What is the Ketogenic Diet Therapy?

Carbohydrates are found in foods like bread, pasta, potato, rice, fruit and vegetables.⁷ The body breaks carbohydrates down into glucose in order to provide energy. In the ketogenic diet, however, fat is used as the body’s primary energy source instead.

“The ketogenic diet is built around having low carbohydrates, low protein and high fat content,” Derek Clarke, Nutricia Ketogenic and Metabolic Chef explains. “So, as a chef, it’s a case of choosing ingredients that adhere to those criteria. Different patients are also on different ratios of fat to carbs/protein; some are on four to one, three to one and two to one, which can make certain recipes more acceptable than others.”

He continues: “For example, once fat powders became available, there was no longer a need to use large quantities of oil to increase fat content, and it became possible to make food that was a lot less greasy. Instead of using wheat flour, fibre flour, coconut flour or ground almonds are all great and tasty alternatives. Fibre flour is particularly good for making low carb bread, while celeriac, swede and parsnips are perfect substitutes for potato.

“As we can’t use sugar, a lot of my recipes involve sweeteners. At the same time, berries are a great go-to natural sweetener - it’s always handy to have raspberries and blueberries in the fridge because they’re a good start to any recipe.”

Fat is found in foods like avocado, oils, cream, butter and mayonnaise.⁷ Foods high in fat are an essential part of the ketogenic diet and will provide the majority of calories that the body needs, as fat is the primary source of energy on the ketogenic diet. Fat creates energy when it is broken down by the body to make ketones. Ketosis is a natural state the body finds itself in when it is using fat as its main fuel instead of glucose.

Protein is found in meat, chicken, fish, eggs, nuts and legumes.⁷ It is important for children’s growth and is used to build and repair tissue in the body. Protein is especially important for bones and muscles. Our protein needs change across our lifetime. Children’s protein needs range from 12.5 g/day for babies under 3 months of age to around 28 g/day for 10 year old children, depending on age and body weight among others.  Adults in the UK are advised to eat 0.75g of protein for each kilogram of body weight, based on the Reference Nutrient Intake (RNI).⁷ Your dietitian will advise you on your / your child’s recommended protein intake.

In the Classical Ketogenic Diet, the intake of protein is restricted, but the diet provides sufficient quantities of protein to cover the body’s needs. In the Modified Ketogenic Diet, protein intake is unrestricted.

The day-to-day management of KDT involves the provision of a diet that is restricted in carbohydrate and sugar content, high in fat, and containing enough protein to meet the requirements to build and repair the body. 

Alongside food meeting the specific requirements laid out above, children undergoing KDT also require a suitable vitamin and mineral supplement as well as their ongoing anti-epileptic medicines.

Chef Derek explains: “My advice to parents interested in the ketogenic diet is to do as much research and gain as much knowledge about it as you can. Before you start the diet, it’s a good idea to make some of the ketogenic recipes and give it to your child to see if they like it, because it’s a big change from a normal diet. There are also lots of great places to find new recipes and inspiration, including our recipes books, our Chef’s Corner here on the Nutricia website and of course our social media channel Nutricia KetoConnect on Facebook and Instagram.”

A clinical trial at Great Ormond Street Hospital in 2008, and other studies since then, showed that in just 3 months the diet significantly reduced the number of seizures in a proportion of children whose seizures did not respond well to anti-seizure medicines. After three months, around 4 in 10 (38%) children who started the diet had the number of their seizures reduced by over half and were able to reduce their medication. Also, some of the children had other benefits like increased alertness, awareness and responsiveness.⁵

Following KDT brings a significant lifestyle change and constitutes a steep learning curve. Understandably, many families and adult patients need considerable support, especially during the first few weeks. However, with the right information and support, the experience of Ketogenic Dietary Therapy can be a positive journey. For example, batch cooking, meal planning, preparing snacks in advance and generating new recipe ideas can all be really helpful. Sometimes on balance, the benefits may not outweigh the limitations of following a restrictive diet for everyone.

Around 3 months after starting the diet, your ketogenic team will do a follow-up assessment to evaluate whether the diet is still the most appropriate treatment option². By this time, your ketogenic team will be able to assess the diet’s effectiveness in controlling or reducing seizures in your or your child’s case.

When people first start the diet, they may experience feelings of tiredness, irritability or generally feel unwell for a few days. This is temporary.

Other side effects when the diet is continued long term may include⁵:

• Constipation
• Reflux
• Raised blood triglycerides and cholesterol levels
• Kidney stones
• Very rarely pancreatitis

During any period of illness, you should make sure to follow advice from your GP, local paediatrician and neurologist, and also contact your dietitian or epilepsy nurse specialist for any further advice.

If any new medications are prescribed, you should make a request for the reduced carbohydrate preparation, although one may not always be available. You may also be asked to measure your/ your child’s blood glucose levels.

You should always maintain regular contact with your ketogenic team and speak to your dietitian or nurse specialist about the recommended frequency for testing ketone and glucose levels. Once patients are well established on the diet, they may be able to reduce the frequency of testing; your ketogenic team will advise you accordingly.

Here’s a handy list of the things you need to keep on top of while following ketogenic diet therapy:

• Make sure you have all the relevant products prescribed from your GP before starting the diet.
• If you/ your child start the diet in hospital, make sure you have a supply of relevant products to go home with.
• Carefully follow the recipes provided by your dietitian, using weighing scales where indicated.
• Remember to measure ketones as instructed by the ketogenic team.
• Record seizures and ketones in your daily seizure record chart.
• Regularly update your ketogenic team.

Moving onto the ketogenic diet can be a big change for you / your child and your family, but there is a good chance that it will be extremely beneficial - half of children who trial the diet will experience a 50% reduction in seizures.¹

There is often an assumption that the ketogenic diet can taste bland, but this doesn’t have to be the case; your dietitian can provide you with access to new recipe ideas when you need them, and help you see how the ketogenic diet can still taste good. Further to this, there are regular cookery days and events that you can attend throughout the year to get new ideas and inspiration for the diet. 

“When a new ingredient or product comes along it can open up a lot more possibilities with the recipes,” Derek says, “Like all diets, everyone just wants some inspiration and that’s why I’m constantly experimenting with new ingredients to try and develop new and exciting recipes.” 

Part of Derek’s role at Nutricia is to consistently look at new ways to innovate the ketogenic diet in order to push the boundaries of what is possible from a flavour perspective.

He says: “My background is as a baker, so flour is a huge part of that - but obviously we can’t use flour in the ketogenic diet. Fortunately, there are a lot of substitutes like fibre flour, ground almonds and coconut flour - it’s just a case of trying to blend the ingredients in the right way for the best outcome. When you’re making a cupcake, for example, you want it to taste and look exactly like a normal cupcake, so certain recipes are trickier than others and there can be some experimentation involved!”

A few things to remember that will help make your/your child’s KDT go all the smoother:

• Ensure that you always have a good supply of your special dietary products and that they are in date.
• Your special dietary products are prescribed by your GP. These are obtained via a pharmacy or home delivery.
• Medications to control epilepsy should be given as directed by your neurologist – always keep supplies available and change to tablets and reduced carbohydrate preparations as soon as possible.
• Keep a spare set of batteries for weighing scales at home so that you never run out.

• Once you / your child is established on the diet, consider batch cooking and then freezing favourite meals to save time.
• For children, a copy of your child’s feeding plan can be sent to your child’s nursery or school. Your dietitian and nurse specialist can speak to your child’s school about ketone testing and managing high or low levels.
• Ask your child’s school to let you know about special occasions in advance. You can then prepare ketogenic diet friendly celebratory snacks so that your child can join in on the celebrations. 

There is a lot of focus on the ketogenic diet and seizure reduction, but the ketogenic diet can have a large impact on QoL too. A recent survey looking at parent and patient views of antiepileptic drugs and ketogenic diet (KD) experience revealed the below results⁸:

• 53% reported that the KD had very few side effects compared with antiepileptic drugs
• 51% felt more involved in their child’s health since starting KDT
• 49% reported that the ketogenic diet had improved their child's quality of life 
• 45% wish that they had known about the ketogenic diet sooner 

Nutricia have a range of resources to support a Ketogenic Diet, explore our website and speak to your HCP to find out more.

After around 2 years on ketogenic diet therapy for drug resistant epilepsy, your ketogenic team will assess whether it is time to wean you or your child off the diet. This will be done in a controlled way, under the strict supervision of the ketogenic team.