Cliff Notes: Ketogenic Diet

A lot of people, even people IN the epilepsy world, don't know a whole lot about the Ketogenic Diet. In a phrase, it is a diet used to control hard-to-treat seizures.

The diet is a high-fat, low-carb, moderate protein diet.

Please note that I am not a nutritionist nor have I spoken with one in depth about the diet. All of this information is from what I have been told by doctors and what I have researched online and in books. So bear with me as I don't use fancy lingo or doctor terms. After we see the nutritionist I will definitely make an update post!

Some really excellent resources about the Ketogenic Diet are below if you would like to do a little research on your own :)

FAQ in simple terms: http://www.charliefoundation.org/faq/ketogenic-diet.html

Diane Sawyer did a story on ABC about the Ketogenic Diet and follows 2 children's stories: http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995

From what I understand, the Keto Diet was created because an accident was found. A wonderful accident. They were performing studies on people with epilepsy, one of those studies was fasting. They found that once the body reaches a point where it is feeding off of its stored fat rather than burning carbs, sugars, etc. for energy the seizure activity was decreased and some were seizure free. The process of your body using stored fat is called Ketosis - hint Ketogenic Diet.

So this Keto Diet mocks that process by giving your body more fats to burn than other ingredients.

Rayleigh will obviously have to take a multi-vitamin each day to keep with the deficiencies that will be in the diet. A typical meal could be 1/4 a hot dog, heavy whipping cream blended with flavoring like vanilla extract or cinnamon, 3-4 green beans and a slice of apple.

In Rayleigh's case most foods will go through our food processor to be pureed or close to since she is not yet finger feeding.

In the Diane Sawyer interview about Keto Diet (link above) she talks with 2 experts about the diet, both doctors. They state that several of their patients starting the Keto Diet have already tried several anti-convulsant medications. One of the doctors also says that they've had several children who have hundreds of seizures a day become seizure-free completely and most of the time that happens within just a few weeks of being on the diet.

The Charlie Foundation's FAQ breaks down the numbers:

• 1/3 of children on the diet get to 90% or more seizure control
• 50% of those children become completely seizure-free
• 1/3 of the children on the diet get to 50% seizure control
• 1/3 of children on diet quit the diet because it is either ineffective or not done right

Rayleigh will continue to take her Trileptal and Clobazam while on the diet. If she gains seizure control on the diet we may take her off the medicines down the road.

If the diet is successful she will stay on it for 2-3 years and then we will wean her back into "normal" food.

Most of time, whatever seizure control you gain while on the diet 2-3 years you keep. So, let's say Rayleigh would go down to 1 seizure a week rather than 1-2 a day; when she gets off the diet she would most likely stay at 1 seizure a week and not go back to 1-2 a day.

If the diet is not successful she will get off of it within 2-4 months of starting. We should see starting results of it after she has been on the diet for a full 10 days. She weans onto the diet while under medical supervision. We will be at Cook Children's Hospital in Ft. Worth, TX to start her on the diet soon.

We really need this to work for our baby girl!