CURE Epilepsy at AES2020

Join us at AES2020

Join CURE Epilepsy at AES2020! We’ll be in our virtual booth Saturday, December 5 through Monday, December 7, where you can speak with leaders in the epilepsy research community and CURE Epilepsy staff to learn more about our research programs.

You’ll have the opportunity to “meet” and greet with luminaries in the field of epilepsy such as:

  • Susan Axelrod, Founder, CURE Epilepsy
  • Dr. Dan Lowenstein, Executive Vice Chancellor and Provost, University of California, San Francisco
  • Drs. Vicky Whittemore and Adam Hartman, Program Directors, NINDS
  • Dr. Karen Wilcox, Professor and Chair, University of Utah


Saturday, December 5

3:00 – 4:00 PM CURE Epilepsy Office Hours Learn about CURE Epilepsy research programs
4:00 – 5:00 PM Meet & Greet Meet the CURE Epilepsy Research Staff, ask questions about CURE Epilepsy, working in a non-profit
5:00 – 5:30 PM Meet & Greet Meet Susan Axelrod, CURE Epilepsy Founder
5:30 – 6:00 PM Meet & Greet Meet Dr. Vicky Whittemore, Program Director at NINDS; ask about navigating basic research challenges during the COVID pandemic

Sunday, December 6

10:30 – 11:30 AM CURE Epilepsy Office Hours Learn about CURE Epilepsy research programs
11:30 AM – 12:00 PM Meet & Greet Meet Dr. Dan Lowenstein, Executive Vice Chancellor and Provost, University of California, San Franciso; ask questions about researching in a COVID world and how we move forward in 2021
3:30 – 4:00 PM Meet & Greet Meet Beth Dean CURE Epilepsy’s CEO; learn about life as a CEO
4:00 – 4:30 PM Meet & Greet Meet Dr. Karen Wilcox, Professor and Chair, University of Utah; learn about her career path and working with the ETSP
4:30 – 5:00 PM CURE Epilepsy Office Hours Learn about CURE Epilepsy research programs

Monday, December 7

10:00 – 10:30 AM CURE Epilepsy Office Hours Learn about CURE Epilepsy research programs
10:30 – 11:00 AM Meet & Greet Meet Dr. Laura Lubbers, CURE Epilepsy’s CSO; learn about her career path and working in a non-profit
1:30 – 2:00 PM Meet & Greet Meet Dr. Adam Hartman, Program Director at NINDS; ask about navigating clinical research challenges during the COVID pandemic
2:00 – 3:00 PM CURE Epilepsy Office Hours Learn about CURE Epilepsy research programs


Help Us Reach Our $50,000 Goal

On Tuesday, December 1, the world will take part in #GivingTuesday, a day of global generosity which encourages people to do good by contributing to organizations and causes they find meaningful. We remain grateful to you for your support of our mission, including those who have financially supported us in the past.

As we’ve shared throughout the year, the pandemic has had a tremendous impact on both epilepsy research and those who fund it, such as CURE Epilepsy. That’s why we’ve set a goal to raise $50,000 on Giving Tuesday: so that we can continue to promote and fund patient-focused research so that one day, we will find a cure for epilepsy.

Donate Today

Our GivingTuesday Schedule

This year, as with most things in 2020, we have decided to do things differently. To celebrate this global day of giving, we have invited our Education Enrichment Fund (EEF) scholarship recipients to take over our social media and share uplifting stories with you that will uplift your spirits and highlight the important role that CURE Epilepsy plays in driving epilepsy research toward a cure.


Head over to our Facebook page to participate in this exciting day of family-friendly activities!

Disparities in Epilepsy: Overcoming Barriers to Improve Care and Treatment Outcomes

Our health is shaped by a combination of many factors such as the conditions in which we are born, work, and live, as well as broader forces and systems influencing the conditions of daily life. The differences in these social determinants across societies result in inequalities (disparities) in both health status and access to health resources, such as health care. Disparities in epilepsy have been identified based on factors such as socioeconomics, race and ethnicity, and address. Increasing awareness and knowledge of social factors in epilepsy is the first step to eliminating disparities and improving care and outcomes for all people living with epilepsy.

This webinar helps viewers define the social determinants of health and health disparities, how these translate to the epilepsy community, and how to identify strategies that can address disparities in epilepsy care.

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About the Speaker
This webinar is presented by Dr. Magdalena Szaflarski, a medical sociologist and health disparities researcher. Her research focuses on barriers to optimal health for vulnerable populations including racial and ethnic minorities, low-income groups, and people living with chronic conditions. Dr. Szaflarski is joined by her research collaborator and spouse, Dr. Jerzy Szaflarski, an adult epileptologist and Director of the University of Alabama at Birmingham Epilepsy Center, for the Q&A portion of the webinar in an effort to address questions related to clinical treatment and care.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Q&A with Drs. Szaflarski

Has there been research that shows evidence on the most effective types of awareness campaigns? I think we all know that we need to increase awareness of epilepsy, but one of the best strategies for doing that?

Dr. Magdalena Szaflarski: So first of all, I believe, based on my experience, that to develop any campaigns or any educational programs, it is necessary to have different groups represented. These types of interventions programs are most effective if they’re put together by different stakeholders working together, right? Because we researchers have our own perspective about how to do this, but we need to listen to the patients and families, what they respond to, and what is important to them. The same thing include healthcare providers and just lay people without epilepsy as well and see where the gaps in knowledge are and awareness and develop programs that work best. For example, in this day and age, in this year in particular, maybe webinars are way to go for some groups and some communities.

And we have health departments across the country doing different webinars for groups of stakeholders but also expanding some of these town hall meetings to whole communities and then people can communicate in that. But I think the essential part is to not only pull together evidence that would be presented to a community, but also have the stakeholders to weigh in on what is the most important information and how it is the best to present this information to others.

Dr. Jerzy Szaflarski: I wanted to add one thing from the clinical perspective, is important to recognize that most of the centers around the country, epilepsy centers, have patients symposia and patients are invited to come, clinicians meet with patients, present the most recent epilepsy data, but these symposia are also designed to listen to patients, to hear their concerns, hear what they need to learn from us so we can in many ways provide better education to our patients.

Can you help us better understand the reasons for regional differences in care and outcomes, for example, in the northeast versus the south?

Dr. Magdalena Szaflarski: So from the research perspective, we know there’s evidence that there is a growing number of cases of epilepsy, and specifically uncontrolled epilepsy in the south. So the term the epilepsy belt has been borrowed from the term the stroke belt in the south. So looking at the regions where there is a high prevalence of neurological disorders and looking at the reasons for it, and in the south, it is the whole area has been plagued by very high rates of health problems, including neurological disorders, but also we have higher rates of poverty and we have high numbers of minorities living in this area. This, and also access issues, can be compiled to contribute to both, I think, the occurrence of epilepsy, but also the trajectory for people with epilepsy to get into care and treatment. I’ll let Jerzy elaborate a little bit farther because he, with his colleagues, also did different additional research on this so-called epilepsy belt.

Dr. Jerzy Szaflarski: So I think the most important factor is that the risk factors for developing epilepsy are very similar to risk factors for developing stroke. So there will be overlap, but we are recognizing now… And I think first time I saw the term stroke belt… I’m sorry, epilepsy belt, was about seven or eight years ago in one of the papers from my colleagues. The risk factors are in many ways similar and access to care is limited, hence what we see is that the conditions in some ways get… maybe not the best word is neglected, but certainly don’t receive as much attention as other conditions, like for example cancer. And access to care is another reason why there is increasing disparity in the care that patients with epilepsy receive.

I actually made that comment a few days ago that the change to telehealth and telemedicine that I’ve been promoting in Birmingham for the last five or six years has actually made access to care better and we see that the participation of patients in their care is much, much better from what we saw about 30% of no-show rates to now about maybe 5% no-show rates. So we are actually providing more care now than we were providing before, which is one of the very few positive things of this pandemic. So that’s certainly is something that we see. However, what we also looked at was the disparities in the care the elderly receive, so Medicare beneficiaries. The interesting part was that although the care that the Medicare beneficiaries receive is very similar across all racial groups, actually the existence of comorbidities drives that the cost of care, especially in patients of African-American descent. So that creates another disparity that we have observed here in Alabama at least.

What should be the role of government, health providers, and pharma industry in trying to equip liberate equal or similar access to health? What about providing health education? Which one do you believe is more important or more probable to reach the target population and have positive impacts to ameliorate these disparities?

Dr. Magdalena Szaflarski: Let me start with maybe the partnership between government, health agencies, federal agencies, and pharmaceutical industry. This relationship is very important. So Jerzy and I come from Europe where there is much higher occurrence of negotiation between the government and pharmaceutical industries and basically the prices of drugs are lower than in the United States where the pharmaceuticals are more independent, I think, and they can dictate the prices of drugs. So somehow you look at the models around the world, it would be important at implementing developing models for the United States, where there’s a closer relationship, where there is more regulation basically on pricing of drugs and I think that really helps. The United States has a long way to go, but we have seen these efforts, I think, at the federal level, the government trying to negotiate the prices of drugs in the United States.

And it’s possible, other countries have done it, so we just have to learn about those models and try to implement some here. But for that, we need public advocacy, right? We need to encourage our government to do this kind of activity and work on our behalf to reduce the prices of drugs. So that’s one way to address this question.

There are two, I think, ways of looking at [improving health education]. One is education of patients and families and then the second is educating the wider public about epilepsy. So on the first front, I think healthcare providers as well as advocacy groups, organizations, provide a great platform for educating patients about new treatments and having this relationship between providers and researchers, epilepsy centers, and organizations like CURE and others, epilepsy foundation, and so on, to create the platform for dissemination of information. While the information for patients and families could be more specific in terms of treatments and also any axillary maybe services available to patients and families within a healthcare setting is important, then on the public level, we’ve seen educational campaigns through the media educating about what epilepsy is and maybe what to do in case somebody sees a person seizing with epilepsy and so on, right?

Knowing more about epilepsy and its source, that it is… in some cultures, it’s still considered… the source of epilepsy is not well known and so there are maybe these spiritual beliefs about epilepsy that exists in certain communities and there is a taboo in terms of talking about epilepsy and also isolating individuals with epilepsy from the larger community. So the more the public knows about what epilepsy is and how to respond and how to improve the treatment of people… treatment, I’m talking about the social relations with patients affected by it and families. So that kind of education is also very important and can be done both by the health agencies, public health agencies, but also private foundations and advocacy groups.

Who is an international organization? Is there a US agency or office that oversees and/or coordinates initiatives to address epilepsy healthcare disparities?

Dr. Jerzy Szaflarski: I think that the most international organization that addresses these issues is International League Against Epilepsy and the American Epilepsy Society is part of the International League Against Epilepsy. International League Against Epilepsy provides not on the education at the provider level but also at the patient level. So it can be accessed through multiple resources, either through webinars or through lectures or through other resources that are available on the International League Against Epilepsy webpage.

But within the US government, there really isn’t an agency that oversees this?

Dr. Jerzy Szaflarski: Not that I’m aware of.

Dr. Magdalena Szaflarski: The Centers for Disease Control and Prevention, the CDC, has a small division of mostly researchers but also public health workers that focus on epilepsy, and there are some research funding opportunities and intervention development opportunities through the CDC. They’ve done a nice job trying to garner some funding and also they are a source of very great data in epilepsy. We can find it on the web, at the and look for epilepsy information and their statistical information. There’s basic information about epilepsy, what it is as a disease, but then also statistical information about how many people are affected and some additional things about healthcare and treatment. So the CDC is a good source. Then at the local public health departments level, in some areas geographically, there is some focus on epilepsy as well, and there could be a small sources of local epilepsy data through health departments around the country.

Okay. Terrific. I know the CDC group is very interested in raising awareness and ensuring that it continues to be funded to do this important work.

Dr. Magdalena Szaflarski: Right. I see a comment there from Sarah Franklin here at the Epilepsy Foundation, Alabama, that obviously the Epilepsy Foundation has done tremendous work as well to educate and to disseminate information.

Right. Absolutely right. Yes, the advocacy groups play important roles. So a question; in terms of disparities, many people with epilepsy also have intellectual and cognitive challenges, are there studies that have looked at the particular challenges and opportunities for this population?

Dr. Jerzy Szaflarski: There are number of studies that look at the challenges, especially controlling the seizures but also creating a safe environment for patients with epilepsy who have intellectual disabilities, whether this is home environment, whether this is a group home environment, whether this is institutional environment. I’m not aware of any studies that look specifically for other opportunities outside of providing better care and better seizure control for these patients that I may be able to say more about that.

Dr. Magdalena Szaflarski: I would say that evidence is limited, they’re small studies, and it’s sometimes hard to extrapolate to larger populations. However, I think where we need to pay most attention is we have this large population of patients with uncontrolled seizures and there are many cases among those where there could be improvement if only the right treatment was applied. So one of the issues is that people don’t always have the access to the best maybe advanced epilepsy care. If we can improve the care and improve the outcomes in terms of seizure control especially, then I think the people who have additional comorbidities or intellectual disabilities, mental health issues and so on, their additional problems could be better addressed as well.

It’s been suggested in the literature, but again, the studies are limited on multi-disciplinary groups, teams, at medical centers and healthcare settings working together, so that you can have epileptologists working together with a mental health specialist, with a psychologist, with a social worker, and that their referral system is easy through the healthcare setting to help these patients and families. I think there’s much more work to be done to understand how these systems of multidisciplinary teams is working and where the gaps are and how to maybe expand that area to provide better overall holistic care to these patients.

Dr. Jerzy Szaflarski: One important aspect that I wanted to add is the transition of care, so something that we see more and more emphasis on when pediatric patients are transitioned to adult epilepsy care. And that is really in every aspect of medicine, we see expansion of the transition of care programs because there are very unique needs that the pediatric patients have, and when they are transitioning to adult care, their needs may not necessarily be changing if they have multiple handicaps. And that is very important. It’s very strongly supported in epilepsy care by the American Academy of Pediatrics in collaboration with the American Academy of Neurology and there are multiple centers around the country that are investigating the most adequate or the best pathways for transition of care. I think that’s an important aspect of that discussion.

Dr. Magdalena Szaflarski: I would like to add one more thing. Sometimes we usually think about the patients, persons affected by a disease such as epilepsy, but I think more work need to be done to understand the situation and experiences of the family, especially the caregivers. We have recently done a nice study of caregivers of people with treatment resistant epilepsy and to understand how they are fairing, and they do not fare so well. Some things that they indicated they would like to see is more support for the caregivers to have places where maybe you can provide care even for an hour or two for a patient so that the caregiver can have an hour or two for themselves to basically recoup and try to relax and so on. So giving more attention to the caregivers as well, especially in those severe cases of epilepsy is important and improve their quality of life as well.

How is patient satisfaction or rating of neurologists factored into the research? Patients without neurologists may have negative experiences with providers and some people give up. So how is that factored in as a social determinant?

Dr. Magdalena Szaflarski: Again, there’s very little systematic research on this, but I think what’s important is to think how much we have to go in terms of changing the culture among healthcare providers somewhat to address specifically social determinants of health, such as different social statuses that their patients may have to be more aware of their socioeconomic status and race and gender playing a role. And I think that education of medical trainees in this area is very important and I think medical schools are actually doing it more and more these days to produce neurologists and other medical doctors who are more compassionate and who understand the barriers that patients may have, also to understand their own biases they bring to the profession and to the care being from different social backgrounds.

And the self-reflection is very important because that is something that could influence the relationship between the provider and the patient and the family and strengthen both not only each other’s understanding, but then having better communication about treatments and also empowering the patients on this treatment journey. So there are some factors there to consider for sure. In terms of just neurologists, I’m not sure in terms of rating neurologists and how people feel about it. But what we know, for example in terms of race, generally in medicine, that patients prefer to have a provider that is from the same racial and ethnic background, right? They have a better understanding if the provider is similar to who they are. I mean, we are lacking a minority neurologists in this country.

There are very few racial ethnic minorities that go into this specialty and so we need to focus on how to attract people from different racial ethnic groups into the profession because then we can serve the patients better through this.

Is there information about disparities in participation in epilepsy support groups across the country? Is there some strengthening that can be done there?

Dr. Magdalena Szaflarski: I have seen many studies on social support groups, and in specific programs in specific healthcare settings, they seem to be working well. What I have not seen is research across different healthcare settings and how social support groups across different healthcare settings work. Also, you have social support groups outside of the healthcare system, right? So you may have them through advocacy groups and more and more so through social media and networking. You have social media outlets where groups of people with different types of health problems can get to get together and help each other. Right? So there are support groups forming online these days as well. But there is no systematic research, there are small studies here and there, so there’s a lot to be done in terms of gathering evidence and to see where maybe improvements can be made and how. And we can have different groups, we can have families with patients, we can have those patients who can communicate well with others, could participate separately, and then you can have caregiver groups as well or maybe providers and patients together. So there are different types of models, I think. It could be thought through and some of them I’m sure are already implemented and used in different settings. But there’s a little systematic evidence about that except to say that they are working well in specific settings.

Dr. Jerzy Szaflarski: I think it’s a very important comment about patients working with patients. I used to practice in Cincinnati now I practice in Birmingham, but I see… and patients ask the question many times, “Doctor, you are advocating for me to have epilepsy surgery. That’s great, is there a patient I could talk to?” And in both centers, we had groups of patients we could refer to patients to. They wanted to be informed, they wanted to hear from other patients who had questions and explain their experiences with epilepsy surgery. And that’s actually very successful. Many patients who are very hesitant, after they talk to others and have better understanding from the patient’s side, they are much more willing to undergo the evaluation and then eventually epilepsy surgery, there are candidates.

So patient-to-patient discussions are very important. 20 years ago, there was no Facebook, so this was okay. “Here is the phone number of so-and-so, please call them if you’re interested.” Today, there are Facebook groups, there are multiple other venues where patients meet and discuss these things. We know about it because we hear from the patients or we hear from people who run these groups, whether this is Epilepsy Foundation, whether this is other group of people taking cannabis for the treatment of seizures who want to learn more. There are multiple groups like that where patients get information and they come to us then to verify it or say, “Well, you said this, but they said this. What are we supposed to do?” Then of course we are in the middle answering questions, but that’s great because that also forces us to address the patient needs and their questions in more detail.

In your opinion, why do African Americans have less advanced treatments?

Dr. Magdalena Szaflarski: Multiple factors are at play. One is that trust between the provider and the patient seems to be an issue for racial and ethnic minorities. One explanation is, of the past treatment of minorities in medical research, we know that there have been abuses of patients in clinical trials, the syphilis Study, for example, the Tuskegee Experiment. So within African American community specifically, there is still some mistrust after all these years of the medical profession, of medical treatments and so on. So medical centers specifically have been doing a lot and building trust in the community, especially in large urban centers where there are large populations from racial ethnic minorities. Outreach efforts are underway in those big cities trying to educate minorities and give them opportunities to be more active in seeking healthcare and to even collaborate and partner with medical centers and community health interventions.

So mistrust is a problem. The other thing is that some research shows that African Americans have lower levels of knowledge about medical treatments. And we don’t know exactly why that is. It could be that they have less contact overall maybe in terms of the temporal dimension, not spending enough time with your physician to actually learn, to increase their health literacy through interactions with providers, and maybe it’s the provider that are at fault a little bit not being forthcoming with information about advanced treatments thinking maybe that they’re not maybe appropriate for these specific groups or something else. So there are definitely patient level and provider level factors that have been identified from mistrust to lack of information and other things that we need to work on from different angles within the healthcare setting on the provider side, but also engaging communities in their health more as well to increase trust.

Epilepsy can be viewed as a spectrum disorder with a broad range of impact on patients depending on severity, ability to gain seizure control for example. How did the studies and figures on quality of life elucidate how disease severity impacts quality of life?

Dr. Magdalena Szaflarski: I’ll let Jerzy answer it. He spent most of his life studying quality of life in epilepsy.

Dr. Jerzy Szaflarski: Thank you for putting me on the spot. Yeah. So, this is actually a very important question. However, we know that there are multiple aspects of epilepsy care that affect quality of life, whether this is seizure control or lack of control, whether this is medication side effects or not having side effects, whether this is some other factors like mood, for example, that definitely affects quality of life as well. There’s a lot of interplay between them. We know from epilepsy surgery studies that quality of life of patients who achieve seizure freedom after epilepsy surgery improves. No question about it. We also know that with improved seizure frequency, there is improvement in quality of life, and when patients go back to driving and when patients go back to full employment their quality of life improves.

So as we are treating our patients, we’re focusing not only on, “Here’s the pill,” or, “Here is the treatment that you should have,” but how we affect their quality of life, their mood, their ability to live independently, their ability to go back to a full employment or to be employed. Those are very important aspects of epilepsy care and questions that we are asked and answer every day.

Dr. Magdalena Szaflarski: Sometimes this balance has to be achieved between what kind of quality of life I can provide with this treatment or another treatment. So if there are severe side effects in the case of one treatment, then what do we recommend and also what patient prefers, right? So patient preferences are very important to consider in the treatment decisions about what they’re willing to maybe give up or accept in order to improve their quality of life. And just to keep in mind, we always just say quality of life in general, health-related quality of life, but it is a complex construct, right? We are looking at different dimensions of life, of functioning, of mental health, social health, and so on, and when we’re starting quality of life, we’re actually looking at these different dimensions and how treatment effects the different dimensions of quality of life.

A woman breathing into a respiratory device next to her doctor.

Breathing and SUDEP: Research & the Influence of Seizures on the Respiratory System

Research suggests that respiratory dysfunction following generalized convulsive seizures is an important cause of SUDEP. Interruptions in breathing can occur during and after seizures leading to an imbalance of carbon dioxide and oxygen in the body. The ability to restore normal breathing patterns and remove excess carbon dioxide may be weakened in some people with epilepsy, potentially increasing their risk of SUDEP.

This webinar provides an introduction to basic concepts and terminology for how the respiratory system functions. It also provides evidence for breathing dysfunction caused by seizures and reviews the data for breathing dysfunction as a potential cause as well as a marker for SUDEP, and a possible means to intervene and prevent SUDEP.

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Dr. Rup Sainju, Assistant Professor of Neurology and Medical Director of the EEG Lab at University of Iowa Health CareAbout the Speaker
This webinar was presented by Dr. Rup Sainju, Assistant Professor of Neurology and Medical Director of the EEG Lab at University of Iowa Health Care.  Dr. Sainju is a 2016 CURE Epilepsy Award grantee, whose research found that respiratory response to high carbon dioxide levels in the blood may be weakened in some people with drug-resistant epilepsy, which puts them at an increased risk for severe breathing abnormalities and SUDEP following a generalized convulsive seizure.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Audience Q&A with Dr. Sainju

Can individuals with severe intractable LGS with multiple seizures die because of SUDEP during sleep, even with no presence of clinical seizures?

This is very interesting questions. Again, if you review the risk factor, the number one risk factor for SUDEP is drug-resistant epilepsy. However, having tonic clonic or convulsive seizures seems to be in terms of types of seizure. Amongst types of seizure tonic-clonic seizure seems to be the highest in potential for causing SUDEP. But the question here is whether if the patient is having nonclinical seizure, can there be increased risk of SUDEP? I don’t think we know the answer fully but it sounds unlikely. However, we’re still learning a lot about SUDEP and SUDEP mechanism. So we still don’t know the full answer at this time. However, it sounds unlikely given the evidence so far.

What is the best type of oxygen mask to use after a seizure and are they postictal?

Number one, again, we don’t know for sure if… We don’t have strong enough evidence to suggest that we should be using oxygen as a therapy after convulsive seizure. We just have some evidence showing that it may reduce the amount of oxygen or the lowest drop in oxygen. It may prevent drop in oxygen and may recover the oxygen level a little bit faster. But that does not tells us how it changes SUDEP risk. So again, we don’t know that yet. We still need more studies addressing these questions.

What would be the risk for someone with a genetic seizure disorder to wear a mask for a work shift six to eight hours a day for three days a week? Is there any mask that would be considered safe for such long-term use? Are there any challenges with using the masks that we’re wearing today?

I don’t think I have a good answer for this question as well. Given COVID pandemic that’s going on, wearing mask is something we should all consider. One thing is for sure is it does not prevent you getting sick, it also prevents spread of disease if you are asymptomatic and still has infection. So, I don’t know that there is a good mask or what type of mask that we should be using. If you are taking care of patients, you should probably use medical grade mask, but if not, then at least using some sort of mask is still good. In relation to epilepsy, we don’t have good information to suggest what’s the best kind of mask for you if you have epilepsy.

When does SUDEP occur the most when the patient is sleeping in a safe position under monitoring, and what can parents do to lessen the chance of its occurrence?

Most witnessed death from SUDEPs reportedly happen after a convulsive seizure. So it’s not during, it’s rather after convulsive seizure. And there is good suggestion that there is something to do with sleep and if you are alone then you actually are on a really high risk of dying with SUDEP. So if you are monitored by some mechanism… Direct mechanism probably is good for a lot of people who don’t mind their privacy, but this is a very personal situation for a lot of our patient with epilepsy. So having some sort of indirect monitoring may help, but again, we don’t know for sure which monitor, whether it’s seizure detector or a video monitor or a seizure alarm like a bracelet or… There is actually FDA approved device, a watch, Empatica, that is approved to detect, an alert system after a convulsion has happened.

We don’t know, again, to the extent how much these intervention are helpful, but I want to highlight that’s why we need more research trying to get more information so we can have more intervention that is available for patients and families. What I tell my patient and their family is I would consider based on the situation, individual situation and preference, having some sort of monitoring or surveillance is reasonable thing to try. It may not have to be the video surveillance. You may just sleep next door or maybe on the same floor. So some studies suggest that when people intervene during or after convulsive seizures, sooner you go and talk to them or try to intervene in some way, recovery seems to be a little bit faster. Their oxygen recovery, as well as their arousal seems to be a little bit faster. So it’s reasonable based on the situation, but there is no single thing that is proven that we can recommend at this time.

Do you suggest that people with epilepsy have a sleep study done to monitor breathing during sleep? Is that possible?

Best thing for people with epilepsy is to take your medicine, talk to your doctor how best you can control your seizure. Because again, we don’t have a medicine to prevent SUDEP at this point given all the potential we discussed. Best approach still is try to control your seizure best. Having said that there is a good proportion of people who have epilepsy that may have obstructive sleep apnea. So if you have some of the simple symptoms of potential obstructive sleep apnea, for example, feeling fatigue, lack of energy, headaches, or people actually witnessed you snore during sleep or stop breathing during sleep, I think that would be very reasonable time to evaluate for a sleep study and get it treated because poorly controlled sleep apnea or untreated sleep apnea can worsen seizure and epilepsy control.

Does a co-morbidity of autonomic dysfunction increase SUDEP risk in epilepsy patients?

We don’t have much information about this yet and what we have is during or after convulsive seizure, some people can have really irregular heart rate or problem with blood pressure. How that translates into SUDEP risk is not clear. How common that is is also not clear at this time.

Will the pulse-ox be a helpful alarm for people while they’re sleeping?

It depends on the type of epilepsy as well as type of seizure that we’re dealing with. And if you’re talking about monitoring a child, that may be a problem putting the probe in to begin with. But if pulse oximetry is good enough to detect seizure-related drop in oxygen and alarm you, it sounds reasonable to think about it, but we don’t have a study showing that is what is very helpful. But again, I’ll circle back to the same thing. Some sort of supervision is reasonable, including pulse oximetry, but you have to think about it has a lots of false alarm that is associated. And false alarm could be because the probe is displaced while during movement or during sleep versus there are… So many different things can go wrong and give you a wrong pulse oximetry read.

A couple of people asked about examples of serotonin medications. What are those?

A very commonly prescribed group of medicine includes SSRI or selective serotonin reuptake inhibitors. These are a group of anti-depressant. Or most medicines that is often used by psychiatrists. And the studies I alluded in this talk that were included in human, part of the human studies were people taking either SSRI or similar medicine. There are a group of… Another group called SNRI is non-selective serotonin reuptake medicines. These are also antidepressant medicines. And there are some… or supplement rather that can convert into serotonin in body like tryptophan or 5-hydroxytryptophan. So these would be considered as serotonergic medicine in general, if that’s what we’re getting at.

In terms of common names, Prozac would be a common name people might recognize. Celexa or citalopram, escitalopram would be some other names.

Fenfluramine for Dravet: An Old Drug with a New Purpose

Epilepsy research has given the once-popular weight loss drug fenfluramine a new  purpose. Fenfluramine (Fintepla®) is now FDA-approved to treat Dravet syndrome, a rare, catastrophic form of  pediatric epilepsy. In this webinar, you will learn why doctors explored fenfluramine as a possible therapeutic option for epilepsy, and why it is safe and effective treatment for epilepsy in children with Dravet, as well as the potential side effects caregivers should know.

Our webinar presenter is leading-expert Dr. Joseph Sullivan, pediatric neurologist and Director of the UCSF Pediatric Epilepsy Center. He specializes in evaluating and treating children with epilepsy, particularly for those with epilepsies that do not respond to medications. In addition, he runs a specialized Dravet/PCDH19 clinic, where he cares for a large cohort of children with these types of genetic epilepsies.

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Audience Q&A with Dr. Sullivan

Can you talk about other syndromes or epilepsy types that Fintepla might be useful for or is being tested for?

There is a completed Phase 3 study with published results in Lennox-Gastaut syndrome, which also showed efficacy compared to placebo. It wasn’t as dramatic as what was seen in Dravet syndrome, but Lennox-Gastaut syndrome is a very different syndrome than Dravet syndrome. My understanding is that Zogenix will be submitting for labeling for the use of Fenfluramine in Lennox-Gastaut syndrome. I think that it definitely warrants additional study in terms of whether there are other epilepsy syndromes that this could be effective for. My colleague Elizabeth Dr. Thiele has a small study in sunflower syndrome that has also shown efficacy.

Those are three very different epilepsy syndromes. It’s very possible that fenfluramine could be a broad spectrum antiepileptic drug with sort of these favorable or more enriched responder rates in some of these syndromes. It’s our job as the clinical pediatric epilepsy community to try and figure out what would be the next target syndrome to go after.

Are there medications that help kids who have seizures related to heat or rapid body temperature changes?

We definitely know that patients with Dravet syndrome and who have SCN1A mutations do have temperature sensitivity. That’s been well documented in animal models. Interestingly, this temperature sensitivity does tend to wane over time. Adults tend not to be as temperature sensitive.

In my opinion, fenfluramine is not necessarily being effective in just those patients that have temperature sensitivities. I think this may be something where, again, there’s that enriched responder rate for Dravet syndrome, but that’s independent of this temperature sensitivity, but it’s an interesting question to ask as to whether or not there are other temperature-sensitive seizure syndromes that may be a target.

In my practice, when Dravet patients actually have a fever, even though we have no evidence to support this, we do try temperature reduction reducing measures, and for some kids we even try to give sort of benzodiazepines for 24 to 48 hours to bridge them through their fever. Again, isolated patients say, “Yes, that’s effective for my child,” but that’s not something that I recommend with every patient and certainly don’t have any scientific data to support those recommendations that I’m making.

Do you have any concerns recommending this treatment for kids with minor cardiac regurgitation after study Fintepla? My child couldn’t get into the clinical trial because of this issue.

Even in the placebo group, we saw this regurgitation. This actually created some anxiety for some of our patients who were left wondering, “Oh, no. Does my child need to see a cardiologist?” The answer is no and we’ve asked cardiologists this all across the country. Your child’s heart is normal if they have trace regurgitation, and that should not be a precaution for starting Fenfluramine now in the post-studies commercialization phase.

We don’t really see any signal to suggest that trace regurgitation – again, because it’s a normal physiologic finding – would be a risk factor for the development of valvulopathy. That finding going to be followed over time and is why I feel very comfortable that this REMS program is going to allow us to start this drug in more patients and follow that safety signal over time.

Could this drug be used in a child who is weaning off phenobarbital?

Our goal is seizure control and minimizing side effects and maximizing quality of life. I think you’d have to ask yourself, how is your child or your patient doing on phenobarbital? Phenobarbital certainly gets a bad reputation, but it does work for some patients. I would say if the patient is doing whatever you determine is okay, then I would not rock the boat. Go with what you know because while fenfluramine was effective in the majority of patients, there are some patients it’s not necessarily going to work for.

I said my new bar is 75% reduction of seizures. If the child is still having a high seizure burden and you’re questioning whether or not they are phenobarbital-related side effects, I think it would certainly be the right next step to add fenfluramine to that regimen. If the patient improves, then very, very slowly taper off some of the background drugs, That’s true for phenobarbital and that’s true for valproic acid. It’s true for any background drug.

If I’m adding a second or a third or a fourth drug to a regimen, I’m acknowledging that drugs one, two, and three are not getting that person to where they want to be. We see dramatic improvement after taking the new drug, we then have to ask ourselves, “Is the majority of that improvement all being realized from the additional drug? Can I reduce background drugs?” Unfortunately, I showed you that list of drugs that were in the Phase 3 trials. Even though there were only four to five drugs that were the most commonly used, we cannot tease out whether or not there’s like a combination that was more effective than others and I think we’ll just sort of have to realize that as more patients get started on these over time.

Are patients on Fintepla also on Epidiolex?

Epidiolex was not yet FDA-approved during our Phase III program, and any other investigational drug was not allowed in the double-blind placebo-controlled trials. Even on the open label extension, for the first six months, we really couldn’t make any changes to background medications – specifically adding of drugs because then that actually really confounds the open label extension data. Then, it just happened to align that as once Epidiolex was approved and we had more patients in the open label extension, and again, even if you were considered one of those super responders and had a 75% reduction of seizures, if you were still having seizures, the investigators did have the ability to ask the medical monitor for permission to start the drug.

In the expanded access program, I certainly have a handful of patients who are on both. It’s still been a relatively short period of time for me to be able to say with confidence how that combination working. It seems at first glance to be well tolerated. There does not seem to be significant drug-to-drug interactions, but ask me that question a year from now and I think it’s going to be exciting to report back whether or not we can see these incremental benefits of two drugs that have good Phase III controlled data to support their use in these patients.

A male doctor in scrubs analyzing brain scans on his computer.

Webinar: Transforming Data into Seizure Control with Learning Healthcare Systems

“Learning healthcare systems” is a method of improving clinical outcomes in patients by collecting and analyzing privatized electronic health data, then rapidly disseminating findings to change medical practices.  This approach is highly collaborative, bringing together patients, families, doctors, and researchers from institutions around the country and even globally.

Two learning healthcare system initiatives are actively working towards this goal specifically for people with epilepsy, one focused on care for adults and one focused on care for children.

This webinar will discuss the progress and potential impact of the Pediatric Epilepsy Learning Healthcare System to epilepsy patients, their families, and to the entire epilepsy research community. At the end of the presentation, audience viewers asked Dr. Zach Grinspan questions on how data and collaboration is being used to improve patient care and outcomes.

You can find a transcript of the audience Q&A below.

Dr. Zach Grinspan

This webinar is presented by Dr. Zach Grinspan, Associate Professor of Population Health Sciences and Pediatrics, and Director of Pediatric Epilepsy at Weill Cornell Medicine.  He is primary investigator of the Pediatric Epilepsy Learning Healthcare System project and the Rare Epilepsies in New York City project, and currently serves as chair of the steering committee for the Pediatric Epilepsy Research Consortium.

Audience Q&A with Dr. Grinspan

From a digital perspective, what are your biggest data-gathering needs at this point?

Let me be a little wordy with my response. We’ve had many conversations with IT groups around the country about how do we standardize process of getting electronic health records. Other groups have done that and I think we need to get better at that.

Right now, it’s a lot of phone calls and a lot of specifications. It works. We’re getting there, but we could certainly be more efficient. We have a good system to transfer the data. Now that we have the data, we’re starting to run into some bottlenecks with the processing. We have one analyst working through it. As we scale up, we’ll need more people processing the data and getting it ready. A lot of the technology is free, so we have a good pipeline to get the reports out.

We have electronic health record system questionnaires deploying over the next few months. Epic is going to release our questions this month. Cerner is not far behind, and someone has already built the questionnaires in Athena. We’ll want to expand to other electronic health record vendors, because we really want to be vendor agnostic. Then, we’d like to bring more data in.

Data from EEGs, MRIs, devices, and patient-reported outcomes would be amazing. People who wear devices are walking around collecting data moment to moment with an RNS or a VNS, and so we want to explore partnering or working together to include that data. Some of it is humanware. I think technology is relatively straightforward. It’s just a matter of all of the conversations and figuring out how to get the data out, move it, and link it.

Have advancements in implants, watches, and other devices helped you understand more about medication efficacy for patients? Has this new data increased the whole picture of an epilepsy patient’s day and changed the way you view potential versus multi-drug prescription regimens?

It’s a great question, because what it gets at is that, in the digitized world, you have people who are creating oceans of data, begging the question, “Can we do anything with it?” For some patients, the answer is absolutely. Certain kinds of data, like VNS and RNS data, can help doctors make very targeted changes. The question is, how do we scale that process and how do we learn from it? And the question is very compelling. We are not there yet, because we don’t quite know how to do this yet at scale. It’s a long-term goal of ours.

Can the collected, aggregated data be individualized? Or can that data be available to doctors and patients for a fee? For example, if RNS data is collected, would somebody need to pay in order to see their own data?

I’ve never had anyone ask me for a copy of their VNS or RNS data. It’s certainly doable and the data is, after all, coming from the patient. I don’t see any obstacle to that.

Other learning health systems use identified data, so their databases know your name, date of birth, everything. These systems actually do provide as the questioner poses direct services. “Here is a patient-level report about how your patient is doing.”

We shied away from that for privacy reasons. Data breaches can be devastating for so many reasons, so we opted to use less personalized data. We don’t know anyone’s name, date of birth… we do know zip codes, but we don’t know where patients live or their medical record number. That was intentional.

Our thought process here is that we can send information to individual centers, which can identify the patient. The report might say, “Patient ABC had this happen.” Then the center has the ability to say, “ABC is actually John Smith.” They have to do that extra step. I don’t know it’s John Smith. I know it’s ABC.

This method helps make the data more secure, but we’re very much about data sharing, and so we have promised all of our collaborators that they can have their own data with no questions asked. We’ll just give it back to them. We’ve crunched it and processed it a little bit because we want to promote your new faculty, we want to promote residents, and fellows who do research projects. Then, for the network, if one investigator says, “I have an idea. It works on my own data. Can I do it on everyone else’s data?” Then, we have a very straightforward process to allow that to happen, too. We really all want to learn together.

You’ve talked about data sharing. Will data sets be made publicly available?

I don’t think we’ve thought about that really. The data sets we have qualify as limited protected health information (PHI), so we can’t share information like dates of birth and zip codes. But the full data sets… I mean, theoretically we could. I think we’d have to talk and think a bit more about that.

A lot of networks want to make sure that patient data is used for a purpose that’s aligned with the mission of the organization, so there’s often a process. We don’t have such a process in place right now, but if that became something of interest to the community, there’s no reason we couldn’t start planning.

How have you had to overcome the barriers of institutions not wanting to share their data with other institutions?

I thought that was going to be a huge problem, but it doesn’t seem to be an issue. Everyone’s so happy to share. It’s really nice. As much as I’d like to say I’m a pioneer, I’m not. People have been working on this in other fields for more than a decade, so the ground has really shifted and we’re in a new world.

The Pediatric Hospital Inpatient System has data from roughly 45 centers, including data from Cornell, Columbia, NYU… and you can walk from one to the next in an hour. I think that the culture, particularly in pediatric hospitals, is very mission-driven, so these potential issues of competition and “you can’t have my data” has just not been a problem.

What are you doing to monitor and measure the impact of diet on seizure control?

It’s not easy to figure out who is on an epilepsy-related diet and who isn’t from the data we have. I showed you that one question about the seizure frequency, but we built in some questions also about diet. It’s pretty epilepsy-specific, so the options we list are the ketogenic diet and modified Atkins, low glycemic index, or other. That’ll give us some high-level information about who’s on what diet, if it’s working, and similar information. More detailed information about specific foods and specific exposures would mean a whole different level of data collection.

Are you familiar with the Observational Health Data Sciences and Informatics (OHDSI)?

Let me nerd out for a bit! One of the major questions we’ve had is, “What does a tables look like in the database?” A lot of people have spent whole careers thinking about that for health data. The Patient-Centered Outcomes Research Institute, has advocated use of PCORnet, the PCORnet Common Data Model.

Our data looks a little bit more like PCORnet mixed with the OMOP model. Currently, our data model is our own, which could be sort of seen as a simplified version of OMOP and PCORnet. What we told our sites is, “If you have the data in PCORnet or if you have the data in OMOP, just send that. Don’t reinvent the wheel.” No one’s taken us up on the offer, so it seems like operationally, a lot of the sites are finding it easier just to kind of make a custom extract for us and just sending us what we want, which we’ve been fine with.

Would it be beneficial for a healthcare provider to have the PELHS questions answered before the visit versus during the visit?

Yes and no. We really want curated data reviewed by a clinician. The workflow that this question proposes is a good one, in which the parents or the young adult enters the data in prior to the visit, and then the clinician and the family review it together. That would be totally okay!

We’ve spoken with Rob Moss, who runs SeizureTracker, and he’s very excited about this idea. He’s been working to link his application with Epic, which is one of the electronic health record vendors. What we’ve asked is, “If you get that workflow there, can the SeizureTracker data populate the learning healthcare system data?” We’re agnostic on how the data gets into the system. If the data gets in there and the clinician vouches for it, then we’re good.

Are patients and their families aware you are collecting these data? How do they feel about participating?

We’ve been very deliberate from the beginning in maintaining communication with advocacy groups and including parents and people with epilepsy at the highest levels involved in developing this system, so there are representatives. That being said, if a parent bring their child to one of the centers involved in this project, they wouldn’t know that the information from that visit is being brought into our Learning Healthcare System.

The reason we forgo getting patient and caregiver consent is that the labor required is too much work for the kind of data we’re gathering. The way electronic health record data is used for research in this country tends to support that. Institutional review boards granted us an exemption from the federal regulations from HIPAA, which allows us to look at the data without getting explicit permission from a hundred thousand people.

We’re comfortable with because we feel the good things we’re going to learn far outweighs the risk to loss of privacy. We’ve been quite intentional, as I said, about making sure that the data that we have doesn’t have a lot of personal information – no names, no addresses. We have dates of birth, but lots of people share same dates of birth. When we’ve spoken to advocacy groups, most people are in agreement that the labor required is too much work to get those consents. We’d spend all of our effort doing that and the groups would rather us do the learning . We got all of the approvals. We have data use agreements. We have all of the legal and ethical infrastructure, but it’s true that you wouldn’t know that your data is going to be in there necessarily.

How have you involved patients in designing this system, the process, and the governance? Are differences between the Pediatric Epilepsy Learning Healthcare System and the other system that you mentioned in your presentation?

Both systems are quite deliberate and have made a big effort. The ELHS, the Epilepsy Learning Healthcare System, is run out of the Epilepsy Foundation, which at its heart is an advocacy organization. I think the DNA there I think is much more about patients’ perspectives. We were aware of that. We wanted to make sure we were listening and including that voice, which is why we bring everyone on the calls.

As a example, when we put our forms together, we wanted to have a scale like, “How often are you having seizures?” In the original scale, the most you could say was multiple per day. A couple of parents were like, “My kid has more than that.”

“What do you mean?” we asked. “Multiple per day, that’s it.” Parents said, “Yeah. I can’t even count because there’s so many.”

We said, “Oh, okay. We missed something important.” Now the highest level is “too many to count.”

Is there the possibility for an international collaboration? Could it be even better with hundreds or thousands in the wider group?

I love that. Whoever wrote that question, we are like mind melded. We’ve had some conversations about collaborating internationally. Building the questionnaire into the healthcare records vendors’ system, then all of their customers internationally can then use the form. Then, if you get a collaborator, then the data’s already there. The collaborator just has to send it.

How do I encourage my neurologist to participate in The Pediatric Epilepsy Learning Healthcare System?

Tell them to email me. We have some funding and we were provided 20 participating centers some seed funding. That money has run out, but some sites are willing to join with internal resources. At present, if there are sites that are enthusiastic, they can just find me and I can have a conversation with them.

The other thing is that 54 of the US Pediatric Epilepsy Centers are part of PERC, and I am pitching and giving updates on this through all of our PERC calls. We just had our annual meetings last week and we have calls every other month. Find out if your center is part of PERC, find out who the PERC representative is, and then having that person reach out to me.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Female psychologist working with boy who has autism and epilepsy.

The Epilepsy-Autism Connection: Research, Diagnosis, and Treatment

It is estimated that over 30% of people with epilepsy also meet the diagnostic criteria for autism.1 In this webinar, presented by Dr. Jamie Capal, hear leading theories on the interconnection between autism and epilepsy. Learn about the most common seizure types in people with autism and dive into the current research on why so many children with autism develop epilepsy.

Dr. Jamie Capal is Associate Professor of Pediatrics and Neurology at Cincinnati Children’s Hospital Medical Center. Dr. Capal has been an integral member of the multidisciplinary Tuberous Sclerosis Clinic Center of Excellence and maintains a busy clinical practice diagnosing and treating children with autism spectrum disorders and comorbid neurological disorders. Her current research is focused in the areas of autism spectrum disorder and Tuberous Sclerosis Complex.

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1 Spence, S., Schneider, M. The Role of Epilepsy and Epileptiform EEGs in Autism Spectrum Disorders. Pediatr Res 65, 599–606 (2009).

Audience Q&A with Dr. Capal

Dr. Jamie Capal

Your presentation shared a lot of information about tuberous sclerosis complex. Can you speak to the information we’ve gathered there, and how that might translate to other neurodevelopmental disorders? 

That’s a great question. Currently what we’ve learned is that the earlier your brain gets disrupted (by seizures for example), you’re at a much higher risk for overall disorganization of the brain. And so, what we’re trying to figure out is, are there other things that can tell us what else is going on from a structural standpoint, from an EEG standpoint? Because the goal is prevention.

There are studies going on now, the PREVeNT trial for example, looking at early seizure treatment in babies with Tuberous Sclerosis Complex who have not had seizures yet, but do have abnormalities in their EEG. If you treat the abnormalities before the seizures come, will you get better results with development? And maybe better results as far as preventing autism? That study is closing right now, so we are very interested to learn the results, because really that’s the next step.

Many other neurodevelopmental disorders are also looking at similar things, and what we know is looking earlier is better. The earliest we can try to advocate for prevention, the better off we are to disrupt these mechanisms that result in developmental delays and autism.

EEG testing is not standard when screening for autism. What sort of information would need to be gathered in order to make that a more standardized approach?

I think what we really need is a protective studies – basically doing screening EEGs on all kids that are newly diagnosed with autism, and then follow them out longitudinally. But the problem is that this is a very expensive and long study, but I really think it’s something that needs to be done. That way, we have a true idea of what the percentage of kids with autism have abnormal EEGs, and what their risk of eventually developing epilepsy is. That will give us the evidence we need to say, “Everybody with autism needs to get an EEG as screening.” Right now we just don’t have anything.

In focal epilepsy, if seizures are emanating from a specific area of a brain, is a person more likely to develop autism?

A lot of people have looked at this. There is some evidence showing that maybe epilepsy in the frontal region of the brain, or the temporal region of the brain may predispose you to having autism, but it’s not universal. There’s some evidence showing that.

Has any research looked at if children with autism can improve cognitively with increase seizure control? 

The study I referred to in my presentation that is looking at the natural history of the development of autism is working to understand this. We collect all the seizure diaries form patients in this study, and we are going to see if anyone’s scores improve with treatment. There’s also a group looking at whether or not improving seizure control with epilepsy surgery increases cognitive development. Again, the goal though is to look at this early in life. That is where the field is going right now. Nothing has come out of it yet, but that’s we’re looking.

We know epilepsy can impact cognitive function, and then cause cognitive decline in a way that might make an adult look like they have some aspects of autism. Is this due to the seizure activity? Is there a way to protect the brain from that seizure activity?

That’s a difficult question to answer. Think about the epileptic encephalopathies, for example. Those are the patients who are having lots and lots of seizures, and even when they’re not having seizures, they’re background brain activity is abnormal. Their neuronal connections are not allowed to form correctly, so those patients are going to develop cognitive impairment. In those cases, by controlling the seizures, you would expect cognition to improve.

In other cases though, it’s less clear. I think you have to think about epilepsy as not causing necessarily causing the delays. There may be two things happening simultaneously, and epilepsy is just making it worse. So treating epilepsy may help, but it’s not going to reverse cognitive impairment.

Are there links between epilepsy, autism, and Alzheimer’s?

I can’t say that I know a lot about the literature for Alzheimer’s, but I can say there is a lot of interest in looking at the connection between Alzheimer’s and autism. I think there are a lot of shared genetic mechanisms between these conditions. That connection is definitely something I think needs to continue to be looked at as we do more genetic studies. We need to look at; what are the shared genetic links between individuals with Alzheimer’s and autism? That being said, research has found that there are many similarities in the connectivity of the brain in both of those disorders.

Many people with epilepsy, including those with autism, are not responsive to medications, and antiepileptic drugs can cause side effects, like mood changes, GI issues, anxiety, increased repetitive behaviors that worsen…. What are your thoughts about the VNS, and more specifically the noninvasive VNS that is not approved in the US as yet? Does it help with autistic behaviors at all?

I like VNS. I think there are some folks it works very well with. I had one patient, for example, who I was thinking about doing a VNS on, but because he is so active and his behaviors were so erratic, he wasn’t deemed a good candidate for it. Another patient I’m thinking of really did well with VNS,  because they were having so many negative side effects from antiseizure medications.

Should all children diagnosed with epilepsy, especially learning disabilities, be screened for autism?

Ideally, yes. The American Academy of Pediatrics has set up a guideline to screen young patients for autism with the M-CHAT, which is a questionnaire that parents get at 18 months, 24 months, and then again between ages two and three.

One problems is that when young individuals are diagnosed with epilepsy, other aspects of their development aren’t really paid attention to as much. So, clinicians are finding that individuals who are being diagnosed with autism much later, because maybe the doctors were spending more time really focused on the seizures. Those folks really should have good surveillance by their pediatrician. If there are any concerns for development, they should be referred on to developmental pediatrician for further work up.

So, this is really a place where parents could be advocating for that.

Very much so.

What evaluations are being done outside the brain and EEG? Are people looking at the gut, the autonomic nervous system, or sleep disruption that are implicated in both epilepsy and autism?

Yes. There are definitely folks looking at the gut-brain connection. I think there’s a lot of interest there. It’s almost like these subtypes of autism. Abnormal EEG is one subtype, then there are patients with GI disturbances in another group. Sleep can be disrupted for many reasons and you see this problem in various subtypes of autism. There’s an autoimmune interest in individuals that potentially have an autoimmune component to their autism, which I again think is another subtype worth studying. So, I think the more we learn about the underlying causes, the better able to study the clinical features we are.

We historically have been looking at autism as a set of symptoms. But if we study autism as the symptoms only, even though there could be hundreds of causes behind it, we’re not really going to learn anything.

There was a question about what type of preventative treatments would be given to a person with autism and abnormal EEGs, but it sounds like we really need to understand the biology.

Correct. We don’t know. There have been some small studies that have put kids with abnormal EEGs on depakote, for example, and really haven’t found a lot of benefit. The interest is: do we put these patients on medicine to prevent epilepsy? Do we put them on medicine to improve their EEG? We don’t know.

If we look at benign rolandic epilepsy, for example, those individuals may have a few seizures, but they have a lot of underlying EEG abnormalities when they’re sleeping. Some groups found if you treat the EEG abnormalities, cognition may improve. So, the same thought present here, but nobody has ever done a big enough study to tell us that treating EEG abnormalities is worth it. This area definitely needs to be studied.

It could be very difficult to get a non-sedated EEG on children with autism due to sensory and other issues, especially an overnight. Are there other ways to perform EEGs with a headband or other nontraditional approach? 

Some researchers are using the EEG cap. One group is actually desensitize the children in their study by having them wear a hat, so they can get used to the feeling. Those EEGs are pretty accurate versus the traditional leads.

Now, a lot of times we don’t do that clinically. I’m sure there are a lot of reasons financially and training-wise. But I know in research, to get all of these children to have EEGs, the scientists become really creative at desensitizing the kids. For all of our studies we do EEGs on all of our kids, and the tests are actually pretty successful.

What’s involved with genetic testing, and where can we direct people for more information?

Genetic testing can be done several ways. Typically and historically, it’s been a blood test. Your neurologist or developmental pediatrician can order it. What we tend to do is a “chromosomal microarray,” which looks at any deletions or duplication in genes. This test is a good place to start. There are many companies which have developed genetic panels that can be done by blood or saliva. Each panel is different and geared toward a certain set of genes – there’s a autism and developmental disability panel, there’s an epilepsy panel…. So, those are targeted tests.

Then you have the bigger whole exome sequencing. Currently, the Simons Foundation has a big study going on throughout the country called the SPARK study. The study team is collecting saliva from the patient and both parents to look at their exomes and really understand the genetic underpinnings of autism. You can even go to the Simons Foundation’s SPARK study, and can get a kit sent to your house. That’s a great, free way for families to get genetic information, since often genetic tests are not covered by insurance.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: The ABCs of EEGs: An Evolving Tool for Epilepsy Diagnosis

This webinar explores the intricacies and advancements in a well-known diagnostic tool; an EEG.

An electroencephalogram – better known as an EEG – is a test that records electrical brain patterns from the scalp. EEGs are critical for the diagnosis of epilepsy and other neurological conditions. While this diagnostic tool has been available for nearly a century, there have been great advances in the portability and signal detection properties.

This webinar discusses how epilepsy patients have benefited from advances in EEG technology, and the role of the EEG and other neuroimaging tools in the future of epilepsy diagnosis and seizure localization.

This webinar is presented by Dr. David Burdette, Epilepsy Section Chief for Spectrum Health Medical Group in Grand Rapids, Michigan. He has been at the forefront of EEG education having served on the American Board of EEG Technologists (ABRET) and the LAB-EEG board of the American Board of EEG Technologists (ABRET).  Dr. Burdette’s clinical interests include neurotelemetry, long-term EEG trending, treatment of refractory epilepsy, treatment of status epilepticus, and electroencephalography.

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Dr. David BurdetteAudience Q&A with Dr. Burdette

How often should a patient get an EEG if a past EEG was abnormal? At what point do you elect to have a 24 hour versus a 60 minute sleep-deprived EEG?

That is an interesting question, for which there’s not necessarily a right answer or a wrong answer. First, a question: why do people get EEGs? If someone has what I would consider a prototypical seizure…. The old expression goes, “If it walks like a duck and quacks like a duck, it’s probably a duck.” And if someone has seizures that walk and quack like seizures, it’s probably seizures. And if they walk and quack like a focal seizure (what we used to call a partial seizure), then I’m going to treat it as a partial seizure. I may not even need an EEG to do that.

I’ll get an EEG, just a one off type EEG, to make sure I’m not just totally out to lunch. But that EEG may end up being normal, even though that person is probably still have seizures. So, if a patient responds to the first medication I prescribe, as arguably 47% of people do, then that’s great. There is no compelling reason in my mind to repeat that EEG. If that person doesn’t respond to the first medication, I’ll usually have a plan B, so we’ll try the plan B. If that doesn’t work, I need more information.

I need to get some insight into how a person who hasn’t responded to the second medication is doing, so I may get a sleep deprived EEG or a two hour long EEG, so that way I can see those brain waves when they’re awake, drowsy, and asleep. Often times we need that sleep in order to really see the rhythmicity of the brain and for me to figure out, “Ah I was wrong. It was walking and quacking like a partial seizure, but in fact it was a generalized seizure and I chose the wrong medication.” Ideally that doesn’t happen, but it could. So, in that instance, I would get a sleep deprived EEG or I might get an ambulatory EEG so that over 24-48 hours, I can see that waking, drowsy sleep rhythmicity and see what’s going on.

If the individual still has seizures or the EEGs are unhelpful, then I will have the person come into the epilepsy monitoring unit. The place in the hospital where the healthiest people are, and we bring them in, it’s the one time in your life we want you to have a seizure, so we crash the person off their medications, sleep deprive them every other night, and ideally record a seizure.

That being said, in children there are many genetic forms of epilepsy which may appear in childhood and be outgrown later in life. In this case, serial EEGs are necessary to identify that progression.

Regarding the rhythms you showed at the end of the presentation, are those patterns in patients with epilepsy only or do healthy patients have similar multi-day rhythms?

There will be an element of speculation to my answer because we don’t know. But I don’t think it’s too much of a leap of faith to say that multi-day variation, the diurnal variation we tend to see in seizures,  is being driven by a rhythm that is intrinsic to the brain itself. So in essence, the likelihood is that, seizures or no seizures, epilepsy or no epilepsy, we all have those rhythms. How they manifest though is difficult to say unless you have seizures.

Can you explain the subclinical seizures and EEG signatures called PLEDs, burst, and birds? This is a very detailed question about these different signatures.

Seizures are typically divided into “generalized seizures,” in which one second the brain is fine and then the next second both hemispheres are seizing, and “focal seizures,” in which seizures begin in a specific area of the brain. You’ve probably heard this notion that we only use ten percent of our brain. If we could use 90% we could do telekinesis, we could do whatever. Who knows, maybe people could develop telekinesis, I wouldn’t know. But I do know that we use our entire brains. A PET scan will light up the glucose metabolism the brain cells that are working, and we know that the whole brain lights up.

We’re using all of our brain, but we can only define what 10% of the brain does. When I do brain mapping on someone in anticipation of epilepsy surgery, in 90% of the parts of the brain I map, I can’t identify anything that happens when I stimulate it. Further, the person with epilepsy cannot identify that I’ve done anything. So, 10% of the brain is what we call “eloquent.”

If you have a seizure in eloquent cortex, it’s going to cause a symptom. If you have a seizure in a part of the brain that activates if you heard an oncoming train, then your seizure will cause an auditory hallucination of an oncoming train. But for other 90% of the brain, if the seizure starts there and stays focally there, then there’s a reasonable chance you’re going to have no symptoms. We would call that a “subclinical seizure.” In this case, we can see it on the EEG, particularly if we’re recording from directly within the brain itself. A seizure is happening, but it is subclinical – it’s causing no symptoms.

With PLEDs or LPEDs – we change the name sometimes but it’s the same phenomenon – this is a sign of an excited brain. If either some badness happens to the brain, a stroke for instance, then the area around the stroke will have excessive excitability. Or, if someone has known epilepsy and they go into status epilepticus – one seizure after another after another – the excitability of the brain really goes up in that area. The end result of this happening is that the brain keeps pushing toward a seizure, causing a burst of activity that shuts down that part of the brain for a second as it recovers, and then it happens again, boom, and then it shuts it down, and then boom…. Seizures during status epilepticus are periodic, like a metronome: fires, fires, fires, fires, it’s lateralized, it’s over one half of the brain, epileptic form discharges. So these are boom, boom, boom. This state is highly epileptogenic, but it is transient. So once you correct whatever is the underlying issue, it should resolve.

Bursts are a more descriptive term. In that case the brain is going about its business, then there’s a burst of activity, kind of like we saw earlier in my presentation where it’s burst, suppression, burst, suppression. So that is a descriptive term applied to any sudden outpouring of electrical activity within the brain. We will see bursts in a broad array of clinical situations from burst suppression to various epileptic or epilepsy related phenomena, and they are in essence this large outpouring of synchronous brain activity.

And then the final term, birds, has been applied in a few ways, but these are these brief, rhythmic discharges that are not quite seizures, but show a strong tendency towards seizures. This is a term most commonly used in neonatal EEGs. In adults, I see the brain waves going along, I see a burst of activity, looks like a spike, we call it a spike.

In the neonatal brain, development is happening really fast. Newborns get these spikes all the time and they can be normal. To differentiate abnormal bursts of activity, we use various terms to describe he specific kinds of spikes. If you see those spikes but they’re rhythmic and they last a certain period of time, then that is more worrisome for seizures. So that is most commonly how birds are used.

How sensitive are ambulatory EEGs? Is there a difference in the ability to pick up seizures between ambulatory versus in patient monitoring?

Ambulatory is more sensitive than a routine EEG. A routine EEG lasts 20 to 30 minutes. What are the odds that we’re going to pick up some abnormality in 20 to 30 minutes? It depends how active someone’s seizures are. If they’re having a seizure every five minutes, we’ll probably pick it up in a 30 minute EEG. Most people, however, are not having seizures as often as that. Most people have more widely dispersed seizures and therefore, by extension, more widely dispersed abnormal bursts of activity associated with seizures.

The longer we can record an EEG, the greater our likelihood of coming up with an answer to better inform our treatment options. A 20 to 30 minute EEG gives us some information. A 24 hour EEG gives us much more information, because we see those brainwaves in wakefulness, drowsiness, stages one, two, three, four, and REM sleep. The next step is being admitted to the epilepsy monitoring unit. If you go into an epilepsy monitoring unit and there are no medication changes made, you might as well have it done at home, because you’re less restricted at home.

But typically what we do in the epilepsy monitoring unit is evaluate situations when the ambulatory EEG didn’t give us the answers we needed. The in-patient epilepsy monitoring unit EEG allows us to take you off of medications, not necessarily to induce a seizure, but to remove your protection from seizures, so that we can record an actual seizure. That would be dangerous to do in many situations at home because there are risks of having multiple seizures. You could go into status epilepticus, you could (god forbid) have Sudden Unexpected Death from Epilepsy – it’s a scary situation. But in the hospital, it’s a monitored situation. An EEG tech is watching the screen 24-7 and when a seizure happens, they push a button, nurses come running, and they give medications to abort the seizure.

That’s the main difference – for an ambulatory EEG you’re probably on medication, and in the epilepsy monitoring unit we’re taking away the medication.

How do I know if my doctor knows the latest information about performing an EEG? Are there any questions I can ask?

I would ask if they have done an EEG or epilepsy fellowship. When someone goes into training in neurology, they do their internship right out of medical school. During that time, they get some basic training and learn more about treating patients with various maladies. Then they do a neurology residency, and focus on just brain-, spinal cord-, nerve-, and muscle-related issues. Part of that training is learning some basics of EEG, and learning the basics of taking care of a broad range of issues from Parkinson’s disease to tremors, to peripheral neuropathy to epilepsy.

Typically after someone develops seizures they will start with seeing a neurologist. And frankly, the majority of people do very well with seeing a neurologist. If, however, a person continues to have seizures, then it is time to move it up a notch. And that next notch takes the form of neurologists who did extra training for one or two years in either clinical neurophysiology, EEG, or in epilepsy (which also includes an EEG component). That by itself means that person is going to have a greater level of comfort and more in-depth knowledge of seizures and epilepsy.

In addition, you can check if your provider is board certified. Board certification will establish that a person has a minimal amount of knowledge. It doesn’t say that they’re the greatest thing since skim milk, but it assures to some degree a minimum level of competence. I tend to check if my doctor is board certified in the area in which I am seeking their opinion. That being said, some of the best epileptologists I know have never taken a board exam. Because you don’t have to take a board exam to practice in epilepsy.

If your seizures are well controlled, and by well controlled I mean you are seizure free, then your general neurologist is more than adequately capable of taking care of you. If you are still having seizures – once a month, a week, a day, a year – and adjustments are not effective, then it is time to seek the opinion of a specialist, who has done that extra training.

If that doesn’t work out, you kick it up a notch and you see someone who is in an NAEC level four epilepsy center. So that’s the National Association of Epilepsy Centers. They have a certification process whereby they evaluate who the epileptologists are, the neuropsychologists, the nurse practitioners, the entire epilepsy team, and determine if they have all of the credentials that indicate them to be highly competent in their field. If they do, those individuals will get a level three or level four (the highest level) designation. And if you’re having ongoing seizures and have tried multiple approaches, then ultimately you want to end up at an NAEC level four center.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Rescue Medication Delivery Methods and Future Therapies

Seizures can be both unpredictable and unrelenting. When a seizure becomes an emergency, rescue medications provide immediate relief and help prevent the need for emergency care. While existing therapies do stop these epilepsy emergencies in many patients, some are still searching for an option that works for them.

In the second part of this two-part webinar series, gain insight from Dr. Nathan Fountain of the University of Virginia on how different rescue medications can be administered, promising research, and what rescue therapies are currently in the pipeline. His presentation includes a look at the rescue medication pipeline and the new delivery methods which may become available to patients.

Dr. Nathan Fountain, Professor of Neurology and the Director of the Comprehensive Epilepsy Program at the University of Virginia.

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Audience Q&A with Dr. Fountain

Dr. Nathan FountainIs there any reason not to use Diastat before a seizure in a child who has been seizing for five minutes? And if so, how long should you wait?

There are exceptions to every single rule. As a general principle, if you’ve been prescribed rectal diazepam gel to stop seizures, and you have – let’s say – a child who’s been seizing for five minutes, there’d be few situations in which you wouldn’t give them the rectal diazepam gel. There’s a safety concern, and there’s a treatment concern in this circumstance.

The safety concern is; imagine that you’ve already given the child other benzodiazepines, let’s say clonazepam or lorazepam, or even diazepam in a pill form an hour ago. And so, it’s already in their blood. You might be hesitant to give them more without any kind of supervision. But as a general principle, we give rescue medications and tell them, “If you actually time a seizure, five minutes is a really long time.” We do this in the epilepsy monitoring unit. We admit people to the hospital and observe their seizures to figure out where they’re coming from and so forth.

A common exercise is to ask people when we watched the seizure on the video, “How long was that?” And they almost always say, “Oh, that was five minutes.” But you know what? It’s almost always under 90 seconds – a minute and a half. The point: while you’re watching someone seize for five minutes, it’s kind of forever, especially the big convulsive seizure. For convulsive seizures or medically serious seizures, you might say, usually we would advise giving the medicine after five minutes of seizure activity.

Now, if it’s a non convulsive seizure, or if you’re not sure it’s a seizure, that’s a different situation. I suppose we could imagine a situation where you wouldn’t give them medicine. It was in five minutes because it’s a non-convulsive seizure and you think it’s not causing any harm. Let’s say it’s just a staring seizure, an absence seizure. It is unusual to have one for more than five minutes, but there are specific situations when you might. Or if you’re not sure that it’s a seizure, so if you haven’t figured that out yet, then maybe it would be okay to not give the medicine if it’s something, as in, convulsive activity.

Are there any reasons to administer rescue medications to individuals who have one tonic clonic seizure without a cluster?

That goes back to really defining what it means to have a cluster. As a casual observation, we can easily make the statement, “Sure. Give the medicine to prevent the next seizure.” But if you think about this in detail as the FDA does when they think about exactly what the medicine is used for, this starts with a careful history to determine what is a typical seizure for that individual.

If that individual has big convulsive grand mal or generalized tonic clonic seizures typically lasting three minutes, but they suddenly have three in one day or even twice in one day and you want to prevent the next seizure. Usually you’d let that seizure complete because it would almost take three minutes just to administer whatever you’re going to administer. Typically, we’d let that seizure complete itself, then give whatever medicine is appropriate to prevent the next seizure.

I’m glad that question was asked because in general, we wouldn’t treat an acute seizure unless it lasted more longer than usual or more than five minutes. Now, as I said, five minutes is a long time. By three minutes, everybody’s getting all excited and getting ready to do something – call the rescue squad or given a board of therapy or do something – because it will take your five minutes to figure all that out. But for most people with epilepsy, they don’t have a seizure that lasts longer than three minutes. In fact, if you measure it, it’s usually less than 90 seconds and a half.

If you define the typical seizures as less than five minutes, we typically wouldn’t recommend the currently available abortive therapies. Maybe that’ll change. Maybe if it turns out intranasal medications really worked very quickly and are very effective and maybe we’ll get for ongoing seizures, but at the moment we would say no.

Do you have any suggestions for rescue therapies in children younger than two,  because the FDA approved cutoff for Diastat is two years old.

That’s a situation where you really need to talk to your doctor. There are alternatives. Everyone gets nervous when treating young children. When they’re less than two, it gets a little complicated because the dosing changes as well as the method of administration.

I’d say talk to your doctor about that. For a prolonged seizure in those who are less than two years old, we have the same concerns that we have in those older than two. Although the medications are only approved down to a certain age, doctors can use them in different situations. For example, the IV form of midazolam is definitely not approved to be blown up the nose until now. Still the IV form is not, but yet we would use that in certain situations when we knew the details warranted it. Being less than two, you could still use rectal Diastat for instance, or could use some other form.

Talk to your doctor about that and what might be best in that particular situation.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

A doctor goes over medical information with his patient.

Webinar: Epilepsy Emergencies and Current Rescue Medications

Seizures can be both unpredictable and unrelenting. When a seizure becomes an emergency, rescue medications provide immediate relief and help prevent the need for emergency care. While existing therapies do stop these epilepsy emergencies in many patients, some are still searching for an option that works for them.

In this webinar, Dr. Kamil Detyniecki of the University of Miami provides an overview of the different types of seizure emergencies, while also discussing the currently available rescue medications.

View our follow-up webinar on the latest advances in rescue medications.

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Dr. Kamil DetynieckiAre these medications combined with other treatments or solo treatments?

These medications are not supposed to replace the daily antiepileptic medications that you take. These are only to be used in situations of emergencies. When you are prescribed a rescue therapy, you continue taking your daily medications. Rescue meds are extra protection in case of a situation that requires treatment.

Are there differences in effectiveness between the different delivery methods of rescue medications such as buccal or nasal or…

The important thing is that these medications get to the system as fast as possible. There are not good studies comparing one to another, because it’s very hard to make a study like that unbiased and blinded (a blinded study is one in which the participants don’t know if they are taking a placebo or not). But there have been some studies comparing rectal diazepam with nasal midazolam, and they seem to be compatible.

During your presentation, you mentioned the side effects of some of the rescue medications. Does delivery method affect these side effects?

Yes, absolutely. So as I mentioned, the nasal administration has the potential for irritation in the nose. That’s one type of side effect. In addition, medications have different half lives, which means they may stay in your system for different lengths of time. For example, diazepam stays in your system longer. After taking it, the effect of sedation may last for a longer time than midazolam. In some patients this may be beneficial, because there maybe longer lasting protection. So one may be better for one patient then versus others.

Is current research suggesting that rescue medications, such as Nayzilam, will be effective?

Yeah, absolutely. For the nasal midazolam, there was a large, multicenter study comparing this medication with placebo. This study showed that the nasal midazolam was much more effective than using the dummy medication. That’s what we use and that’s what the FDA used to approve this medication.

When is a patient considered to be in status epilepticus? Does the length of time vary between children and adults?

Definitions have this problem that they’re never perfect and this is what we have right now. And I think that, again, in terms of when to treat, it’s different. One definition may say that status epilepticus is five minutes, but this doesn’t mean that we need to wait five minutes in order to start treatment.

That is what has been shown based on animal and human data; if a seizure goes for five minutes or longer, there’s a less likelihood that it will stop on its own. For some patients, if a seizure is one, two minutes long, it may be too long for them. Every patient is different, but not aware of any that we’re changing that definition.

What would you say to say school teachers or school personnel who refuse to administer a rectal medications?

There’s been a lot of debate about having the school administer those medications. I think that the problem with the rectal administration maybe resolved now that we have nasal. Again, rectal is troublesome in patients’ privacy. But now that we have the option of nasal, hopefully that won’t be a problem.

Can diastat be given twice at one time if the seizures persist after the first dose ? Or do you have to wait a certain period of time between doses?

Typically the dose is calculated by weight. There is a possibility of giving another dose, but I would normally wait at least 10 minutes or more to know if the first dose had an effect. We have to always assess whether the patient may be overly sedated, having any difficulty breathing, etc. But those discussions about the dose need to be specifically addressed with with the neurologist. I can’t give you an answer for everyone.

But to answer shortly. Yes. In some patients, we can.

Is there an average length for how long it takes a rescue medication to take effect?

Yes. And really it depends on the type of rescue medications. Oral medications can take much longer. That’s why we’re so excited to have different routes of administration. If you swallow a pill, it may take 20 minutes or more to start working. A convulsion going on for a long time, it’s unacceptable.

Nasal may work as fast as 10 minutes, and there are new medications that are being searched in and are being researched that may work even faster as fast as IV. So there’s different times depending on the type on the medication and the route of administration. But the fastest we have right now are the rectal and the nasal.

What are the differences between Versed and Nayzilam?

The active compound is the same. Versed is the brand name of midazolam, which is the same compound which in this brand name Nayzilam. The main difference is that when you use the off label midazolam, like I showed this picture of this young kid getting the Versed with a syringe or a spray. That is because we’re using a product that is being developed for IV, it’s very diluted. You need to use much more volume or much more amount of liquid that it actually doesn’t all get absorbed in the drips behind the nose, so it’s not ideal.

This product that was FDA approved, Nayzilam, is a much smaller concentration, so it’s just one dose, and so that is an improvement compared to the off label, but the actual medication that is being used is the same.

If you can use the nasal spray to stop a seizure and it’s not effective, can you switch rescue medications and give Diastat?

These are great questions and that’s why it’s important to have a rescue plan. Every rescue plan needs to have an option. What if the rescue medication doesn’t work? When can you use another dose, should you call 911… Again, this is not an answer for everyone, and it really depends on the age of the patient and the dose that is to be given.

Using different types of rescue medication at the same time is possible, but it’s unusual. There are rescue medications that you can repeat after five or 10 minutes. It’s not that commonly used but it’s possible. But this is something that should be discussed and patients should ask that of their neurologist.

Again important to have a rescue plan where we discuss these situations… what to do with one medication doesn’t work. Can I use a second dose? When should I call 911? And so on.

If a patient already has a benzo, such as Onfi, as part of their daily AED regime, are the rescue meds effected?

The good answer is: it’s possible. There’s a phenomenon of tolerance to benzodiazepines, and so if a patient is on Onfi or clobazam, it’s possible that they may require a higher dose of rescue medication.

And this is something that is going to need more research for the newer medications. For the new medication, Nayzilam, the patients in the study were not allowed to be on benzodiazepines. And so we need more information about it. It’s definitely not a contraindication, but it may be that the patients may notice that they may require a higher dose.

Are there resources available for school personnel or other professionals on how to use rescue medications? 

I think that the Epilepsy Foundation is a great resource. They have examples of rescue medication plans.

Are there sublingual rescue medications that would work more quickly than a pill?

People are using lorazepam or clonazepam buccally or sublingually. I think the exact absorption has not been studied as well, but there’s a potential that it works faster than swallowing the pill. Although many of these pills are not meant to be used sublingually, so they may not dissolve as fast.

There are companies trying to develop different products, for example, a film that goes into the cheek to get absorbed faster. It’s an active area of research looking for different routes of administration.

For a child who has had a history of refractory epilepticus, when would it be ideal to administer the rescue medications or call 911? This person in particular is not comfortable waiting five minutes.

So, the answer is right there. If you’re not comfortable waiting five minutes, you shouldn’t do that. There is not an answer for everyone. And that’s why I continue to mention that which rescue medication you use, when to administer it, etc. should be a decision between the patient, caregiver, and the doctor depending on the user’s seizures, what kind of seizures they have.

For example, you may be willing to wait longer if you’re having a focal motor seizure, which is a seizure where you have, for example, motor activity without loss of awareness. These seizures can go on for several minutes without causing any significant harm to the patient, but a tonic-clonic seizure going on for four or five minutes, it can be potentially a concern.

The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.