Modified ketogenic diet for epilepsy

Patients and possibly relatives come to information and assessment at the Specialist Hospital for Epilepsy (SSE) 4-8 weeks before the start of the diet.

Seizures are recorded for at least one month before the diet starts. This will provide a basis for assessing the effect of the diet on the seizures. Fewer seizures, shorter seizures, and weaker seizures are important changes. It is recommended to use a seizure calendar where seizure type, frequency, and duration are recorded. Changes in well-being and quality of life should also be noted. In patients with very frequent seizures, it may be too extensive to count all seizures. In that case, it can be solved this way:

• Many seizure types: Only record the seizure types that have the greatest consequences. These are the seizures that you primarily aim to reduce.
  
• Frequent seizures: For example, choose an hour each day when there are usually many seizures, and record all seizures. Record at the same time each day.

Usually, you will be admitted for a 3-day training stay. For children, it is recommended that both parents are present. The ketogenic diet treatment is started at home on the first Monday after admission.

The principles of the diet

Carbohydrate intake is limited to 10-16 grams daily, mainly in the form of vegetables and fruit. After three months, it is assessed whether the carbohydrate intake should be increased to 15-20 grams per day. Fat intake is significantly increased compared to the usual intake. Protein-rich foods are eaten in normal amounts. Supplementation with vitamins and minerals is necessary.

Meals

The diet usually consists of four to five meals per day. During treatment, meals should not be skipped or there should be more than 4-5 hours between meals during the day. The carbohydrate amount should be distributed approximately equally between the meals of the day. Carbohydrate-containing foods are weighed on a digital kitchen scale with 1 gram accuracy. In addition, the meals must contain a lot of fat. The amount of food is adjusted to appetite. It is important to drink plenty of fluids to provide the body with enough fluid and avoid constipation.

Adjustment of the diet

During the time on the diet, adjustments to fat intake and carbohydrate amount may sometimes be necessary to see what gives the best seizure reduction. To be able to assess whether the diet is effective, it is recommended to try it for at least three months. An individual assessment is made of how long treatment with the diet is needed.

Follow-up at home

• Measure blood sugar and blood ketosis in the morning and evening twice a week in the 1st and 2nd week.
  
• Urine strips once a month to rule out blood in the urine.
  
• Record seizures and information about the child's general condition. Important observations are appetite, nausea, constipation, sleep pattern, and attention. Infections should be noted.
• Measure net weight once a week before breakfast.
  
• 3-day weighed food record after 2, 10, and 22 weeks, then every 6 months.

Follow-up at the Specialist Hospital for Epilepsy, SSE

First check-up is after 4 weeks on the diet. Then check-up three months after the start, and then every 3 months until the 1-year check-up.

Further, there are check-ups every 6 months or as needed. In addition to conversations with a nurse, clinical nutritionist, and doctor, blood tests, urine tests, weight, and height are taken.

EEG recording is performed after 6, 12, and 24 months.

Tapering of epilepsy medication is assessed individually.