself, your child and your family to trying the ketogenic diet for at least three months. This is not a long period of time and it is needed for your dietitian to adjust the food prescription to a level where you can be able to assess if the ketogenic diet therapy is beneficial or not for your situation7. As each person is unique, for some the benefits may be apparent sooner, while others may need more time. If after 3 months the diet has proven to be beneficial, your dietitian will likely recommend continuing the diet. Over time, some patients are able to reduce or eliminate anti-seizure medication. However, some need the diet as well as anti-epileptic medication.3
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.
The aim of the diet is to achieve a high level of ketosis.2 This is monitored by measuring ketone levels in urine with ketone sticks. The frequency of ketone levels testing may decline as you or your child are established on the diet, as per your dietetic team’s recommendation.
Regular outpatient visits with your ketogenic dietetic team will be required for review; if you have any health concerns, you will have the opportunity to discuss them at these regular visits. Regular blood tests and other medical investigations will also be needed. Seizure frequency, seizure intensity, tolerance of diet and overall wellbeing will also need to be regularly monitored.
The ketogenic diet therapy is usually added to the existing medicine regime. If the diet is effective, over time consideration can be given to reducing anti-seizure medication. This should only be done at your doctor’s recommendation. There are patients for whom medicines can be discontinued after an excellent response to the diet.
Supplementation with carbohydrate-free vitamins and minerals is important due to the restrictions of the ketogenic diet, to ensure you or your child receive the daily recommended intake. Your dietitian will advise on micronutrients supplementation suitable in your case.
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
You want to have a life as regular as possible and birthdays, picnics and other social events are part of this. Preparing in advance ensures that you and your child enjoy the occasion. It is highly unlikely that the food provider will offer foods suitable for your child’s need so consider checking with the party organiser that they are happy for you to bring your child’s own food. You will need to ensure your child has their own food and nothing else; if you cannot supervise yourself, you may need to arrange for someone else to do it for you. With older children, the importance of their ketogenic diet food can be explained so that they take a more active role in following the diet.
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.
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