Friday, July 26, 2013

What's a Ratio? (Ketogenic Diet)

Owen's prize for getting his blood test done
 I've mentioned ratio before, but I haven't really explained what it means to the ketogenic diet. It's actually pretty simple in theory. When I say ratio in relation to the diet I'm talking about a simple formula of fat to protein + carbohydrates. It's written as 2:1, 3:1, 3.25:1, 4:1, etc. In plain English that means that you would have 2 (3, 3.25, 4)  parts fat to one part protein and carbohydrates combined. Our Keto team starts the diet with a day of low-carbing prior to hospital entry. Then the plan is to do a 2:1 ratio for a day, a 3:1 ratio for a day, and end with a 4:1 or "classic" keto ratio on the day of release. Owen, as usual, had other plans. We started the 2:1 ratio the first day and he immediately began showing ketones in his urine( we have test strips to use and the hospital did urine tests 2x a day and blood tests once a day). Everything was going great until early the next morning when Owen woke up shaking and retching. His blood sugar had gone down to 31. This isn't quite as bad as it sounds except that he was very symptomatic of low blood sugar. On the Ketogenic diet, the body uses fat for energy not glucose, so a much lower blood sugar than normal is alright. Owen just needed a few milliliters of juice and his breakfast to feel normal again.We also added baking soda to his food to help combat acidosis.
 The team decided to keep Owen at the 2:1 ratio for another day instead of moving him to 3:1 right away thinking that a slower transition might be better for him. At this point I resigned myself to staying in the hospital an extra day. All of his tests kept coming back showing high ketones though, so the third day they decided to send us home on a 2:1 ratio. We will probably be moving to a higher ratio in the next few weeks, as it would be rare for Owen to maintain good ketones on this low of a ratio (2:1 is usually only used for going on or off of the diet), but we can make small changes slowly at home. We see the neurologist again in a couple of weeks and will check in with the keto team at that visit, then we have a keto follow up in September.
This was Owen's car during his hospital stay. He had a parking space right outside his room.
 What is the diet doing for Owen's seizures? Well, we won't really know for a while. Owen has several types of seizures and the "little" ones can be really hard to distinguish from normal activity if he isn't hooked up to an EEG. His "big" seizures ( the status ones that don't stop on their own) have only been happening every 6-10 weeks with his current medication dose, so we might not know for months if the diet is working for sure. We have already noticed a (huge) decrease in his "twitching" episodes at night. Today Owen fell, but I wasn't looking right at him, so I don't know if he actually fell or if he had one of his small seizures. In a few weeks or months, depending on how he's doing we will start to taper off some of his medications and that will give us a better idea of how the diet is working.
 So far the only side effects we've noticed (aside from the blood sugar drop in the hospital) have been some excessive tiredness (completely expected for the first week) and some moodiness. The moodiness could be caused by the change in metabolism, by his drugs affecting him differently(they'll test his blood levels at the August apt), or just by the emotional aspects of being in the hospital and having his favorite foods taken away. Hopefully he'll be back to normal in a few weeks!
 Owen has been such a trooper about the whole thing! He's done some whining about having to eat the different food. I got yelled at once "Remember no oil, Mommy!", but he's eating everything even if he is complaining about it. He thought he was going to leave the keto food at the hospital and have "real" food when he got home. We are playing with the recipes trying to find the most palatable way to get all the fat in him and still give him things he likes, but I think that will be another post.

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