Ketogenic Diet Therapy for Epilepsy
Yara Mikhaeil-Demo, MD, discusses the use of the ketogenic diet, a restrictive high-fat, low-carbohydrate diet, as a treatment for epilepsy, including its applicability and efficacy.
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Learn more about Yara Mikhaeil-Demo, MD
Yara Mikhaeil-Demo, MD
Yara Mikhaeil-Demo, MD is an Assistant Professor of Neurology in the Division of Epilepsy & Clinical Neurophysiology at Northwestern Medicine.Learn more about Yara Mikhaeil-Demo, MD
Transcription:
Ketogenic Diet Therapy for Epilepsy
Melanie Cole: Welcome to Better Edge, a Northwestern Medicine Podcast for Physicians. I'm Melanie Cole, and I invite you to listen. As we discuss ketogenic diet therapy for epilepsy. Joining me is Dr. Yara Mikhaeit Demo. She's an Assistant Professor of Neurology in the division of Epilepsy and Clinical Neurophysiology at Northwestern Medicine. Dr. Demo, thank you so much for joining us today. Describe the ketogenic diet and how it's been used to treat and control seizures in the last few decades. Tell us what it is and how does it work?
Dr. Demo: The ketogenic diet, it was introduced in 1921 by Dr. Wilder at Mayo Clinic to treat epilepsy. And it was used until the 1930s when we had new seizure medications introduced into the market. And then the diet emerged again in the 1990s, because at that time we had studies again showing its efficacy for epilepsy. And we talk about the ketogenic diet. It's a high fat, low carbohydrate diet and the classic diet we talk about in terms of ratio of fat to carbohydrate and protein combined. So we talk about a three to one or a four to one ratio, and that's the classic diet, and that's not the one we use at Northwestern. We use a more liberal diet called the modified ketogenic diet. In terms of how the diet works exactly, we don't exactly know a specific mechanism, but we have a lot of theories about how the diet works.
One of them is that when our body switches from using glucose, using fat for energy, we have an increase in the energy metabolism genes in the brain, and that increases the chances of our neurons surviving in stressful conditions. And that increases resistance to metabolic stress and increasing the seizure threshold. One of the other theory is that the diet alter neurotransmitters in the brain, one of the most important neuro transmitter is an inhibitory neurotransmitter called GABA and the diet increases GABA synthesis and decreases GABA degradation. So we ended up having more of this inhibitory neurotransmitter in the brain, which is again, what you want to treat seizures.
Host: Well, then speak about how this diet is incorporated into traditional therapies for epilepsy, is it an adjuvant, is it a standalone therapy? And then speak about patient selection, who might be an ideal candidate because it's not that completely easy to do, is it?
Dr. Demo: Talking about epilepsy patient in general, about two third of patients are controlled with medications, with seizure medications. And about one third of patients are what we call refractory, meaning they have tried two or more seizure medications and they continue to have seizures. And those are the patients that we usually offer the diet to. We also offer the diet to patients who are controlled on seizure medications, but they're interested in trying the diets to see if they can come down on the dosage of their medications to decrease side effects. We don't have any data about the use of the diet as a monotherapy, meaning as the only treatment for epilepsy. We usually use it in combination with seizure medication. The ideal candidate for the diet is either somebody who's refractory and wants to see if the diet helps their seizure somebody who wants to see if they can come down on their seizure Medications, not stop them completely.
Host: Dr. Demo, I know there are some perceived barriers of initiation of this type of diet therapy. Why do patients think self-management is difficult? You're speaking to other providers, tell them what you'd like them to know about addressing those concerns and how you do that at your clinic. And how difficult is it for families to keep up with this type of diet?
Dr. Demo: The success of the diet really relies on mindset. When patients all the referring providers think of the diet as being very restrictive, it's not going to work, right? So you can imagine when you approach something in life saying, this is going to be really hard. I'm not going to enjoy my life. I'm not going to eat the food that I like. It's really not going to work. So what I really work with patients in clinic and is having the right mindset, thinking about how can I make the diet work for me? How can I think about all the positive result I will get from the diet and how can I vary my diet and have fun with it? So a lot of people think of the diet as just eating like eggs and mayonnaise all day, which is completely untrue. So we talk to our patients about eating minimally processed foods. So we talk about eating a lot of avocado, a lot of non-starchy vegetables, nuts and seeds and berries. And we talk about recipes in clinic and we exchange food ideas and I've done the diet myself. So I have a lot of tricks. We talk about things like how to have pizza. If you're craving pizza, a ketogenic friendly pizza, how to have to keto bread, how to make keto friendly muffin. So I think it's all about mindset and have to have the right one and set ourselves for success.
Host: Then speak about your clinic specifically, Dr. Demo, how does it differ from other hospitals? What makes it unique and speak about the multidisciplinary approach that you're using at Northwestern Medicine?
Dr. Demo: Yeah. So we have a really unique clinic because like you said, it's really multidisciplinary. When the patients first come, they have a group class with our wonderful dietician Ilana, and she teaches them everything they need to know about the diet. She covers, what's a carbohydrate, what's a fat, what's the protein? She also talks about how do we count carbohydrates? Remember me saying, we do not use the classic ketogenic diet. We use a modified version, a modified ketogenic diet, and the patients are restricted to three grams of net carbohydrates. So she teaches them how to count this net carbohydrates. How to read food labels? We also practice reading food labels with patients and we give them a book that has a bunch of really wonderful ketogenic diet recipes. After the class. Then they meet with myself and they meet with Ilana. And I go over their medical history, their epilepsy history, what medications they're taking, what labs we need to order to make sure that they are actually a good candidate for the diet.
And they don't have any medical contraindication to the diet. And then they meet with Ilana and Ilana gives them a very specialized plan for them cause everybody's different. And everybody's requirement in terms of calories, fat, and protein is different. And each patient gets a very individualized plan. That's tailored to their needs. And then after clinic, they have me and Ilana available to answer any questions they have about the diet, about their food options. And because of the diet, like I said, I have a lot of tricks for them. So I tell them like where to find things that they might like as they're traveling, what can they do when they're traveling or if they're working in shifts, how can they incorporate the diet in their life and still have a normal life?
Host: Doctor tell us how have been your outcomes speak about long-term efficacy. What's involved in discontinuing the diet. If someone wants to stop. And if they discontinue, will the seizures come back? Tell us a little bit about what you've seen?
Dr. Demo: When we look at how effective a seizure medication is. We look at something called the responder rate, meaning what is the rate of patients that have 50% or more reduction in their seizure frequency? So for example, if they have four a week, now they have two or less a week. And when you look at the data pulled from all different studies, we find that the responder rate for the diet is about 50%. Meaning 50% of the patients would try the diet, have 50% or more decrease in their seizure frequency. Their seizure frequency goes down by half or more. When we also talk about seizure freedom. If you have a patient who's refractory on two medication and you had a third or a fourth drug, the chances of becoming seizure free is actually 5% or less. With the diet, the chance of them becoming seizure free in one study was up to 13%. So the long-term outcome is good. It's comparable if not better to adding medications. But like I said before, the most important thing is compliance because looking at compliance of the diet is only about 50%. And then if a family or a patient wants to discontinue the diet, then yes, they work with me and they work with Ilana to make sure we wean it off. Just like weaning off medications. You do not want to stop it abruptly because if you do that will increase your chance of having a seizure when you stop it abruptly.
Host: Doctor, what studies have been done or is there research that says that this type of diet can reduce the size of brain tumors or glioblastoma or possibly even improve cognitive function for other movement disorders?
Dr. Demo: The most robust data that we have for the diet in neurology is for epilepsy, there is emerging data showing that it might be helpful for other conditions. There are several small studies showing it might be beneficial in patients with high-grade brain tumors like high-grade glioma, there are studies showing it might be helpful for the non-motor symptoms of Parkinson's. So the fatigue, the tiredness, the lack of sleep, the urinary issues, and there are studies showing it might be helpful for improving cognitive function in patients with early Alzheimer's disease.
Host: So interesting. We'll look forward to more information on that. Is there anything else as we wrap up that you'd like other providers to know about treating epilepsy and the program at Northwestern Medicine?
Dr. Demo: Yeah. We have a really comprehensive epilepsy program. We have a state of the art epilepsy monitoring unit where patients can be monitored safely so we can characterize their seizures and have a better idea of their epilepsy diagnosis. We offer epilepsy surgery for refractory patients who are surgical candidate, and we have a lot of really specialized clinics. So in addition to the ketogenic diet clinic, we have a genetic epilepsy clinic. We have auto-immune epilepsy clinic, tumor related epilepsy clinic, a woman epilepsy clinic for young women who are, might be thinking about getting pregnant or who are pregnant. So we really have a very comprehensive program.
Host: Thank you so much, Dr. Demo for joining us today and to refer your patient to the Ketogenic Diet Clinic at Northwestern Medicine, please visit our website at nm.org/neuro to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians, please remember to subscribe, rate, and review this podcast and all the other Northwestern Medicine podcasts. Until next time, I'm Melanie Cole.
Ketogenic Diet Therapy for Epilepsy
Melanie Cole: Welcome to Better Edge, a Northwestern Medicine Podcast for Physicians. I'm Melanie Cole, and I invite you to listen. As we discuss ketogenic diet therapy for epilepsy. Joining me is Dr. Yara Mikhaeit Demo. She's an Assistant Professor of Neurology in the division of Epilepsy and Clinical Neurophysiology at Northwestern Medicine. Dr. Demo, thank you so much for joining us today. Describe the ketogenic diet and how it's been used to treat and control seizures in the last few decades. Tell us what it is and how does it work?
Dr. Demo: The ketogenic diet, it was introduced in 1921 by Dr. Wilder at Mayo Clinic to treat epilepsy. And it was used until the 1930s when we had new seizure medications introduced into the market. And then the diet emerged again in the 1990s, because at that time we had studies again showing its efficacy for epilepsy. And we talk about the ketogenic diet. It's a high fat, low carbohydrate diet and the classic diet we talk about in terms of ratio of fat to carbohydrate and protein combined. So we talk about a three to one or a four to one ratio, and that's the classic diet, and that's not the one we use at Northwestern. We use a more liberal diet called the modified ketogenic diet. In terms of how the diet works exactly, we don't exactly know a specific mechanism, but we have a lot of theories about how the diet works.
One of them is that when our body switches from using glucose, using fat for energy, we have an increase in the energy metabolism genes in the brain, and that increases the chances of our neurons surviving in stressful conditions. And that increases resistance to metabolic stress and increasing the seizure threshold. One of the other theory is that the diet alter neurotransmitters in the brain, one of the most important neuro transmitter is an inhibitory neurotransmitter called GABA and the diet increases GABA synthesis and decreases GABA degradation. So we ended up having more of this inhibitory neurotransmitter in the brain, which is again, what you want to treat seizures.
Host: Well, then speak about how this diet is incorporated into traditional therapies for epilepsy, is it an adjuvant, is it a standalone therapy? And then speak about patient selection, who might be an ideal candidate because it's not that completely easy to do, is it?
Dr. Demo: Talking about epilepsy patient in general, about two third of patients are controlled with medications, with seizure medications. And about one third of patients are what we call refractory, meaning they have tried two or more seizure medications and they continue to have seizures. And those are the patients that we usually offer the diet to. We also offer the diet to patients who are controlled on seizure medications, but they're interested in trying the diets to see if they can come down on the dosage of their medications to decrease side effects. We don't have any data about the use of the diet as a monotherapy, meaning as the only treatment for epilepsy. We usually use it in combination with seizure medication. The ideal candidate for the diet is either somebody who's refractory and wants to see if the diet helps their seizure somebody who wants to see if they can come down on their seizure Medications, not stop them completely.
Host: Dr. Demo, I know there are some perceived barriers of initiation of this type of diet therapy. Why do patients think self-management is difficult? You're speaking to other providers, tell them what you'd like them to know about addressing those concerns and how you do that at your clinic. And how difficult is it for families to keep up with this type of diet?
Dr. Demo: The success of the diet really relies on mindset. When patients all the referring providers think of the diet as being very restrictive, it's not going to work, right? So you can imagine when you approach something in life saying, this is going to be really hard. I'm not going to enjoy my life. I'm not going to eat the food that I like. It's really not going to work. So what I really work with patients in clinic and is having the right mindset, thinking about how can I make the diet work for me? How can I think about all the positive result I will get from the diet and how can I vary my diet and have fun with it? So a lot of people think of the diet as just eating like eggs and mayonnaise all day, which is completely untrue. So we talk to our patients about eating minimally processed foods. So we talk about eating a lot of avocado, a lot of non-starchy vegetables, nuts and seeds and berries. And we talk about recipes in clinic and we exchange food ideas and I've done the diet myself. So I have a lot of tricks. We talk about things like how to have pizza. If you're craving pizza, a ketogenic friendly pizza, how to have to keto bread, how to make keto friendly muffin. So I think it's all about mindset and have to have the right one and set ourselves for success.
Host: Then speak about your clinic specifically, Dr. Demo, how does it differ from other hospitals? What makes it unique and speak about the multidisciplinary approach that you're using at Northwestern Medicine?
Dr. Demo: Yeah. So we have a really unique clinic because like you said, it's really multidisciplinary. When the patients first come, they have a group class with our wonderful dietician Ilana, and she teaches them everything they need to know about the diet. She covers, what's a carbohydrate, what's a fat, what's the protein? She also talks about how do we count carbohydrates? Remember me saying, we do not use the classic ketogenic diet. We use a modified version, a modified ketogenic diet, and the patients are restricted to three grams of net carbohydrates. So she teaches them how to count this net carbohydrates. How to read food labels? We also practice reading food labels with patients and we give them a book that has a bunch of really wonderful ketogenic diet recipes. After the class. Then they meet with myself and they meet with Ilana. And I go over their medical history, their epilepsy history, what medications they're taking, what labs we need to order to make sure that they are actually a good candidate for the diet.
And they don't have any medical contraindication to the diet. And then they meet with Ilana and Ilana gives them a very specialized plan for them cause everybody's different. And everybody's requirement in terms of calories, fat, and protein is different. And each patient gets a very individualized plan. That's tailored to their needs. And then after clinic, they have me and Ilana available to answer any questions they have about the diet, about their food options. And because of the diet, like I said, I have a lot of tricks for them. So I tell them like where to find things that they might like as they're traveling, what can they do when they're traveling or if they're working in shifts, how can they incorporate the diet in their life and still have a normal life?
Host: Doctor tell us how have been your outcomes speak about long-term efficacy. What's involved in discontinuing the diet. If someone wants to stop. And if they discontinue, will the seizures come back? Tell us a little bit about what you've seen?
Dr. Demo: When we look at how effective a seizure medication is. We look at something called the responder rate, meaning what is the rate of patients that have 50% or more reduction in their seizure frequency? So for example, if they have four a week, now they have two or less a week. And when you look at the data pulled from all different studies, we find that the responder rate for the diet is about 50%. Meaning 50% of the patients would try the diet, have 50% or more decrease in their seizure frequency. Their seizure frequency goes down by half or more. When we also talk about seizure freedom. If you have a patient who's refractory on two medication and you had a third or a fourth drug, the chances of becoming seizure free is actually 5% or less. With the diet, the chance of them becoming seizure free in one study was up to 13%. So the long-term outcome is good. It's comparable if not better to adding medications. But like I said before, the most important thing is compliance because looking at compliance of the diet is only about 50%. And then if a family or a patient wants to discontinue the diet, then yes, they work with me and they work with Ilana to make sure we wean it off. Just like weaning off medications. You do not want to stop it abruptly because if you do that will increase your chance of having a seizure when you stop it abruptly.
Host: Doctor, what studies have been done or is there research that says that this type of diet can reduce the size of brain tumors or glioblastoma or possibly even improve cognitive function for other movement disorders?
Dr. Demo: The most robust data that we have for the diet in neurology is for epilepsy, there is emerging data showing that it might be helpful for other conditions. There are several small studies showing it might be beneficial in patients with high-grade brain tumors like high-grade glioma, there are studies showing it might be helpful for the non-motor symptoms of Parkinson's. So the fatigue, the tiredness, the lack of sleep, the urinary issues, and there are studies showing it might be helpful for improving cognitive function in patients with early Alzheimer's disease.
Host: So interesting. We'll look forward to more information on that. Is there anything else as we wrap up that you'd like other providers to know about treating epilepsy and the program at Northwestern Medicine?
Dr. Demo: Yeah. We have a really comprehensive epilepsy program. We have a state of the art epilepsy monitoring unit where patients can be monitored safely so we can characterize their seizures and have a better idea of their epilepsy diagnosis. We offer epilepsy surgery for refractory patients who are surgical candidate, and we have a lot of really specialized clinics. So in addition to the ketogenic diet clinic, we have a genetic epilepsy clinic. We have auto-immune epilepsy clinic, tumor related epilepsy clinic, a woman epilepsy clinic for young women who are, might be thinking about getting pregnant or who are pregnant. So we really have a very comprehensive program.
Host: Thank you so much, Dr. Demo for joining us today and to refer your patient to the Ketogenic Diet Clinic at Northwestern Medicine, please visit our website at nm.org/neuro to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians, please remember to subscribe, rate, and review this podcast and all the other Northwestern Medicine podcasts. Until next time, I'm Melanie Cole.