Episode #145 - Fostering a Good Relationship with Your Child's Epilepsy Care Team featuring Patricia Dean, ARNP
Fostering a Good Relationship with Your Child’s Epilepsy Care Team
Episode Overview
This month on Seizing Life® Patricia Dean, Advanced Registered Nurse Practitioner and the Epilepsy Network Specialist in the Comprehensive Epilepsy Center at Nicklaus Children’s Hospital in Miami, joins us to discuss managing the relationship with your child’s epilepsy care team.
The relationship between parents and their child’s epilepsy care team is vital to ensuring that the child receives the best possible care. There are expectations and responsibilities on both sides of the relationship. In this episode of Seizing Life, Patricia Dean shares insights from her 40 years of experience working with families in epilepsy care. Patricia answers questions and offers advice on working with the care team throughout all aspects of the epilepsy journey, from initial diagnostic tests and getting a proper diagnosis, to preparing for appointments, creating a seizure action plan, and getting a second opinion. If you are the parent of a child with epilepsy, this episode provides insights and information to help you establish an open, collaborative, and respectful relationship with your child’s care providers.
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 Patricia Dean to the podcast. Patricia is an advanced registered nurse practitioner and the epilepsy network specialist in the Comprehensive Epilepsy Center at Nicklaus Children’s Hospital in Miami. For 40 years Patricia has worked with children and families living with epilepsy, and she is here today to provide insights and advice for parents in working with their child’s epilepsy care team.
Patricia, thank you so much for joining us today. To kick things off, why don’t you share a little bit about your roles and responsibilities as the epilepsy network specialist in the Comprehensive Epilepsy Center at the Nicklaus Children’s Hospital?
Patricia Dean:
Hi, Kelly. I’m very happy to be here today. Well, I’ve worked at Nicklaus Children’s Hospital in the Epilepsy Center for over 40 years, and I started out at the bedside. And then I was the clinical coordinator of the Epilepsy Monitoring Unit for many, many years. And a few years ago, I stepped back from that and now I’m the epilepsy network specialist. And so, I’m lucky enough now for my job to be just concentrating on helping families get themselves through the epilepsy process. I no longer have to do history and physicals and all that, and I’m able to spend times with families helping them, helping them understand their diagnosis, helping them understand the process, and also working with the different consumer groups to see how my patients intersect with them.
Kelly Cervantes:
What an amazing position to have, and incredible that Nicklaus Children’s Hospital has that, because I think it is incredibly overwhelming. Whether you are just you’re a parent with a newly diagnosed child, or whether you are years into this, there is always so much to be thinking about and so much to manage as a parent caregiver to a child with epilepsy.
Starting at the beginning, a child is recently diagnosed with epilepsy, what are the basic tests that a parent should expect to be ordered for their child?
Patricia Dean:
It depends on how they’re diagnosed; if they’re diagnosed by their pediatrician in the office, or they come into the emergency room and they’re diagnosed. But for the most part, the first test they’ll probably get is an electroencephalogram or an EEG. And if they come in through the ER, they’ll certainly probably get a CAT scan, a brain CAT scan as well. And then from there it depends.
Kelly Cervantes:
Are there certain tests that a parent should be aware of that they should specifically ask for?
Patricia Dean:
Well, I think that, like I said, it depends on how the introduction to epilepsy is made. Like I said, sometimes a pediatrician, the mother tells the pediatrician something and the pediatrician makes the referral to … They go straight to the neurology office. Or if they come in through the ER, they may be hospitalized and then it’s a different presentation. But I think as soon as your child gets a diagnosis of epilepsy, you should request a genetic test.
Kelly Cervantes:
I couldn’t agree more with you. I think a lot of people are under the misconception that genetic testing is inaccessible, or that insurance won’t pay for it. However, times have changed so quickly just within the last five to 10 years that genetic testing is considerably more accessible, less expensive, and far frequently more covered by insurance companies.
So a parent caregiver, they are meeting with their child’s neurologist, what kind of information should they be expecting from the clinician?
Patricia Dean:
Well, first of all, they should be expecting the truth. They should be told outright, “This is epilepsy and your child will have seizures, will need to be put on medication.” And so first of all, they should be told the truth. I mean, I think it doesn’t help anybody by not telling them the whole story, just the whole truth of what it means to have epilepsy.
Kelly Cervantes:
You bring up an important point right there that I just want to highlight really quickly. Using the word epilepsy I think is incredibly important. I have spoken to so many patients over the years who were told that they had a seizure disorder and didn’t realize that that was the same thing as epilepsy. So getting that factual information and using the right words, you’re so right, that is so important.
Patricia Dean:
Yeah. I think seizure disorder maybe started for something to do with insurance. I’m not sure where that came from. But yeah, I mean, I think parents need to know the truth. Always you need to be honest and upfront with them. You don’t need to be cruel and overwhelming, but you need to be honest and upfront. And that’s what you should expect from your doctor: just honesty and clear, precise information.
Now, sometimes like the initial diagnosis, as you probably know when it’s made, parents, all they hear is, “Your child has epilepsy,” and then they hear, “Blah, blah, blah, blah, blah, blah, blah,” because it’s an overwhelming diagnosis, overwhelming. Any kind, I guess, diagnosis about your child is overwhelming. But I think that they need to be told exactly what it is and what to expect moving forward. Now, some of it can’t be told, epilepsy is kind of a disorder that some people, for some kids it can be a mild inconvenience, but for others it’s a catastrophic illness. And that sometimes in the beginning of the process, your provider can’t tell you exactly where your child’s going to fall in this, but I think the initial discussion has to be that it’s epilepsy, and this is what it is, and this is what you have to do.
Kelly Cervantes:
You mentioned that shock and overwhelm in the moment, and this realization of how, because epilepsy is a spectrum disorder and how little is truly understood about epilepsy, I mean, that I think is what stuck with me so much in those early days. And then immediately going to Dr. Google and trying to find as much information as I possibly could and trying to sift through and figure out what was applicable for our family, for my daughter. Do you have any tips on how parents can navigate the available information and how they can find the best care for their child? Because as you mentioned, it could be something as simple as an inconvenience, or it can have catastrophic effects. So, how does a parent find the best care and find the best, most accurate information?
Patricia Dean:
Yeah. Well, it’s really hard. I mean, as soon as you tell someone, “This is it,” and I hear doctors say, “Don’t Google it,” but that’s not going to happen in this day and age. You’re immediately going to go and look online. Now, what I try to tell parents is I try to guide them into certain websites, like hospital websites, or in the epilepsy.com, it’s the Epilepsy Alliance website. I try to guide them, but you can’t. The problem with the internet is that you can go down a rabbit hole very quickly, even if you don’t mean to.
And I just think what the caregiver, what the practitioner has to do, whether it’s the doctor or a nurse or a nurse, is tell the parents to contact me if you have any questions about what you read. And I mean, that’s what I try to do. I try to tell them, “Listen, call me.” If you read something and you’re concerned, contact me and we’ll talk about it. And I think that’s what you need in your doctor. And in modern-day care, you’re not always going to be able to talk to your doctor all the time. But sometimes the nurse or the nurse practitioner in the office can help you understand some of the things that you’re finding out online.
Kelly Cervantes:
You bring up another incredible point. I think it’s important to find out what the preferred communication path is for that particular doctor. Is there a specific number to call? Do they want you to email? Is there a nurse practitioner that you can reach out to that perhaps you’ll get a faster response to? But knowing how to contact and to ask those questions in order to get the most expedited and informative response back from the provider I think is an incredibly important point that you bring up as well.
Brandon:
Hi. This is Brandon from Cure Epilepsy. Have you or a loved one been recently diagnosed with epilepsy? Are you looking for more information about epilepsy and available treatment options? Go to cureepilepsy.org/for-patients to get resources and information about epilepsy. Now back to Seizing Life.
Kelly Cervantes:
So Patricia, in speaking about communication with the doctor, it makes those in-clinic appointments where the family actually gets to meet with their neurologist that much more important. What should a family prepare in advance? What kind of questions should they be ready to ask? What kind of information should they bring with them, so that they can get the most out of those appointments with the doctor?
Patricia Dean:
Yeah. We talked a little bit offline about how difficult modern medicine is, and the truth is doctors are often oppressed for time. They have to, say, see a certain amount of patients a day and they’re just busy. And so it doesn’t matter how much time they might want to give to a family, sometimes they don’t have that amount of time. But what I try to tell families to do is to write down any questions they might have, or whatever they saw online to write down the questions, and to look at those questions and put them in some kind of order. And when they come to the visit to have questions so they know what to ask. Because a lot of times people leave and after they leave, they figure out, “I should have asked A, B, C, and D.” So if you somehow can prepare, write down questions and know what you want to say.
You should also have a seizure count. Some people keep seizure diaries, and if your child’s having a lot of seizures or any amount, you should be able to tell the doctor, “He’s had five seizures since the last visit. This is what happened.” Make sure that you make the best use of your time. I mean, sometimes parents have, they waste time talking about things that really aren’t really significant to that visit. And everything about the child that they should tell, not about how many seizures they have, but how they’re doing. If they’re having problems in school, if their behavior is off, if there’s a possible, if there’s some kind of behavior that makes the parent think that it’s the medication. And I know it’s hard. I mean, I know it’s hard. It’s so hard just to manage day-to-day life that to have to remember to write things down and have this is difficult, but it’s really helpful in the long run.
Kelly Cervantes:
Yeah, I agree. And there’s been some great apps that have been developed in the last few years that parents can look for in their App Store to help with those seizure diaries. Even just keeping the questions on the Notes app in their phone, just so it’s always there and available at the ready.
But you also bring up a really good point about the child as a whole. Epilepsy is so much more than just the seizures. The medications have side effects, mental health, depression, anxiety is such a common comorbidity with epilepsy. Really being aware of the effect of the epilepsy on the child’s wellbeing as a whole is so important and really something that their doctor, their neurologist should be focusing on as well beyond just the seizures.
To that extent, I wonder if you can detail who a parent can expect to be a part of their child’s care team. And now I understand that this question, it’s going to vary based on how significantly the epilepsy is impacting the child’s life and how many more symptoms and issues the child may be experiencing alongside the epilepsy, but who is a part of that care team in addition to the neurologist?
Patricia Dean:
Well, once a child has tried more than two medications for their seizures, they should really be referred to an epileptologist. Now typically, you may be seeing your local neurologist who is a doctor who specializes in neurology. And the thing about pediatric neurology is epilepsy is one of the biggest issues that a pediatric neurologist will see in his practice. So they’re well versed in neurology, but sometimes if the child is not responding to medication, it’s better to be referred to an epilepsy program where you’ll see an epileptologist, which is a doctor who only takes care of kids with epilepsy or has done special training in epilepsy more than their neurology training. And especially if you wind up in a, say, level-three or level-four epilepsy center, there’ll be other people. There will be neuropsychologists, and social workers, and probably nurses and nurse practitioners that are involved in the program. So all these people are a part of your child’s care.
Kelly Cervantes:
You brought up a couple of things there that I really want to highlight. An epileptologist is always a neurologist, but a neurologist is not necessarily an epileptologist. And really getting in to see an epileptologist after two failed medications is incredibly important.
You talked about epilepsy centers and the different levels. We have done podcast episodes covering that before. If people are interested in discovering what that means to have a different level epilepsy center, I highly recommend going and checking that out.
And then when you’re inpatient, this is something that it took me ages to figure out. So you have the nurses and you have the nurse practitioners, but when you’re inpatient, there are also residents and interns and attendings, and there’s all of this language that maybe you have some gauge of what it means because you watched Grey’s Anatomy or ER, but it’s really all new. Can you just run through that hierarchy of the different levels of doctors that people might come across in a hospital?
Patricia Dean:
Yeah, sure. It is. A lot of people you’ll see. Typically when you go into a hospital, especially if it’s a training facility. For epilepsy, if you’re going into these specialty level three, level four centers, it’s a teaching hospital. So there might be a medical student might be sent in to take your history, and then the resident will come in who is the new doctor in training, if you will. And then you might have the neurology resident, or the epilepsy fellow come in to take your interview. The nurses are always there, right? Nurses are always there taking care of you, and they have to ask you questions. And then I’m a nurse practitioner. I spent a lot of time in the EMU, so I came in and talked to the parent. And then you have the attending physician who would be your epileptologist.
So yes, there are a lot of different doctors. And most of the time you’re repeating your story over and over again. And I know it is quite sometimes frustrating for families, because they’re so anxious and yet still they have to keep repeating their stories.
Kelly Cervantes:
I found that when we would go inpatient, one of the ways that I navigated the frustration of having to repeat myself over and over again was writing down certain pieces that I could pass along, like a list of all of the medications that my daughter was on. So then I could just hand that over and be like, “Okay, this is the current list of her medications,” and that way I didn’t have to run through it over and over and over again. It was just something that I could pass off that they could copy and make sure that it was the same as whatever was in the computer system.
Patricia Dean:
Yes, I agree. And I just wanted to add, when you said having the list of your medications, I think if you have a child who’s having a lot of seizures and you’re going to a lot of visits and hospitalization, you should keep your child’s records. And the real records that are important are your EEGs and your scans, the medical history, history of what meds you’ve been on and what meds you’re on now are very helpful.
Kelly Cervantes:
So something we haven’t covered yet, but is incredibly important is developing a seizure action plan. Can you talk to us about what a seizure action plan is and what should be included, and who should be a part of creating that?
Patricia Dean:
Yeah, a seizure action plan, it’s a plan. If someone has a seizure, this is what you should do and it should be very comprehensive. And what you usually see on a seizure action plan is it would be first kind of demographic information, and then it would be the types, because some children and adults have more than one kind of seizure. And it would talk about the seizures, what they look like, how long they last, and it would have intervention for each type of seizures. Just an example, if a child has the seizures start out, just say with movement of one hand, and you wouldn’t necessarily have to do any intervention. The child didn’t lose any consciousness, but if it lasted more than a certain amount of time and began to spread, then maybe you would give medication to stop it.
And we use it a lot in pediatrics in schools, obviously, because children go to school, they spend a good part of their day in school, and the people who take care of them in school need to know what to do if they have a seizure, and you really need to spell it out for them so they know, “If this happens, do this. If this happens, do this. And this is when you need to call 911.” But it’s also good just to have at home for families, to have so that they, because like you say, you go to the doctor and they give you all this information and you don’t always … It’s hard sometimes with everything else that you have to remember in your life to retain everything that was said, because sometimes a seizure action plan will say, “If your child has a breakthrough seizure, give them another dose of medicine.” So, it just spells out what you could do if someone has a seizure. And like I said, we use them a lot in school, but for home they’re important too. And especially if, say, you leave the child with the grandparents, or some kind of babysitter, because you might know exactly what to do, but everybody doesn’t know exactly what to do.
Kelly Cervantes:
So, another question that I get pretty frequently is when a family should look for a second opinion and what they should be looking for in a second opinion, and where they should go to get a second opinion.
Patricia Dean:
Yeah, I think you get a second opinion whenever you want one.
Kelly Cervantes:
And sometimes it could be a third, fourth, or fifth opinion for that matter.
Patricia Dean:
Exactly. I mean, sometimes if your child’s treatment isn’t fully effective, you might want to get a second opinion. And there’s nothing wrong with asking your doctor, telling your doctor that he wants a second opinion. I mean, unless your doctor is insecure, he really won’t be offended or upset if you ask for a second opinion.
And where to go is a little more complicated. You can ask your doctor, or there are a number of consumer organizations. There’s the Epilepsy Foundation, there’s the Epilepsy Alliance, there’s Cure, Lennox-Gastaut Foundation, there’s the Dravet, there’s different organizations, and you could also contact them and ask for their opinion. It’s hard for me to say, if patients ask us for a second opinion, I’ve been in the business for a long time, so I know people across the country that I can refer them to, or I could suggest, not refer them. I can suggest and they can decide. It’s hard to say specifically how you should get a second opinion, but I think you could start with asking your neurologist or your epileptologist because, like I said, unless they are really insecure, they’ll be happy to do it. I mean, if we’re not helping somebody enough, we are happy for ourselves to have another opinion.
Kelly Cervantes:
Absolutely.
Patricia Dean:
If there’s something we can do more, we want to do it. And that’s how your doctor should feel.
Kelly Cervantes:
I also think it’s important to acknowledge that sometimes you may go and get a second opinion for, let’s say you live in a more rural area and there’s not a ton of doctors around you. Maybe you travel further away to get that second opinion from some sort of specialist who, but you still could then see your regular local neurologist as your primary epilepsy doctor. But they are in conference with this other specialist who is further away. And so I think there’s so many different ways to look at it, but because epilepsy is so varied, because two cases, even with the same diagnosis are rarely identical, that getting those additional opinions, the more information that we can get, the better. The better chances there are in terms of treatment.
Patricia Dean:
Now, we’re a little even luckier with telehealth.
Kelly Cervantes:
Yes.
Patricia Dean:
Because now you can be living in the middle of a very rural area, and perhaps be referred to a doctor in a major metropolitan city that would be willing to see you online.
Kelly Cervantes:
And so much of medical data these days is online, is stored online as well, so all you have to do is sign a piece of paper and they can get access. Your hospital system can share access to those medical records with another doctor, which is also incredibly beneficial.
When a child is going into the epilepsy monitoring unit for an extended video EEG stay, what does that entail? What can the family expect?
Patricia Dean:
Well, I’m going to say boredom. Some boredom.
Kelly Cervantes:
That’s honest. You said you would be honest.
Patricia Dean:
Boredom. So it depends. Oftentimes children, or adults too, it happens to them that they fail, like I say, two or more meds. And so they have to get a comprehensive look. And because of nature of seizures at home, your child’s having seizures every day. You’re coming to an epilepsy monitoring unit, you put all these leads on, and all of a sudden they’re not having any seizures. So what oftentimes happens when someone goes into an epilepsy monitoring unit is that their meds start to get cut back because if the doctor wants to really understand your epilepsy, he has to see the seizures, the stuff that happens in between seizures are helpful. But to really understand the nature of your child’s epilepsy, the doctor has to see the seizures. And he has to see, like I said, he has to see a number of seizures to make sure every seizure looks the same, just to really understand the nature of the epilepsy.
Typically, children will come in and sometimes they will have to have a scan, another MRI scan, a bigger MRI scan, a longer MRI scan. Sometimes for these MRI scans they have to be sedated and then they get the electrodes on. And for the most part, most places that the technology is still, they’re on a camera, they’re connected to a cable, so they have to stay in bed or in a chair. They don’t have a lot of leeway. They can’t get disconnected and go down to the cafeteria because you don’t want to miss seizures.
So first of all, they’re kind of confined to the room. And also, like I said, sometimes the meds are reduced or stopped. And when that happens, oftentimes they have more seizures or bigger seizures, so parents have to be ready for that possibility. And I hear parents say all the time when they come into a monitoring unit that they spend their days praying that their child doesn’t have seizures, and then they come to the monitoring unit and after they’ve been there for a week praying that they have a seizure.
So the epilepsy monitoring, the point of an EMU is to capture seizures, and we do what we have to do to catch seizures. Sometimes it involves sleep deprivation, because sleep deprivation is a big trigger for seizures. And unfortunately, if we have to keep your child up you’re staying up too. So it can be a very trying period for a family. But unfortunately, like I said, the nature of epilepsy, and if you want to understand it and do something significant about it, you have to see the seizures.
Kelly Cervantes:
Yeah. The only time you want your child to have a seizure is when you are in the EMU. That’s for dang sure.
We are incredibly grateful to people like you, Patricia, who are out there helping the families navigate such a complicated diagnosis, helping them learn the ways of hospitals and the medical world, and the labyrinth of systems that parents and caregivers have to navigate when they get that epilepsy diagnosis for their child. So we are incredibly grateful to you. Thank you for coming on the program today and sharing your decades of knowledge with us.
Patricia Dean:
Thank you, Kelly. Thank you for having me. And I just want to tell parents there’s always hope. There’s always hope. And don’t give up. Don’t give up.
Kelly Cervantes:
Thank you, Patricia, for your insights and advice on building an open, collaborative, and respectful relationship with your child’s epilepsy care team. As an organization founded by parents of children with epilepsy, Cure Epilepsy understands the importance of a strong parent care team relationship to ensure the best care possible for your child. For over 25 years, Cure Epilepsy has connected parents, doctors, and researchers through our mission to fund breakthrough research that will lead us to new therapies and ultimately cures for those living with epilepsy. If you would like to help us achieve our goal of a world without epilepsy, please visit cureepilepsy.org/donate. 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.