Information for children and their carers
This leaflet is designed for families with children who have been diagnosed with drug-resistant epilepsy, have attended a ketogenic assessment clinic and are considering the MCT ketogenic diet.
What is ‘MCT’?
MCT stands for ‘medium-chain triglyceride’. MCTs are special fats that encourage the body to make ketones, a chemical the liver produces when it breaks down fats.
What is a ketogenic diet?
A ketogenic diet (KD) is a medically supervised high fat diet that is very low in carbohydrate and contains enough protein for normal growth. It is used to help manage drug-resistant epilepsy and some metabolic conditions.
What is the MCT diet?
The MCT diet is one of three main types of KD. Although all ketogenic diets are very low in carbohydrate, the MCT diet has the most generous carbohydrate allowance.
Your child will need to take four doses of a special type of fat each day; one dose per meal and one before bed.
Your dietitian will calculate:
- how much MCT you need to take per dose
- the amount of fat and carbohydrate needed in your diet
The prescriptions will be carefully calculated for each child dependent on their age, eating preferences and activity levels.
What does MCT fat look like and how will my child need to take it?
There are four products that can be used as part of your child’s diet to achieve the MCT prescription. Each product contains different amounts of MCT.
Only one of the options needs to be taken at each meal; the choice is up to you and your child. Your dietitian will calculate how much of each product needs to be taken to provide the correct amount of MCT.
All MCT products are available on prescription.
Your dietitian can arrange samples of these MCT products for your child to try before starting the diet.
As long as four full doses of MCT are taken every day, you can choose any of the four MCT products your child prefers. The dose may be adjusted while on the diet depending on the levels of ketones and how well your child tolerates the MCT.
There are some recipes using some of the above products available online:
How much carbohydrate will my child be allowed on the diet?
Your dietitian will calculate how much carbohydrate your child will need each day.
Foods such as bread, pasta, cereal, potatoes, rice and some fruits are high in carbohydrate. Carbohydrate is also found in dairy products and starchy vegetables (such as potatoes). You may find it helpful to use lower carbohydrate alternatives to bread, pasta and cereal. Some suggestions of these products can be found in the ‘Getting ready to start ketogenic diet therapy’ information sheet.
Your child’s carbohydrate allowance will be broken down into ‘carbohydrate exchanges’. Your dietitian will teach you how to use these to plan meals.
How much fat will my child need to eat?
As with carbohydrate, your dietitian will calculate how much fat is needed each day.
Foods such as butter, oil, nuts, pesto, avocado, cream and mayonnaise are good sources of fat.
Your child’s fat allowance will be broken down into ‘fat exchanges’. Your dietitian will teach you how to use these to plan meals.
Are there any foods my child can eat freely?
The foods and drinks listed below are allowed freely on the flexible MCT ketogenic diet:
|Vegetables||Celery, Tomatoes, Cucumber, Radishes, Cauliflower, Broccoli, Onions and spring onion, Lettuce, spinach and cress, Aubergine, Mushrooms, Asparagus, Okra, French and runner beans, Olives , Brussel sprouts, Red & green peppers, Cabbage, Celeriac, Sugar snap peas & mange tout, Courgettes, Small serving carrot, turnip, swede, petit pois, Marrow|
|Fruits||Rhubarb (stewed without sugar), Gooseberries, Lemons, limes, and pure lemon/ lime juice, small serving grapefruit, melon, blueberries, raspberries, strawberries and passion fruit|
Salt, pepper, herbs, spices, Bovril, marmite, Stock cubes, oxo cubes, Soya sauce, Worcester sauce, Tabasco, Vinegar, Sugar-free jelly, and Sugar-free pastilles in limited quantities
Ice lollies made from sugar-free squash
|Meats||All meats, including beef, salami, bacon, pork, pepperoni, lamb and veal|
|Eggs||All eggs, including fried, scrambled, omelettes, poached|
|Cheese||All cheese, including brie, camembert, hard cheese, blue cheese, mozzarella, full fat cream cheese and parmesan|
|Drinks||Tea and coffee (without milk), sugar-free squash, sugar-free fizzy drinks, mineral or tap water, unsweetened almond milk, unsweetened soya milk and unsweetened coconut milk.|
Can MCT supplements cause any side effects?
MCT can cause diarrhoea, stomach pain or vomiting in some children. These side effects are usually short-lived and tend to settle after a few days once the body gets used to it.
Should these side effects persist, your dietitian can make suggestions on doses and timings of taking the MCT.
If you feel taking MCT in the required quantities is going to be challenging for your child, the modified ketogenic diet (MKD) is worth considering. The MKD is another type of ketogenic diet which does not require taking MCT and is often better suited to children who cannot tolerate the required MCT doses.
What are the side effects of ketogenic diet therapy (KDT)?
|Constipation||Up to 46% of children experience constipation on KDT; however, this risk is much lower for those on the MCT diet. Constipation is usually managed with a carbohydrate-free laxative such as Movicol. Dietary adjustments can also help.|
|Reflux/ vomiting||Up to a third of children can experience an increase in reflux or vomiting on KDT. Your dietitian will advise on dietary adjustments if this becomes a problem.|
|Low blood sugars (hypoglycaemia)/ high ketones (hyperketosis)||As the body starts to adapt to a lower carbohydrate diet, or in times of illness, there is a risk of having low blood sugar levels. Ketones may also be too high. Your dietitian will teach you how to identify signs of low blood sugar levels and signs of high ketones and how to treat them both.|
|Micronutrient deficiencies||Your neurology team will check the vitamin and mineral levels in your blood before starting the diet, and your dietitian may suggest a regular supplement. Your blood tests will be repeated at set intervals when on the diet.|
|Increased levels of fat in the blood||Your neurology team will monitor the levels of fat (cholesterol and triglycerides) in your blood while you are on KDT. They may increase when starting KDT; however, they often return to normal levels with time. Dietary modifications can also help to achieve healthy levels.|
|Uncommon side effects of the ketogenic diet include kidney stones, slowing in growth and fractures. These are more of a risk for children who remain on the diet longer term and will be monitored by the neurology team.|
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