What is a ketogenic diet?
The ketogenic diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter and vegetable oils provide the necessary fat. The diet also eliminates carbohydrate from of the diet. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be most effective. The Classic diet consists of a ratio in grams of fat to non-fat (protein and carbohydrates) of 4:1 and 3:1. For Braxton he will be having a mixture of 'Ketocal' liquid, baby formula, beneprotein, MCT oil, and water. We have to mix enough for the day each morning, using a scale for precise measurements, then give him exact amounts at specific times during the day.
How does the diet work?
No one is certain how the diet works. A metabolic change occurs in the body which affects brain chemistry. Despite many hypotheses, the mechanism by which the diet works to control seizures remains a mystery. Scientists in several laboratories around the world are working to unlock this mystery with animal studies.
How long and effective is the diet?
The diet is generally used for a period of up to 3 years if it is helpful in reducing or eliminating seizures. If the diet is not helpful, it will be stopped within a few months. While on the diet 1 out of 3 children has 50 to 90% less seizures, 1 out 3 children has more than 90% less seizures, 1 out of 10 children has no seizures. 80% of children keep seizure control after being weaned off the diet.
Are there any adverse effects of the ketogenic diet?
The most common adverse effect of the diet is constipation. A less common adverse effect is kidney stones. These problems can be prevented by making sure that Braxton drinks adequate water. There are two anti-seizure medications which can cause acidosis and kidney stones which should be monitored very closely when used with the ketogenic diet, and of course Braxton is taking one of these medications (topamax). Even though Braxton is eating mostly fat, he isn't expected to gain lots of weight as his calories are calclauted to give him exactly the nutrition he needs. In fact it is more likely his growth will slow, especially his height. There are some issues of missing essential nutrients from the high fat diet, but these can be prevented by using vitamin and mineral supplements. He will have higher chance of infection. To make sure Braxton doesn't have adverse symptoms, we check his urine for ketones and his blood for glucose daily, he has weekly weigh ins, monthly blood work, and we are in weekly communication with his dietitian.