How the Ketogenic Diet Can Help Kids With Epilepsy
The ketogenic diet is more than just a popular way to lose weight; it can also help children who have epilepsy. Two experts from Children's of Alabama explain the diet's history and how it works.
Featured Speakers:
Pongkiat Kankirawatana is a professor of pediatric neurology at the University of Alabama at Birmingham (UAB). Since 2001, he's been the medical director of the Children's of Alabama Pediatric Epilepsy Program. Prior to this, he helped establish multiple epilepsy centers in Thailand and introduced the ketogenic diet treatment program as part of the comprehensive epilepsy program in Southeast Asia.
Monica McChesney, MS, RD, LD | Pongkiat Kankirawatana, MD, FACNS, FAES
Monica J. McChesney is a registered dietitian in the Department of Clinical Nutrition and Lactation at Children’s of Alabama. She has worked in a variety of settings including inpatient rehabilitation medicine and gastroenterology, but her primary focus is in neurology specializing in the ketogenic diet. She has worked in this field for 10 years and has a true passion for the diet as well as advocacy for her patients.Pongkiat Kankirawatana is a professor of pediatric neurology at the University of Alabama at Birmingham (UAB). Since 2001, he's been the medical director of the Children's of Alabama Pediatric Epilepsy Program. Prior to this, he helped establish multiple epilepsy centers in Thailand and introduced the ketogenic diet treatment program as part of the comprehensive epilepsy program in Southeast Asia.
Transcription:
How the Ketogenic Diet Can Help Kids With Epilepsy
Conan Gasque: Welcome to Inside Pediatrics, a podcast brought to you by Children's Hospital of Alabama in Birmingham. I'm Conan Gasque. Today, we're talking about diet therapy for epilepsy and a specific diet that can help. You may have heard of this diet, the ketogenic diet. We have two guests who are experts on this diet.
Monica McChesney is a registered dietician in the Department of Clinical Nutrition and lactation at Children's of Alabama. Dr. Pongkiat Kankirawatana is the Medical Director of the Children's of Alabama Pediatric Epilepsy Program. So guys, you all are obviously both experts in this field, in this specific type of treatment for epilepsy.
I want to talk to you a little bit about, you know, what developed your interest in this to begin with. Monica, I'll start with you. This is one of your areas of expertise right here at Children's. What made you interested in this diet initially?
Monica McChesney: I've been at Children's, you know, for about 10 years now, and started working with it probably two years in and just saw that it really worked and helped these kids where parents have tried, you know, different medications that have failed and it's just something that I truly believe in and just love it.
Conan Gasque: And I guess you just worked on developing your understanding more and more as time has gone by?
Monica McChesney: Absolutely. Because there's not, you know, a training certificate or anything like that. It's just kind of, you know, figuring it out -- for lack of a better term -- you know, figuring out and, you know, trial and error really. And no patient is the same, they're all different. So, it's challenging, which I enjoy. And like I said, yeah, just a strong passion for it.
Conan Gasque: Sounds good. Dr. Pong, I know you have a passion for this as well. And I know you also introduced a ketogenic diet treatment program at the comprehensive epilepsy program in Thailand. Tell me a little bit about that.
Dr. Pongkiat Kankirawatana: Yeah. When I finished my training in the US, I went back to medical school in Thailand back in 1992. And during that time in Thailand, we don't have that much of the new anti-seizure medications. And a lot of kids, you know, are very intractable, especially for the drop seizures and institutionalized children who, you know, have so many seizures every day. So, in order to try to control the seizures with the resource we had, I explored an alternative way. That's why it ended up with work with the nutrition program there and thought doing the ketogenic diet in Thailand. Actually, my paper turned out to be one of the first in the Southeast Asia. So after that, we were very successful in the treatment. So, I continued to have this part of my routine practice for the intractable epilepsy kids.
Conan Gasque: And it's obviously something that you also do here at Children's of Alabama with a lot of success as well. I want to talk a little bit about it, so the listeners understand. I think most people are probably familiar with the keto diet, or at least they've heard of it. Monica, tell me a little bit about, for people who don't know specifically how it works, what goes into this?
Monica McChesney: Yeah. So, the ketogenic diet is a high fat, moderate amount of protein, low carbohydrate diet. And it's intended to shift the body's metabolism from glucose metabolism to fat metabolism. It ends up being 90% fat, 6% protein, and 4% carb. And we think about it as a ratio. So, classic ketogenic diet is considered a 4:1 or a 3:1. So, a 4:1 would mean that the patient is receiving four times the amount of fat to carbohydrate and protein combined.
Conan Gasque: You talk about those ratios, is that something that's difficult for some people to manage? Or is there other things you have to know about it kind of going in?
Monica McChesney: So, I have a program that helps me a ton, keto diet calculator. And I've come up with a recipe and give it to families and they just have to follow it. So, really, you know, that takes the hard part out of it for sure.
Conan Gasque: Always good to have those specific instructions to work with. Dr. Pong, can you talk a little bit about how this keto diet helps patients with epilepsy specifically? Why does this make a difference for them?
Dr. Pongkiat Kankirawatana: To tell you the truth, we do not know exactly what the real mechanism on how it controls seizures. And this has been ongoing for a long, long time, starting back 3,000 or 4,000 years ago when the Romans thought that all epileptics are possesed. And even in the Bible, you see so many things written in the Bible that when they have the demon possessions. And that's why what the Romans did was they put these groups of patients in a cave and they starved them and they thought that this, you know, tried to get rid of the demon spirit from the possessed. And yeah, it successfully controlled the seizures. And that's why I think when the Mayo doctor back in 1920 something, when Dr. Krebs discovered the Krebs cycle, in that time, a lot of people, you know, got into the biochemicals and think about the starvation as a way to treat the seizures.
So with that improvised, one of the Mayo Clinic doctor tried to imitate starvation. With our observation though, because our body runs with two engines, one is carbohydrates, one is the fat, and the brain gets the energy from either glucose or the ketone body. So, we thought that by switching the lighter car engine, you have the hybrid car, one is running with gas, the other one with the electric, and somehow the seizures run better with the gas, so you just switch to the electric for seizure control. But we do not know exactly what substrate or active metabolite that controls it.
But anyway, with this, it makes your body fool own body that we're in the starvation mode, we burn our own fat. Once we burn our own fat, the carbohydrate engine slows down or shut off. And when it shuts off, it somehow shuts off the epileptic brain tissues also. So, that's how it works. So in the process of doing that, in terms of trying to make your body survive, you keep on feeding the fat, get rid of the carbohydrate, so that's the way how it works.
Conan Gasque: It's a very fascinating history how it was originally learned that this would be effective for epilepsy. And I guess it doesn't matter if you really fully understand exactly what's going on, as long as it is effective, we know that it is that. Monica, is this a good option for all epilepsy patients or just kind of specific patients?
Monica McChesney: So, there are a couple diagnoses that, you know, it's considered the first line of treatment such as glucose 1 transporter deficiency where they simply can't break down glucose for energy and then pyruvate dehydrogenase deficiency is another one and then, phosphofructokinase deficiency. And then, there's also other epilepsy syndromes. Dr. Pong can talk a little bit about that research has found that they respond really well to the diet.
Dr. Pongkiat Kankirawatana: Yeah. Overall, it's more generic in every single group, you know, because epilepsy is so heterogenous. It's not a single disease, so it might be a kind of epilepsy, you name it. And the one that Monica already mentioned is one of the in-born error of metabolism that they cannot utilize the glucose or cannot move the glucose into the brain. So, that's why it really depends on the ketone body and that's why the diet really can be a specific treatment for that.
On the epileptic syndrome, the one that commonly responds very well, it would be the one that have the drop seizure, the falling seizures or the medical term, myoclonic atonic seizures, or we call the Doose syndrome, which would fit with the ketogenic diet. But in general, let's say you don't know what to treat, then will be one of the best because it's very broad spectrum in terms of controlling seizures.
Overall, because we don't have a good controlled trial study to tell you what's the percentage of seizure reduction, but from the Cochrane Review, from the, you know, reviewed literature, I would say that 16% get up to the seizure-free, which is a really good confidence interval. And I think it's 16% up to the seizure-free; 32% seizure reduction up to 90% and 50% reduction is about 56%.
Conan Gasque: Wow. Incredible.
Dr. Pongkiat Kankirawatana: Pretty, pretty broad spectrum in all groups of epilepsy. The only problem is how to get into the ketosis and maintain the ketosis.
Conan Gasque: Yeah. I guess that's the key, is staying in the ketosis. And in terms of patients and who should use this and who should maybe use medicine instead, it's sort of a case by case basis, right?
Monica McChesney: Absolutely.
Conan Gasque: So, let's talk about when you have a patient who has epilepsy and you're talking to their parent about things that they need to know before they go on this diet. What kind of advice might you have for them, Monica?
Monica McChesney: The biggest thing is just, you know, we do ask for a three-month commitment to see if the diet is going to work. It takes that long. And there's a lot of fine tuning with a diet and just changes within those first three months to make sure we give it our best shot. So, that's really the biggest thing.
There are other things our parents have to consider as far as medications. They can't be, you know, liquid, elixir syrup, because that's going to contain a lot of sugar. And then, their food is going to be drastically different. So, if you have a picky eater, it may be a little bit more difficult to do. Not saying it can't be done, but those are just some of the main things, you know, for parents to consider when thinking about doing the diet.
Conan Gasque: So, this is of course one diet that can help patients with epilepsy. Dr. Pong, are there a variety of others that could potentially be helpful as well?
Dr. Pongkiat Kankirawatana: Well, I think we use the ketogenic diet as another option like you use a med. Because everyone knows that epilepsy, we don't have the blueprint which one needs to be on what med. It's still a trial and error.
So in general, what we are doing is we select one med and then try to treat. And if it fails, then go to the second med. Overall, about 30% of children with epilepsy will be intractable or difficult to control. And those 30% population are the ones that tried a second med, third med. And then, if they failed a third med, usually then it is time to consider as an option the ketogenic diet, unless they belong to the group that start with the inborn error of metabolism that Monica already mentioned. And that one, we do not delay. We go straight to the ketogenetic diet.
Conan Gasque: Very interesting stuff, guys. You're all are experts in this and I know you all have a lot of success with your epileptic patients here at Children's of Alabama. I thank you for your perspective today.
Monica McChesney: Thank you. Thanks for having us.
Conan Gasque: Thanks for listening to Inside Pediatrics. You can find more podcasts like this one at childrensal.org/insidepediatrics.
How the Ketogenic Diet Can Help Kids With Epilepsy
Conan Gasque: Welcome to Inside Pediatrics, a podcast brought to you by Children's Hospital of Alabama in Birmingham. I'm Conan Gasque. Today, we're talking about diet therapy for epilepsy and a specific diet that can help. You may have heard of this diet, the ketogenic diet. We have two guests who are experts on this diet.
Monica McChesney is a registered dietician in the Department of Clinical Nutrition and lactation at Children's of Alabama. Dr. Pongkiat Kankirawatana is the Medical Director of the Children's of Alabama Pediatric Epilepsy Program. So guys, you all are obviously both experts in this field, in this specific type of treatment for epilepsy.
I want to talk to you a little bit about, you know, what developed your interest in this to begin with. Monica, I'll start with you. This is one of your areas of expertise right here at Children's. What made you interested in this diet initially?
Monica McChesney: I've been at Children's, you know, for about 10 years now, and started working with it probably two years in and just saw that it really worked and helped these kids where parents have tried, you know, different medications that have failed and it's just something that I truly believe in and just love it.
Conan Gasque: And I guess you just worked on developing your understanding more and more as time has gone by?
Monica McChesney: Absolutely. Because there's not, you know, a training certificate or anything like that. It's just kind of, you know, figuring it out -- for lack of a better term -- you know, figuring out and, you know, trial and error really. And no patient is the same, they're all different. So, it's challenging, which I enjoy. And like I said, yeah, just a strong passion for it.
Conan Gasque: Sounds good. Dr. Pong, I know you have a passion for this as well. And I know you also introduced a ketogenic diet treatment program at the comprehensive epilepsy program in Thailand. Tell me a little bit about that.
Dr. Pongkiat Kankirawatana: Yeah. When I finished my training in the US, I went back to medical school in Thailand back in 1992. And during that time in Thailand, we don't have that much of the new anti-seizure medications. And a lot of kids, you know, are very intractable, especially for the drop seizures and institutionalized children who, you know, have so many seizures every day. So, in order to try to control the seizures with the resource we had, I explored an alternative way. That's why it ended up with work with the nutrition program there and thought doing the ketogenic diet in Thailand. Actually, my paper turned out to be one of the first in the Southeast Asia. So after that, we were very successful in the treatment. So, I continued to have this part of my routine practice for the intractable epilepsy kids.
Conan Gasque: And it's obviously something that you also do here at Children's of Alabama with a lot of success as well. I want to talk a little bit about it, so the listeners understand. I think most people are probably familiar with the keto diet, or at least they've heard of it. Monica, tell me a little bit about, for people who don't know specifically how it works, what goes into this?
Monica McChesney: Yeah. So, the ketogenic diet is a high fat, moderate amount of protein, low carbohydrate diet. And it's intended to shift the body's metabolism from glucose metabolism to fat metabolism. It ends up being 90% fat, 6% protein, and 4% carb. And we think about it as a ratio. So, classic ketogenic diet is considered a 4:1 or a 3:1. So, a 4:1 would mean that the patient is receiving four times the amount of fat to carbohydrate and protein combined.
Conan Gasque: You talk about those ratios, is that something that's difficult for some people to manage? Or is there other things you have to know about it kind of going in?
Monica McChesney: So, I have a program that helps me a ton, keto diet calculator. And I've come up with a recipe and give it to families and they just have to follow it. So, really, you know, that takes the hard part out of it for sure.
Conan Gasque: Always good to have those specific instructions to work with. Dr. Pong, can you talk a little bit about how this keto diet helps patients with epilepsy specifically? Why does this make a difference for them?
Dr. Pongkiat Kankirawatana: To tell you the truth, we do not know exactly what the real mechanism on how it controls seizures. And this has been ongoing for a long, long time, starting back 3,000 or 4,000 years ago when the Romans thought that all epileptics are possesed. And even in the Bible, you see so many things written in the Bible that when they have the demon possessions. And that's why what the Romans did was they put these groups of patients in a cave and they starved them and they thought that this, you know, tried to get rid of the demon spirit from the possessed. And yeah, it successfully controlled the seizures. And that's why I think when the Mayo doctor back in 1920 something, when Dr. Krebs discovered the Krebs cycle, in that time, a lot of people, you know, got into the biochemicals and think about the starvation as a way to treat the seizures.
So with that improvised, one of the Mayo Clinic doctor tried to imitate starvation. With our observation though, because our body runs with two engines, one is carbohydrates, one is the fat, and the brain gets the energy from either glucose or the ketone body. So, we thought that by switching the lighter car engine, you have the hybrid car, one is running with gas, the other one with the electric, and somehow the seizures run better with the gas, so you just switch to the electric for seizure control. But we do not know exactly what substrate or active metabolite that controls it.
But anyway, with this, it makes your body fool own body that we're in the starvation mode, we burn our own fat. Once we burn our own fat, the carbohydrate engine slows down or shut off. And when it shuts off, it somehow shuts off the epileptic brain tissues also. So, that's how it works. So in the process of doing that, in terms of trying to make your body survive, you keep on feeding the fat, get rid of the carbohydrate, so that's the way how it works.
Conan Gasque: It's a very fascinating history how it was originally learned that this would be effective for epilepsy. And I guess it doesn't matter if you really fully understand exactly what's going on, as long as it is effective, we know that it is that. Monica, is this a good option for all epilepsy patients or just kind of specific patients?
Monica McChesney: So, there are a couple diagnoses that, you know, it's considered the first line of treatment such as glucose 1 transporter deficiency where they simply can't break down glucose for energy and then pyruvate dehydrogenase deficiency is another one and then, phosphofructokinase deficiency. And then, there's also other epilepsy syndromes. Dr. Pong can talk a little bit about that research has found that they respond really well to the diet.
Dr. Pongkiat Kankirawatana: Yeah. Overall, it's more generic in every single group, you know, because epilepsy is so heterogenous. It's not a single disease, so it might be a kind of epilepsy, you name it. And the one that Monica already mentioned is one of the in-born error of metabolism that they cannot utilize the glucose or cannot move the glucose into the brain. So, that's why it really depends on the ketone body and that's why the diet really can be a specific treatment for that.
On the epileptic syndrome, the one that commonly responds very well, it would be the one that have the drop seizure, the falling seizures or the medical term, myoclonic atonic seizures, or we call the Doose syndrome, which would fit with the ketogenic diet. But in general, let's say you don't know what to treat, then will be one of the best because it's very broad spectrum in terms of controlling seizures.
Overall, because we don't have a good controlled trial study to tell you what's the percentage of seizure reduction, but from the Cochrane Review, from the, you know, reviewed literature, I would say that 16% get up to the seizure-free, which is a really good confidence interval. And I think it's 16% up to the seizure-free; 32% seizure reduction up to 90% and 50% reduction is about 56%.
Conan Gasque: Wow. Incredible.
Dr. Pongkiat Kankirawatana: Pretty, pretty broad spectrum in all groups of epilepsy. The only problem is how to get into the ketosis and maintain the ketosis.
Conan Gasque: Yeah. I guess that's the key, is staying in the ketosis. And in terms of patients and who should use this and who should maybe use medicine instead, it's sort of a case by case basis, right?
Monica McChesney: Absolutely.
Conan Gasque: So, let's talk about when you have a patient who has epilepsy and you're talking to their parent about things that they need to know before they go on this diet. What kind of advice might you have for them, Monica?
Monica McChesney: The biggest thing is just, you know, we do ask for a three-month commitment to see if the diet is going to work. It takes that long. And there's a lot of fine tuning with a diet and just changes within those first three months to make sure we give it our best shot. So, that's really the biggest thing.
There are other things our parents have to consider as far as medications. They can't be, you know, liquid, elixir syrup, because that's going to contain a lot of sugar. And then, their food is going to be drastically different. So, if you have a picky eater, it may be a little bit more difficult to do. Not saying it can't be done, but those are just some of the main things, you know, for parents to consider when thinking about doing the diet.
Conan Gasque: So, this is of course one diet that can help patients with epilepsy. Dr. Pong, are there a variety of others that could potentially be helpful as well?
Dr. Pongkiat Kankirawatana: Well, I think we use the ketogenic diet as another option like you use a med. Because everyone knows that epilepsy, we don't have the blueprint which one needs to be on what med. It's still a trial and error.
So in general, what we are doing is we select one med and then try to treat. And if it fails, then go to the second med. Overall, about 30% of children with epilepsy will be intractable or difficult to control. And those 30% population are the ones that tried a second med, third med. And then, if they failed a third med, usually then it is time to consider as an option the ketogenic diet, unless they belong to the group that start with the inborn error of metabolism that Monica already mentioned. And that one, we do not delay. We go straight to the ketogenetic diet.
Conan Gasque: Very interesting stuff, guys. You're all are experts in this and I know you all have a lot of success with your epileptic patients here at Children's of Alabama. I thank you for your perspective today.
Monica McChesney: Thank you. Thanks for having us.
Conan Gasque: Thanks for listening to Inside Pediatrics. You can find more podcasts like this one at childrensal.org/insidepediatrics.