Ketogenic Diet and Pediatric Epilepsy

Ketogenic Diet and Pediatric Epilepsy
Monica McChesney MS, RDN, LD, Ismail Mohamed MD and Polly Borasino MSN, CRNP discuss the ketogenic diet and pediatric epilepsy. They share how diet affects epilepsy, how it’s been used to treat and control seizures and why it works. They offer perceived barriers of initiation of this dietary therapy, why patients think self-management is difficult, and how UAB addresses those concerns in the Epilepsy clinic.

Additional Info

  • Audio File:uab/ua199.mp3
  • Doctors:Mohamed, Ismail;McChesney, Monica;Polly, Borasino
  • Featured Speaker:Ismail Mohamed, MD | Monica McChesney MS, RDN, LD | Polly Borasino MSN, CRNP
  • CME Series:Quality and Outcomes
  • Post Test URL:https://cmecourses.som.uab.edu/mod/quiz/view.php?id=4822
  • Guest Bio:Dr. Mohamed graduated from Alexandria University in Egypt and completed pediatric neurology residency at Wayne State University in Detroit, Michigan, clinical neurophysiology fellowship at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio and an epilepsy fellowship at the Hospital for Sick Children in Toronto, Canada. 

    Learn more about Ismail Mohamed, MD 

    Monica McChesney MS, RDN, LD is a Clinical Nutritionist. 

    Polly Borasino, MSN, CRNP is a Nurse practitioner. 

    Release Date: May 3, 2021
    Expiration Date: May 3, 2024

    Disclosure Information:

    Planners:

    Ronan O’Beirne, EdD, MBA

    Director, UAB Continuing Medical Education

    Katelyn Hiden

    Physician Marketing Manager, UAB Health System

    The planners have no relevant financial relationships with ineligible companies to disclose.

    Speakers:

    Ismail S. Mohamed, MD

    Associate Professor in Clinical Neurophysiology

    Monica J. McChesney MS, RD, LD

    Registered Dietitian

    Polly Borasino, CRNP

    Pediatric Nurse Practitioner

    Dr. Mohamed has the following financial relationships with commercial interests:

    Marinus Pharmaceuticals - Grants/Research Support/Grants Pending


    Dr. Mohamed does not intend to discuss the off-label use of a product. Monica McChesney, Polly Borasino and any other speakers, planners or content reviewers (Ronan O'Beirne, EdD and Katelyn Hiden) have no relevant financial relationships to disclose.

    There is no commercial support for this activity.
  • Transcription:Melanie Cole (Host): Welcome to UAB Med Cast. I'm Melanie Cole and today, we're discussing dietary therapy in pediatric epilepsy at UAB Medicine. Joining me in this panel is Dr. Ismail Mohamed. He's a Pediatric Epileptologist at Children's of Alabama and an Associate Professor, Polly Borasino is a Nurse Practitioner and Monica McChesney is a Clinical Nutritionist and they're all with UAB Medicine.

    Thank you all so much for joining us today. And Dr. Mohamed, I'd like to start with you. Studies dating back to the 1920s, have shown the diet can improve seizure control in people with epilepsy. This has been around a very long time. Tell us a little bit about how diet does affect epilepsy.

    Ismail Mohamed, MD (Guest): Yeah, so it even goes longer than 1920s. The ancient Greeks noted that fasting with very small amount of foods will help seizure control. However, fasting is not a long-term solution. So, over the years, the dietary therapies for epilepsy evolved into what we use right now. We use the ketogenic diet to help patients achieve better seizure control. In some patients, that allows a reduction of the dose of antiepileptic drugs and decreases the side effects of medications and in a very selected group of patients with certain genetic conditions, it can be the only treatment that's required.

    Host: Such an interesting aspect of this particular condition, Dr. Mohamed. But so tell us a little bit about the ketogenic diet, how it's been used to treat and control seizures. You just mentioned fasting a little bit. Tell us a little bit about what it is for providers that may not know.

    Dr. Mohamed: So, we typically use glucose as a source of energy in the brain and what we do is we try to shift brain energy utilization from a glucose dependent one to a ketone body dependent one. So, you greatly limit your carbohydrate intake and you obtain the vast majority of your calories from fats. Ketone bodies are the breakdown products of fats and is used by the brain as a source of energy then. And the diet, as you said, has been used since the 1920s, but really it's interest peaked in the 1990s. Before that, there was a lot of hope that the development of new antiepileptic drugs would improve seizure control. However, still one third of our patients are refractory to antiepileptic drugs. And then the ketogenic diet started gaining a lot of interest in the 1990s, after the study of Charlie Abrahams, who was the son of Jim Abrahams, a Hollywood producer, who was treated with the ketogenic diet and obtained seizure freedom with it after failure of several anti-epileptic drugs. And since then, the scientific interest in the diet grew more and more, and the public awareness of it also grew to reach the stage where we are right now.

    Host: Wow, thanks for that story. So, tell us how it's incorporated into traditional therapies. As you mentioned that these therapies are refractory to some of the epileptic medications. Tell us a little bit how it's incorporated. Is it standalone? Does it work as an adjuvant therapy? How does it work?

    Dr. Mohamed: So, typically the diet is used as an adjuvant therapy. We reserve it's use to patients who have failed treatment with antiepileptic drugs. And except in very rare circumstances where the brain has to use ketone bodies as the only source of energy. This is specific genetic condition, called glut 1 deficiency and other rare metabolic disorders where the ketogenic diet become the primary treatment. However, for most of our patients, it will be an add on to other medications. And if the diet is successful in getting better seizure control, then you might have a chance of lowering the doses. Typically not eliminating completely other anti-epileptic drugs.

    Host: So, Monica, tell us a little bit more about this diet. What sort of food is eaten? What does a typical meal look like?

    Monica McChesney MS, RDN, LD (Guest): The classic ketogenic diet is 90% fat, 6% protein and 4% carbohydrates. It is ratio based. So, like a three to one or a four to one ratio, meaning four grams the amount of fat to one gram of carbohydrate and protein combined. So, your primary part of the diet is fat and those sources can vary from avocados, olive oil, butter, coconut oil et cetera. Protein sources can also vary, from chicken, fish, beef and then carbohydrates, which is the last component are provided with fruits or vegetables. However it is a small amount.

    Host: of initiation of this type of therapy. Why do patients tell you that self-management is difficult? How do you address those concerns in your clinic with the families, the parents, the patients. Tell us a little how that works.

    Monica: I think the biggest barrier that we have seen is just the time commitment that it takes. We do ask for a three month time commitment in order to give the diet a chance to work. And it's not something you're able to start and stop within a few days. We do follow up with our families pretty frequently in clinic and that can be overwhelming as well if they have trouble making appointments. And then the initiation process does require an inpatient admission. So, they're here for about five days. So, that can be a barrier to some families as well, but I would say overall the biggest barrier would just be time because it does take a lot of meal prepping. And everything's weighed out on a gram scale, so it can take a significant amount of time to make breakfast for a kid. Whereas before it might've only taken the family five minutes.

    Host: So, tell us a little bit more about how difficult it might be for the family. And while you're telling us that, once they are released, if they spend those few days in the hospital to kind of get used to this different way of eating. How do you support the family as far as once they get home?

    Monica: So, they follow up with us a month after discharge, and they have our contact information and I speak with our families a week after discharge just to see how things are going. We email back and forth. They call me with any questions they have, because it is a complete 180 from a typical kid's diet. And the biggest thing, like I said, just using the gram scale to measure food and all of those meals and snacks are approved by the dietician and the families can't stray from that. So, it can be hard for those kids who eat by mouth because their options are limited. Whereas before they were probably used to eating cupcakes, chips, pasta, those sorts of things, and that is not able to be consumed on the ketogenic diet. So, it can be difficult going from a typical kid's diet to a true ketogenic diet.

    Host: Well, I imagine that it is. So, Monica, just sticking out with you for a second, similar to ketogenic diet, there are some other dietary treatments for epilepsy as well. So, tell us a little bit about some of those other diets that can be explored for pediatric patients with epilepsy and why do they help as well?

    Monica: So, the modified ketogenic diet, which is anywhere between a two to one to a one-to-one ratio, little less restrictive than your classic three to one or four to one. The modified Atkins diet, which is less restrictive than the classic keto. And the biggest pro here is not having to weigh the foods on a gram scale. The family is just responsible for measuring out the foods that contain carbohydrates so they know exactly how many grams they are getting, and that can be anywhere from 10 to 20 grams of carbohydrate in a day. The low glycemic index diet, focuses slowly on complex carbohydrates and it's not intended to promote ketosis. Lastly there is the MCT oil diet, which uses MCT oil as a fat source, but allows for more protein as well as carbohydrates.

    Host: Isn't this interesting and Polly, I did not forget about you. Tell us a little bit about the children themselves on the diet. How long do they stay on this diet? And are there any side effects that you've seen?

    Polly Borasino, MSN, CRNP (Guest): So, when we use the diet for children with epilepsy, we ask the parents to commit to a three month trial. Three months typically gives us adequate time to determine if the diet will be effective for seizure control. If it's effective, the patients and the patients are tolerating the diet well, then we continue and we have a goal to have the families adhere to the diet for two years. At that point we usually look at each individual case just to determine whether or not we will continue. And this is a conversation we have at pretty much every clinic visit where we're weighing the risks and the benefits and seeing how the patient is doing on the diet and in determining whether or not we will continue.

    We do have one patient, the longest we've had a patient on with is it a little bit more than eight years? After about five years, we did try to wean him. And he went from having on the diet, he was having about one seizure every two months, but when we tried to wean him, his seizures went back to 20 or 50 seizures a day. So, as you can see, it was worth his side effects that he had, which were minimal, to resume the diet. And he went back on the diet and he's still on it now for almost eight years. And that's the longer case that we have.

    Host: Well, I also imagine that once they get used to that way of life and to those things, that it would seem counterproductive to change. But thank you for telling us about the fact that sometimes the seizures may return. Tell us a little bit about your outcomes, Polly. You just gave us one. Tell us what you have seen for patients.

    Polly: It's pretty remarkable. We typically try to categorize it into a third, a third, a third. We have about a third of our patients see a pretty significant change in their seizure frequency. We have about a third who it may not make that big of a difference. And then a third of our patient population may not be able to tolerate it for one reason or another.

    We do have about 10% of our patients that overall we will see almost complete seizure control on the diet and that's always our hope when we're initiating the diet. It's what every family hopes for too. So, that's why we always ask for the three month trial to see how each individual patient will respond to the diet.

    Host: How do you monitor them? How do you keep track?

    Polly: So prior to initiating the diet, we screen for any undiagnosed metabolic abnormalities. So, these are things that would be contraindicated with the diet. So, prior to the diet, we always check for plasma amino acids, urine organic acids, ACL carnitine, the carnitine levels. We also go ahead and get a baseline ketogenic diet labs prior to the initiation.

    We do quite a few labs prior to the initiation, then we recheck one month out and then every three months until we feel comfortable to extend to every six months. Labs are part of every ketogenic diet clinic visit. And our standard Keto labs include a CBC, CMP, mag phos, zinc, selenium, vitamin D, a lipid panel, carnitine, ferritin, and then our beta hydroxybutyrate level, which helps us to see how well they're in ketosis as well as anti-seizure drug levels.

    Parents are also helping us monitor the patients on a daily basis. So, we have parents checking urine for ketones. They start off checking them every day and then as families get more comfortable, they might space out the checking the urine for ketones as they get more comfortable. But parents are also just constantly noticing the child having any issues with tolerability like level of alertness, energy level, seizure frequency, but they also help watch for signs of excess ketosis, which can show up in things like vomiting, flushed cheeks, irritability. So, parents are constantly watching the patient and getting back to us if they think that there's any issues with the diet. They're a huge part of our team.

    Host: What an important point that the families and the parents specifically are such a huge part of your team. I'd like to give you each a chance for a final thought. So, Monica, why don't you start? You are a Clinical Nutritionist. What would you like listeners to know for other providers, as far as referral and what you can do for their epilepsy patients and how you can help those families?

    Monica: Yeah, I think it's something that can be intimidating to some families, but we do ensure that they have everything they need to be successful with following the diet. And then it can be a treatment, like Dr. Mohamed said, in conjunction with medications, but it's definitely, an alternative therapy to give a try.

    Host: Polly you're next. What would you like as a Nurse Practitioner that works with these families every day, what would you like other providers to know about the support that you are giving in the multidisciplinary team at UAB Medicine?

    Polly: I would like for the other providers to know our commitment to our patients. We all take this very, very seriously. We all believe in this therapy. We believe we have the best patient population out there because these are the families who are like Monica said, committed to this alternative therapy for their child. It's a multidisciplinary clinic. But it's also part of our multidisciplinary clinic is the family. And we're all in this together and it's helping families who sometimes feel like they don't have hope because maybe some anti-seizure medications did not work for their child. So, we hope that we are able to offer this family hope and an alternative therapy and to know that we walk this walk with this family very, very closely.

    Host: And Dr. Mohamed last word to you for other providers. First of all, I'd like you to speak about anything exciting in pediatric epilepsy at UAB Medicine that you would think that they may not know about, and also kind of wrap it up with a summary of dietary therapy in pediatric epilepsy and really what you'd like to take home message to be.

    Dr. Mohamed: Yeah, I think for the providers it is important to know that the availability and when to use a ketogenic diet or other dietary therapies for epilepsy. We know that it has to be scientific. It has to be medically monitored. We know that there are side effects to it. However, most of the time we're able, with close monitoring to avoid the development of side effects. And if they develop, we're able to intervene with them at the right time. And as Polly said, some of our patients have remained on the diet for a very long time. There is no age limit when you apply it. We even young infants can go on the diet. So, that's an important thing to know. We also hoping to be able to extend some of these services to older adolescents and even young adults who are still followed into here at the Children's of Alabama. I think that would provide some of them a better chance for seizure control and improve their quality of life. And I think, we are here, just if you need us, please reach out to us. We're happy to answer your questions and we're happy to provide any support you need for the patients that we care for.

    Host: What a fascinating episode. Thank you so much, all of you, for joining us today and sharing this multidisciplinary specialty that you're all involved in. Thank you so much. And a community physician can refer a patient to UAB Medicine by calling the mist line at 1-800-UAB-MIST. That concludes this episode of UAB Med Cast. For more information on resources available at UAB Medicine, please visit our website at UABmedicine.org/physician. Please also remember to download, subscribe, rate, and review this podcast and all the other UAB Medicine podcasts.

  • Hosts:Melanie Cole, MS
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