Home to a Level IV designated Comprehensive Epilepsy Center, Children's Mercy offers one of the largest ketogenic diet programs in the U.S.
The diet is an effective non-medication treatment for intractable epilepsy.
While it is unclear exactly how the diet works, it has been shown to control seizures and minimize the need for antiepileptic drugs, which can have unpleasant side effects.
Children’s Mercy patients have fared better than national averages, with ketogenic diet patients seeing a 72 percent improvement after one year, and 90 % after two years.
Dr. Ahmed Abdelmoity, the Chief of the Section of Epilepsy and Neurophysiology at Children’s Mercy Kansas City, is here to discuss ketogenic diet programs.
The Ketogenic Diet: An Effective Non-Medication Treatment for Intractable Epilepsy
Featured Speaker:
Learn more about Dr. Ahmed Abdelmoity
Ahmed Abdelmoity, MD
Dr. Ahmed Abdelmoity is Chief of the Section of Epilepsy and Neurophysiology at Children’s Mercy Kansas City, where he also serves as Director of the Clinical Neurophysiology fellowship program. Dr. Abdelmoity received his medical degree from the University of Cairo, Cairo, Egypt. He completed a residency in child neurology and a neurosciences research fellowship at The University of Texas, Southwestern Medical Center in Dallas. Dr. Abdelmoity completed a child neurology fellowship and clinical neurophysiology fellowship at Baylor College of Medicine. He is certified in Neurology with Special Qualification in Child Neurology and is also certified in Clinical Neurophysiology and Epilepsy.Learn more about Dr. Ahmed Abdelmoity
Transcription:
The Ketogenic Diet: An Effective Non-Medication Treatment for Intractable Epilepsy
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “The Ketogenic Diet: An Effective Non-Medication Treatment for Intractable Epilepsy.” My guest is Dr. Ahmed Abdelmoity. Dr. Abdelmoity is Chief of the Section of Epilepsy and Neurophysiology at Children’s Mercy - Kansas City where he also serves as Director of the Clinical Neurophysiology Fellowship Program. Dr. Abdelmoity, welcome to the show.
Dr. Ahmed Abdelmoity (Guest): Thank you very much. Thanks for having me.
Dr. Smith: How common is epilepsy in children?
Dr. Abdelmoity: It varies by country. Here in the United States, it varies between 0.8 to 1% of the population will have epilepsy. It has two peaks. The first peak happens in the first one to three years of life and later on in life--around 70-80 years of age – that’s when it takes another peak. As you can tell, in general, epilepsy starts more in the younger age group in patients than to continue on in life with epilepsy.
Dr. Smith: What are the common treatments used today?
Dr. Abdelmoity: Depending on the type of epilepsy, there are two main types of epilepsy which are focal epilepsy, which comes out of one focus or the generalized epilepsy. Typically, the first line of treatments are always going to be medications. Second line will always be medications and when you get to the third line, and this is when we start calling it “refractory epilepsy” which is failing to respond to two or more properly dosed, properly chosen anti-epileptic medications despite which the patient continues to have seizures. That is when you start to go for non-pharmacological treatments.
Dr. Smith: Obviously, that leads us into the topic of our discussion – the ketogenic diet. What exactly is that type of diet and how does it work?
Dr. Abdelmoity: In our normal American diets, we roughly eat about four parts carbohydrates to one part fat and protein. In the ketogenic diet, we are trying to alter the brain metabolism or trying to alter the brain fuel. The main two substrates for the brain are glucose and ketone bodies. Glucose accounts for the majority of the need for our brains to do its functions while the ketone bodies, simply because of its lack of availability in our normal diet, it kind of becomes a secondary substrate. With a ketogenic diet, we alter that ratio where the majority of the diet becomes fat – up to four parts fat to one part carbohydrate and protein. In doing that, we are shunting a lot of that acetyl coenzyme a, which normally would be going thru gluconeogenesis cycle, going through the glycogenolysis and through releasing energy through that glucose, we’re shunting it over into forming ketone bodies. With that, we’re providing a different, yet been proven to be a better, alternative fuel for the brain through which it has been shown to be anti-epileptic. It also improves the quality of life significantly by providing a better, healthier form of energy to the brain.
Dr. Smith: Do we know exactly, though, switching over to the ketone bodies as an energy source for the brain, how is that treating epilepsy? How does it actually work? Do we know? Are there some theories about this?
Dr. Abdelmoity: That’s a really good question. The short answer is we don’t know the exact mechanism of action. However, there are a number of studies with some theories which make good sense. With shunting and the acetyl co a in the krebs cycle we are reducing the amount of aspartate or aspartic acid which is one of the aspartic acid neurotransmitters. It also goes into the formation of glutamic acid which is the main aspartic acid neurotransmitter. Right there, reducing the two main aspartic acid neurotransmitters that help or further make the brain at risk to have seizures. On top of that, through the ketogenic diet, I am also shunting more towards the glycolic acid or GABA which is the main inhibitor of the neurotransmitter. By doing that, I’m not just decreasing the amounts of excitation, I’m also increasing the amount of inhibition to the brain. I don’t want this to be confused with bad inhibition. It’s basically bringing equilibrium back to its normal level. Typically, kids who have epilepsy, they have a problem with this equilibrium--neurotransmitters or “things” that would excite the brain and others that would inhibit the brain. With the introduction of ketone bodies, it can bring the equilibrium back to its baseline benefits.
Dr. Smith: We are starting to hear more in the field of psychiatry and neurology this idea of an excitatory to inhibitory ratio an E:1 ratio and we’re improving in that ratio overall with the ketogenic diet. That seems to be the leading theory. Is that kind of a way to think of it?
Dr. Abdelmoity: Absolutely. Absolutely. By the way, this is not a new treatment, it’s not a new therapy. It has been used even before even modern medicine. Hippocrates described a case where patients were on strict water diets and their seizures got better. What was happening there is because they were fasting and blocking any metabolism – or decrease in metabolism, I should say – that’s when ketone bodies started happening. Even in the 1500’s, there was a series of physicians describing putting patients on high fat diets having led to improving seizures. Ancient Egyptians used to think that epilepsy was related to bad spirits and demons and they used to walk patients for days. With walking them, you would not feed them. So, that fasting led to the development of ketones and there were reports of those patients getting better by being “walked”. It is not because of the walking but because of that promotion of the ketone bodies which exactly brings back that equilibrium. So now, it is used for different other conditions in neurology including Alzheimer’s disease, multiple sclerosis. It’s starting to be even expanding more far beyond epilepsy now.
Dr. Smith: It’s interesting. I remember in the 70’s and 80’s people talked more about the ketogenic diet. It kind of fell out of favor but it does seem to be coming back as we understand a little bit more about that excitatory to inhibitory balance in the brain. So, when a child starts the ketogenic diet, do you also try to reintroduce some of the medications at that point or is it just you’re controlling it purely by diet?
Dr. Abdelmoity: That’s a good question. Typically, like I mentioned, the diet will never be a first line treatment because of the risk benefit ratio. Typically, patients who get started on a ketogenic diet already are on probably two or three seizure medications. To see the efficacy of the diet and to make sure we access the tolerability, the diet gets started in addition to the medications. As times goes by, typically about three to six months on being on the ketogenic diet, we reassess the seizure frequency, the quality of life improvements and depending on how the patients are doing, a lot of them--actually up to 80%--are able to wean some of the medications down. We don’t always stop all seizure medications because the seizures do not all the time 100% stop.
Dr. Smith: Right.
Dr. Abdelmoity: But for the most part, about 80% of the patients are able to wean some of the medications or at least take one or two of the medications that they are on because now the ketogenic diet is replacing the anti-epileptic effect of those medications.
Dr. Smith: You’ve mentioned a couple of times improvement in quality of life and I think that is an important discussion here. You find when children follow the ketogenic diet there’s no developmental issues? They are growing; they’re gaining weight. Is all that still happening?
Dr. Abdelmoity: In general, let me take a step back, and I’ll come back to that question. In general, in treatment of epilepsy, when a kid gets first diagnosed with epilepsy our treatment goal is to be side effect free. That’s when the kid is on one medication, two medications, or up to three seizure medications. Past that point, which happens in about 35% of the patients – a third of the patients with epilepsy will continue to have some drug resistant epilepsy or refractory epilepsy, all synonymous names for seizures that are not responding to that seizure medication. At that point, that’s when we need to go for a non-pharmacological option, ketogenic diet being one of them. And at that point also, that’s when the goal changes, or the goal alters a little bit from being seizure-free and side-effect free to getting the best quality of life – what is called the sweet spot. That means minimizing seizures to a bare minimum, whatever a bare minimum will be. Some kids might have a hundred seizures a day. If I’m able to get seizures down to one a week that is a significant improvement in seizures. Also, with that, we are very keen and careful to make sure that quality of life improves with attention, with development, with cognitive behavior, with academic performance, all of the above. Ketogenic diet has been shown to significantly improve quality of life across the board. Over 90% of the patients in our studies, in our published literature by Children’s Mercy Hospital shows that quality of life improved at least by 50% from baseline. Another big center the one at Johns Hopkins in Maryland. They are reporting in about 70% of the patients that their quality of life significantly improves. Yes, it does significantly improve. I think that we know that it is multifactorial; because seizures are happening less so it’s better controlled. That gives more energy to the brain to start focusing more in development and in attention and so forth. A lot of times, reducing the seizure medication that alleviates a lot of the side effects which, a lot of times hinders the development and the quality of life. It has been shown across pretty much all of the studies how significantly the ketogenic diet improves the quality of life which is not something that happens with all seizure medications.
Dr. Smith: Right. That’s interesting and that’s good news to hear. The Comprehensive Epilepsy Center at Children’s Mercy – you actually, in this program, have a professional chef. Is that correct? Is that unique to your program?
Dr. Abdelmoity: It is very unique to our program, actually. We are one of the largest programs in the country, actually in the world, for providing the ketogenic diet. One of the problems we sometimes face during the ketogenic diet with all its efficacy, with all its greatness, is compliance, or adherence. The patients might not be able to continue to eat the contents of the diet. That’s when I approached the administration and they agreed to have a ketogenic diet chef and she has made a huge, tremendous difference in our kids’ lives. Having things on the menu, including pizza, peanut butter sandwiches, cupcakes – things that are not on any traditional ketogenic diet’s menu. However, because of how she makes them out of special ingredients coconut flour, using some macadamia grinds and other ingredients, kids are, a lot of times, are continuing to be able to eat things that they like. So, it did make a huge difference, especially in our teenage patient group. That made a big, huge difference. We even set a kitchen up in the hospital to show the families in the hospital how to prepare those meals, prepare the ingredients. We provide them with the menus.
Dr. Smith: Very nice. I do want to mention, too, that the Comprehensive Epilepsy Center at Children’s Mercy is a Level IV center which is recognized by the National Association of Epilepsy Centers. Dr. Abdelmoity, thanks for coming on and thanks for the good work that you are doing. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.
The Ketogenic Diet: An Effective Non-Medication Treatment for Intractable Epilepsy
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “The Ketogenic Diet: An Effective Non-Medication Treatment for Intractable Epilepsy.” My guest is Dr. Ahmed Abdelmoity. Dr. Abdelmoity is Chief of the Section of Epilepsy and Neurophysiology at Children’s Mercy - Kansas City where he also serves as Director of the Clinical Neurophysiology Fellowship Program. Dr. Abdelmoity, welcome to the show.
Dr. Ahmed Abdelmoity (Guest): Thank you very much. Thanks for having me.
Dr. Smith: How common is epilepsy in children?
Dr. Abdelmoity: It varies by country. Here in the United States, it varies between 0.8 to 1% of the population will have epilepsy. It has two peaks. The first peak happens in the first one to three years of life and later on in life--around 70-80 years of age – that’s when it takes another peak. As you can tell, in general, epilepsy starts more in the younger age group in patients than to continue on in life with epilepsy.
Dr. Smith: What are the common treatments used today?
Dr. Abdelmoity: Depending on the type of epilepsy, there are two main types of epilepsy which are focal epilepsy, which comes out of one focus or the generalized epilepsy. Typically, the first line of treatments are always going to be medications. Second line will always be medications and when you get to the third line, and this is when we start calling it “refractory epilepsy” which is failing to respond to two or more properly dosed, properly chosen anti-epileptic medications despite which the patient continues to have seizures. That is when you start to go for non-pharmacological treatments.
Dr. Smith: Obviously, that leads us into the topic of our discussion – the ketogenic diet. What exactly is that type of diet and how does it work?
Dr. Abdelmoity: In our normal American diets, we roughly eat about four parts carbohydrates to one part fat and protein. In the ketogenic diet, we are trying to alter the brain metabolism or trying to alter the brain fuel. The main two substrates for the brain are glucose and ketone bodies. Glucose accounts for the majority of the need for our brains to do its functions while the ketone bodies, simply because of its lack of availability in our normal diet, it kind of becomes a secondary substrate. With a ketogenic diet, we alter that ratio where the majority of the diet becomes fat – up to four parts fat to one part carbohydrate and protein. In doing that, we are shunting a lot of that acetyl coenzyme a, which normally would be going thru gluconeogenesis cycle, going through the glycogenolysis and through releasing energy through that glucose, we’re shunting it over into forming ketone bodies. With that, we’re providing a different, yet been proven to be a better, alternative fuel for the brain through which it has been shown to be anti-epileptic. It also improves the quality of life significantly by providing a better, healthier form of energy to the brain.
Dr. Smith: Do we know exactly, though, switching over to the ketone bodies as an energy source for the brain, how is that treating epilepsy? How does it actually work? Do we know? Are there some theories about this?
Dr. Abdelmoity: That’s a really good question. The short answer is we don’t know the exact mechanism of action. However, there are a number of studies with some theories which make good sense. With shunting and the acetyl co a in the krebs cycle we are reducing the amount of aspartate or aspartic acid which is one of the aspartic acid neurotransmitters. It also goes into the formation of glutamic acid which is the main aspartic acid neurotransmitter. Right there, reducing the two main aspartic acid neurotransmitters that help or further make the brain at risk to have seizures. On top of that, through the ketogenic diet, I am also shunting more towards the glycolic acid or GABA which is the main inhibitor of the neurotransmitter. By doing that, I’m not just decreasing the amounts of excitation, I’m also increasing the amount of inhibition to the brain. I don’t want this to be confused with bad inhibition. It’s basically bringing equilibrium back to its normal level. Typically, kids who have epilepsy, they have a problem with this equilibrium--neurotransmitters or “things” that would excite the brain and others that would inhibit the brain. With the introduction of ketone bodies, it can bring the equilibrium back to its baseline benefits.
Dr. Smith: We are starting to hear more in the field of psychiatry and neurology this idea of an excitatory to inhibitory ratio an E:1 ratio and we’re improving in that ratio overall with the ketogenic diet. That seems to be the leading theory. Is that kind of a way to think of it?
Dr. Abdelmoity: Absolutely. Absolutely. By the way, this is not a new treatment, it’s not a new therapy. It has been used even before even modern medicine. Hippocrates described a case where patients were on strict water diets and their seizures got better. What was happening there is because they were fasting and blocking any metabolism – or decrease in metabolism, I should say – that’s when ketone bodies started happening. Even in the 1500’s, there was a series of physicians describing putting patients on high fat diets having led to improving seizures. Ancient Egyptians used to think that epilepsy was related to bad spirits and demons and they used to walk patients for days. With walking them, you would not feed them. So, that fasting led to the development of ketones and there were reports of those patients getting better by being “walked”. It is not because of the walking but because of that promotion of the ketone bodies which exactly brings back that equilibrium. So now, it is used for different other conditions in neurology including Alzheimer’s disease, multiple sclerosis. It’s starting to be even expanding more far beyond epilepsy now.
Dr. Smith: It’s interesting. I remember in the 70’s and 80’s people talked more about the ketogenic diet. It kind of fell out of favor but it does seem to be coming back as we understand a little bit more about that excitatory to inhibitory balance in the brain. So, when a child starts the ketogenic diet, do you also try to reintroduce some of the medications at that point or is it just you’re controlling it purely by diet?
Dr. Abdelmoity: That’s a good question. Typically, like I mentioned, the diet will never be a first line treatment because of the risk benefit ratio. Typically, patients who get started on a ketogenic diet already are on probably two or three seizure medications. To see the efficacy of the diet and to make sure we access the tolerability, the diet gets started in addition to the medications. As times goes by, typically about three to six months on being on the ketogenic diet, we reassess the seizure frequency, the quality of life improvements and depending on how the patients are doing, a lot of them--actually up to 80%--are able to wean some of the medications down. We don’t always stop all seizure medications because the seizures do not all the time 100% stop.
Dr. Smith: Right.
Dr. Abdelmoity: But for the most part, about 80% of the patients are able to wean some of the medications or at least take one or two of the medications that they are on because now the ketogenic diet is replacing the anti-epileptic effect of those medications.
Dr. Smith: You’ve mentioned a couple of times improvement in quality of life and I think that is an important discussion here. You find when children follow the ketogenic diet there’s no developmental issues? They are growing; they’re gaining weight. Is all that still happening?
Dr. Abdelmoity: In general, let me take a step back, and I’ll come back to that question. In general, in treatment of epilepsy, when a kid gets first diagnosed with epilepsy our treatment goal is to be side effect free. That’s when the kid is on one medication, two medications, or up to three seizure medications. Past that point, which happens in about 35% of the patients – a third of the patients with epilepsy will continue to have some drug resistant epilepsy or refractory epilepsy, all synonymous names for seizures that are not responding to that seizure medication. At that point, that’s when we need to go for a non-pharmacological option, ketogenic diet being one of them. And at that point also, that’s when the goal changes, or the goal alters a little bit from being seizure-free and side-effect free to getting the best quality of life – what is called the sweet spot. That means minimizing seizures to a bare minimum, whatever a bare minimum will be. Some kids might have a hundred seizures a day. If I’m able to get seizures down to one a week that is a significant improvement in seizures. Also, with that, we are very keen and careful to make sure that quality of life improves with attention, with development, with cognitive behavior, with academic performance, all of the above. Ketogenic diet has been shown to significantly improve quality of life across the board. Over 90% of the patients in our studies, in our published literature by Children’s Mercy Hospital shows that quality of life improved at least by 50% from baseline. Another big center the one at Johns Hopkins in Maryland. They are reporting in about 70% of the patients that their quality of life significantly improves. Yes, it does significantly improve. I think that we know that it is multifactorial; because seizures are happening less so it’s better controlled. That gives more energy to the brain to start focusing more in development and in attention and so forth. A lot of times, reducing the seizure medication that alleviates a lot of the side effects which, a lot of times hinders the development and the quality of life. It has been shown across pretty much all of the studies how significantly the ketogenic diet improves the quality of life which is not something that happens with all seizure medications.
Dr. Smith: Right. That’s interesting and that’s good news to hear. The Comprehensive Epilepsy Center at Children’s Mercy – you actually, in this program, have a professional chef. Is that correct? Is that unique to your program?
Dr. Abdelmoity: It is very unique to our program, actually. We are one of the largest programs in the country, actually in the world, for providing the ketogenic diet. One of the problems we sometimes face during the ketogenic diet with all its efficacy, with all its greatness, is compliance, or adherence. The patients might not be able to continue to eat the contents of the diet. That’s when I approached the administration and they agreed to have a ketogenic diet chef and she has made a huge, tremendous difference in our kids’ lives. Having things on the menu, including pizza, peanut butter sandwiches, cupcakes – things that are not on any traditional ketogenic diet’s menu. However, because of how she makes them out of special ingredients coconut flour, using some macadamia grinds and other ingredients, kids are, a lot of times, are continuing to be able to eat things that they like. So, it did make a huge difference, especially in our teenage patient group. That made a big, huge difference. We even set a kitchen up in the hospital to show the families in the hospital how to prepare those meals, prepare the ingredients. We provide them with the menus.
Dr. Smith: Very nice. I do want to mention, too, that the Comprehensive Epilepsy Center at Children’s Mercy is a Level IV center which is recognized by the National Association of Epilepsy Centers. Dr. Abdelmoity, thanks for coming on and thanks for the good work that you are doing. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.