Epilepsy: "The Magic Diet"
Do you know how your magic diet works? I can't remember. It sends very special chemicals to your brain, called ketones, that help to keep your seizures away. We don't actually know why the ketogenic diet works. There's a lot of different theories, and in fact there are several labs across North America. Several research labs across North America, that are working on exactly that question.
"How does the ketogenic diet stop seizures?" And we don't know. Does it help your seizures to go away? Yeaaaah, yeah. The ketogenic diet is not a "natural" treatment. It's not even really a healthy diet. What it is, is a treatment for children who have seizures that are very serious and not controlled by medication. And what kind of things do you eat with your magic food? Um, hot dogs? Hot dogs, you lucky boy! What else? I did a presentation to his kindergarten class last year about Jack's magic food.
We call it the magic food because it makes the seizures disappear. We do have a whole bunch of patients who respond well to medications and are not affected too much with side effects and do have seizure control. But we're talking more today about the ones at home that the simple approach does not work. One shouldn't perceive that diet therapies for epilepsy are more benign or more easily tolerated than other medical treatments for epilepsy. So how are things? Things are pretty good-- he's still having the head drops in the morning. I don't know if it's like an oil or diet tweak I need to suggest with Christiana about the head drops-- for the head drops in the morning. Most of Jack's calories come from..
--it's called MCT oil. Medium chain triglyceride oil. That's really where sixty percent of his calories come from. MCT oil is a pro-ketonic oil. What that means is that for every calorie of MCT oil that a person eats, they'll make more ketones than if they were to eat the same number of calories of long-chain oils, or long-chain fats. So by adding MCT oil to food, you can actually encourage your body to make more ketones.
What are his keytones? They're the same since I last talked to her a week or two ago, like 8 -- 16 at night. Although it is clear to those of us that use the ketogenic diet for epilepsy that if you can measure ketones in a child while they're on a diet that the higher the ketones are, usually the more effective the diet will be at controlling seizures. That said, the direct relationship between ketones causing seizure control has not been established in a laboratory. Did she talk to you about making a change to get them up in the morning? No. 'Cause maybe she should give him a little bit more at night, make him have more ketones in the morning. Ketones are the breakdown product of fat. When your body does not have enough carbohydrate or sugar to use as a fuel, it will convert and change to using fats as a fuel.
The breakdown product of fat as a fuel are ketones. Ketones are a very effective fuel for the brain, and we know that the brain can use ketones to make energy. How are his seizures now? He still has head drops in the mornings, he drinks the oil with his diet every two and a half hours, Then he's fine throughout the day, he sleeps, and then he has like a ten-twelve hour gap between getting the oil... And then we see those seizures in the morning, so-- So he's only having the head-drop seizures? No more big convulsions. Since going on the diet, it's been miraculous. He hasn't had one of the twenty-minute seizures.
Is the magic food working for your seizures? Yeah. Yeah, good for you! Do you know any other kids that eat magic food? I can't remember. He can't remember a lot of things today. Should we discuss med side effects at this point? He was on a whole bunch of medications. Now he's just on a few. He's subtherapeutice on both the carbomenzopine and the motrigin. So that's to me an impetus to get kids off drugs when you can. The other issue is that this food is based on fat, and there's the concern for long term cardiovascular concerns.
The reasons to stop the diet include some of the chronic or long-term side effects like, weakening of the bones, short growth. But then when he stops the diet is he just going to have to go right back on it? Well, he'll have to go on something, but not necessarily the Tergritol. Most of the epilepsies that children grow out of are easily treatable with medication. And so in most cases of epilepsy that children would grow out of, we wouldn't need to use a ketogenic diet. What is possible, however, is that if we use the diet in children with more severe epilepsy, and we give their brain a rest from daily seizures.
That we may be interfering with the phenomenon of seizures causing seizures, and the more seizures you have, the more seizures you will have in future. And that even if we don't cure the epilepsy, we really allow it to settle into a more mild pattern. One of the things that we've really found with the ketogenic diet is that it's definitely been a positive trend in his medical condition whereas for the first year and half or two years before we came to SickKids in many respects it was out of control. What's involved in starting the diet is the children fast for several days. So they come into the hospital fasting, and to be monitored, so it needs to be done only under medical supervision-- you can never start this diet at home.
And a dietician specifically calculates the diet for each child, working out exactly how much fat, carbohydrate, and protein that child should get in a day. Jack's lunch is a yummy hot dog, some toast, and some milk with oil. You need to weigh all foods and be very certain of portion sizes, which means not only are portion sizes sometimes limited, but on the flip side children have to eat the portion that is presented to them, and we all know it can sometimes be hard to get kids to stop eating and sometimes to finish what's on their plate. It's so meticulous in having to weigh out every little morsel that goes into his mouth, down to the 0.1 of a gram.
So no extra little hidden sources of carbohydrates or sugar can sneak into the diet. So that includes things like toothpaste, which can be sweetened, and there's no chips or cookies or birthday cake or anything like that. That could be allowed on the diet. The other thing is that we need to be very careful with the medications that kids on the ketogenic diet take because one teaspoon of cough syrup, which is heavily sweetened, could actually have the full day's value of carbohydrates. Just in that one little spoon. Any change in the diet that actually drops the ketone levels can result in an increase in seizures, and can even be dangerous. So children that are on the ketogenic diet need to be very careful not to even by mistake get extra bits of carbohydrate. Be it food, medication, snacks, even things like gum.
We can use sugar-free flavourings, ones that are sweet can be added to cream and frozen to form a type of ice cream. And ones that are more savoury can be added into mayonnaise to make dressings. So you can make the ketogenic diet taste good. The magic diet is what we call the ketogenic diet for Jack. And we've just really positioned it in a way that he needs to eat in a certain way to be healthy. Our two-year old has an egg allergy, so we tell Jack that there's certain foods that Christopher, your little brother needs to eat to stay healthy. We just got a puppy, the puppy eats puppy food, and you eat this magic food and that's what works for your body.
Last year when I did a little presentation to his kindergarten class, that several of the children thought, upon hearing that Jack was on a magic diet that he could actually fly. So it's really important that everybody that works with a kid, or takes care of a kid, knows that they're on a special diet, and knows the consequence of the diet. The hope is that the effect of the ketogenic diet will be sustained after we stop the diet. Brain surgery was also mentioned to us as a possible treatment. And we do know children who come off the diet and stay seizure-free.
This is probably mostly related to the underlying cause of the seizures. When the time comes that Jack can no longer be on the diet then we'll probably be pursuing surgery more aggressively if the seizures return.
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