Our fabulous Daisy Garland Ketogenic Nutritionist, Judy Wadsworth, was a Daisy Garland Ketogenic Dietitian at the John Radcliffe Hospital in Oxford. She has a vast wealth of ketogenic knowledge and her passion for supporting families whose children are on the diet knows no bounds. We are very grateful to her for creating this advice for families weaning the ketogenic diet...

Weaning off the ketogenic diet

Returning to a normal diet after following the Ketogenic diet can be as daunting as starting the diet. Many parents will have mixed feelings and have lots of questions, such as what does a normal portion of food look like and what foods I should include.

The diet should not be stopped abruptly. The wean should be planned with the help of your Ketogenic diet team. With the Classical diet, the ratio of fat to protein and carbohydrate is lowered over a period. For the MCT diet, MCT will gradually be reduced and the protein and carbohydrate increased. In the Modified diet, fat will be gradually decreased and carbohydrate increased using an exchange system. The aim is for the total calories to be kept stable during the wean.

 Reasons for weaning off the diet.

There are different reasons why the Ketogenic diet is being weaned.

1. The diet may be weaned after approximately 2 years to evaluate the benefits of the diet and whether to continue with the diet or not.
2. A child has not benefited from the diet after 3 to 6 months of trialling it. There has been no change in seizure frequency or intensity of the seizures.
3. The child or young person is not coping with the diet, whether this is physically or mentally. They might be experiencing intolerable side effects, which can be very stressful for the family and child. Young people might feel it is affecting friendships, social engagements and restrictions at a time when they are looking for more independence. 

How long should the wean take?

It can take a few weeks, months or even a year depending on how long the child has been on the diet, the effect that the diet has had on seizures, and the level of Ketosis.

If the child has been on the diet for less than 3 months with no significant improvement in seizures, then the diet can be weaned quickly in 1 to 2 weeks.

If the child has been on the diet for approximately 2 years and has seen a significant reduction in seizures and reduced anti-epileptic medications (AEDs), then this might be a slow wean of 6 weeks or longer.

If the child is on diet alone, all AED medications have been stopped and is not having seizures then the wean might take up to a year.

Classical diet

The ratio is reduced stepwise by either 0.5 or 1 each time.

The dietitian will need to calculate new dietary fat, protein and carbohydrate values and the recipes adjusted. It is probably best not to batch freeze meals during this time to avoid wastage. The Ketogenic diet team will determine how long the child is on the lower ratio before reducing it again. However, any changes should be a joint decision with the family dependent on seizure activity, ketone levels and general wellbeing.

If there is concern over increasing seizure activity, then the wean can be slowed or even returned to the previous ratio.

MCT diet

Weaning off the MCT diet is also a stepwise process. The dietitian will work out a programme of decreasing the MCT and increasing the protein and carbohydrate exchanges. Typically, MCT fats will be decreased by 5 – 15g each time. The changes may be daily or weekly or longer. If MCT fat makes up a high percentage of the total fat content, then additional long chain fat may be needed to maintain a similar calorie intake and prevent the child from losing weight.

Modified Diet

Modified diets tend to be taught slightly differently in different centres. Commonly carbohydrate and fat and protein are taught in exchanges. The Ketogenic diet team will advise on gradually decreasing high fat foods and increase carbohydrate and protein foods to ensure calories are maintained.

Monitoring

Ketone levels must be monitored regularly especially when a change is made. A normal diet can be started when Ketones are no longer being produced or less than 1mmol/l.

Symptoms to look out for

Symptoms of a keto withdrawal if it’s done too quickly might be fatigue, low energy and constipation.

Foods to choose after the wean

There are 2 different types of carbohydrate, simple and complex. Complex carbohydrates have more nutrients and fibre and take longer to digest.

Simple carbohydrates are short chains of sugar molecules that are absorbed quickly and cause a spike in blood sugar. Simple carbohydrates such as sugar, fizzy drinks, sweets and highly processed foods are therefore best avoided initially.

Complex carbohydrates foods to include are whole grain, beans, vegetables and fruit.

Healthy fats are avocado, nuts and seeds and olive oil.

It is important to stay hydrated when increasing complex carbohydrates to prevent any digestive discomfort.

Concentrate on a diet high in lean protein, healthy fats and complex carbohydrates.

It is important to continue to give a vitamin and mineral supplement until back on a normal diet.