The ketogenic diet is a medically prescribed diet for those patients with drug resistant epilepsy and can work well for Dravet Syndrome.
It is worth considering early if appropriate medications for Dravet have failed. All types of ketogenic diet have restricted carbohydrates and are high in fat. Protein is always given in an adequate amount depending on which version of ketogenic dietary therapy you are using.
These diets work by replacing fuel sources for the brain to use. In a normal diet our energy comes from carbohydrates such as rice, bread, pasta, vegetables, fruit and sugar which is why we eat it so abundantly and when eaten it changes into glucose and is used by the brain for fuel. Glucose can only be stored in the body for approximately 24 to 36 hours, and if all the glucose is not used then it is converted into fat.
However, if you take this fuel source away, such as when you are not well and not eating, the brain still needs fuel to function so our body’s metabolism will switch over from burning glucose to the ‘back up’ system of burning fat for its fuel. When we burn fat, we produce ketones. It is being in this ‘ketotic’ state that, for some reason, can have a positive effect on seizure control and quality of life. The reasons why are still unclear; researchers are continuing to investigate this.
There are four different types of ketogenic dietary therapy available and each diet is tailored to individual needs.
Like any other medical treatment the Ketogenic diet should not be tried alone and you should be monitored by a dietician and a child neurologist who have experience in ketogenic dietary therapies.
Blood tests are required whilst on the diet every few months and you should fill out weekly reports for your dietician, especially at the start of the diet to make sure that adequate ketone levels are being achieved.
The diet is started with no other changes to treatment being made. Usually, it is possible to tell within three months whether a diet is helping or not. If the diet is beneficial, it is usually recommended that the patient stays on it for two years before slowly being weaned off. In most cases the benefits of the diet remain even after being weaned off the diet and patients can go on to a normal diet.