Webinar: Mental Health & Childhood Epilepsy

Mental health and behavioral problems are just a few of the concerns that can affect children with epilepsy and these can vary greatly from one child to the next. While some people with epilepsy experience few if any mental health issues, others may suffer debilitating problems of inattention, anxiety, or mood disorders. It is important for parents and health care professionals alike to address these concerns early in their diagnosis as this can have a big impact on the quality of life for both the patient and their support system.

This webinar will cover:

  • Prevalence of mental health conditions in children and youth with epilepsy compared to the general population and peers with other chronic medical conditions
  • Risk factors associated with co-occurrence of epilepsy and mental health conditions
  • Importance and process of monitoring, evaluation, and management of mental health concurrently with epilepsy
  • Treatment approach using evidence-based mental health interventions


Technology support for the CURE Epilepsy Webinar Series is provided by Cisco Systems, Inc.


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About the Speaker:
Dr. Clemente Vega is a board-certified clinical neuropsychologist and a certified subspecialist in pediatric neuropsychology. He is employed in the Epilepsy Center at Boston Children’s Hospital with clinical and academic efforts that focus on pediatric epilepsy syndromes, neurosurgical outcomes, and cross-cultural application of neuropsychological assessment. He is also an Instructor of Psychology in the Department of Psychiatry at the Harvard Medical School. Dr. Vega also practices as a consultant in criminal and civil forensic neuropsychology, public schools, and the Boston Red Sox.

Q&A with Dr. Clemente Vega

Can you briefly explain what ODD (oppositional defiant disorder) is?

It’s essentially the difficulty following rules, and just adhering to the structure in the environment. It’s essentially a child, or adolescent who does not have problems respecting authority, does not follow rules, breaks the rules on purpose, and presents with this type of behavior for at least six months, or more. And they seem to essentially also engage in other types of less socially appropriate behaviors like lying, or deceiving others, stealing, and so on.

The studies will show that it can range the prevalence [of ODD in children with epilepsy] is anywhere between five, and 20%. It often co-occurs with other inhibitory condition, other conditions that present with difficulties with inhibition like ADHD, and it can also be a transient side effect of medication. So, sometimes medications that cause aggression for example, or cause a lot of frustration, difficulties with frustration tolerance. The way that presents in the environment is a child who just doesn’t follow rules, breaks the rules, doesn’t want to do what they’re being told to do, whether it’s at home, or at school. So, generally, studies will be as high as 20%, some as low as 5%. I think most of the meta-analysis will put it on the lower end. It’s not as common as depression, anxiety, and ADHD.

It’s really important to talk about the side effects of medication with the physician, and as you mentioned, some have negative side effects, and some have more mood supporting side effects, right??

Yes, and it’s very important for me to mention that I’m not trying to talk about the medicines in a negative light. I think it’s important to keep in mind that the medicine’s goal is to try to control the seizures as best as possible, and having more seizures is going to have a worse long-term effect on mood, anxiety, ADHD, and academic performance if they’re experiencing some cognitive side effects related to the medicine. So, the side effects of the meds sometimes are present, but they are less to a degree compared to how those same symptoms may present when the seizures are happening more often. There is a tipping point where the severity of the side effects, and the benefits therapeutically of the medicine from a seizure control perspective may not make sense for that particular individual. So, trying other type of meds may be a better option.

This is often seen for example in a medicine like Keppra, which does great, in terms of controlling seizures in a ton of in to ton of patients that have both generalized, and focal seizures but can present with side effects of irritability, negative mood, and some aggressive behavior. So, maybe that is [inaudible 00:35:57] Some people only have that in the beginning, or the first few weeks of the medicine. Some people actually get… They don’t go away. So, that’s something I like to mention. I also think it’s important for all of us when we are starting medicine to get a general sense of behavioral presentation in the weeks, to a month leading up to the beginning of the med, and the first four to six weeks after starting the meds, and then the next couple of months after. Because it all kind of blends together the frequency, and severity of behavioral side effects of meds, or cognitive side effects of meds with the difficulties that were there before the med was introduced, because they’re just part of the epilepsy.

They’re having a lot of seizures, or the disruption in sleep, or some of the other changes that are associated with the medical condition that may be there with, or without that particular medicine. So, having a, I’m not necessarily promoting journaling on a daily basis, but maybe on a week to week sitting down, and trying to get a sense of the presence of some of these mental health symptoms such as anxiety, depression, irritability, difficulties with attention, and problems in school. So, we can track little bit before meds in the beginning of the meds, and after the person has reached the therapeutic level of the meds maybe four to six weeks afterwards.

Are there any genetic epilepsies more at risk for psychosis?

I’m not familiar with any particular genetic conditions increasing the risk for psychosis. I can say, generally speaking, in the psychology world, we understand that psychosis is found more in populations that have neurocognitive impairment for example, and also in populations that have a family history. So, perhaps not necessarily, maybe it’s there, and I’m just not familiar with it in terms of genetic conditions increasing the risk of psychosis. But we do know that genetic conditions also increase the risk of neurocognitive impairment compared to epilepsies that have a different type of etiology. And it may just be the multiple factors that are associated with the genetic epilepsies that increase the risk of psychosis if it’s something that the person asking the question has been finding, or is familiar with, or something that makes sense to them. But to date, I haven’t come across any literature that has presented that as a risk factor.

A viewer has heard that stimulants are not as effective with SCN 1A epilepsy. Would that be true? Do you know?

So, I don’t know about SCN1A, and stimulants specifically, but I do know that stimulants tend to be less well tolerated in some populations with epilepsy. SCN1A is a condition that usually comes with a lot of other situations. They tend to have a lot of medicine, because the seizures are hard to control, and in my experience a lot of my patients that have neurological conditions, whether it’s epilepsy, or something else, have a higher risk of having side effects of any medicine that they are taking. So, stimulants are known to have side effects, and the population may just be much more at risk of having side effects. The problem with stimulants sometimes it’s not that they don’t help the cognitive aspect of the person, it’s not that they’re not helping attention, it’s that we can’t reach the therapeutic dose without having significant side effects such as irritability, depression, and difficulty sleeping, and appetite.

I also have worked with folks that spend a lot of their research career with populations that have autism, which is known to occur more frequently in genetic epilepsies that have SCN1A mutations, and their practice tends to be used more non-stimulant medication before stimulant medications like Stratera for example, because it’s much better tolerated, and they can reach therapeutic levels compared to what type of efficacy they can have with the stimulant meds. But I haven’t come across specifically research with SCN1A, but it would make sense to me if somebody publishes that, why that would be a problem.

Are there ways for parents to screen for mental health, and needs in younger children like toddler, pre preschool-aged children?

That’s a challenge for an anybody, even parents that don’t have children with… Whose children do not have epilepsy. It’s most of the studies that look at general populations age when depression, and anxiety begins to actually present, when certain states have looked at this for example, and they estimate that anxiety, and depression really begin to emerge more between the ages of eight, and nine years old. So, ADHD presents more often between the ages of five, and six, but we hesitate to diagnose, or to talk about someone who’s presenting very sad as being depressed when they are young like a toddler, or even a preschool-aged kid, or kindergarten age kid. Similarly, we are very hesitant to start thinking about ADHD in a toddler, or someone who’s even three, or four years old, because in my experience most toddlers have a lot of difficulties paying attention, and they have a lot of hyperactivity.

So, it’s very challenging to differentiate what is a clinical mental health condition versus just kind of normal brain in that young age. That being said, I will always recommend the parents of any age, of kids with any age to just monitoring change in their behavior over a course of on a week to week basis. Any of our kids can be a little bit more irritable, a little bit more sad, or a little bit more anxious, or different in their behavior presentation from one day to another. Kids are very sensitive to changes in their schedule, in their sleep patterns, in their nutrition, and we may just be seeing a transient change in behavior as a result of some of these environmental variables. But if we start measuring on a week to week, a change that seems to be a little bit more there between one week, or another week, and really notice a change that we can compare to what was going on the month before, or the month before that, that’s how we can start really identifying the potential presence of anxiety, depression, or sadness in children that are younger like toddlers, and kindergarten.

The studies also say, also show us that anxiety, and depression may present very differently at that young age compared to how it presents in middle childhood, or even as we get into adolescents, and in adulthood, they tend to, for example, in anxiety tends to present more as mutism, or social isolation when they’re really young. If they’re in school, they stop playing, they stop talking, they stop interacting with others. Mood changes may present much more as irritability, and crying, but not necessarily verbalizing that they’re feeling a particular way. And also changes in their kind of basic physiological activity like changes in sleep patterns, changes in appetite. Those may also be more signs to be on the lookout for with younger kids that are three, four when we are trying to make sure that the anxiety, or mood are not being affected by whatever is happening, whether it’s a condition, or changes in their treatment.

For absence seizures, would mental health issues lessen if the child were to grow out of these types of seizures?

Unfortunately, the answer to that depends on that particular person. So, there is evidence that the curing the seizure, or outgrowing the syndrome does not always predict the resolution of a mental health condition. And they’ve done these kinds of studies in Canada where they look at folks that have these pediatric conditions, and trying to predict based on seizure control, or seizure severity whether the mental health condition will be benefited, or they outgrow it. And what they found is that there’s very little way, there’s no way to actually predict it. Some people get better, and some people don’t. And we are still trying to figure out what may be some variables that can differentiate that. Is it the family history, that maybe predisposes some folks to have depression, or ADHD regardless of the presence of absence epilepsy? Is it environmental factors, or something else?

So, I would say that there is a subset of children, and youth with epilepsy that experience these mental health conditions as a consequence of their epilepsy that the effects that it has on their academics, or their quality of life is impacting them to the extent that it is increasing their anxiety, and their feelings of sadness, and depression, and honestly as a human being that makes perfect sense to me. Oftentimes, I think my patients are so resilient, and so strong because they don’t present with the degree of anxiety, and depression, and other symptoms that I think would be a total normal response to having to deal with a medical condition like this.

And folks that are having this sort of direct response to the changes that they experience as a result of the condition, we would expect a lot of improvement as they outgrow the condition like absence epilepsy, and whatever contribution may be there with the meds to their mental health that won’t be there anymore if they’re [inaudible 00:47:32] not taking meds. But there might still be an underlying biological process that is really contributing to their mental health that will be present, whether the seizures are still there, or not as they transition into adolescents, and adulthood.

Are there any books that you would recommend for mental health, ADHD, epilepsy on how parents can do CBT (cognitive behavioral therapy)? What we know it’s that while this seems to be an available treatment for adults, in some areas it’s really hard to actually get access to a psychologist for children. So, are there programs that you would recommend, or books to support people in areas of our country where there don’t have easy access to specialists who know how to do CBT?

Yeah, so for ADHD first, there are a few books that were written for parents that I always find very helpful, and I recommend often. Maybe not for ADHD primarily, but for the symptoms of ADHD, which are frequently just executive dysfunction problems, just getting their task organized, planning, and problem solving. And there’s a book that is called Smart but Scattered, there’s version for younger children. There’s a version for adolescents, and there are a version for young adults. Again, the book is called Smart but Scattered, and it was written by neuropsychologists who do a lot of work in ADHD, and it’s essentially a parent guide. There are books on mindfulness, and on behavioral therapy that may also be available. There’s a lot of these, I don’t think I recommend one over the other. I would say a few things. Hopefully, now, as we are transitioning to more telemedicine availability, then people can have more access to mental health services compared to where we were before telemedicine became so normal.

So, that may increase access a bit. The other thing is that the providers who don’t specialize in kids may be okay under certain circumstances. It’s really hard to find someone who is a specialist in mental health that matches all of the needs of one particular patient that I work with who knows epilepsy well, and also knows anxiety, and also knows anxiety in this particular [inaudible 00:50:38] adolescent female that’s 15 as an example. So, I tend to create a bit of a decision trait, because of the treatment that I’m referring for is the mental health condition, an anxiety specialist with good training is able to translate their work into epilepsy if they don’t have a lot of work with children, and youth that have epilepsy, and may be able to adjust what they do. Someone with experience with adolescent may be able to work with a high functioning 10, or 11 year old, for example.

When it’s younger kids, CBT may not actually be as helpful. It may be more helpful to do parent type of therapy that may be more accessible in the community, or something that can be managed with a multidisciplinary team like the school, and counselors along with the parents, and some of the physician providers. I can probably go back into my library, and look for some of these CBT specific books that may be very helpful, and answer that question more specifically, but I can’t think of a specific book off the top of my mind for that one.

We’ve talked a little bit about Keppra, and its impact on mood. One question we have here is about phenobarbital. Do you know if it changes aggression, or mental health has an impact?

Well, I know that phenobarbital has cognitive effects, and it’s associated with slowing processing speed, difficulties concentrating, and can cause fatigue. These can certainly have an effect on mood. As I mentioned earlier, if we are fatigued at any point, or for any reason, we’re going to have more difficulty modulating our feelings, and our emotions, and maybe more anxious if we have cognitive effects, and have difficulty keeping up with what is expected of us on a regular basis, that’s going to make us more anxious, and it’s going to impact our mood as well. I’m not familiar with a lot of studies looking at higher rates of depression, or irritability in patients that are prescribed phenobarbital.

We tend to see more of a cognitive effective profile in that particular medication as opposed to more of a mood, or anxiety profile in that medication. But I think it’s important to always keep in mind that anybody can have any kind of side effects with these medicines, because our brains are so different that we know of some side effects that may present more often than not, but that doesn’t negate the potential of other side effects, or any side effects being there with any medication.

A question about cognitive behavioral therapy (CBT), and would it be recommended when adolescents also have cognitive regression?

So, I guess that may depend on the degree of regression, but if the question is related to an adolescent that may have some pretty significant cognitive difficulties, or maybe not to the degree of an intellectual disability, but certainly having a lot of difficulty keeping up with the expectation academically, or otherwise in their day-to-day. So, they’re certainly not functioning at the level of their age, and maybe a few years behind. CBT may be much more challenging, or ineffective in someone who they can’t process the information at a cognitive level, and it’s a lot more reflective, or maybe is more immature in their behavioral presentation. So, behavioral therapy that is less cognitive, but more based on reinforcements, rewards for behavior, and designing more of a behavioral treatment plan that is similar to what we would do for someone who’s younger, like a eight year old, nine year old, 10 year old, that may be much more effective for treatments compared to cognitive behavioral therapy.

If it’s an adolescent with cognitive aggression that is presenting with more of the anxiety depression, there are other treatment options that may be better, like DBT (dialectical behavioral therapy) has been shown to be effective in adolescents for treatment of depression, and anxiety, and it’s a lot more on the here, and now type of behavior management as opposed to changing our cognitive thinking, or our patterns of negative thinking over the course of six months. That may be very challenging. Someone to make the slow gains if they have cognitive progression, and they may just need more of a here, and now type of approach for management like DBT can present, or other forms of behavioral therapy.

a lime green ribbon with the text "Mental Health Awareness Month"

Mental Health Awareness Month

May is Mental Health Awareness Month, an opportunity for the epilepsy community to raise awareness and challenge stigma about mental health concerns specific to people with epilepsy.

One-third of people with epilepsy suffer from some form of psychiatric disorder. While some may experience few mental health issues, others may suffer debilitating problems of anxiety, depression, or mood disorders.

A Seizing Life® episode, pediatric neuropsychologist Dr. Madison Berl speaks about some of the mental health challenges facing people with epilepsy, what to look out for, and available treatment and therapeutic approaches.


This webinar with Dr. Clemente Vega covers the prevalence of mental health conditions in children and youth with epilepsy compared to the general population and peers with other chronic medical conditions, risk factors associated with co-occurrence of epilepsy and mental health conditions, the importance and process of monitoring, evaluation, and management of mental health concurrently with epilepsy, and more.


This webinar discusses how anxiety and depression in people with epilepsy negatively impact their quality of life, reduce tolerance of antiepileptic medications, and increase the risk of suicidal ideation and behavior. The presentation also reviews how stress impacts epileptic seizures and offers strategies patients can use to better cope with stress.


This webinar discusses the prevalence of anxiety and depression among people with epilepsy. Viewers will learn how anxiety and depression impact people with epilepsy in different ways, and that neurologists often have multiple tools at their disposal to help alleviate these psychiatric symptoms. In some cases, the treatment of these symptoms may influence the treatment of the seizures themselves. 


In this episode of Seizing Life, explore the psychological impacts of epilepsy that can result in mood disorders, like depression and anxiety with Dr. Kanner, Director of the International Comprehensive Epilepsy Center and Chief of Epilepsy Division at the University of Miami, Miller School of Medicine. He discusses the importance of considering the psychological impacts of an epilepsy diagnosis on both patients and families. Dr. Kanner recommends that physicians take a patient’s full personal and family psychiatric history during the initial diagnosis and outlines how that information should be utilized in treating the patient.

Webinar: Mental Health & Epilepsy: Improving Quality of Life

Mental health is among the many issues that can affect both children and adults living with epilepsy. While some people may experience few mental health issues, others may suffer debilitating problems of anxiety, depression, or mood disorders. It is imperative that clinicians address and treat these psychiatric symptoms early in the individual’s epilepsy journey to reduce the negative consequences they might have on the long-term quality of life. In fact, many clinicians and patients agree that treating anxiety and depression may help improve the quality of life for people with epilepsy more than reducing seizures.  

This webinar will discuss the prevalence of anxiety and depression among people with epilepsy. Viewers will learn how anxiety and depression impact people with epilepsy in different ways, and that neurologists often have multiple tools at their disposal to help alleviate these psychiatric symptoms. In some cases, the treatment of these symptoms may influence the treatment of the seizures themselves. 

The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.  

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About the Speaker:
Dr. Heidi Munger Clary is an Associate Professor and Epilepsy Fellowship Director at Wake Forest School of Medicine. She is an adult epileptologist whose research focuses on anxiety and depression in epilepsy. The overarching goal of her work is to develop and test strategies for neurology clinic-based action to close the screening, treatment, and outcome gaps for these impactful comorbidities. Dr. Munger Clary is Chair of the American Epilepsy Society Psychosocial Comorbidities Special Interest Group, Chair of the American Academy of Neurology Epilepsy Quality Measurement Workgroup, and Co-Chair of the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy’s Psychiatry Commission.


Q&A with Dr. Heidi Munger Clary

What are recommendations for dealing with anxiety and depression in non-verbal children?

So this is a great question, and this is a really challenging area because a lot of the work that we’ve been doing to try to address it has neglected this area. So, one of the things that needs to happen is we really do need a lot more focus and attention to this area. Now, one of the things that I have heard that can be very helpful in terms of tips from pediatric psychologists is really observing the behavior of the patient. Listening to the family, what is their intuition about how that person is doing? And then trying treatment approaches. I think it’s a real challenging area. Opening a dialogue with the neurologist can be a starting point. But it may really be that for individuals like this, if there’s a specialty clinic focused on neurobehavioral care or care of individuals with behavioral issues and developmental delay, that setting might address those patients’ needs even in an even more robust way. I will say for myself being a neurologist in practice, really trying to address these kinds of topics in a better way over time, we at our center, we’re lucky to have this excellent neuro behavioral clinic.

And I do find that once I run out of some options for potentially optimizing the seizure medications for behavioral effects, thinking about maybe a very commonly prescribed medication, sometimes an SSRI is worth considering. But getting those patients to the specialized care, I think right now is the best thing to do because this is not an area that the neurologists are really well equipped to start managing themselves, but starting the dialogue and getting the referrals and finding those resources in the community that are appropriate, I think, is the most important thing for it right now.

Can you share more about the correlation between hormonal issues and seizures?

I’m trying to think about how to focus it in the mental health area, but one of the things we commonly see in day-to-day epilepsy practices that sometimes seizures are related to the menstrual cycle in terms of the timing of seizures. This may also impact behavioral symptoms as well. I’m trying to think about what the best way to focus this response would be. But if one of the questions is a concern about seizures and hormones, doing some careful tracking of hormonal cycle related changes, whether it be the menstrual cycle or even treatment changes that might affect hormones and seizure frequency can be helpful. In terms of the way I alluded to hormones within the brain, potentially being related to mental health issues, that’s an area that’s primarily in the research zone right now, and doesn’t have a lot of everyday practical clinical implications yet from my perspective.

Do medical treatments for anxiety change for younger people, for teens compared to adults?

So this is an excellent question. So, there is more of a potential concern about whether SSRI, the most commonly prescribed antidepressant category, whether might be higher risk for suicidality in teens than in the adult population. There is a bit more of a regulatory warning associated with these medications in the teen years. So having said that if, for example, a teen is seeing an adult-focused neurologist, or maybe a pediatrician, there might be a bit more reluctance to prescribe. And so there may be more of a recommendation for specialty care. Having said that, SSRIs are used very commonly in teenage people. But I think the level of expertise to make sure that it’s safe and that it’s really the right thing to do is important.

There’s a lot of behavioral approaches, counseling, psychology-based approaches to anxiety management in children and in adolescents. And it seems that there’s a greater emphasis on that when we look at the literature and think about what kinds of treatment recommendations are out there. There also seems to be more psychology resources in many pediatric centers than I have seen in some adult centers. So, to answer the question, the approach may be different, talk to the neurologist and other care providers to see what they recommend. And it may be that more of a specialty-focused approach is appropriate in the pediatric age group.

So it may be that a pediatric neurologist may be more likely to recommend a referral to a pediatric psychologist or a psychiatrist to manage anxiety in either the teenage age group or younger age groups than so then some adult neurologists who might take on the management themselves. This may be evolving over time. Talk to the neurologist and find out what their comfort level is. There are a lot of pediatric centers that have really robust psychology resources. So that’s the potential silver lining to that question. There might be a resource there in a pediatric setting, more likely than an adult.

Does the person raise the issue or should they rely on the neurologist?

We wish that the neurologist would always bring this up. But I think that you can really help yourself, your loved one, your family member. If you have concerns in this area and you bring it up, it’s much more likely to be addressed. Some neurologists may address it as a routine. We know from survey data that sometimes they will only address if it’s raised by the patient. So do not be afraid to raise your concerns. It can really help lead to it being addressed. So I think it’s a great idea to bring it up as the patient.

Speaking on the patient, on behalf of the patient, somebody asked the question, how do you know when for somebody perhaps who’s non-verbal, when you should change a medication or try something else?

And in terms of the question, if we’re thinking about, is there a mental health side effect, a behavioral side effect from the medication, for example, observing behaviors and behavior changes as a medication has been added. For example, one of the medicines I listed as often good for anxiety, Clobazam, sometimes this causes agitation and behavioral problems, and it seems to be more common among intellectually disabled people. So if a new medicine is added, watching your loved one’s behavior and seeing, is something changing that makes me concerned? Bring it up with the neurologist and see. And then if it is the medication, medication could be reduced or taken away, and then you’ll find out if that was the cause.

Now, how do you tell if a medication specifically for mental health is working for your loved one? I think it would be similar to observing the behaviors that were the concern in the first place, and that led to prescribing that medication. Is that improving with the treatment? If it’s not, then it’s time to go back to the prescriber and think about what else could be tried to help.

Does it make sense for families to stay in touch with their provider more frequently as there’s a medication change?

I do think it’s a good idea, specifically, if you notice a change that is of concern. Sometimes people feel like they need to wait until the next visit to bring these kinds of issues. It’s important to know what’s the best way to work together with your neurologist. I do think though that most neurologists, if there’s a problem with the medicine, would rather hear about it sooner to be able to respond than not. But check with your neurologist as well to see what their recommended approach would be.

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 Epilepsy 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.

Siblings and Severe Childhood Epilepsy: The Impact of Seizures on the Family’s Mental Health

Siblings of children diagnosed with a severe childhood epilepsy known as a developmental and epileptic encephalopathy (DEE) often play an integral role in the care of their brother or sister. While they may learn patience and compassion at an early age, the mental health impact on these siblings can be enormous and often overlooked.

Children who have a sibling with a DEE may experience very strong emotions such as guilt, anger, sadness, fear, anxiety, and depression. The Siblings Voices Study, which included siblings in a variety of age ranges, was created to help families understand more about the impact of having a brother or sister with severe epilepsy and how these siblings adapt.1

This webinar discusses some of the key research findings of the Siblings Voices Survey, including some strategies to help improve the mental well-being and social development of siblings and resources that are available for families.

  1. Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Laurie D. Bailey, Lauren Schwartz, Tracy Dixon-Salazar, Mary Anne Meskis, Bradley S. Galer, Arnold R. Gammaitoni, Carla Schad, Epilepsy & Behavior, 2020, Volume 112, 107377 

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To hear from two college students about their experiences growing up with a sibling who has epilepsy, watch or listen to the Seizing Life episode Growing Up Alongside a Sibling with Epilepsy featuring Emma Cardwell & Nathan Bliss.

About the Speaker
Dr. Kelly Knupp is Associate Professor of Pediatrics and Neurology at the University of Colorado. Dr. Knupp practices medicine at Children’s Hospital Colorado in Aurora, Colorado and is the Associate Research Director of Neuroscience Institute and Director of the Dravet Program. Her interests are epileptic encephalopathies including Dravet Syndrome and infantile spasms. Dr. Knupp is also a member of CURE Epilepsy’s Scientific Advisory Committee.

Q&A with Dr. Kelly Knupp

For siblings of children who have frequent seizures or other types of associated unpredictable, visible medical things that need urgent care like respiratory events, is there a language, or are there tips to make this easier on the sibling?

Dr. Knupp: I think it’s really important to meet the siblings where they’re at. But I do think it’s important to talk to them about it. You may have some local resources with child life who may be able to come up with some very age appropriate terminology to discuss that. I know at my institution, our child life personnel are available to talk to siblings just as much as they are to talk to patients and are really good at figuring out how to turn that terminology into something that’s child-friendly. So ideas like having an IV that goes into your blood vessels paints a very different picture for a five-year-old than it does for a 15-year-old. So it’s really important to think about the words you’re using and how you describe it.

But I think as a parent, what’s also important is to ask clarifying questions to see if the sibling has really understood what you are trying to describe, or if they came up with something scarier in their head. That’s more often what happens, is we use words and children may misinterpret that as something scarier than what’s really happening. But I think knowing your resources and trying to find help with that can be really helpful. There are a number of books out there that can help with some of these specific things as well. And usually child life is aware of those books, or if there’s a family library at your hospital, they often have a number of these books around that can help describe those things.

Are there other helpful literature or resources in general to share with families who are struggling?

Dr. Knupp: Again, I would probably go back to the child life specialists and the family library. They often have sort of the best group of books, the… We actually turned to our epilepsy foundation to provide those books about epilepsy. So I think… I wish I knew of a great resource that listed all of those books. And maybe if somebody has a good idea of those resources, they can post them in the chat to share them with us, that really would be an amazing resource for families if there was a website that they could go to and find those.

One person notes that she believes that there’s a list of books on epilepsy.com. As a sibling myself, I pay attention to this space and there are lots of great books that span the age ranges. I was just reading one over the weekend that was really targeted to the younger set to talk about a sibling with disability. In this case it was somebody with autism, but clearly many of the context are the same. This particular book also had a workbook like a coloring book where a child could express their emotions.

Dr. Knupp: Along that line, one of the things I didn’t mention, I’ve had a number of siblings who have used an art therapist, which has been really helpful. It’s been really impressive to me to see some of the artwork that comes out of that.

What is most impressive to me is that oftentimes what the children think is going on is far worse than what’s really happening. particularly when our patients are going through things like epilepsy surgery, we have found that it’s really important for those siblings to be able to come into the hospital and see what’s happening to their sibling because otherwise what they picture when they hear about things like intracranial electrodes and surgery is so much worse than what’s really happening. It’s really important for them to see the real thing and know that their siblings are safe, but art therapy can be particularly powerful and helpful.

This person has found that her parents were also emotionally impacted, what resources are available for them?

Dr. Knupp: Yes. Parents definitely can be emotionally impacted by this. I think that every parent who has a child with a chronic illness really has to go through the whole grieving process. I think it can be really helpful to talk to other parents. I think it’s helpful to have a good social support network and it may require therapy. It may be that they really do need to sit down with a counselor or a therapist to work through some of that, and also have some insight of whether they may have some underlying anxiety or depression that could be contributing to this as well. And grieving is something that everybody does in different ways. So some people move through the grieving process fairly quickly, some people stall at one of the stages. So I think trying to get help to continue to move through that process and come to a place of acceptance can be really helpful for everybody in the family.

To your point, Kelly, I think we are recognizing it as a community that this is not post-traumatic stress, this is traumatic stress and chronic stress and that process starts very early and it’s good to start addressing it early for all members of the family. So here is a question. There are so many ways a severe epilepsy divides a family in an effort to maintain some normalcy for siblings versus keeping the child with epilepsy safe. How do families accept the new normal and not allow it to divide a marriage?

Dr. Knupp: Boy, that’s a challenging question. That’s a very complicated question and we know that divorce rates are higher in families with chronic illness. I think the more parents are aware of that, the more they are open to receiving some support and help through that. I think it’s also important for parents to recognize that their own individual processes are going to be different between the two of them just like it is with any other crisis or trauma that they have to deal with. And some families really do better when they’re apart than when they’re together, which is hard to say but that is the reality sometimes. But I think trying to intervene and trying to find some time to focus on yourselves as a couple can be very helpful.

That’s where extended family and friends often come in. It can often be very difficult to receive help from people outside your immediate nuclear family but I think that can be really helpful. Many of those people want to help you, they just don’t know how to help you. And so trying to establish that communication so that you can be clear with them of it doesn’t help me when you come empty my dishwasher, but it’s really helpful if you can take the kids for three hours so that we can go for a walk together and try to reconnect and trying to find ways to maintain your relationship that way. But I don’t think that there’s a perfect answer to this. Honestly, there are families with healthy children who struggle with this as well. So it’s not something unique to children with chronic illness, it’s just something that we see more often in children with chronic illness.

Can you discuss strategies for talking about risks of death for our eight-year-old with severe DEE has been near death multiple times and is in a hospice program? While those high risks for imminent death have been less frequent recently, should we still be open about discussing the risk with a five-year-old sibling?

Dr. Knupp: Boy, that’s tough. And I think this is where things child life can be really helpful. I mean, this is what child life does, is helps you have these difficult conversations. I think for the five-year-old, it’s really important to ask them where they’re at. And I would keep in mind that many siblings do worry about this and they may be afraid to talk to you about it. And so it may be helpful to say, “Hey, when you think about your brother or your sister, what worries you are you? Are you worried that he can’t run? Are you worried that he eats different food? Are you worried he’s going to die someday?” And try to figure out where that five-year-old’s at so that you can answer their questions in the place that they’re at. And I do think it’s important to talk about it and also to let them know that it’s not their fault. Particularly for a five-year-old the world still sort of revolves around them and so things that are not their fault still feel like their fault. And I think that’s really important to talk about that.

So here is sort of the intermediate age. The siblings in our family showed previous unspoken anxiety and concerns as they began planning their own families, thoughts about this.

Dr. Knupp: That’s very real, right? The question that comes up is will this be what my family looks like and do I have to worry about my children having this epilepsy? I think we’re in a better place now answering those questions than we were 20 years ago, because we know so much more about genetics. But I think having open honest discussions about that … I know that in my practice I’ve met a number of families who had sort of stopped looking for the cause of epilepsy for several years because it was exhausting, it was disappointing, it’s expensive, and it didn’t make a difference in the day-to-day care of their child. But when siblings started to approach sort of family planning age, it took on a new significance to reach out and have genetic testing done to figure out what were those risks really. So I think as much as you can provide information that usually is helpful.

I think also having open discussions about expectations of whether who will care for this child as parents get older. Oftentimes it’s very surprising because many times siblings will say, “That’s what I’ve always planned to do.” And the parents say, “Boy, I don’t want you to have this burden.” So it’s really important to have that discussion so that there’s a clear plan and clear expectations. Because more often than not, that’s the way that discussion goes: Parents are trying to find a way to reduce the burden and the siblings are saying, “No, no, no, I want to do this.”

Our focus was on our child with epilepsy and the therapy for coping with his diagnosis. How do we introduce this with his older sibling after the fact and make sure we didn’t neglect their feelings during this entire process of learning and understanding?

Dr. Knupp: Well, first of all, I would give yourself a break because you can’t undo the past. So if you think that you may have neglected something, what’s done is done and you can’t undo that. I think it’s important to focus on the here and now and moving forward and checking in with them and asking them, how are they feeling? Maybe if they’re older, talk to them about how you’re feeling and what it felt like in those times in the past that you felt like you had to do everything you can, and all of your energy had to focus on that and now you want to move forward. But I think it’s really important to be forward-looking with this. We’re not perfect, none of us are perfect and we’ve all had those moments where you really can’t undo that. But what’s important is to recognize the situation you’re in now and try to find the best path forward.

Just to clarify that child life is usually services at hospitals. Is that the case?

Dr. Knupp: Child life is usually services at hospitals, the vast majority of children’s hospitals have both inpatient and outpatient child life experiences. At my hospital they are able to meet with people before procedures, before appointments, they’re able to meet with siblings to talk about things like this. We actually have our child life specialists come up to our epilepsy camp to help out there. So child life specialists are usually open to a broad range of supports that they’re able to provide.

So somebody is asking for ideas for affordable counseling for parents. It’s definitely chronic anxiety and stress that would be lifelong. Is there anything available through hospitals for the parents?

Dr. Knupp: I think that’s hospital dependent. Here in my state, we would usually refer somebody to the Epilepsy Foundation for that as opposed to the hospital because we’re a children’s hospital. But I do think reaching out, and this again comes to sort of knowing your local resources. There often are sliding scale offerings for counseling available in a variety of places, and so it would be very helpful to start talking to your providers to see if they’re able to identify those. Interestingly, usually your primary care provider has the best knowledge of what those resources are. So it may not be your neurologist, it may actually be your family practice doctor, your internal medicine doctor or your pediatrician who may be able to identify those resources for you.

I wanted to learn more about the BLC, basic life support. Where does one find more about that? Is that something that might be available through hospital resources or hospice communities? But families are so burdened with all they have to do, how can we get them there quickly?

Dr. Knupp: Basic life support is usually offered through Red Cross. It can also be offered through your local fire departments, your hospital. So there’s lots of different resources for basic life support. As I have started mentioning this to families, it’s something that teenagers have really been open to taking. For many girls who may be taking babysitting courses or things like that, basic life support is usually part of that. But it’s a very systematic approach to what to do when somebody is in trouble and really can go a long way to alleviate some anxiety of what will I do if my sibling runs into trouble. I’ve been really surprised that many of the sisters may have already taken it with their babysitting courses and things like that, but many of the brothers have been really excited to take these courses and really do think that it helps a little bit in alleviating anxiety.

Here is less of a question, more of a statement, but I think it’s important to just share these things. So this person says that they have twins and a severely medically refractory child with severe SCN1A epilepsy and his needs completely consume me. I’m home schooling too to keep them healthy. I feel like I’m just meeting everyone’s needs and not spending quality time with my medically fragile child along with the twins. I feel guilty.

Dr. Knupp: I acknowledge that. I don’t have a way to fix that. I think that the truth is parents feel guilty all the time because we can’t be everything to everybody all the time. And that sounds like a particularly stressful situation. I think the first step is recognizing that you feel guilty and if you’re able to find ways to get some help so that you are able to first take care of yourself. Because if we’re not able to take care of ourselves, it’s really hard to take care of our loved ones. We sometimes forget that because we’re so busy taking care of our loved ones. But even if it’s taking a 20 minute walk, taking a break for a cup of coffee, taking those moments.

I really do encourage families to reach out to your friends and family for that type of help. They oftentimes want to help you and they just don’t know how. And that’s something that’s fairly simple, that maybe you just go sit in the backyard. So sometimes I know it’s hard to be away from your child with epilepsy because nobody else knows their seizures as well as you do and nobody else manages their seizures as well as you do. But if you can just get 20 minutes in the backyard to catch your breath, now they would probably be more than willing to help you with that and to identify those resources so that you can take care of yourself in that situation. I think parents always feel guilty and I’ll be the first to admit, I don’t have any children with chronic illness and I still have many, many moments of guilt for my parenting.

Thank you for that realism. But here’s an interesting point. While many families are able and want to help, this question is how do you get in-laws or extended family to believe that your child is having seizures and not faking it?

Dr. Knupp: I’ve encountered this. And I think oftentimes in that situation, it’s really helpful to invite them if you’re willing to, to visit with your neurologist so that your neurologist can help out with this. I’ve seen this come up not just with are these seizures really happening, but is this the management that really needs to happen? Sometimes we see this with ketogenic diet management where grandparents just don’t understand why they can’t slip a scoop of ice cream to the child and why that would be so detrimental. And so in those situations, it can be really helpful to enlist some help. I would definitely recommend that you give your provider a heads up that that’s what you want to discuss and what the concerns are so that they know to specifically address that during the visit. But that can be a really helpful way to manage that.

Here is one. It’s actually coming from a sibling and it’s actually a medical question, so I just want to change gears but sometimes it’s hard for siblings to get this information and so I do want to pose this question. Why would increasing dosage of medication be the go to answer when seizure frequency increases? Thank you in advance, worried older sibling.

Dr. Knupp: Often our thought when we’re doing that is if the medicine’s helping at a lower dose, it may help more at a bigger dose. We always have to be cautious though, because sometimes our medicines have the opposite effect. Sometimes our medicine can trigger seizures instead of helping with seizures. But we always want to make sure we maximize the medication before we move on to another medication. Usually that is our go-to, is to increase medications. The other thing that can contribute to that is particularly in our pediatric population, is that kids are growing. We may have to keep adjusting doses because the kids are getting bigger and so they need more medication to account for that bigger body size.

Thank you. As a sibling myself, I found it helpful to also go to medical appointments and learn more. So I encourage all siblings to do that, ask those questions. You may be taking on more responsibility and it’s just helpful to have that relationship with the medical provider and be able to go to them with these questions.

Dr. Knupp: Now I was just realizing at epilepsy camp, we have an Ask the Doc session where the patients, the campers who have epilepsy get to ask physicians questions because more often than not in the visit, their parents are doing the talking and not the kids. And I’m just realizing… and I had made a note to myself that we probably need to do a sibling ask the doc so that siblings have an opportunity to ask questions as well without everybody else interfering.

Thank you Dr. Knupp for spending your time and your expertise with us and answering so many great questions.

This webinar is supported with funding from Zogenix

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 Epilepsy 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 young woman is speaking in an animated way to her therapist, who is listening closely.

Webinar: Anxiety and Depression Associated with Epilepsy

If you know someone with anxiety or depression and epilepsy, know they are not alone. One-third of people with epilepsy suffer from some form of psychiatric disorder, of which anxiety and depression are the most common.

This webinar discusses how anxiety and depression in people with epilepsy negatively impacts quality of life, reduces tolerance of antiepileptic medications, and increases the risk of suicidal ideation and behavior. The presentation also reviews how stress effects epileptic seizures and offers strategies patients can use to better cope with stress.

This webinar is presented by Dr. Andres M. Kanner, Chief of the Epilepsy Division in the Department of Neurology and Director of the International Comprehensive Epilepsy Center in the University of Miami Miller School of Medicine.

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Audience Q&A with Dr. Kanner

Dr. Andres KannerHow does the acceptance of an epilepsy diagnosis contribute to the development of both mood and anxiety disorders?

That’s a very important question. And this is a question that, unfortunately, we neurologists do not spend enough time discussing with patients. Because failure to accept the diagnosis of epilepsy is very frequent, a very important cause of the development of symptoms of depression and anxiety.

One of the most difficult things about dealing with epilepsy, in addition to having seizures, is the loss of the predictability of life. When you have epilepsy, you don’t know when or if you’re going to have another seizure. And that loss of predictability is very difficult to come to terms with in the beginning. It causes tremendous anxiety for the patient. It also causes tremendous uncertainty in parents of children with epilepsy. And it’s not unusual that some patients may deal with that unpredictability through denial and saying, “No, this was not epilepsy. This is not going to happen to me again.”

The emotional energy patients and families use to deny the diagnosis of epilepsy results in the opposite effect. They become more anxious and more depressed. In my experience, when a child or adolescent experiences epilepsy and senses their parent is having a very hard time accepting the diagnosis of epilepsy, the young person or child will react by denying the occurrence of the seizure disorder and will start acting out, becoming non-compliant. And it’s going to result in a vicious circle.

One of the common mistakes is that family members don’t want to upset the patients. And when they are talking about the epilepsy, they say, “No, no. Don’t worry about it. Everything is okay. We don’t want to upset you.” What needs to be done is the opposite. You need to talk openly about the diagnosis of the epilepsy, the fear of what can happen if you have epilepsy or an epileptic seizure.

And the big elephant in the room is, particularly for patients and parents, “Am I going to die if I have a convulsion?” That fear needs to be openly discussed by the patient, the family, and all family members. By coming to terms with the loss of predictability, which takes time and is equivalent to a mourning process, people come to terms with accepting the diagnosis. Then one morning, they wake up and say, “You know what? I can live with this.” But this is essential. This is a very essential part of accepting the diagnosis of epilepsy. And it prevents the development of unnecessary depression and anxiety that is a reactive process to the diagnosis.

In regard to surgery: Why can epilepsy surgery result in anxiety and depression right away? 

That’s a very interesting question, because this occurrence is not a very simple process. What we see is that about 20 to 30% of people who undergo temporal lobectomy may experience episodes of depression and anxiety during the following three to six months. After a period of 12 months, those symptoms remit completely in most of the patients, but about 10% of patients may continue to experience these symptoms.

The majority these individuals may have had depression and anxiety before epilepsy surgery, so what these episodes consist of are a reactivation of a presurgical depressive and anxiety disorder. Those depressive or anxious episodes need to be recognized before the patient goes to surgery, and the patient and family need to be educated on the possibility of these episodes recurring during the first three to six months post-surgery. The good news is, these episodes can be easily treated with low doses of antidepressant medication.

There is, however, about 15 to 20% of patients without a past history of anxiety and depression who develop these conditions after surgery. The explanation for that may lie in chemical changes that occur with a seizure disorder. That’s one of the hypotheses, but we really don’t know exactly how to explain this phenomenon.

Another interesting observation is that about 50% of patients who had a history of depression and anxiety prior to their surgery, stop experiencing those episodes after surgery. For these individuals with epilepsy, not only is the temporal lobectomy resulting in seizure improvement or remission, but also the remission of depression and anxiety disorders.

As a follow-up question, are there any studies that analyze patients pre- and post-surgery and examine their levels of anxiety and depression?

Unfortunately, there is very little in the way of formal studies that have been conducted. There were some studies done in Australia which identified that people with a previous history of depression and anxiety are more likely to experience depressive episodes after surgery. Hence why doctors could actually identify who is at increased risk of developing post-surgical episodes of depression by taking a very careful history of their psychiatric disorders before surgery.

We don’t have studies on the mechanisms that facilitate the development of the normal episodes of depression and anxiety. But hopefully, with new neuroimaging techniques and higher-solution MRI studies, we will have answers in the future.

Can you speak to the effectiveness of yoga, meditation, and homeopathic options and if patients can try these approaches before starting additional medications?

I advocate the use of yoga and relaxation techniques for people who report worsening seizures or an increase in seizure frequency when they are going through very stressful situations. In these patients, the use of these relaxation techniques – yoga in particular – can be very effective in teaching how to do self-relaxations, which in turn results in a decrease in seizure frequency.

With respect to the use of yoga and relaxation techniques for the actual treatment of depression or anxiety disorder, these practices can be beneficial, but if there is a long history of depression and anxiety disorder, it may be necessary to use additional treatment strategies. If medication is something the patient is not interested in considering, cognitive behavior therapy is a very effective form of treatment for depression and anxiety.

Cognitive behavior therapy is a form of therapy provided by psychologists. It consists of 12 sessions, one session a week, in which the psychologist teaches patients how to counteract and overcome the symptoms of depression and anxiety. The effect of this therapy is extremely impressive, and can be as good or even better than the results seen with medications. We refer our patients for cognitive behavior therapy to neuropsychologists in the community with very good results.

Is research being done to determine if cannabidiol (CBD) helps to control not only seizures, but also some mood disorders associated epilepsy?

There is no data on the use of cannabidiol on the treatment of mood and anxiety disorders in epilepsy that I’m aware of. I know there is very extensive use of marijuana by patients as a way of self-management of anxiety and depressive symptoms. The psychiatric literature on the impact of marijuana on a mood and anxiety disorder is indicative that, in the long term, it has a negative effect.

Now we’re talking about marijuana, which has a THC component. We’re not just talking about the cannabidiol extraction being used for the treatment of some epilepsy conditions. People with a history of mood and anxiety disorders have to be careful with the use, and particularly excessive use, of marijuana as a self-treatment, because in the long term it can worsen these conditions.

We don’t know cannabidiol’s effect on the treatment of depression and anxiety. This topic is one I’m sure will be investigated in the future, but today we don’t know.

Should a patient request the completion of the questionnaires you mentioned in your presentation, or are they just a normal part of the diagnosis and treatment?

Many clinics today in the United States are using those questionnaires when the patients come into the epilepsy clinic. The patient fill out these questionnaires in the waiting room, then give them to the physician. This is a nice way for the physician to screen for the presence of mood and anxiety disorders and to know to follow-up about these symptoms.

If the clinician the patient is seeing is not using those screening instruments, patients can suggest it. These instruments can be downloaded for free from the American Epilepsy Society or the Epilepsy Foundation. Or patients can email me and I’ll be happy to give them the reference of where they can obtain these instruments.

I think physicians who use the questionnaire have found it to be extremely effective. The NDDIE now has become adopted by the International League Against Epilepsy as the screening instrument for depression. In addition, it has been translated into close to 17 languages, so it’s widely used across the world.

Did the studies you referenced in your presentation account for gender differences and associated hormonal and catamenial epilepsy?

Yes, that’s a very important question. We know that women have a higher incidence of depression than men among non-epileptic patients with depression. In people with epilepsy, we’re not seeing that gender difference. The risk of depression is as high in men as it is in women. That’s an important difference we see in people with and without epilepsy.

In the case of catamenial epilepsy, which consists of seizures occurring around the time of menstrual periods, there is a change in mood during the menstrual period that women may experience. There are some women who notice they can become more easily depressed around their menstrual periods. They may have to push themselves to do things, they may become more tearful over little things, they may become irritable or cranky, they may notice their concentration is affected. So it’s like they are experiencing mini depressive episodes which last a few days every month.

Women with these conditions often have a previous history of depression or have a family psychiatric history of mood and depression disorders, as these disorders are genetically mediated. When somebody has these conditions, the next generation (first-degree relatives) have an increased risk of experiencing these psychiatric disorders, because they are linked to several genes.

That being said, the occurrence of changes in mood around the time of menstrual periods should prompt the patient to see if they have any risk factors. Patients often find out that, “Oh, my mother used to suffer from severe depression or anxiety, my grandmother….” The fact is that the sexual hormones have the same impact on seizures as on the development of symptoms of depression.

Can you summarize the main causes of mood disorders that affect epilepsy patients?

Mood and anxiety disorders have multiple causes. As previously discussed, one cause can be a reaction to the diagnosis of epilepsy and the lifestyle implications (not being able to drive, reduced independence, etc.). Also as previously mentioned, there are risk factors associated with family history of mood and anxiety disorders, including whether there’s a first or a second-degree relative who has suffered from these kind of psychiatric disorders.

A third cause is the chemical changes that happen in the brain which are associated with the seizure disorder, as well as side effects of both pharmacologic and surgical antiseizure treatments.

There are also peri-ictal psychiatric symptoms, which is when the symptoms of depression and anxiety are related to the actual occurrence of the seizure itself. This situation has to be distinguished from the causes mentioned above, because obviously those symptoms have a different mechanism of development and are not responsive to pharmacologic treatment with antidepressant medications.

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.