The ketogenic diet has been known about for over 100 years as a non-drug treatment for epilepsy. It is more commonly used in children but more recently some older adults have seen a reduction in their seizures as well.

It is a high fat and very low carbohydrate diet that mimics fasting so that the body uses fat as its energy source rather than carbohydrate. 

NICE Guidelines recommend that if a child or young person has not responded to 3 anticonvulsant drugs they can be referred for a trial of the ketogenic diet.

The ketogenic diet is a calculated, medically managed diet under the care of an experienced ketogenic dietitian. Not all NHS hospitals will be able to offer this service and those that do tend to have long waiting lists, hence there may be a delay before starting the diet even after the referral to the ketogenic dietitian has been made.

Studies have shown that 10 to 15% of children will become seizure free on the diet, and over half will have a very good response. There will be some children however that don’t see a notable improvement. Most families will be offered a trial of the diet after years of trying many different anticonvulsant drugs and so hopes can run high that the diet will be successful. It will be important to be aware of the statistics mentioned above.

The diet is used primarily to reduce seizures, but there are also other reported important positive effects.

• A potential reduction of medications and hence a decrease in side-effects from those drugs.
• Increase in alertness and concentration which can both aid learning.
• Increased energy levels which might allow the child to interact more with friends and peers and participate in social activities.
• Shorter seizure lengths and faster recovery too.

The diet is not usually for life - GLUT1 being the exception. Initially the diet is trialled for 3 months and then reviewed. At this appointment a discussion should take place with the neurology medical team and family as to the benefits of continuing with the diet. There might be reasons for stopping the diet at this point. For example the child or family may find the diet difficult to cope with because it is impacting too much on everyday life or there has been very little change in seizure activity. If the child remains on the diet, it is commonly continued for up to 2 years – in certain instances, much longer.

Starting the Diet

It is so important to be organised, have prescription items ordered, stocked the cupboard with keto friendly food, purchased lots of storage pots, and have some accurate scales. Many of these items will be included in your Daisy Welcome Box, sent to you free of charge on the request of your ketogenic dietitian.  

The dietitian will arrange some appointments to teach the family about the diet, which will probably be in the dietitian’s outpatient clinic. Education about the diet is so important. Watching videos or reading about the diet will improve your understanding.

There are 3 main different versions of the diet, Classical, MCT and Modified. The dietitian can discuss which version of the diet is more suited to the child and family situation.

The Diet

Initially the diet can seem very daunting as it is completely different to a traditional western diet. Many parents will not have thought about the macronutrients fat, protein and carbohydrate before and the foods that contain them, so for some it can be a steep learning curve.

The diet involves accurate weighing and measuring of foods so having reliable scales is important. It’s a good idea to allocate a few hours in the week to prepare a meal plan and maybe batch cook a few favourite recipes*. However, there will undoubtedly be tweaks to the diet calculations before good ketosis is achieved. *Don’t be tempted to batch cook lots right away.

Meals will look very different; fat provides approximately double the calories of carbohydrate and protein which means that meal portions will look smaller. The diet is calculated by dietitians to ensure that the total daily calorie for each child is sufficient so that they don’t feel hungry but will grow and thrive on the diet. The dietitian will provide a few recipes for meals and snacks in the beginning. There are so many great recipes to choose from on The Daisy Garland website here. There are two programmes to help parents calculate their own meals as they become more confident called EKM and MyKetoPlanner. Your dietitian will give you more information about this at the appropriate time. It doesn’t matter how quickly or slowly the diet is introduced, again whatever the family feel they can cope with.

Ketones, Ketones, Ketones

Ketones are a measure of whether the body is using fat as its primary energy rather than carbohydrate. The target range is 2mmol/l – 5mmol/l. Ketone levels fluctuate throughout the day and night. Ketone readings tend to be lowest in the morning because of the production of the hormone cortisol in the early hours of the morning. For the first few weeks parents will have to measure ketones twice daily, however once good ketones are being produced monitoring can be reduced to a few times per week. Ketones can be measured in the blood or urine. Blood ketones are the most accurate but if this becomes too stressful, measuring urinary ketones is fine.

Special situations

Eating out

To cope with eating out whilst on the ketogenic diet it’s advisable to plan ahead; whether this means contacting the restaurant, school or nursery to explain about the diet. Very few schools and nurseries can cater for the ketogenic diet so most children will need to take a packed lunch. Examples of packed lunches can be found on The Daisy Garland website, just click the link below…

Lunchbox Ideas from Daisy's Keto Café

Illness

It is important that parents are provided with information about managing illness especially if ketones become too high. You can read about this on The Daisy Garland website…

Managing Illness on Keto

Travel

There is some very practical help about travel from The Daisy Garland and parents on our website…

Keto Top Tips

Support

Daisy’s Keto Café parent support group, accessed via Facebook, has 1000+ members and provides lots of support and help with any concerns and worries. The Café is a private, closed Facebook group where there is always someone available to listen and offer practical support. Every Thursday morning there is a live chat thread which allows parents and carers to chat freely with input from our Daisy Garland Nutritionist for those requiring additional help and support.

Daisy's Keto Café