Episode #155 - A Mother and Neurologist Shares Her Son’s Amazing Journey From Traumatic Birth to Seizure Freedom featuring Dr. Kendra Cagniart
A Mother and Neurologist Shares Her Son’s Amazing Journey From Traumatic Birth to Seizure Freedom
Episode Overview
On this month’s Seizing Life, Dr. Kendra Cagniart shares her son’s journey with epilepsy, from a traumatic birth in which he arrived in status epilepticus through his current period of seizure freedom at the age of 9. This is an amazing and ultimately hopeful journey of a young boy living with epilepsy.
Dr. Kendra Cagniart, Navy and Air Force veteran and neurologist at the Cleveland Clinic in Vero Beach, Florida, shares her son Christophe’s epilepsy journey from the point of view of both a mother and neurologist. Christophe’s birth in 2016 was traumatic as he arrived in status epilepticus and spent his first week of life in a neonatal intensive care unit. During that time, Christophe was diagnosed with a hypoxic ischemic injury to the brain. The longterm prognosis for Christophe was unclear, but included the possibility of intellectual disability, as well as cerebral palsy from damage in the motor cortex. However, Christophe steadily improved in the NICU and progressed normally during his first six months, until his seizures returned. Dr. Cagniart recounts Christophe’s journey from the onset of staring episodes to further occurences of status epilepticus, to his current seizure freedom at the age of 9. Incredibly, Christophe has thrived despite the recurrence of seizures. Though he deals with the challenges of ADHD, he has been seizure free for over 2 years and recently weaned off his anti-seizure medicatons. Christophe’s physical and intellectual health is strong as he participates in sports, plays video games, attends school, and does most things that 9-year-old boys do. Dr. Cagniart notes that she is aware that their epilepsy journey may not be over and seizures could return at any time, but enjoys these days of seizure-freedom and remains hopeful that Christophe will continue to thrive no matter what the future brings. This is an incredible and hopeful journey that has progressed from drug-resistant epilepsy to freedom from both seizures and medication.
Episode Transcript
Kelly Cervantes:
Hi, I’m Kelly Cervantes and this is Seizing Life, a monthly podcast produced by CURE Epilepsy.
This month I’m happy to welcome Dr. Kendra Cagniart to the podcast. Dr. Cagniart is a neurologist and veteran having served in both the Air Force and the Navy. She’s currently a practicing neurologist at the Cleveland Clinic Indian River Hospital in Vero Beach, Florida is also the mother of a nine-year-old boy who lives with epilepsy. She’s here today to share her son’s journey and provide her perspective as both a caregiver and a neurologist.
Dr. Cagniart, thank you so much for joining us today. To kick things off, why don’t you give us a little bit of background on yourself, your family, your career?
Dr. Kendra Cagniart:
Sure. Thank you for having me. I really appreciate this opportunity. So I’m Dr. Kendra Cagniart, I’m an adult neurologist and my husband is an anesthesiologist and we have three young children. We started our medical careers at the Uniformed Services University of Health Sciences, which is the military’s medical school in Bethesda, Maryland. It’s right across the street from the National Institute of Health, and that’s where we met. I was active duty in the Air Force when I started there and then switched to the Navy to be with him so that we could be co-located. And after medical school, we completed internship in Virginia.
And then, as is typical, in the Navy Medical Corps, we completed a general medical officer tour and he did flight surgery. So we did training for that in Pensacola. And then we did our tour in Jacksonville, Florida, and he deployed twice during that time. And then we went back to the DC area, and that’s where I completed my neurology residency at Walter Reed National Military Medical Center. And then I had a follow-on staff tour in Northern Virginia. And when we came back to the DC area, he was still a flight surgeon, deployed again during that time. And then he went back to residency in anesthesiology, and then we came together and did a hospital tour in Jacksonville, Florida. And we completed our service obligation a couple of years ago and then have both transitioned to the civilian side. And I currently do some neuro-hospitalist work for Cleveland Clinic Indian River in South Florida.
Kelly Cervantes:
Wow. It’s a whole lot of moving and training and moving pieces in your career, and we’re grateful for both your husband and your service. Talk to us about your family. So Christophe, your son was born in 2016 and he is your middle child, is that correct?
Dr. Kendra Cagniart:
He is.
Kelly Cervantes:
Yeah, tell us about your family and about Christophe.
Dr. Kendra Cagniart:
Yeah, so Christophe was born during my second year of residency, so I was a PGY-II in neurology and everything had looked great during all of his prenatal care, so things were progressing normally. We had no concerns. And because it was a very busy time, and I also had a two-year-old son, and we knew that my husband was going to be deploying shortly after my due date, I asked my program director if I could go down a little bit early before delivering and be with my family who was already in Florida, just to have some support. And he was amenable to that. And like I said, everything had looked good from a prenatal standpoint. So I came down to Florida with my two-year-old, and my husband was there for a little bit before his deployment. And it was just a normal day. We had been at the park and there was nothing that was unusual.
And when dinner came around, I realized that I just hadn’t felt him move in a while. And I’m going to be honest, I was not someone who was diligent about doing the kick counts. It was just you’d feel the move, that was exciting and it started to worry me at first, but especially as a physician, you get nervous sometimes to go in and be a panicked patient. So we tried a couple of things, eating, drinking a lot of water, some cold stimulus with ice cream, and there was still nothing. So then I got really worried and notified all of my family, and we went in and when they had him hooked up on the monitors, he was showing a lot of signs of distress. And we ended up going in for a urgent kind of crash C-section situation.
And it was unfortunately our second time being in a delivery where there was no crying baby. So our first child was stillborn, so we had already had that experience. And then with Christophe, we didn’t anticipate any of this. And because it was a C-section, I was on the table, so I couldn’t really see what was happening. But my husband’s first view of Christophe coming out was that he was blue, he wasn’t really moving, and they were doing CPR, and I could see the look on his face while I was there and so it was a really terrifying experience.
And as they were trying to resuscitate Christophe, then he started having these abnormal movements. And the description that they had given me was that his right arm was moving repetitively, his head was turned and he was kind of arching his back over and over again. And so they ended up getting him intubated and treated with phenobarbital. And because we didn’t anticipate any problems, and I was already so close to full term, there wasn’t a NICU at this hospital, and so he was stabilized and transported. So he and my husband went to a NICU that was about two hours away, and I didn’t get to meet him until his third day of life.
Kelly Cervantes:
Oh my gosh. Thank you for sharing that. I know traumatic birth stories are… They’re traumatic, but I appreciate you sharing them because I think it’s so important that everyone knows that it’s not always the beautiful birth story that you dream of and I think it helps other women feel a little less alone in that space because it’s not what we imagine. And again, I’m so sorry to hear about your stillborn child as well. So thank you for sharing that. So your son is born, they get him to the NICU and you finally get to meet him three days later. What do the doctors tell you has happened and how is he doing? Did he stabilize? Tell us about that first week.
Dr. Kendra Cagniart:
Yeah, so the first week I was getting a lot of information from the child neurologist who was on call at the time, and he was taking care of him. And from the initial studies that they did, they could tell that he had swelling in the brain from an ultrasound that was done, he had some abnormalities on an EEG when they were looking at the electrical activity of his brain. And then within the first couple of days, they were able to get a brain MRI and that showed what they were concerned about, which is a hypoxic ischemic injury.
And so there were areas in the brain that they could see on a particular sequence of the MRI that were showing damage, and that was kind of in these deep structures called the thalamus, and it was on both sides and then going down into the brain stem, down to the midbrain. So when they kind of put all that together, the diagnosis for him was hypoxic ischemic encephalopathy, which can be quite scary, but he was doing very well and each day was getting different lines out and then got extubated and they didn’t see any more of that activity that he had had at birth and so they didn’t give him any more anti-seizure medicines, and he was doing okay. And he was really a fighter from day one and made it out of the NICU in a week, and we were home and not on anti-seizure medicine.
Kelly Cervantes:
Wow. And what was the prognosis that the doctors gave you? Because HIE is a scary diagnosis, but he flourished in the NICU it sounds like. So I’m curious what that prognosis looked like.
Dr. Kendra Cagniart:
Yeah, it’s always hard to say that early, and that was what they shared with us. So there are discussions that I had with the team and then kind of me informing my family about the diagnosis and what that could mean. So I mean, what I really expected from the information that we had was that his motor development would probably be severely impacted. I expected that he would have the limitations that would be kind of classic for cerebral palsy and would need a lot of support in that regard. We weren’t really sure from an intellectual standpoint how much he would be impacted, so it was just hard to know so early on, but those were all the things that we were thinking about.
Kelly Cervantes:
It’s a lot to digest for a non-medical person, but I imagine with your background and all of the knowledge and information that you have, it’s probably just a little bit extra. Tell us about those first few months of Christophe’s life.
Dr. Kendra Cagniart:
Yeah, the first few months went really well. So my husband was able to stay home for two weeks after he was born, and at least got to see him come out of the NICU and that he was starting to do the things that we’d expect of a baby. He was feeding well, he was moving. We didn’t see a lot that was unusual compared to our two-year-old son early on. As he started to move around more, his tone was abnormal. And we were connected with kind of an early childhood program in Florida, and they had a physical therapist who was coming out a couple of times a week, and she was helping me stretch and massage him. And so we were hoping that over time that would help, but again, very hard to know early on, but we were so pleased that he seemed to be doing the things that we had expected that our older son had been doing around the same age.
Kelly Cervantes:
That’s amazing. And I momentarily forgot that you are now managing all of this by yourself because your husband is on tour and wow. Unfortunately, I know that Christophe’s seizures returned. Can you talk to us about when they returned and what these seizures looked like?
Dr. Kendra Cagniart:
Yeah, so it was shortly after I returned back to residency after maternity leave and he and my other son were in daycare at the time, and initially it was the daycare team that had said, “He’s having these shaking episodes while he’s drinking a bottle.” And I hadn’t seen them yet, so it was hard to compile the secondhand information and figure out what that might mean for him. But I had talked with them extensively about his birth circumstances and that we were really being cautious and not sure what to expect. But certainly with HIE, epilepsy kind of goes hand in hand with it.
And so eventually there was one that happened while he was with me, and it may not seem that odd to other people, but it was uncharacteristic for him. So he would be drinking a bottle and shortly into it or in the middle of it just stopped sucking on the bottle and his head and arms and torso, you could just feel this very fine, so a kind of high frequency, but low amplitude, shaking, this tremor almost, this tremulousness. And he wouldn’t make eye contact with anybody or be attuned to the surroundings and would then just abruptly fall asleep.
And for those who have had newborns, usually at the end of their bottle, they get that kind of punch, drunk smile, little drool, and then fall asleep, but the dog barking or a loud noise next to them would startle them, wake them up, something like that. And so this was unusual in the sense that it was happening very early on and there was these abnormal movements with it. And then if I did something like try to clap my hands loudly next to him, he wouldn’t wake up to that. So just seemed to be abruptly more of a deep sleep. The movements were strange, and because it was tending to happen when I was feeding him and holding him, it was very hard to try and videotape that at the same time to be able to show it to one of the child neurologists that I was working with.
But they were concerned when I talked to them. And so we restarted his evaluation. He got another EEG. They actually did another brain MRI when he was quite little, and that seemed okay. They couldn’t see the damage initially, but these episodes kept happening. And they’ve started him on Keppra. It was a liquid Keppra, so that was easy to give him. But despite increasing the doses with subsequent episodes, he was still having, I think it was at least 11 over the course of just a couple of months. And we switched him then to Trileptal, also a liquid. We got more control with the second medication, but it would still be every couple of months he’d have something.
Tasia:
Hi, this is Tasia from CURE Epilepsy. Since 1998, CURE Epilepsy has raised over $100 million and funded more than 300 epilepsy research grants in 19 countries. Learn what you can do to support epilepsy research by going to cureepilepsy.org. Now back to Seizing Life.
Kelly Cervantes:
So you get Christophe started on the Trileptal, and that seems to be helping, although it sounds like he was still having breakthrough seizures. I’m curious if they told you what kind of seizures he was having, because they almost sound like infantile spasms, but not quite.
Dr. Kendra Cagniart:
Yeah, that was definitely a concern, but I think partially because his development at that point was on track and he was meeting milestones that I think there was some reluctance to call it that. And with infantile spasms, there’s a characteristic electrographic signature that you see on the EEG.
Kelly Cervantes:
Hypsarrhythmia.
Dr. Kendra Cagniart:
Yeah, he never showed that on any of his EEGs. His EEGs would have abnormalities, but they would usually just be a few sharp spikes on one side or the other.
Kelly Cervantes:
So you’re having these sort of intermittent breakthrough seizures on the Trileptal, when did you see that change?
Dr. Kendra Cagniart:
It was the daycare staff again, that really brought things to our attention, and I was so grateful for them. And they had had Christophe since he was such a young infant, and they knew him really well and felt comfortable communicating with me. And they were the ones that at a parent/teacher, they do a twice a year little conference had said, “We’ve noticed that he’s having these episodes where he just is staring off. Are you guys seeing that?”
Kelly Cervantes:
And how old is he at this point?
Dr. Kendra Cagniart:
He was about two, and we hadn’t noticed it. And very interestingly, for Christophe at home, he is a loud, vivacious child. I mean, even at two years old, we used to call it his little manifestos. He’d be standing at the dining room table in the middle of a meal talking loudly and boisterous about something and go on these little tirades. And sometimes the words wouldn’t even make sense, but he was just so animated, and at school he’s much quieter. And so we hadn’t seen anything like that. He had still seemed like his kind of loud, goofy self, but they kept noticing them.
And then my husband and I have different philosophies in medicine, and I very much am pro-medicine, and taking care of things and want to treat conservatively, and my husband would just rather minimize the use of medication at all times possible. And so we had just had an appointment, a check-in with child neurology, and my husband was saying, “Well, do we really know what they’re seeing? We haven’t seen this at home yet. If we don’t count these episodes that they’re seeing, it’s maybe been a year, maybe we could talk about decreasing the medicine.” And I said, “No, I mean, I really do trust that they’re seeing something and would really only tell us if they were concerned.” And so I was reluctant. I said, “No, I think we should hold where we are and see what happens.”
And just a few weeks after that conversation, he had an episode while he was eating breakfast with us in front of my husband, and we’re sitting around eating pancakes. And again, Christophe is usually talkative and loud and funny, and he just stops eating, the fork kind of falls, and he’s just staring. And I’m tapping him because he’s sitting next to me on his shoulder, he’s not responding. Even his older brother looks at him and goes, “Why is Christophe not talking?”
And the look on my husband’s face was just such disappointment that we’re kind of back to this. And he hadn’t seen an episode in so long, and it was just really, really tough for him. He was not surprisingly in our story of the military, about to leave to go out of the country for a month. And in rapid succession, Christophe had a couple within about a week and a half that either we had seen at home or at daycare of these staring episodes and just behavioral arrest, and then he may or may not be tired afterwards, but just really wasn’t himself during the episodes. And at daycare, they had also noticed sometimes his face would twitch on one side or he was having the automatisms and looking like he was picking fuzz off of his shirt, but there was nothing there.
So we got back in and we were starting to add a new medication, and then later, about a month later is when he was able to communicate to the daycare team that he didn’t feel well, laid down on the floor and they said, “He’s not moving and just not acting like himself, was worried that he was having an event but wasn’t really coming out of it like he usually was.”
And so I had, at that time, we had an au pair. I had the au pair drive him, take him to the emergency room, and I drove in from the hospital that I was at in Northern Virginia and was FaceTiming her while he was in the ER and trying to talk with the ER physician and saying, “Look, this is not normal for him, and this is not what his episodes are like. They never last this long. He should definitely be back to talking and joking by this time.” And he’s not making eye contact with her, not talking to her or to our au pair. And I was really concerned, and I said, “I think that he’s in non-convulsive status and that his brain is still seizing.”
And everybody’s always trying to do the best they can and she’s never met my son before and said, “No, he just seems to be postictal to me.” And I said, “Look, I’m on my way. I’m driving across DC on the Beltway. Please, please just get some Ativan ready to give to him.” And she still seemed skeptical, “No, I think he’s just coming out of it, we’re going to give him some time.” And I got there, and he’s not acting like himself. There’s no response to anything. Doesn’t matter what you’re doing, tapping, touching him. They’ve got a blood pressure cuff on, kind of poking for labs and stuff, and he’s just not responding, which is not normal. And so I said, “Please just give him the Ativan.” And they gave him the Ativan, and shortly after that, he was acting more like himself. And when she swung back around the room to check on him, she said, “Oh my goodness, this is like a different child.” And I said, “Yeah.”
Kelly Cervantes:
You’re like, “Yeah, I’ve been trying to tell you, if you had just listened to me.” Oh, that must’ve been so unbelievably frustrating. I mean, grateful that he was okay, but also, you knew.
Dr. Kendra Cagniart:
Yeah, yeah. And I mean, I was clear on the other side of DC, so it took a long time. And the same thing from the daycare to get him to the emergency room. So it was about 90 minutes before he received the Ativan.
Kelly Cervantes:
Aye yai yai. And so did they do another EEG or any additional testing after that episode?
Dr. Kendra Cagniart:
Yeah, he stayed overnight in the hospital and the EEG was okay after that, and he had only received that one dose of Ativan, but we added a new anti-seizure medicine. After that we added Topamax to the Trileptal. That’s a journey for parents if they haven’t done that one. The Topamax Sprinkles, I tell people it’s like opening an old beanbag chair and having the styrofoam balls pop out and static everywhere and you open this little capsule and you’re like, “Oh no, they’re dropping,” and trying to get it in applesauce or yogurt or something that they might eat. So that was a tough one to administer. And then even when we were able to get it to him, his personality really seemed subdued.
Kelly Cervantes:
So developmentally, was he still hitting milestones through all of this?
Dr. Kendra Cagniart:
He was, really the only added service that he needed and needed was probably a strong word, was physical therapy. So at that time, he would kind of hold his arm in a weird posture when he would run and he had a foot drop on one side. And we always kind of laugh at the things between my husband and I, training and anesthesia. He’s like, “I don’t see a foot drop. I don’t know what you’re talking about.” And then if I had any of my neurology colleagues over, they’d see him. They’re like, “No, we see this.” But it’s just a difference in what you’re attuned to and a different skillset for what you pay close attention to, and we are all about the details in neurology, and so it’s hard for us to not see some of those things. But he was running and jumping off of things and it wouldn’t stop him from doing anything.
Kelly Cervantes:
It is just absolutely remarkable to me how well he did and just how young brains can heal and recover from something like that. Speaking to that, you ended up taking him for a full evaluation to the Cleveland Clinic. Talk to us about what that looked like and what those results were.
Dr. Kendra Cagniart:
Yeah. So unfortunately, we had another similar episode to that first one where he had this long episode of what we presumed was non-convulsive status. So he had the first in December of 2019 and the second in February, and the second was very similar, was about an hour before he was treated with Ativan. Again, he stayed overnight and that was when we added Onfi. So we had stopped the Topamax and he was on Trileptal and Onfi, so we were on our fourth medicine and had had two very scary episodes and then moved a couple months later. So we start with a new team who is getting to know him, and in part of their work up, after these two big events, they said, “We’re on medicine number four, we don’t have control. He’s now had two episodes of non-convulsive status epilepticus that’s concerning. We should do a tertiary care eval.”
So there’s things that you’re doing to prepare for that. So sometimes an extended EEG, some initial genetic testing. We did neuropsychological testing. And the prolonged EEG that we did before that, it was our first one after moving in Florida, that was the first time that he had any generalized discharges, and that just added another layer of complexity for me, that’s where some of the times knowing things is hard because I think I had always conceptualized, okay, he has localized onset seizures and we don’t have to worry about SUDEP. And then when he started having generalized discharges, then suddenly that’s in my mind and trying to decide how much do I tell family members and it’s a really hard thing to talk about. So that was a big challenge for me of just kind of adding that to the mix. And there was some of that too with adding Onfi, even though in residency I had seen it do such amazing things for kids and some adults, you really felt like the epilepsy is serious to be considering that medicine.
Kelly Cervantes:
That’s a big dog drug.
Dr. Kendra Cagniart:
Yeah, yeah. He had been dry from an overnight standpoint for a long time. And then after we moved, started having bed-wetting episodes, and that was concerning. I thought, “Okay, now he’s got generalized discharges. He’s wetting his bed at night.” Sometimes he would know, because he would get up and change his jammies and I’d find some in the bathroom, and other times I would find him like that in the morning and he would have no idea what I was talking about. And so I’m panicking that he’s having episodes at night. I have a camera in his room. I’m spend my maternity leave with my daughter reviewing footage and taking notes. And my husband’s like, “You’re a sleep-deprived mom, driving yourself crazy. You can’t do this, just-”
Kelly Cervantes:
But what do you do? I would’ve thought the exact same thing. And I’m not a doctor, but that mom instinct tells you that you need to be on high alert.
Dr. Kendra Cagniart:
Yeah. Yeah. And we did a prolonged EEG at home, a 72 hour before that, and of course, no episodes at night.
Kelly Cervantes:
Nothing. Never. Never, when they’re connected.
Dr. Kendra Cagniart:
He’s connected, dragging the laptop around, missing school and nothing happens.
Kelly Cervantes:
Oh my gosh. So what did they tell you at the Cleveland Clinic?
Dr. Kendra Cagniart:
We got a lot of really good information there. So it was really helpful because we were able to get there. They got a recording of him on his regular medicines at the time, then we were tapering. And tapering Onfi takes a long time, so they were very patient. We captured some of the bedwetting episodes at night and they didn’t have an electrographic correlate to them, so there were no EEG changes while he was having the bedwetting episodes, so that was a huge sigh of relief. They also had us partnered with child psychiatry. As part of the workup doing the neuropsychological testing, he had pretty strong results for ADHD, which also comes along with epilepsy. And he had been having some behavioral concerns at school, wasn’t really doing his work unless his teacher was there, was spending a lot of time sitting under his desk.
So when we brought all of that up to them, their child psychiatrist was really helpful and came to me and said, “Mom to mom, physician to physician, I have a lot of children with epilepsy who also have ADHD, and so many of them do fine from an epilepsy standpoint on the stimulants.” We had tried all these non-stimulant medications which either just didn’t have any efficacy for him or he would have side effects and it would really just kind of subdue him and change his personality and we just weren’t really getting anywhere with them. But I was so reluctant to try the stimulants because I didn’t know where we were from a seizure standpoint. And so that was really, really helpful.
And then the epilepsy team, they also were able to get a brain MRI as we left, and that looked great. They got good pictures and they didn’t see the damage that we saw on his very initial scan, and that was fantastic. And just such a testament to the neuroplasticity and how kids’ brains are rapidly changing and we felt so fortunate. So I felt like we had all this great news. And then the kind of summation was, “Well, it seems like his seizure type has changed over time. There are behavioral concerns. We have the bedwetting. School was going so so, they were concerned that he might have a genetic epileptic encephalopathy, and that was kind of like, “Whoa.”
Kelly Cervantes:
Right. You’d always pegged this on the brain injury, the birth injury.
Dr. Kendra Cagniart:
Right, right. I mean, it made sense anatomically from what we had seen, the time course, everything. And then to say, “Okay, are we invoking a whole separate entity here?” And with those, a lot of times children start trailing off in there are milestones, then they backtrack and they start losing those skills and you think, “Oh my gosh, he’s done so well. He’s really flourished. We have this very entertaining personality when he is home, to think that we’re just going to be going backwards was really hard to hear.”
But we got in with child genetics, we did all the genetic testing, waiting for all that to come back, nothing. We’re like, “Okay, maybe we dodged this one.” And then we got him back in with child psychiatry, got him started on a stimulant and grades and his behavior really drastically changed.
Kelly Cervantes:
So how is Christophe doing today?
Dr. Kendra Cagniart:
He’s doing great. He started flourishing at school, it was really much easier for him to do his work. Not to say that he’s still not fidgeting and we see a lot of the inattentive things, but he was on AB honor roll all last year. He’s playing sports, he plays soccer. He’s doing great. And we didn’t have a good feel for his frequency in Florida, but then we did more and more testing and our child’s neurologist got to the point where he said, “Look, it’s been a while since you guys have seen a seizure. I think we can talk about tapering his medicine.”
And I’m in a panic. My husband’s like, “Yes.” And so he said, “We’re just going to do what I usually do. We’re going to get a 24-hour EEG, and if that’s normal, then we can talk about this discussion. When we get to this point, and if that data is normal, 70% of these kids are going to do fine and not have another recurrence of seizure.” We’re like, “Okay, that’s good.” The other 30% they can have their seizures come back and the epilepsy can be harder to treat than it was initially, scary for me to hear and my husband’s like, “70% is great. Let’s give him that opportunity. Let’s try and see how he is. He’s been on this long acting Benzo for years.” And I thought, “This EEG is not going to be normal, he hasn’t had a normal EEG in his life. We’re not even going to have this discussion. We’ll just wait a year and keep doing these EEGs and see when we get there.” And lo and behold, his EEG looks great. I was-
Kelly Cervantes:
Wow.
Dr. Kendra Cagniart:
Yeah. And that was last fall and we did a long taper and he stopped the Onfi right around his birthday, so March of earlier this year.
Kelly Cervantes:
That’s incredible.
Dr. Kendra Cagniart:
He’s nine. And we are so far so good. We still carry around our rescue medicine. They still have it at school. We’re still very cautious.
Kelly Cervantes:
Yeah, I’m crossing all fingers and toes for you.
Dr. Kendra Cagniart:
Yeah, yeah. I mean, our journey might not be done with epilepsy, but I say we will take this time to see how he’s doing and to enjoy a break off medicine, still on medicine for ADHD, but a break off of epilepsy medicine and just remain hopeful.
Kelly Cervantes:
Yeah. I love how you word that, remaining hopeful because I do think, as much as parents want to be like, “They’re cured, we took them off the medicine and everything’s fine.” The truth of the matter is outside of brain surgery, there is no real cure. And unfortunately, epilepsy can always rear its ugly in puberty, or the number of stories I’ve heard where they’re fine through even puberty and then they get to be like 17, 18, 19 and they start drinking or getting less sleep or all of these things. But I love that idea, instead of sort of living in fear, you just sort of remain hopeful that this status quo remains and you can say goodbye to the status epilepticus.
Dr. Kendra Cagniart:
And that’s what I really love about neurology. We have so much room to grow and for all of our treatments, and if you just think about the number of new medicines that we’ve had for epilepsy in the last decade, it’s incredible, the changes that we’ve had with devices and interventions. And so I really do feel hopeful. I mean even just from a technology standpoint. And so I just think as we continue to push the field and your support for research goes a huge way for that, we really have so much room to grow with our treatments and interventions that I do think it’s important to be hopeful.
Kelly Cervantes:
I think that that is such a really wonderful mindset, and I think that it is that much more impactful coming from you who is both a mother of a child with epilepsy and a neurologist. You see both sides of this. And to that point, I would love to hear advice that you would give to other parents as the neurologist, as the mother, as they are navigating this epilepsy world.
Dr. Kendra Cagniart:
Yeah. I think a really important piece is just being strong and standing up for your child, you know them best and provide education as much as you can to those who are going to be interacting with your child. I’ve had lots of talks with the school nurse, with all the teachers, the administrators, the sports coaches, the religious education teachers, everyone that he interacts with, other parents at birthday parties, field trips, so that you have more eyes on them, you’re going to get information and it’s going to be helpful. And if you have other people looking out for them… And you’d be surprised, I think, at our first daycare, all of the employees started carrying stopwatches because they would time his episodes and he was the only kid that had epilepsy there.
And when we came to this school in Florida where we are now, his nurse hadn’t had much experience with this before, the school nurse and so she and I talked a lot and she came up to me recently when I was bringing medicine to school and said, “You wouldn’t believe it this year we have five other kids with seizure rescue medicine.” And I said, “Yeah, it’s unfortunately a lot more common than people think.”
But I really encourage parents to just, you know your child best and stick out for them at school in your appointments. And it’s a journey where you’re not alone and it can feel very isolating, and that’s where I think that organizations like this do such a great job putting resources out there, putting education out there and letting parents know that there’s other people who are going through it too. And even those of us in the field are not immune to this, and I have experienced the same fears and anxiety as other moms who are worried about their children. And so really reach out to those resources and build your community.
Kelly Cervantes:
Yeah. Dr. Cagniart, thank you so much for chatting with us today, for sharing Christophe with us and for working in neurology. We need all of the neurologists that we can get, and we are incredibly grateful for the work that you do.
Dr. Kendra Cagniart:
Thank you so much. I really appreciate you having me and giving me a chance to share our story.
Kelly Cervantes:
Thank you Dr. Cagniart for sharing Christophe’s journey with us. CURE Epilepsy was founded over 25 years ago by parents like Dr. Cagniart, who came together to advocate for improved care for their children, living with epilepsy. Unsatisfied with the status quo, these parents joined forces to spearhead the search for a cure. Today, CURE Epilepsy is the only non-profit organization committed to the singular goal of finding a cure for epilepsy. We accelerate cures by funding groundbreaking research. If you would like to learn about our research initiatives or support our efforts to find a cure for epilepsy, please visit cureepilepsy.org. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. 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 healthcare 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 conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.
