Last Thursday I met with the Pediatric Dietician who will be in charge of getting Matt acclimated to the Ketogenic diet. My head is still reeling....SO MUCH INFORMATION!! Just for a little background the Ketogenic Diet is a high-fat, low-carb diet that is used to treat difficult to control epilepsy, mostly in kids. The body goes into a kind of starvation mode due to the absence of carbs and sugars that are usually used to fuel the body. As a result the body starts to use the fats in the body for fuel instead. This was a primary form of treatment before anticonvulsant medications were developed. The diet is effective in controlling the seizures in half of the patients who try it. Matt is currently experiencing two kinds of seizures according to his most recent EEG--Salaam Spasms and Absence seizures. After a discussion with his neurologist about possible treatments with medications and a lot of online research we felt this was something we should pursue.
As soon as I started talking to the dietician, I felt more at ease. She gave me a packet of information to take home and started explaining the process we would go through to get Matt to the process of ketosis, where the levels of ketones in his body rises. Ketosis is supposed to reduce the frequency of seizures. I brought in a sample menu of things that Matt might eat in a typical day--scrambled eggs, farina, chicken nuggets, macaroni and cheese and Goldfish. I even had to make a list of his daily medications because they may contain carbs or sugars. She said that she would start looking for recipes that we could use that would still allow him to eat some of his favorite foods and look for replacements for those things we couldn't cook for him.
I don't think I fully realized how strict this diet was going to be until I sat down to talk to her. She stressed how important it was that Matt not eat or drink anything he wasn't supposed to and that we measure everything carefully. I also learned that Matt will no longer be able to take liquid medications because of their sugar content. Instead, he will be taking tablets or capsules and if possible injectable antibiotics so that ketosis doesn't get broken. If ketosis gets broken, say I don't measure part of his meals correctly, he has a very real possibility of having a seizure soon afterwards.
I have my shopping list of things to buy and some required reading before we're admitted to the hospital next week. I'm nervous, but optimistic that this diet will do amazing things in Matt's life.