Melanie Cole, MS (Host): There’s no handbook for your child’s health, but we DO have a podcast. Featuring world-class clinical and research physicians, covering everything from your child’s allergies to zinc levels. Welcome to Kids Health Cast by Weill Cornell Medicine. I'm Melanie Cole, And we have a. Patient story about epilepsy for you. Today we're speaking with Dr. Caitlyn Hoffman. She's an associate professor of neurological surgery at Weill Cornell Medical College, Cornell University and Jennifer O'Connor.

Jennifer is the mother of Claire, a patient of Dr. Hoffman.

Thank you both so much for joining us today. And Dr. Hoffman, I'd like you to start by telling us a little bit about epilepsy. What is it? How is it diagnosed? Tell us a little bit about the criteria for determining that someone has epilepsy.

Dr. Caitlin Hoffman: So, epilepsy is, at its core, abnormal, involuntary, spontaneous activity in the brain. The brain activity that leads to coordinated thought and movement and sensation is typically directed and voluntary. And when that circuitry does not function in that type of a way and instead produces on its own abnormal involuntary activity, that is when seizure activity is defined and occurs.

 So, that can really involve any area of the brain and can be triggered by many different causes that anything that can elicit that type of abnormal activity. And so, therefore, it's diagnosed in many different ways, because every patient essentially brings their own presentation to the table, depending on what area of the brain is being triggered and causing seizures and what was the original impetus for that. That can be a structural abnormality that was present from birth and presents over time. It could be in response to a prior infection, or it can simply be a genetic proclivity.

It really has a tremendous range in terms of the etiology. No matter the etiology, it typically begins in terms of assessment with a patient presenting for the patient or parent, or pediatrician or a teacher, et cetera, picking up on something abnormal, either an abnormal movement, a child reporting an abnormal sensation, interruptions in their attention, interruptions in their sleep, or new behavioral abnormalities. And all of those things can actually represent seizures in children. It's quite a different entity from adults.

And so, that type of a concern is typically followed by an EEG where there is a surface electrode array placed to try to pick up on some of that abnormal activity. And then, that would be followed by very specific imaging and a very specific battery of epilepsy-centric investigations to determine if this is truly the presence of seizures—and therefore, epilepsy—and then, we start working together to figure out what we can do about it.

Melanie Cole, MS: Wow. Thank you so much. That was a great explanation. So understandable. Now, Jennifer, I'd love for you to tell us yours and Claire's story. Why was she treated at Weill Cornell Medicine? Tell us a little bit about your experience and how you came to meet Dr. Hoffman.

Jennifer O'Connor: Sure. So, Claire was diagnosed at our local hospital about two years ago. And we left there, and I thought, "Oh, she just takes this pill and she'll be fine, and no more seizures and we're just going to go on about our life." And unfortunately, that didn't happen. The seizures just became out of control. And it was clear that medication was not going to work.

I happened to have a friend and a colleague that her daughter was a patient of Dr. Hoffman's. And in conversation with her, she mentioned that her husband had written a book about her daughter's journey with epilepsy and that I should read it, and that she was going to reach out to Weill Cornell to see if Claire would be a candidate to become a patient there. So, I read the book and I read it in one sitting. And I said to myself, "Oh my goodness, no way. This is not going to be Claire's life. And we are going to get into Weill Cornell." And that's exactly what happened. We were referred to Claire's neurologist, Dr. Grinspan, who, at our first meeting, basically said that surgery would probably be Claire's best option at becoming seizure-free. Claire had gone through tons of testing. And one of the outcomes was that Dr. Hoffman had recommended the stereo EEG, which is invasive testing. And it was funny, I had not met Dr. Hoffman yet. And I said, "No way. We are not doing this." You know, I did

research and I was like, "This sounds terrible.

I can't do this." And then, we had our first appointment with Dr. Hoffman. And

my husband, Claire, and myself walked out of there and said, "Oh my goodness, we're doing this."

Like Dr. Hoffman's presence, her confidence, her kindness, I can't say enough about her, was what made us feel comfortable having Claire go through this testing. And then, Claire did go through that testing. And they were able to determine where her seizures were coming from.

And she had to go through further testing to finally determine that she would be a surgical candidate.

And again, I said, "No way, no how. We can't do this." This isn't the life we pictured. But

my friend—her daughter was Dr. Hoffman's patient—said to me, "Jen, you need Dr. Hoffman's hands on Claire's brain,

and she's going to be fine." So, we went in

and met with Dr. Hoffman. And again, I went in there, my husband, Claire, we went in there and said, "Okay, we want the least invasive. We don't want to do this." And again, two minutes with Dr. Hoffman, and we said, "Oh my goodness. Like, wow." I had the most confidence in her. I wasn't afraid of the surgery itself. I was more afraid of What the outcome could be after.

but

she just has a presence about her. And I can't even describe it, but

obviously we are forever grateful. And Claire did have surgery at Weill Cornell. She's actually four months today post-op, and doing really well.

Melanie Cole, MS: Wow, Jennifer, you've got me all choked up. I mean, so scary, really. The seizures are so scary and all the tests and procedures. And I could hear in you, as a mother myself, the mother's determination to help our child, because there is nothing more important really. And getting to meet Dr. Hoffman and all that you're saying about her is really so inspirational.

Now, Dr. Hoffman, tell us a little bit about your thoughts when you first met Jennifer and Claire. And based on Jennifer's discussion here and her emotionality And the love, obviously that's going on and the fear, tell us a little how you approached them. And she was saying, "No way. No way." And then, she just did a flip around. How did you do that?

Dr. Caitlin Hoffman: I think, because the emotions that Jennifer is expressing, I share with them. And I think that it is an incredible privilege to have the ability to do what we do and to have access to the type of team and the quality of care that we are able to practice in this setting. And yes, it's an extreme privilege. But it's one that, you know, you have to learn and figure out how to convey that type of care and concern and confidence to your patients.

I think the biggest factor in what we do is the depth of our experience as a team is incredibly important in garnering that type of confidence in your patients and their parents. We function together as a very large multidisciplinary epilepsy team and have done so for a very long time. And that longitudinal experience together allows you to build your experience profile together to make innovations together, and to then transfer all of that experience to your patients.

I think one of the most important things to understand about epilepsy, and Jennifer conveyed this beautifully, that the initial assumption and understanding is, "Well, this is an electrical phenomenon and we can treat this by taking a medication that short circuits that electrical phenomenon. And that's going to be the end of it, and that's the safest way forward."

And I think the most important misconception, which is a completely understandable misconception, is that surgery is dangerous for the brain, and medication is not, and seizures are not, right? And that that all kind of exists in a different place that is not as dangerous to the brain as surgery is. And that's what generates this fear. It is completely understandable and, as a parent, absolutely rational and understandable as I'm a mother as well.

But what we all have to understand and how I really try to couch and frame these conversations is that that's actually not the case. So, seizures in and of themselves are extraordinarily dangerous to the brain. They are essentially an abnormal electrical circuit that then hijacks the entirety of the brain as they propagate and spread. And when this is occurring in a developing child's brain, that then is disrupting that child's development every time they're experiencing a seizure. And then, their brain is being asked to recover from that process over and over and over every time they're experiencing a seizure. Sometimes seizures are visible and we know they're occurring. But in children, sometimes they're not even visible. Those are called subclinical seizures.

So, children's brains are actually sometimes being asked to try to develop and function in the school environment, take SATs, function on the basketball court in all these ways that they're trying to grow and find themselves and develop. And yet, all the while, they are trying to battle this constant reset and abnormal activity. And if you add medication on top of that, these medications are not benign. They can be very good at stopping seizures, but they are systemically active and they can have their own set of ramifications for the developing brain. When you balance that against a very targeted, appropriately selected one-time surgical intervention that is only targeting the abnormal circuitry and the abnormal generator in the brain, that is far safer than everything that we just discussed, that epilepsy and its long-term ramifications carry.

And so when you balance those scales and we walk through just that process of appropriately selecting the right procedure in the right patient and doing the appropriate test to make those determinations, then it starts to take on a very different feel and characteristic. And that's what my role is in walking through this process with patients, with their families, and with my patients.

And it's a process. You can never expect that it's going to be one conversation. This is something that you really have to be in the trenches together with every patient, every family, and it's always going to be different. The right surgical approach, the right timing of that approach, the right tests and tools to dictate that approach is going to be different for every patient. And, I think, that's just an important thing that you gain over time.

Jennifer O'Connor: Can I just say that when we met with Dr. Hoffman, we all left and said, "Wow, this is the first time we actually have hope." Dr. Hoffman said Claire was having seizures and she was either recovering from seizures that would take like a day or two, and then increasing medications, which are horrible and have horrible side effects. I mean, I had a child who was an AP honors kid to not even being able to get to school or like form sentences at times. And it was so scary.

And I remember Dr. Hoffman saying just like she just said now much more eloquently, but she said to us, "Nobody wants to talk about the dangers of epilepsy. They always want to talk about the dangers of brain surgery." And then, she went on to explain what she explained. And like I said, we walked out of her office and I said, "Wow. Like for the first time, I actually have hope." And really, truly, just knowing somebody whose daughter had surgery with Dr. Hoffman and just doing my research, I wasn't scared and I knew—yeah, I told you, my friend said, "You need Dr. Hoffman's hands on Claire's brain." And I truly believed that Claire was going to be safe in that operating room. My fear was, "Okay, am I going to get my same kid that I sent in there? Is she going to be the same one that comes out?" And I have to say, she is—much better though.

Melanie Cole, MS: Wow. Well, I think it really is, especially for parents, the fear of the unknown, and you're not sure what is going to come of all of this. All you know is that you're scared for your child and you have to advocate for them as best as we can. So, Jennifer, tell us a little bit about the rest of the experience, the staff, the surgery, the procedure in general. What particularly stood out about the care that Claire received and your experience with the hospital, how they helped you navigate all of this? Because the appointments, the tests, the procedures, I mean, scheduling all that stuff is enough to make anybody's head spin.

Jennifer O'Connor: So, I have to be honest that any person I talk to, I'm like, "You have to go to Weill Cornell," because we dealt with our local hospital and it was very different. Every single person was so kind, so helpful. I mean, from every nurse that we came in contact with; Michelle Buontempo, who works with Dr. Hoffman, everybody was truly amazing. The scheduling was easy. They worked around us. I have zero complaints, nothing but positive things to say. Even as scary as the surgery was, it was like, "You're good. Like, she's going to be good." And everybody was just so positive. And I just can't say anything more. I've never had an experience at a hospital, truthfully, like Weill Cornell.

Melanie Cole, MS: Wow. I mean, that really is saying something

Jennifer O'Connor: Yeah, I mean, Claire was probably one of the older kids in the pediatric ICU. And she just formed bonds with some of the nurses. And she was kind of on the fence about whether or not she wanted to go to nursing school herself. And after her experience there, she is going to nursing school.

Melanie Cole, MS: So, this is really incredible and the navigating, the scheduling, all of that aside. If you were to look, Jennifer, at the most positive part of this experience, when you said your daughter now wants to be a nurse, I got chills because I think that is the type of healthcare professional that comes into this very difficult field with a passion that other people just can't understand, because they've been a part of it. And so, I get it as a cancer survivor myself, I know what it's like to have to try and maneuver that system, and it sounds like Claire's attitude is just really something so uplifting for us. What would you say is the most positive part of this experience?

Jennifer O'Connor: I don't even know if I could narrow it down. It was a positive experience from the start. And obviously, the most amazing is that Claire is four months from her surgery. And knock on wood, things are going amazing. She's back to being a teenager. And enjoying life that she was meant to enjoy. And honestly, meeting Dr. Hoffman, like she is who changed our family's lives and, obviously, Claire's the most. But I will never be able to thank her enough. You just never know and you're putting your faith and your trust in somebody. And I truly felt like we were in the best hands. I had no doubt whatsoever. And I told Dr. Hoffman when she graduates nursing school, I'm going to send her that picture. Maybe I'll even send her an invitation and she could come.

Melanie Cole, MS: There you go. That's the way to do it. This is just such a great story, ladies, really. And Dr. Hoffman, I'd love to give you the last word. And, Jennifer, thank you so much for telling us about Claire and give her all of our best. She sounds like a lovely young woman, and she's been through the ringer and come out the other side.

Dr. Hoffman, kind of wrap it up for us how you feel about helping people like this about what you get to do for a living that is so rewarding, but also lifesaving, truly lifesaving, and how you work with other colleagues, multidisciplinary teams, to help Jennifer and Claire and so many others like her navigate these kinds of conditions.

Dr. Caitlin Hoffman: Of course, it is the most incredible feeling to be able to share in this type of success and joy. And to see Claire now be able to get back to what she should have been doing and to rejoin her trajectory, there is nothing like it. And, yes, it's a phenomenal thing to be able to be in a very close proximity based on the surgeon's role in that team.

But I do have to be very clear and grateful as you are indicating, Melanie, to the fact that this is only possible because of every colleague at every level of this incredible team that works together every day to create these types of outcomes. And that is from, yes, my incredible nurse practitioner, Michelle, to our wonderful epileptologist—we have a huge team—to our neuroradiologist and our neuropsychologists, and everyone that supports this process along the way. Because as you've highlighted so well here, every layer of this experience is essential for patients, for their families to maintain trust, to maintain hope and, therefore, to navigate it successfully and to get from point A to point B. And that is what is important.

And I think the greatest gift that a piece like this provides is to every other patient and every other family that may be in this position. Because as Jennifer has so beautifully outlined and demonstrated in action here, the type of support and confidence that other families can convey that can then catapult and pull another family and another child through this process.

And if this story can reach even one more child that can then be given back what they deserve in terms of their future, then that's worth it to me. And I think that that to me is the most important impact of these types of pieces and stories, is to gain the sense that there are options, there is hope, and that there are teams of individuals that are there for them and dedicate their entire lives, myself included, to making their lives better. And we could be given no greater gift. And I think that that's the most important thing to focus on to close out this story.

Melanie Cole, MS: So well said, really beautifully put. And so important as you say, Dr. Hoffman and Jennifer, if some other families can hear this experience, then we have all done our jobs here today because it's so important to pay that part forward, to let other people know of our experiences, and really to help them understand so that that fear of the unknown is lifted away so that the veil is lifted, because it's such a mystery sometimes in the medical world. And we don't know what the heck's going on and how we're going to navigate it. But that's so great that you were able to work together and feel so supported. I thank you both for coming on today and being so candid with us. And Jennifer, again, please give Claire all of our best. So, I thank you both so much.

And Weill Cornell Medicine continues to see our patients in-person as well as through video visits, and you can be confident of the safety of your appointments at Weill Cornell Medicine.

Melanie Cole, MS (Host): This concludes today’s episode of Kids Health Cast. We'd like invite our audience to download, subscribe, rate, and review Kids Health Cast on Apple podcast, Spotify, I Heart and Pandora. For more health tips, go to Weill Cornell.org and search podcasts. And don't forget to check out Back to Health I'm Melanie Cole.

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