No one knows why the ketogenic diet―which was developed in the 1920’s―works so well for seizure control, but it does. And these days, it’s widely considered one of the hottest food fads in America.
What is the ketogenic diet?
The ketogenic diet (also known as the “keto diet”) is a high fat, low carbohydrate, and “just enough” protein for growth and maintenance diet. Typically, it follows a ratio of 3-4 grams of fat for every 1 gram of carbohydrate and protein. This means that about 90% of the calories come from fat, requiring those on the diet to eat mostly fatty foods such as butter and cream. Although it may sound terrible, there are many creative recipes that make this a tasty approach. What distinguishes the traditional ketogenic diet from the modified-Atkins diet is the rigorous attention to food intake and limitation on total calories.
When should a ketogenic diet be used for seizure control?
Some children with epilepsy can have disabling seizures―up to hundreds per day―which can severely limit their quality of life and prevent them from participating in school and social activities. Seizure control is the first step in helping kids with epilepsy achieve otherwise normal lives. When medication isn’t working and/or the side effects from it are too much to bear, the ketogenic diet might be offered as a treatment option. In fact, the statistics show that it is often more effective than another, new medication, and frequently also improves alertness and behavior.
According to a 2008 consensus report from an international expert panel, the ketogenic diet “should be offered to a child after two anticonvulsants are used unsuccessfully.” The diet must be started and maintained under close medical supervision of an experienced medical team—including a dietitian.
Ketogenic diet looks different for every child and depends on several factors:
- The child’s age and weight
- How the child and family eat (kosher, halal, vegetarian, organic)
- The child’s diet prescription (the specific combination of fats, protein, and carbohydrates weighed out)
The diet may not work for everyone but is suitable for many different patients.
The ketogenic diet can be effective for all seizure types and epilepsy syndromes. Some of the specific disorders that often respond to the diet include infantile spasms, myoclonic-astatic epilepsy, Dravet syndrome, Dose syndrome, myoclonic-astatic epilepsy, Rett syndrome, migration disorders, GLUT-1 deficiency and tuberous sclerosis complex.
Typically, children are started at a Level IV Epilepsy Center and monitored as in-patients by a ketogenic diet team that may include a pediatric neurologist, pediatric epileptology’s, nurse practitioner, dietitian, nurse, and social worker.
How well does it work?
Although it does not work for every child, several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications or those who were unable to tolerate the side effects of their medications.
Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. It can start to help after just one week, but more often it can take a few weeks up to several months to judge whether it will be effective. If the diet successfully controls seizures, it may be continued for several years under the supervision of the child’s health care team. Many children on the ketogenic diet continue to take seizure medications but on average they require one less medication and often the dosage of remaining ones is lowered.
Does the ketogenic diet have any side effects?
The ketogenic diet may cause side effects in some children, including constipation, reflux, weight changes, and kidney stones (due to uric acid build-up in the blood). These problems can be minimized by staying hydrated and careful monitoring. Some families notice mood changes such as hyperactivity or irritability.
Many of the side effects can be reduced by adjustments to the diet or with additional medication.
If you are considering the ketogenic diet, ask your child’s doctor to explain all possible side effects, what you should watch for and what action you should take for each one.
Special Considerations for Families: