Epilepsy: Beyond Seizures – Education, Comorbidities, and Family Support - Cheryl Tveit & Dr. Charbel El Koisseifi, Gillette Children’s Hospital, USA
The epilepsies are complex, and patients, families, and clinicians all deserve clear, empowering information! Torie speaks with writer, nurse, educator, and medical editor Cheryl Tveit and writer, paediatric neurologist/epileptologist Dr. Charbel El Kosseifi about their new Mac Keith Press book, where they simplify diagnoses, treatments, and the science for everyone. They also explore essential but often overlooked topics - from comorbidities and cognition to driving, daily life, and the importance of reassurance across the lifespan.
📺 Watch the Interview
🎧 Listen to the Podcast
👉 Listen on Spotify | Apple Podcasts | YouTube
Episode Highlights
Clear, accessible epilepsy education: how the new Gillette Children’s & Mac Keith Press book helps patients, families, teachers, and clinicians understand epilepsy beyond seizures.
Quality of life & comorbidities: the book’s practical guidance on anxiety, depression, cognition, cerebral palsy, and why these challenges must be managed alongside seizures.
Lifespan support & family reassurance: what people often don’t say in clinic, and how the book supports confidence, communication, and everyday decision-making from childhood to adulthood.
About Cheryl Tveit & Dr. Charbel El Koisseifi
Cheryl Tveit is an experienced nurse, educator, and medical writer who specialises in making complex medical information clear and accessible for patients, families, clinicians, and the wider public. She works as a Principal Writer with the Gillette Children’s Healthcare Press at Gillette Children’s in Minnesota.
Dr. Charbel El Kosseifi is a paediatric neurologist and epileptologist specialising in paediatric epilepsy, neurodevelopmental disabilities, and EEG. He trained at the Lebanese University School of Medicine and completed postdoctoral fellowships in paediatrics, paediatric neurology, and epilepsy at McGill University in Montreal. He currently practises at Gillette Children’s in Minnesota.
Full profiles cheryl-tveit & charbel-el-koisseifi
-
Trailer
00:00 Charbel El Kosseifi
“Despite they know that sometimes it's a long path, it's a difficult path, it's not going to be easy. But they need this feeling of security, you know. Or you can reassure me that everything is going to be okay. This is what they need.”
Intro
00:16 Torie Robinson
Welcome to Epilepsy Sparks Insights! I am your host, Torie Robinson, and here we talk with specialist clinicians and researchers to spark improved understandings of the epilepsies worldwide. If you’re new here, please do subscribe so you don’t miss future conversations - and let’s get into today’s episode.
Now, today I’m joined by Cheryl Tweedt and Dr Charbel El Kosayfee from Gillette Children’s Hospital in Minnesota, US, to discuss their brilliant new book on the epilepsies, published with Mac Keith Press. We talk about how it makes complex science understandable for patients and families, covers quality-of-life topics like school, driving, and relationships, and also highlights morbidities such as anxiety and cognitive challenges. If you or somebody that you know or someone you care about lives with an epilepsy, then this chat is for you.
Meet Dr. Charbel El Kosseifi & Cheryl Tveit
01:00 Charbel El Kosseifi
Hi, I'm Charbel Al-Koshafi. I'm a paediatric neurologist and epileptologist at Gillette Children's [Hospital] in St. Paul, Minnesota.01:08 Cheryl Tveit
Hi, my name is Cheryl Tveit. I'm a nurse, an educator, and a writer. I worked in healthcare for about 30 years. Currently, I am working as a principal writer with the healthcare press at Gillette Children's in St. Paul, Minnesota.
01:21 Torie Robinson
So, today we're talking about a new book all about the epilepsies.
Epilepsy: a new book for everyone
01:25 Cheryl Tveit
“Epilepsy” is actually part of a nine-book series that the Gillette Children's Healthcare Press is publishing in partnership with Mac Keith Press, and the books are designed to address childhood conditions that either start in childhood - some are acquired, some may develop later on in childhood, and many of them go into adulthood. And so, the book is really just to help empower families and patients to understand the condition, but then, also to feel like they're not alone in the condition. And so, each of the books has a family story that runs along with it, and that kind of helps develop the human side of the condition - along with breaking down all of the complex medical information. So, [it] kind of goes from “What is epilepsy?” all the way through to “How do I manage epilepsy?” and then “What does that look like as a family or a patient with a child or with epilepsy?”.
02:16 Torie Robinson
And I would say also what's great about it is in layperson's terms - not patronising, but just in layperson's terms - so that people who aren't familiar with it can understand it, I think. And there's a fine line, isn't there, between being patronising, I think, and speaking in layperson's terms. And, having read it, I can say that it does that, which is really good.
Full medical content - written simply
02:35 Charbel El Kosseifi
For me, writing this book was a very, very nice journey. And, it was also a big learning journey. And I got to understand and read lots of things that the patients do not say in clinic in front of us(!) and understand lots of things that they go through. So, I really enjoyed simplifying all the medical terms, writing them, and making sure that there is full content in this book - but in a simple way. And I have to say that the editors, Cheryl - and also Lily - made sure that we simplify everything. And that was a big learning process to me, because you know, physicians sometimes we're just stuck with our jargon, and this is not always good!
03:27 Torie Robinson
And it's not on purpose, it's not trying to be, you know, annoying to the patient or family. It's just… it is two different languages, actually, behind the scenes. It's a competition for how many syllables one can have in a word. Whereas when you speak to people who aren't necessarily familiar with the condition, yeah, it is a completely different language, I think.
03:47 Charbel El Kosseifi
It becomes a more difficult challenge when you're writing a book because you're writing something; you want it to be really, you know, perfect from a literature standpoint, from a medical literature standpoint, but also the challenge in this book is we don't want to use much of the medical literature. We want to simplify the medical literature to the laypeople level.
Easy-read yet educational
04:09 Torie Robinson
Also, what I like about the book actually (gosh, this sounds so like I'm pimping the book, but actually I do really, do really do like this about it!), is that, well, I think great minds think alike because for instance, on the Epilepsy Sparks website, we have glossary and in this book is a glossary, right? So you don't completely exclude the long words, but you explain what they mean.
04:29 Charbel El Kosseifi
Exactly, that was the challenge. To keep the same content but simplify the literature.
04:34 Torie Robinson
Indeed. Well, I wish I'd had it when I was diagnosed, although it might have had to have been for my parents because I was only 10. But anyway… So, Cheryl, could you tell us what are the key messages of this book?
Diagnosis, seizure first aid, and the patient journey
04:45 Cheryl Tveit
I think some of the key messages are, you know, just starting from “What is a seizure”, “What causes a seizure” (when we know - sometimes we don't know!). “What to do.” - there's just a section on seizure first aid because I think that's an important point - even if you've had seizures for your entire life, [it’s] always a good reminder just what to do in that moment, and so there's a section on seizure aid or seizure first aid. And I think some of the main points are just kind of that journey. The first part of the book, I would say, is the journey to getting a diagnosis of epilepsy because it's not always quick. And I think that is a frustrating point, as a parent, when you're trying to figure out “What's going on with my child and why is this taking so long to figure out?”. I think it kind of helps hold your hand through that process so that you know, like “Here's what it might look like.”. And then I think some of the other key messages are really just overall, “How do you manage it?” and “What do as a parent?”. Because the provider [(clinician/physician/neurologist)] is going to give you, you know, whether it's medication or surgery or you know, whatever the treatment is going to be, they're going to direct that, but as a parent, you want to know and you want to understand “What is that going to look like in the day-to-day?” and “Why is the approach the way it is?”, you know “Why is it not as straightforward as treating maybe a different kind of condition?”. Epilepsy is a really complex condition and I think that the book tries to cover that in a really good way and just trying to say like “Yeah, it's gonna be overwhelming and there might be a lot of things that you don't understand, but, kind of, here's the overall goal.” and then breaking it down a little bit into what that might look like. And I think too, just covering some of the lifespan aspects of epilepsy. You know, “What does it look like when you're younger?”, but then “What also does it look like when you're transitioning from those difficult teenager years into adulthood?” and, you know, how does epilepsy impact some of those things, like “Are you going to be able to drive a car?”, “Are you going to be able to do the things that your friends are doing?”. So, I think that that's one of the big bonuses that this book does. You know, it's kind of the lifespan aspect of it as well.
Teenagers, identity, and growing up with epilepsy
06:49 Torie Robinson
And I'm just thinking back to, well, I'm not quite sure when my puberty ended, but puberty is hard enough for humans anyway, and I think when you're trying to cope with it as a child/[person] going into adulthood, it can almost be a bit traumatic, actually, for the individual and their family. So it's really important and good that you cover that, you know.
07:11 Cheryl Tveit
I think it's written on a level that teenagers can read it!
07:15 Torie Robinson
And they totally can! And that's so, so important because you mentioned the parents before and of course it's crucial (especially if the patient is younger), but as they get older, they want to know, they want to understand (if they're able), like “What is actually going on?” and “How can I talk about my epilepsy in a more confident way?” - because that's also crucial for their wellbeing and quality of life, right.
Charbel, tell us about some… any other things that are covered in it, like anything taboo, for instance, what do people not talk about with epilepsy?
Quality of life: driving, careers, relationships, and daily life
07:45 Charbel El Kosseifi
Lots of things related to life, life with epilepsy in general. Driving, careers, studying, planning things ahead, marriage, kids, day-to-day life. These are things that we don't usually think about when we are thinking about the diagnosis of epilepsy. We directly jump on seizure first aid, medical treatment, maybe later on ketogenic treatment, neuromodulation, or surgery. We're always lost in all of these details, and what this book highlights is that next to all of this treatment, the patient is also thinking about quality of life. Seizures take maybe seconds 2 minutes, maybe maximum 5 minutes, 10 minutes in some patients. But this is barely 10 minutes of their day. If it's happening every day - usually it's not that frequent - this is not the big concern here. The big concern for these patients is how they are living the rest of their life, how they are benefiting from the 23 hours, 59 minutes that are left for their day.
Comorbidities and the social impact of epilepsy
09:06 Torie Robinson
Things like school and college, as well, right? How do they cope with the cognitive impacts of seizures, and drugs, and then the mental health aspect as well - that's so entwined, right?
09:17 Charbel El Kosseifi
I'm really happy that the book also covers the comorbidities, the scientific comorbidities, but also what we were just speaking [about], the social aspect of living with epilepsy.
Who the book is for: patients, families, clinicians, teachers, health providers - med students, residents, fellows, physicians!
09:31 Torie Robinson
Who have you aimed this book at?
09:32 Cheryl Tveit
You know, I think one of the things that I tried to keep in mind - and I will credit Lily, one of the editors - with this phrase, is she always said “You think about it as if you're writing for your daughter, who's sitting on the bottom of the stairs and wants to know about this condition. You're just having a conversation with her.”. And I have two daughters, and they're 16 and 21, and so I did envision them in my head, and they did have to read a little bit of the book because sometimes I would ask them “Okay, does this make sense to you? Are you understanding this?”. But that I think is the key; is you have to break it down enough that an individual who doesn't have a medical or scientific background can understand it. And I think that that is kind of our target audience - was the patients, the families (first), and then, sort of another market that we maybe didn't directly anticipate was some of the other providers who maybe don't have epilepsy as part of their practice; they're not neurologists, they're not practicing neurologists. So maybe some paediatricians and other providers that might decide that “I need to have information on this condition.”. So it really worked well for that. Another population that I think has been interesting to hear about since the book has been published, are educators and teachers, and people that work in school districts; that want to have these books for their staff so that they can understand “You have a student in your class with epilepsy. What does that look like? What is that child going through?”. And so I think it's a huge span of people that can benefit from this book, which is amazing.
11:19 Torie Robinson
I would have loved to have had all the people that you've just mentioned have this when I was little. I really, really would. Although my friends were actually really lovely and the teachers and… I was very lucky at school, I guess. Also, I was very open about the epilepsy, which helps! But do you know what I was thinking… an additional market, having read it myself, is for people who've had epilepsy for a while! Because often, you know, we might've had a traumatic or questionably [un]ethical experience growing up with an epilepsy, and this gives us a bit of explanation, reassurance that it's not just you that's experienced these things.
11:55 Charbel El Kosseifi
Med students, residents, and even fellows, also physicians!
You don’t know your patient!
12:01 Charbel El Kosseifi
I think it's a really good idea to go and see what the families say behind the curtain. Because I was surprised to what extent families, in clinic, say… they are selective in their words. They are selective in what they want to share and what they don't want to share. And maybe there are lots of struggles that are outside the clinic that they are not sharing here, just because they think that is not relevant to this visit. Let's focus on the treatment. Let's focus on the medication. Let's focus on the surgery. Or, yeah. That was really... And we all think that “Oh, no, we know, I know, I know, we know our patient.”. No, no, that's not correct! That's not correct, haha!
12:55 Torie Robinson
Haha.
Patient expectations, reassurance, and feeling understood
12:58 Charbel El Kosseifi
That's not correct, haha! And, second, how to simplify things and how to understand the family's expectations - especially also that sometimes people are extremely kind and they say “Oh, I want this and this and that”, while in fact, they are expecting something different sometimes.
13:19 Torie Robinson
Hmm.
13:20 Charbel El Kosseifi
Which is mainly just reassurance! Which is mainly reassurance. Yeah, which is mainly just feeling that “Okay, you're confident that things will go well.”, or “You can reassure me that everything is going to be okay.”. This is what they need. This is mainly what they need. Despite they know that sometimes it's a long path, it's a difficult path, it's not going to be easy. But they need this feeling of security, you know.
13:53 Torie Robinson
It's so true. And you mentioned quality of life before; having that security, feeling that you're not alone and that your clinician is behind you, I think plays a key part in that. I was also thinking about… going back to cognition and common memory issues in people. - and that includes actually parents and caregivers too, because often they're exhausted trying to look after their loved one - just having a book to come back to and check “What is the answer to this thing?”, again, would be really, really helpful. So, how can people access it, and what's the damage to one's purse or wallet?
How to buy the book & affordability options
14:25 Cheryl Tveit
So right now you can get the book on Amazon or the Mac Keith Press website. Both will take you to links to purchase the book. It's currently $55 for the paperback book, but it is on sale right now, so half price. And it is also available via the ebook for $10. So a much affordable option if you need to go that route.
14:44 Torie Robinson
And just to show you all guys again, here it is nice and shiny. So, yeah, totally worth getting.
Optional deep-dive content
15:03 Charbel El Kosseifi
I think this book is suitable for everyone. We made sure that the language is good for reaching everyone. I think even patients who are maybe 9, 10 years old, whenever they start reading, whenever they can read, like, you know, pages, I think that they will be good to go through the book, even. And despite we simplified the language, the content is still there. I think we have full content that would be good even for med students, residents. I think that even physicians who have been practicing, I think they would benefit at least from the side where the patients and families share their experiences with epilepsy. I think that would be a really important part. And personally, myself, I learned a lot, I learned a lot. We always think that we know our patients and we know everything about our patients, but that's not correct. Our patients do not always share everything just because maybe they think that this is not relevant for this visit “Let's focus on medical treatment or on surgery or on other things.”, but it's very important to know what are the challenges that our patients are facing and what are their… what's their target, what do they want to achieve.
Epilepsy across the lifespan: priorities and full-life planning
16:15 Torie Robinson
Their priorities, right? Because it's not the same for everyone. Do you know what the book also made me think about? I'd thought about it before, but it kind of brought it to the forefront of my limited brain(!) was that I was thinking back to when I was younger and I didn't know, because I didn't have this book or anything like it, that other things, bar seizures, were relevant to bring up in conversation with my neurologist. They would have influenced decisions made. So, like, if my neurologist says “How's things going?” I thought he was talking about seizures only. So I would only tell him about that. Whereas now I know, of course, mental health was completely important. My social activities (or lack thereof) was so important. You know, lack of sleep, dropping in school, you know, grades and stuff. So, so important, right?
17:04 Charbel El Kosseifi
Comorbidities, associated conditions. And what I really like in this book is that we didn't really limit ourselves just to the scientific part. We also thought about the associated concerns that would happen later on in real life. You know, patients with epilepsy… thinking about driving, thinking about their career later on, their studies, school, but also college/university, having a family, having kids, all of these things we try to go through them - again, in a very simplified language, but also with preserving all the content.
Book accessibility and appendix
17:45 Charbel El Kosseifi
And I would like, also to highlight that we have also the appendix we have a big appendix…
17:51 Torie Robinson
I love it!
17:51 Charbel El Kosseifi
…this book was three times, hahahahahaha…this book was three times bigger, but because we wanted to simplify the language, because we wanted something accessible to everyone, we decided that we will keep about two-thirds for the appendix. But I would I would strongly recommend everyone to go to the appendix - “everyone” depending on their needs, because we said, like, maybe someone doesn't really want to know more about the sodium-potassium ATP pump, hahaha, so, but if you want to, you can go and check it on the appendix.
18:31 Torie Robinson
I do think that's really good. And I'm thinking again from a patient and caregiver perspective, I’m going back to memory, again, whether it's lost due to drugs or lack of sleep or stress or whatever; all these new multi-syllabled words can be really difficult to remember. So, it's good to have somewhere to go back and just check “What does it mean?”. And you don't have to ask anyone again. It's like, it's okay, just check yourself. That's fine, it’ll be in your hands. So I think that's really, really good.
Comorbidities by the numbers: why they cannot be ignored
18:59 Torie Robinson
So, Cheryl, we've spoken about comorbidities or morbidities (whatever one would call them), and… could you have some numbers for us on these so that we can, I guess, explain why they're so important to have included in this book?
19:12 Cheryl Tveit
Yeah, no, I think it's a really important point, and I think, one of the things we highlight is that about half of all adults and about 70% of all kids will have a comorbidity. So they're going to have another condition that goes along with epilepsy. It doesn't mean it's caused by epilepsy, it doesn't mean the condition itself is, you know, causing epilepsy, it's just, in many cases, we don't know why they are occurring together, but they do occur together. And as you mentioned, Torie, you really have to be able to manage both things. You can't just go to the doctor and only talk about your seizures or only talk about your epilepsy, because what about all the other things that go along with it? And one of the things that, you know, we talked about earlier was the family story that runs throughout this book. And it's a story of Emma. And Emma has cerebral palsy. And actually, about 40% of people… epilepsy occurs in about 40% of people with cerebral palsy. And so we know that these conditions occur together very frequently, and so to hear Emma's story and hear about, you know “Oh this condition… or this situation is happening, but is it the epilepsy? Is it the cerebral palsy?”, and we don't know. And so you have to be able to find a provider and find information that can support both conditions. And so I think that's just really an important point - is that so many people deal with more than just one condition. It's not “just” the epilepsy. It's the epilepsy plus another condition. Like you mentioned, Torie, even just memory conditions, cognition, mental health. We talk about anxiety, depression, all those things that can go along with epilepsy.
Advocating for multidisciplinary care
20:51 Torie Robinson
Being able to confidently say, well, you'll read this and say “Ok, this isn't, again, abnormal. This is really common.”. And it makes sense. I mean, we're looking, often, at the same cause - or not always, but same cause of these symptoms together, right? And I think it's really important and useful in the book now that we can actually… you can take the books to an appointment if you want(!) and say “I know that these [conditions] are, unfortunately, holding hands. These symptoms are best mates and I need these to both be addressed”. And maybe, I think… because this can be really stressful for clinicians, just say, “I get you don't know, that's fine. I don't expect this of you, but I need a referral to somebody who does understand. And I need you guys to work together ina multidisciplinary team, because I am one person. I might have different symptoms, but I'm one person and I need this”.
Hospital’s patient-centred philosophy and collaborative authorship
21:41 Charbel El Kosseifi
This is the approach that I really like here at Gillette [Children’s Hospital], that the centralised care, it’s centralised on the patient, the patient is at the centre of the table, and we are all around thinking about the patient and the well-being of the patient, yes. And this is what we try to reflect in this book.
Next to the other idea that Gillette was historically founded with and continued with is the provider, the doctor, the physician, and the patient: walking this path hand in hand. Like, it started a long time ago with Dr. Gillette and Jesse Haskins, and since 1897 it's been like that till now. And this book is a reflection of that life journey that's written on papers. And, again, when Gillette wanted to write books, it was the physician with the patient who came and sat together and wrote the same book.
22:44 Torie Robinson
I think we need more of that. As much as I love research and academia (like, LOVE!) - and we're getting better - but it's often just done from the position or written from the opinion of the clinician or the scientist or both, and not so often from the perspective of the patient and the family. So, I think it's a really good example of where more hospitals and researchers need to go going forward. So, I thank you for that. I almost got borderline teary then, haha, in your description. So thank you very much.
Is there anything else that you would like to share with everybody about the book?
International reach and the nine-book series
23:22 Cheryl Tveit
The Gillette website has...good information on the healthcare press and some of the strategies and goals that we're working on. Like I mentioned, we have a 9-book series, and so there's other books that are available that might be relevant to somebody with epilepsy. So if somebody has epilepsy and they have cerebral palsy, we have a book on both, and so… or if they have epilepsy and they have scoliosis, you know, there's a book on that. So there are things that we try to create books that are partnerships with each other, and so I think just getting that word out there and spreading the knowledge. And the books are meant for international audiences, so while we, of course, they're written at Gillette and they're written by people that work at Gillette, but they're really just… we try to keep an international lens with what we’re doing because we know that the care is different in different countries, and so we just wanted to present the best evidence-based practice that there is and the ways that we feel things work really well, but then also knowing that if that's not available, we still wanted to provide the information to people around the world.
Closing thoughts & thanks
24:31 Torie Robinson
Huge thanks to Cheryl and Charbel for sharing their insights and for creating such a practical, empowering resource. You’ll find links to the book below.
If you found this conversation helpful, please give it a like and subscribe, and hit that bell so you’re notified when new episodes do drop. I’d also love to hear your thoughts or experiences in the comments below - and I do actually read them! See you next time.
Sponsored by
Search for an episode here
4 latest episodes
Reported by Torie Robinson
Edited and produced by Carrot Cruncher Media
A parent-led insight into life with Dravet Syndrome, this episode explores family dynamics, caregiving roles, and findings from an ethnographic study capturing the lived experiences of families across Europe.