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.