We were admitted to Emory this afternoon to begin the ketogenic diet for Piper. It should take about 4 days to get it started while they monitor her. We will be making monthly visits to see how she is doing. The basics of the diet are.....
The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures. (thanks Wikipedia)
So what this means for Piper is that her body will need to be in ketosis to get started. This means we will be doing an overnight fasting period. Fasting with an infant is insane to even think about!! She is able to drink water and diluted sprite zero. So far she had 8oz of water and 4oz of diluted sprite...not quite fooling her on this. It's going to be a long night for us but that's just part of it. After she goes into ketosis they will form a dietary plan for her diet. The nutritionist will meet with us tomorrow to decide on her plan. They make a special a formula for the diet that we will have to order online. Since she isn't eating solid foods it will be an easy transition. Once she gets older this will be an extremely complicated diet because We will have to measure and track every single thing that goes in her mouth. We will have to find special recipes for her and there will be absolutely no mistakes allowed or she could have seizures again.
The success rate for stopping infantile spasms is better than just general epilepsy. We really hope and pray this will be effective on her. It will not be an immediate change but over 3-6 months we should see if it will work. In the meantime she is still on two of her medicines and they are weening her off the other two. Hopefully she will be in a better mood without the steroids.
I will keep everyone posted!