The Ketogenic Diet
The ketogenic diet, which is very high in fat (90%), very low in carbohydrates, and low in protein, has been studied and debated for decades. It has proven to be helpful for many children with severe epilepsy that does not respond to AEDs. It is not clear why it works. The standard theory is that burning fat instead of carbohydrates causes an increase in ketones. Excess ketones (called ketosis) appears to alter certain amino acids in the brain and to increase levels of the neurotransmitter gamma aminobutyric acid (GABA), which helps prevent nerve cells from over-firing. Some experts posit, however, that it is not ketones but the calorie restriction involved in the diet that provides its anti-seizure benefits.
Benefits of the Ketogenic Diet. Studies report significant reductions in seizures in up to 85% of children who are good candidates for the program. A 2001 study was conducted on children 3 - 6 years after they had initiated the diet. In the study, 27% were with seizure free or had experienced more than a 90% reduction in seizures. About 40% were either off medication or down to one drug. Only 10% of the children were still on the diet. Many children also report significant improvements in attention and social functioning 1 year after starting the diet.
Candidates of the Ketogenic Diet. The Ketogenic Diet seems to be most helpful for children in the following groups:
- Children ages 1 - 10 who suffer from Lennox-Gastaut syndrome
- Children who suffer from severe seizures associated with injury or birth defects
- Children with severe symptoms who do not respond to medications. Children younger than 12 have the best outcome, but some studies suggest the diet may be useful for motivated adults with severe epilepsy that does not respond to medication.
- Possibly safe and effective in some infants with uncontrolled seizures
- Most studies report benefits from the diet on patients with generalized seizures, but some patients with partial seizures may benefit from it.
Typical Ketogenic Diet. (This diet must be professionally monitored! Parents can endanger their children if they try the program on their own without consulting a doctor or trained health expert.) The child fasts for the first 2 - 3 days, then the diet is gradually introduced. The regimen uses small amounts of carbohydrates and large amounts of fats (up to 90%), with very few proteins and no sugar. Children generally consume 75% of their usual daily calorie requirements.
A typical dinner may include a chicken cutlet or piece of fish, broccoli with cheese, lettuce with mayonnaise, and a whipped cream sundae. Vegetables may include celery, cucumbers, or asparagus, cauliflower, and spinach. Breakfast might consist of an omelet, bacon, and cocoa with cream. (Artificial sweeteners are used for any desserts.)
The diet is difficult, as a slight deviation from the diet can provoke a seizure. Children cannot take medications that contain sugar (which is common in many drugs produced for children). Some sunscreens and lotions contain sorbitol, which is a carbohydrate that can be absorbed through skin. Still, most children tolerate the diet if it reduces their seizures. In fact, between 50 - 75% of children are able to stay on it.
Researchers are also investigating the Atkins diet, a popular weight-loss diet that has similar effects but is less restrictive than the ketogenic diet. Early results indicate that it might be helpful for some young people. Still, parents should not put their children on this diet without doctor support.
Side Effects and Complications. To prevent serious side effects, children require regular monitoring by a doctor. Side effects or complications reported with the diet include:
- Kidney stones (the most severe common side effects, occurring in 6 - 10% of children on the diet). Patients should drink plenty of fluids. Oral citrate may be protective.
- Unhealthy cholesterol and lipid levels. The diet has been associated with very unhealthy changes in cholesterol levels and other lipids (fatty molecules). Since few children stay on the diet more than 2 years, such changes are unlikely to cause harm to the heart although long-term effects are still unknown. Some parents replace cream with heart-healthy olive or flaxseed oils and have found no increase in seizures in their children. Parents should be sure to consult with their doctor about any changes to the diet.
- Lethargy
- Nausea
- Diarrhea or constipation
- Dehydration
- Bone loss
- Recurrent infections
- Weight loss
- Bad body smell
- Behavioral and mental changes
Rare but serious complications associated with the diet include pneumonia, severe infection, hepatitis, pancreatitis, and cardiomyopathy (injury to heart muscle).
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