Ketogenic Dietary therapy (KDT) For children who are fed enterally and their carers

This leaflet is designed for families with children who have been diagnosed with drug-resistant epilepsy and have been prescribed Ketogenic Dietary Therapy (KDT).

What is Ketogenic Dietary Therapy?

KDT is used to help manage drug-resistant epilepsy. First reported in the 1920s it is a medically supervised high fat diet, which is low in carbohydrate and contains enough protein for normal growth. The diet is carefully calculated for each individual child dependent on their age, feed tolerance and activity levels. The quantity of fat, protein and carbohydrate will be calculated by your Dietitian.

When is it used?

KDT is usually used when current drug therapies are not providing sufficient relief of seizures. It is considered as a novel drug intervention.

How successful is it?

When you have been prescribed two or three different anti-epileptic medications, trialling KDT is more likely to give you better seizure control than starting a new medication. Fifty to sixty percent of people will see a good reduction in the number of seizures they have, with ten percent becoming seizure free. Your doctor will discuss with you what your individual goals should be to consider the diet to be a successful therapy for you.

Are there different Ketogenic diets?

There are a number of different versions of Ketogenic diets. Research has shown that they are all effective in reducing seizures. Your Dietitian will discuss with you the best Ketogenic diet for you.

All Ketogenic feeds given via a feeding tube are based on the Ketogenic Classical diet.

What is the Ketogenic Classical diet?

These diets are described as a ratio of fat to protein + carbohydrate. You will see theses described as 2:1, 3:1 or 4:1 ratios. The larger the ratio the more fat there is in the feed.

Is there a Ketogenic feed that can be prescribed?

Yes. When you start on KDT your usual feed will change. If your current feed is delivered to you by a home delivery company, then this company will be able to deliver your new Ketogenic feed.

Ketogenic feeds come in 200ml or 250ml cartons or are powdered formulas that need to be reconstituted with cooled boiled water.

Your Dietitian will advise you on how to make up your new feed and ensure you have the appropriate equipment to use to give the feed.

All the Ketogenic feeds are available on prescription.

How do I start the diet?

Your Dietitian will ask about your current feed volumes, timings and feed rates. Your new feeding plan should be very similar, but the feed you give will change.

You may be admitted to hospital to start therapy slowly over three days. However, older children are safe to start the diet slowly at home over 7-10 days. Training on how to prepare feeds, and how to monitor ketones and blood sugar will be provided during your hospital stay or be taught before you start the therapy at home.

What if I am allowed to eat small amounts of food as well?

You can continue to take foods orally. However, all foods you eat must have a similar Ketogenic ratio to your main feed.

Your Dietitian will give you special recipes so that you can make suitable Ketogenic snacks to eat. These can be made in batches and stored in the freezer.

There are no pre-prepared Ketogenic snacks in the supermarket. However there are some ketogenic foods available on prescription; your dietitian will let you know if there are any that are suitable for you.

If extra foods, particularly those containing carbohydrate are eaten, this can cause a sudden drop in ketones. This may result in sudden increase in seizures. Therefore it’s important that those around you know that you are on a ketogenic diet.

Will I need a vitamin and mineral supplement?

Your Ketogenic feed contains vitamins, minerals and trace elements. If you need any extra, your Dietitian will advise on an appropriate supplement is required.

What will happen to my Medications?

When you start KDT, your usual medications will not be changed. However, the form they are given in may be moved to one which gives the smallest amount of carbohydrate possible. You Doctor and Dietitian will advise you on which medications need to be changed.

Tablet medications contain the least carbohydrate, while liquid medications, containing sugar are to be avoided.

Some liquid medications contain sugar alcohols. These can reduce the amount of ketones that you produce when on KDT. Medications which contain sugar alcohols can be used with caution.

The following list of excipients will help your pharmacist choose the best form of your medication for you.

Ingredients which are sources of carbohydrate:

• Sugars: dextrose, fructose, glucose, lactose, sucrose, sugar
• Starches: cornstarch, pregelatinized starch, sodium starch glycolate,
• Hydrogenated Starch Hydrolysates (HSH)
• Maltitol
• Isomalt
• Sorbitol
• Xylitol
• Mannitol
• Alcohol
• Glycerine
• Ascorbic acid

Ingredients which are not sources of carbohydrate:

• Cellulose
• Carboxymethylcellulose
• Hydroxyethylcellulose
• Microcrystalline cellulose
• Polyethylene glycol
• Magnesium stearate
• Aspartame
• Saccharine
• Acesulfame potassium (K)
• Erythritol

What will I do if I am unwell?

If you are unwell your ketone levels may change.

You should continue to have your Ketogenic feed if possible.

If this is not possible, ensure you have adequate fluids via your normal feeding tube.

If you have been vomiting or have diarrhoea consider using an oral rehydration solution, for example Dioralyte® in place of water. (This is available over the counter at a pharmacy). It is usually recommended that Dioralyte® is only used for 24-48hrs. Contact your GP and Dietitian if illness persists.

Restart the Ketogenic diet slowly, with half volumes of feed to begin with, building up to full feed volumes over a couple of days.

What pain relief may I use while on KDT?

Paracetamol and Ibuprofen medications can be used as directed by the manufacturer. Choose tablet forms which will contain the least amounts of additional carbohydrate. Check with your pharmacist if these can be crushed and given via your feeding tube.

If choosing liquid paediatric pain relief always choose sugar free varieties to minimise the carbohydrate content.

What if I need antibiotics?

If you have an infection or are unwell, your Doctor will advise you on the medication that needs to be prescribe. Always ensure it is given in the form lowest in carbohydrate and is suitable to be given via your normal feeding tube.

Ask your doctor or pharmacist to check new medication for you.

How will I measure my ketone level?

When on KDT you will be required to measure you ketone levels daily. This will allow the diet to be monitored and modified to ensure it is most effective.

Ketones are measured in the morning before the first feed of the day (breakfast), and before the last feed of the day (supper).

They can also be tested at other times of the day to see how the ketones are being maintained. The ketones are often lower in the morning after the overnight fast.

The aim is to have moderate to high ketosis. If measured in the urine the range is 4-16 mmol/L ( or ++ to ++++). If measured in blood the range is 2-5 mmol/L. Ketones over 5 mmol/L need to be monitored closely.

Ketones can be measured either in the urine or in blood. Your Dietitian will advise you on how to monitor ketones.

Where can I get more information?

We recommend the following websites, which provide a wide range of reliable information on the Ketogenic Diet.

• Matthew’s Friends (opens in a new tab)
• Charlie Foundation (opens in a new tab)
• Epilepsy action (opens in a new tab)
• Daisy Garland (opens in a new tab)

Our contact information

Dietitians 01223 216 655: queries about the diet, ketones, low blood sugars or high ketones, change of feed regime, or home delivery company.

Neurology nurses 01223 216 662: queries about increases in seizures, change in medications and other concerns.

In an emergency, contact the paediatric neurology on-call registrar.

During working hours, call the Child Development Centre 01223 586618.

Out of hours or at the weekend, call Addenbrooke’s Hospital on 01223 245151 and ask for the on-call paediatric neurology registrar.