What is Ketogenic Diet Therapy?

A ketogenic diet is a high fat, low carbohydrate and adequate protein diet that is used in children with uncontrolled drug resistant epilepsy to help reduce seizures.

The ketogenic diet is designed to force the body to use fat as an energy source instead of glucose. When fat is broken down for energy it produces a compound known as ketones.

These ketones are thought to exert an anti-epileptic effect in the brain.

The diet has been used for nearly 100 years and has been shown to be effective in half of children who trial the diet.1

Other potential benefits of ketogenic diet therapy (KDT) - in addition to possible reduction in seizures - may include:

  • Potential reduction of drugs and their side effects 
  • Increased alertness
  • Increased energy levels
  • Increased feeling of wellbeing

Some research and statistics to support use of the Ketogenic Diet Therapy

  • Epilepsy is the most common serious brain disorder worldwide2
  • More than three in ten epilepsy patients become resistant to anti-epileptic drug treatment2,3
  • 84% of children compliant to a classical ketogenic diet respond by at least halving their number of seizures4
  • Children remaining on the classical ketogenic diet for more than three months are twice as likely to have:4
    • continued improved seizure control
    • a greater chance to reduce the dose of their anti-epileptic drugs
  • Studies looking at the effectiveness of the modified ketogenic diet show a seizure reduction of up to 60%5

What are carbohydrates?

Carbohydrates are found in foods like bread, pasta, potato, rice, fruit and vegetables. 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.”

What is fat?

Fat is found in foods like avocado, oils, cream, butter and mayonnaise. They are an essential part of your child’s diet and will provide the majority of calories that your child 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.

What is protein?

Protein is found in meat, chicken, fish, eggs, nuts and legumes. It is important for children’s growth and is used to build and repair tissue in the body.

How is KDT managed day-to-day?

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. 

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 and of course our new Chef’s Corner, here on Nutricia KetoConnect.”

Are there any side effects of KDT?

When children 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 include:

  • Constipation
  • Reflux
  • Raised blood triglycerides and cholesterol levels
  • Kidney stones
  • Bone health and increased risk of fractures
  • Very rarely pancreatitis

How is KDT managed during illness?

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 child’s blood glucose levels.

What are the key things to remember?

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 children are well established on the diet, you may be able to reduce the frequency of testing; your ketogenic team will advise you accordingly.

A KDT checklist for families:

Here’s a handy list of the things you need to keep on top of in the course of your child’s KDT:

  • Make sure you have all the relevant products prescribed from your GP before starting the diet.
  • If your child starts 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 child’s daily seizure record chart.
  • Regularly update your ketogenic team.

Some things to bear in mind

Moving onto the ketogenic diet can be a big change for 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 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!”

Some helpful hints

A few things to remember that will help make 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 your child is established on the diet, consider batch cooking and then freezing favourite meals to save time.
  • 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.

Ketogenic diet and Quality of Life (QoL)

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 results

  • 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 KD had improved their child's quality of life 
  • 45% wish that they had known about the KD sooner 

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

1. Cross, J. H. and Neal, E. G. (2008), The ketogenic diet – update on recent clinical trials. Epilepsia, 49: 6-10. doi:10.1111/j.1528–1167.2008.01822.x 

2. World Health Organisation Epilepsy Fact Sheet, 2015

3. Newton CR et al., The Lancet, 2012;380(9848):1193-1201 

4. Henderson et al. Efficacy of the ketogenic diet as a treatment option for epilepsy: meta-analysis. J Child Neurol. 2006;21(3):193-8

5. Martin K et al. Cochrane Database of Systematic Reviews 2016:CD001903.pub3

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