The Really Useful Ketogenic Diets Book has been written and produced by The Daisy Garland.  It is a user-friendly guide full of essential information needed to start and maintain the diet. The guide is specifically for families whose children are following the ketogenic diet, a medical-led treatment used to treat drug-resistant epilepsy. Please note that the ketogenic diet should never be undertaken without the knowledge and permission of your neurologist, and close guidance and support of a specialist ketogenic dietitian. 

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The information contained in this publication is not permitted to be reproduced, in whole or in part, without prior written permission from The Daisy Garland charity. 

Welcome

In the UK there are over 60,000 children under the age of 16 suffering from epilepsy. More than 18,000 have what is termed as 'drug-resistant epilepsy', this means their seizures continue in spite of medication.

Recommended in the NICE guidelines, the ketogenic diet is a medically recognised and accepted therapy for children with drug-resistant epilepsy. It is important to note that the diet must only be carried out under the close supervision of a trained ketogenic dietitian and a neurologist.

This guide has been carefully designed, providing you with a valuable source of information to help you through your keto experience. It is full of useful information and insights, delicious recipe ideas, encouraging stories from ketogenic families, and invaluable tips and advice from those already using the diet. It will support you through every step of your ketogenic journey.

We wish you every success with the diet and we look forward to sharing your keto journey with you.

The Daisy Garland Team x

Introducing the Ketogenic Diets 

What is the ketogenic diet?

The ketogenic diet has been devised to help manage drug-resistant epilepsy. Discovered in the 1920s the ketogenic diet is a medically supervised high fat diet, low in carbohydrate with enough protein for growth. The diet is carefully calculated for each individual child dependent on their age and activity level.

Does it work?

Statistics show that over half the children on the ketogenic diet will see a 50% improvement in seizures, approximately one-third will see more than 90% improvement. About 10–15% will be seizure-free. Findings show that if a child’s epilepsy has not been controlled with the first 2 medications used, there is only a 30-40% chance of seizure control with any further medication.

How does the ketogenic diet work?

The diet aims to copy the effect of fasting. When we fast our bodies use fats instead of carbohydrates as the major energy source. When fat is used as energy, ketones are produced. This process causes fewer seizures in some children. We do not know exactly why it works, but the results can be very beneficial.

Are there different ketogenic diets?

There are a number of different versions of the diet and research has shown that all variations have been effective in reducing seizures. A decision will be made between the medical team and family as to which variation is best to use.

Classical Diet

The classical diet is based on a ratio of fat to protein and carbohydrate. Most of the fat in the diet comes from cream, butter, oil and other naturally fatty foods. Each meal has the same balance of fat, protein and carbohydrate and each part needs to be carefully weighed to the nearest gram.

This diet is particularly useful for young children and tube-fed children. A normal diet should contain around 50% carbohydrate, 35% fat and 15% protein but the classical diet contains up to:

• 90% fat

• 6% protein

• 4% carbohydrate

MCT Diet

This diet includes some fat that occurs naturally in food, as well as some from a supplement of medium chain triglycerides (MCT) fat. This supplement can be mixed into food or milk and is only available on prescription. When the MCT is broken down for energy it produces more ketones and as a result more carbohydrate is allowed than on the other ketogenic diets.

This diet is used for all children and can be helpful in school age children as the slightly increased carbohydrate allowance means they can include some familiar foods. The MCT diet contains:

• 75 – 90% fat (30-60% MCT)

• 10% protein

• 10 – 15% carbohydrate

An experienced ketogenic dietitian and medical team are essential for the safe teaching, introduction and monitoring of all medical-based ketogenic diets.

Modified Ketogenic Diet (MKD)

This diet is similar to the weight loss ‘Dr Atkins New Diet Revolution’ diet but weight loss is not the goal. It is high in fat and low in carbohydrate but is less restrictive than the traditional ketogenic diet and has been shown to be well tolerated and an effective therapy for drug-resistant epilepsy.

This diet is useful in older children as it can give more flexibility. It focuses on a carbohydrate restriction of 15 – 20g per day, with free protein and fat, although fat needs to be encouraged for good ketosis. The calories aren’t controlled as in other diets, so it is important that weight and growth are monitored closely. The MKD contains:

• 65% fat

• 30% protein

• 5% carbohydrate

Low GI Treatment (LGIT)

The LGIT is a high fat diet similar to the ketogenic diet. It focuses on both the type and amount of carbohydrate consumed.

The Glycaemic Index (GI) is a measure of the effect of carbohydrates on blood sugar levels. Foods are rated based on their GI values ranging from 0 to 100. The LGIT includes foods that have a GI of 50 or lower and typically restrict carbohydrate to around 40 – 60g per day. The digestion of carbohydrate food is also slowed by eating foods containing fat or fibre at the same time.

This treatment is normally used in older children as it includes a lot of fibre, which can be challenging for younger children. LGIT contains:

• 60% fat

• 30% protein

• 10% carbohydrate

When carbohydrates are digested, they release glucose into the bloodstream. Carbohydrates that digest rapidly have a high GI, carbohydrates that are digested slowly have a low GI.

Frequently Asked Questions 

Is the ketogenic diet nutritionally complete?

The diet is only nutritionally complete when the correct vitamin and mineral supplements are taken. Multivitamins, trace minerals and calcium must be given in sugar-free form. Your dietitian will specify which supplements to take and these can be prescribed by your GP. A variety of prescription dietary products are also available, many of these also contain vitamins and minerals. 

Can I calculate the diet myself?

No, you will need your consultant, paediatrician or GP to refer you to see a ketogenic dietitian. A specialist ketogenic dietitian must calculate the diet to ensure that it is safe and nutritionally adequate. Calculated recipes cannot be given to other children as the diet is calculated individually for your child alone.

How long does it take for the diet to work?

Some children improve within a week while others show a slower response and take up to 3 months or more to respond. In general there will be a 3-month trial period. After the trial period progress is reviewed and a decision will be made as to whether to continue the diet. If after this time there have been no beneficial changes, the diet may be stopped. This decision will be made together with the neurologist and dietitian.

Will my child feel hungry on the diet?

Although the actual quantity of food is smaller than on a normal diet, the meals have enough calories in them (calculated by your dietitian) despite their small size. They also contain more fat, which stays in the stomach for longer, so your child should not feel hungry.

Can sweets or extra snacks be eaten?

The diet is individually calculated and divided into the right number of meals to suit your child. Snack meals can be calculated into the diet, but must be done by the dietitian so that they contain the correct balance of fat, protein and carbohydrate. Sugary foods are not allowed on the diet, however sugar-free or homemade sweets may be included. Your dietitian will advise.

What will happen if my child cheats on the diet?

If this happens ketones may be lost briefly and seizures may reappear. Ensure that the next meal given is a keto meal and continue with the ketogenic diet. If you are still concerned, please contact your dietitian. Make sure you record the event on your Weekly Ketone Monitoring Chart. (See Beginning the Ketogenic Diet section).

What are the side effects of the ketogenic diet?

Generally there are few side effects and the medical team will monitor your child closely for any signs of the following:

• feeling sick or vomiting when starting the diet

• constipation due to the low fibre content of the diet

• kidney stones due to insufficient fluid intake

• limited growth

I buy organic food whenever I can and steam all veg rather than boil it. To me the ketogenic diet is such a healthy diet!

My child can’t eat dairy products, can they still go on the ketogenic diet?

Yes. Your child’s diet will include dairy-free substitutes such as soya, rice and oat milk/cream/yoghurts. Coconut milk and cream may be used in some instances. We strongly recommend that dairy foods are not excluded from the diet unless the allergy or food intolerance is proven. Please discuss any food allergy or intolerances with your dietitian so that your child’s diet can be adapted appropriately whilst they are on the ketogenic diet.

Is the diet bad for your heart?

Although the diet is high in fat, this fat is changed into ketones. Ketones are used by the brain for energy and should not increase the risk of heart disease. Cholesterol levels will be monitored whilst on the diet.

How long will my child have to be on the diet?

This will depend on how much benefit there is from the diet. It will also depend on how practical it is for you and your child to continue the diet. If your child is seizure-free or has had a marked reduction in seizures for 2 years, most doctors would suggest a trial of slowly changing back to a more normal diet. We strongly recommend that you do not take your child off the diet without first talking to your dietitian and neurologist.

Will anticonvulsant medication (AEDs) be stopped after starting the diet?

This depends on individual circumstances. In most cases AEDs can be reduced or even withdrawn but this may take some time. Do not change your medication dose without asking your medical team. Your neurologist will discuss any changes in medication with you.

Daisy Garland support means never feeling as though I am doing the ketogenic diet unaided.  

They don't just help the individual, they support the whole family - Isabel.