Epilepsy is a potentially disabling, difficult to control disease. Although most children are effectively controlled with one or more anti-seizure medications, some develop "intractable" or more difficult to control seizure disorders. These children and adults suffer frequent seizures, as well as cognitive, social and psychological impairments due to epilepsy. Medications can sometimes help with several of the "comorbidities" (co-occurring disorders) of epilepsy, but can also sometimes cause side effects themselves.
Non-medical treatments for epilepsy include seizure surgery, the vagus nerve stimulator, complementary/alternative treatments and dietary treatments. Diet and fasting was first discussed as a treatment for epilepsy in the modern era in the early 1900's, when fasting was identified as a means of treating uncontrolled, persistent seizures. Some even think that the success in the Gospels when Jesus directed the possessed (epileptic) to fast was due to the starvation state that resulted.
The ketogenic diet was introduced as a highly effective treatment for epilepsy in the 1920's, and the science and methodology has been rigorously studied since then. Many centers around the world now use this treatment for epilepsy, and the Charlie Foundation is an organization that provides support, information and guidance on the diet.
Although the diet is efficacious, it requires the highest level of monitoring by dieticians, physicians and parents to maintain a low sugar, high "ketone" state. Very minimal sugar intake can disrupt the diet, such as using the wrong toothpaste or eating the wrong food. Patients are limited to mostly fats and protein, and therefore have to avoid foods with high sugar contents. The diet also has a 10% likelihood of serious complications, including kidney stones, dehydration, and metabolic disruption.
Recently, physicians at Johns Hopkins University proposed utilizing a modification of the ketogenic diet to improve compliance, lessen side effects and yet still treat seizures. This diet is very similar to the Atkins diet, but again, requires close monitoring by dieticians, and continues to expose children to the risk of cholesterol elevation, dehydration and nutritional challenges. Click here to review the case of Alyssa, who has intractable epilepsy, and is being treated with the Atkin's diet.
Alyssa began having seizures in the 2nd year of life. She has been treated with multiple medications, and has undergone brain surgery as well. The surgery successfully controlled seizures for a year and a half, but they have returned, necessiting a second surgery for implantation of the Vagus Nerve stimulator, a device that is implanted outside the brain to stimulate the nervous system and decrease seizures. Because her seizures continue, and she has also been experiencing learning and behavioral difficulties possibly due to her medications, we have started her on the Atkin's diet.
We are still in the initiation phase of the diet for Alyssa, adjusting her diet for toleratnce and seizure control. During this phase, she experienced a viral gastroenteritis that caused serious dehydration and admission to the hospital. She has been discharged and is now doing well, but we are waiting for evidence that the diet is going to help her condition. If it doesn't the family is going to consider initiation of the full ketogenic diet to determine if a more aggressive dietary treatment is necessary.
