Phase I – The pre-counseling period & investigations:
Patient’s history about the type and frequency of seizures is recorded, previous treatments and ongoing medications are evaluated clinically. Depending on these, the patient is selected to be a candidate for the ketogenic diet.
During this period the patient, parents and family members are given extensive knowledge of the various aspects of this therapy. We explain them the role and likely outcome of the therapy, difficulties that could arise, it’s efficacy and the side effects. We also stress on realistic goals and make sure that the patient does not expect on instant cure.
In case of younger children, parents mainly decide about starting the treatment where as in case of older children, getting child’s co-operation is one of the very important aspects and only after the patient and the family agree, the protocol of the diet is started.
The first and foremost step in our protocol is to check all biochemical parameters, psychological and intelligence tests, and a pre diet E.E.G. and a scan are also undertaken.
After this, we keep patients on a carbohydrate wash-out diet for a period of 2-3 days as against the standard method of fasting. Here, we advise them a diet very low in carbohydrates with normal proteins and fats are increased gradually in the diet. This diet helps in utilizing the body glucose stores and thus helps in shifting body metabolism to utilise fats for energy instead of carbohydrates, resulting in production of ketone bodies( Aceto acetic acid, Beta hydroxy butyric acid, Acetone).Increasing fat gradually allows the patient to get used to a high fat-ketogenic diet which would be started thereafter.
Phase II – Initiating the Diet
Normally, ketogenic diet is initiated with fasting. The aim of the fasting is to bring patient into 4+ ketosis level. This usually takes 24-48 hrs. It is the most crucial period for the entire team, especially, the parents.
With our modified protocol we are able to reduce and now also eliminate the fasting period and hospitalisation. This is due to the carbohydrate wash out diet that patient normally reaches 4+ ketones even without fasting. Once the patient reaches 4+ levels of ketones in urine, then we start the ketogenic diet.
The total calories, allowed is decided upon by considering patients height, weight, ideal body weight, activity level etc. The keto ratio, which is a specific ratio of fat :protein + carbohydrate is also decided. It varies from 3:1 to 5:1, 4:1 being commonly used. We start out with 2:1 ratio as we realized that most patients may not require higher keto ratios. We are able to maintain 4+ level of ketones even with such a lower ratios. This allows more variety in the diet, as the amount of carbohydrates is more in a lower keto ratio.
The parents and caregivers are given extensive training on various practical aspects of the diet therapy. The training imparted to the parents includes explanation about:
- Importance of the diet
- Use of weighing scale and other equipments
- Preparation of recipes, methods of preparation
- Vegetables and fruit exchange list
- Water allowance and timings
- Importance of meal timings
- Check urine ketones and maintain the record
Phase III – Fine-tuning
This is the most important phase of the diet treatment. This varies with patients with an average period of 4-6 weeks. Patients come for a regular follow-up with the physician and dietician. During this period, calories and ratio of the diet are adjusted in order to maintain 4+ level of ketones throughout the day. This is based on patient’s height, actual weight, ideal body weight and maintenance of ketones.
However, these changed should not be made too fast and at a time only one of the factor should be modified in order to avoid confusion on the actual change required.
New recipes are calculated as per the changes in the calories or ratio. New recipes are also designed to add variety to the diet.
Changes in medicine are made as per the progress of the patient and seizure control.
Following successful implementation of the diet and seizure control, the patient is slowly weaned off medication.
The lines of communication are kept open to clear the doubts and provide the motivation and support required.
After the treatment is complete the patient may revert back to his normal diet