How long will Luke be on the diet?-- The docs have asked us to commit to at least a month. There is still some "tweaking" of the diet that can be done, so that could add another couple of months. If the diet is successful (and measuring success can be complicated........but probably something like >90% reduction in seizures in addition to a normalized EEG) than kids are usually on the diet for 2 years, after which time we would try weaning him off. Many kids remain seizure free even after coming off the diet, others have to continue for another few years.
Doesn't he gain weight eating all the fat?--Interestingly, no. He is losing weight. Kind of a bummer, but the lesser evil compared to daily seizures.
What exactly does he eat? --For now we've chosen to do just the liquid Keto diet which has three components (all of which are carefully weighed separately on a gram scale and then mixed together in a bottle): 1) RCF--a soy-based, low carbohydrate formula 2) Unsweetened apple juice to provide a small amount of sugar/carb and to sweeten the taste 3) A fat source. For Luke we are are using either olive oil or heavy whipping cream.
As he grows, and if this works.....we will slowly add solid foods to the mix. The solid food allowed on the Keto diet are not so appealing for a one year old......bacon, mayo, lettuce, popcorn, omlets, etc. So, we'll probably wait another 6 months or so to make any big changes there.
Does Luke get a balanced diet? No, the diet is not balanced. Luke has to take a supplemental vitamin/mineral powder while he is on the diet. I should also just say here that the diet is not "natural". Our brains love glucose and are designed to be fueled by carbs. So, making the body run almost exclusively on fat and protein isn't natural or meant to be a life-long diet change.
How does it work?--Ahh, this is the biggie!! I'm not sure....and really the medical community isn't entirely sure either. Basically, when the body burns fat, it produces ketones. Whereas people normally get energy/fuel from carbohydrates, the keto diet allows for the body to burn fat for energy. The increased level of ketones has shown to cause a reduction in seizure activity. That's the "in a nutshell" version. You can find a plethora of information if you Google Ketogenic Diet.
What happens if Luke comes out of ketosis? Luke is now "in ketosis", meaning his ketones levels are increased. If he achieves seizures freedom, then we have to be very, very careful. Coming out of ketosis would easily cause a seizure. Believe it or not, that means carefully controlling pain meds (Children's Tylenol is loaded with yummy, grape, sugary stuff!!), antibiotics and EVEN lotions, soaps, toothpaste, etc.
The great part about doing the diet now, while he is very young, is that Luke can't really "cheat". Stories have been told of older kids on the diet who found a few crumbs on the floor and ate them, only to come out of ketosis.
Does Luke still have to take anti-seizure meds? Ideally, no. He is currently being weaned off his last anti-seizure med. (And for the first time in his life, will be off of ALL medication!!) Some kids do find the best results with a combination of the diet and meds. However, since the diet it typically used for kiddos who have drug-resistant epilepsy, many are strictly on the diet.
Is the diet pretty effective? Research shows about two-thirds are "significantly improved", meaning they achieve at least a 50% reduction in seizures. Seizure freedom occurs in about 10%-20% of cases. The encouraging, recent research shows that particular kinds of epilepsy (Infantile Spasms being one of those) show even greater success rates.
Please know you are welcome to ask any questions!! These just seem to be the ones that people ask the most.