Considered a complementary therapy just a decade ago, the ketogenic diet is now a recognized mainstream therapy for children with epilepsy for whom medications do not work or work poorly. The treatment is as clinically effective as medications (Martin 2016) and has very few potential side-effects. However, the ketogenic diet is rarely offered as a first line of care before medications are introduced. It is often only suggested when drugs fail to control seizures and when invasive procedures such as brain surgery and nerve stimulator implants are also being considered. Many doctors still believe that parents are unwilling or unable to adhere to feeding their children according to the relatively strict nutritional guidelines of the diet.
The ketogenic diet is a high-fat, very low-carbohydrate, moderate-protein diet that was developed in the 1920s to treat epilepsy before drugs were available. Though the diet was an effective therapy, it fell out of favor as antiepileptic drugs were introduced. It regained favor in the 1990s as researchers at Johns Hopkins Hospital and activist parent advocates demanded access to this dietary alternative. There are now over 80 clinics in the United States that offer ketogenic dietary therapy. Parents should ask their child’s neurologist for recommendations of clinics close to them if the neurologist himself doesn’t offer the therapy.
Scientists believe that ketogenic diet works by changing the metabolism of the brain, which normally relies solely on glucose (blood sugar) for energy. When carbohydrates are severely limited, the body responds by producing ketones from fat in order to feed the brain. This higher level of ketones in the blood is called ketosis. The precise mechanisms by which the ketogenic diet controls seizures are complex. Research is ongoing into the exact biochemical processes that produce its antiepileptic effect, but recent studies indicate that elevated blood ketones and stabilized blood sugar levels are responsible. (Masino & Rho 2012) Additionally, ketones themselves may offer neuroprotective effects to brain cells. Since there are several underlying causes of epilepsy, its potential effectiveness in any individual child is unknown.
Despite being high in fat, the ketogenic is considered a safe treatment for children. Higher cholesterol and triglyceride levels usually normalize after a few months of treatment (McDonald 2018) and children on the diet are given multivitamins and other supplements to compensate for the lack of fruits and vegetables. In general, children also continue to take antiepileptic drugs while on the diet. After 2 years of successful treatment, children are often weaned off the diet to resume previous foods. If the diet does not succeed in reducing seizures after 3 months, other treatments are considered.
Because of its popularity as a treatment for weight loss and diabetes, many cookbooks are now available for the ketogenic diet, often including child-friendly recipes. However, these may need to be modified to strictly adhere to macronutrient ratios and limit carbohydrates to achieve “therapeutic ketosis” (a higher level of ketosis than is required for weight loss or blood sugar control). Ketogenic formulas and shakes, including hypoallergenic ones, are available for infants as well as children who use a gastrostomy tube.
There are certain specific conditions, mainly metabolic (e.g. carnitine deficiency), for which the ketogenic diet is contraindicated. As such, implementing the ketogenic diet should always be discussed and coordinated with your neurologist before starting.
The ketogenic diet is now being studied as an alternative and complementary treatment for autism, brain tumors, traumatic brain injury, and degenerative neurological conditions. As such, children with these conditions may be able to enter experimental studies on using the diet as treatment.
Epilepsy syndromes for which the Ketogenic diet is considered particularly effective (Kosoff 2009):
- GLUT-1 deficiency
- Pyruvate dehydrogenase deficiency (PDHD)
- Myoclonic-astatic epilepsy (Doose syndrome)
- Tuberous sclerosis complex
- Rett syndrome
- Severe myoclonic epilepsy of infancy (Dravet syndrome)
- Infantile spasms
- Children receiving only formula
- Selected mitochondrial disorders
- Glycogenosis Type 5
- Landau-Kleffner Syndrome
- Lafora body disease
- Subacute sclerosing panencephalitis (SSPE)