Epileptologist Visits Explained: Prepare to get the most out of your provider appointments
This episode of Epilepsy Explained focuses on how to get the most out of your appointments with your epileptologist or neurologist. Pediatric Epileptologist, Dr. Douglas Nordli, offers advice and insights on how to prepare for your doctor visits, what materials and information you should bring, and questions you may want to ask.
In “Epileptologist Visits Explained”, Dr. Nordli covers the following topics.
0:00 Intro
0:20 How should I prepare for a visit with my epileptologist or neurologist?
1:33: Discussing seizures with your epileptologist or neurologist.
3:31 Discussing your treatment plan with your epileptologist or neurologist.
5:02 Discussing the emotional impact of epilepsy with your epileptologist or neurologist.
7:02 Discussing personal goals with your epileptologist or neurologist.
8:19 Discussing safety with your epileptologist or neurologist.
10:08 Materials and information to bring to your epileptologist or neurologist visit.
11:19 If I’m unsatisfied with my current treatment or doctor and want to get a second opinion, should I discuss that with my current epileptologist/neurologist?
You can download the S.T.E.P.S. Discussion Guide to help you prepare for appointments and foster communication with your provider here:
https://epilepsyallianceamerica.org/programs-services/steps-tool/
Look for new episodes of Epilepsy Explained every other month on CURE Epilepsy’s YouTube Channel and here on our website.
Episode Transcript
How should I prepare for a visit with my epileptologist or neurologist?
Dr. Douglas Nordli:
A couple of general things that I would say is, one, have something that you’ve glanced at ahead of time, like for example, the steps sheet that you can think through. What are the things that might be relevant to talk about in the course of the meeting. And these things might include seizures themselves. What are they like? How are they presenting? What treatments that you’ve been on? How has it impacted you and your family? And when it comes to children, a big part of that is the educational impact. What are the goals and the questions that you have from the meeting? Often it’s very important to talk about safety issues. And also a list of questions of what things do you want to raise at the time of the visit? Because there’s so much, I would strongly suggest that you ask someone to accompany you. Even if you’re an adult, because it’s so helpful to have another set of ears, somebody who can maybe even write down things just so that when the time comes and you’re reflecting upon the visit, you get the most out of it.
Discussing seizures with your epileptologist or neurologist.
Dr. Douglas Nordli:
Starting with a description of the seizures is one of the most helpful things for the neurologist and epileptologist. In that regard, if you happen to have videos of the seizures that were taken by, if you’re the patient, someone in your family or a friend or whomever, or if you’re a parent and you have videos of the seizures, those are incredibly helpful to the epileptologist and neurologist. What is helpful to us is the time sequence of the event. So let’s say if you’re an adult, what’s the first thing that alerts you to the presence of the seizure? If you’re a parent witnessing a child have a seizure, I understand that it’s one of the most traumatic things that you’ll ever see and it might be hard, but if it’s possible, if you can relate what you saw first and then what happened next and so forth, that sequence could be very useful.
Sometimes it’s extremely helpful to know what the setting is, like if there is a particular setting, because that can give us clues as to what might be triggers or particular types of seizures occur at different times of days, et cetera. So knowing the setting can be very useful. Of course, we’re going to want to know the frequency. And there, a calendar can be really helpful. That can be written calendar or a digital calendar, whatever you prefer. And don’t worry too much about the details of the appropriate nomenclature of the seizures. You’ll work with your neurologist or epileptologist to categorize and classify the seizures, maybe even in a term that’s convenient and works well for you and the doctor to communicate. You’ll work all that out at the time of the visit.
Discussing your treatment plan with your epileptologist or neurologist.
Dr. Douglas Nordli:
Let’s talk about treatments in general. So treatments could be medications, it could be dietary changes or neuromodulation. Whatever it is, there are certain themes, certain things that neurologists, epileptologists are always going to want to know to help you best. One is, what of course, what treatment have you been on? And secondly, what is the maximal dose or maximal settings that you achieved on that medication? The other thing we want to know is what have been the adverse events or side effects of those treatments that you’ve experienced or your child experienced? And last but not least is, how effective do you think those treatments were? And sometimes different treatments have different impacts on seizures. So you might want to describe like, “Oh, it helped with this aspect of the epilepsy, but it didn’t help with that.” That information is very useful. One final thing, the medical record is wonderful.
It’s got so much information in it, but it’s not always organized in a clean, chronologic fashion. So if you can jot down the treatments in order of when they were introduced, whether alone or in combination, that timeline can be so helpful to organize thoughts about what things could be done to maximize the impact of treatments.
Discussing the emotional impact of epilepsy with your epileptologist or neurologist.
Dr. Douglas Nordli:
The impact of epilepsy and treatments is a really important topic. Because you think about it, there could be several different areas that you will want to focus on. One is physical. How have the treatments impacted your body? Have they interacted with your medical health? The second is, let’s call it emotional, psychological. What has been the impact of both of those things on your wellbeing, your psychological wellbeing? This is critically important because we know that people with epilepsy are at higher risk for some issues, including depression. So you really want to share that with your physician. But the third area that I think is equally important is cognition or thinking. And in some forms of epilepsy, particularly if it’s very active, a very common theme that we’ll see is that it can have an adverse effect on the speed of thoughts and also the ability to remember.
So it’s important for everybody, but it’s particularly important for children because we regard child neurology, in general, as neurology in the developing nervous system. So time is of the essence because it could potentially impact normal development. So we want to know what’s happening in that regard. Does your child, if it’s a child that we’re talking about, have a 504? Do they have an IEP? Have they had neuropsychological testing? What are the teachers reporting about their grades? These are all really important observations. If you happen to have a neuropsychological report, please bring that to your child neurologist or your adult neurologist or epileptologist. It’s very useful information.
Discussing personal goals with your epileptologist or neurologist.
Dr. Douglas Nordli:
Our goal universally should be no seizures, no side effects. Now, arguably that’s sometimes going to take some work and can’t be achieved immediately, so it’s reasonable, I think it’s very important to discuss, okay, if you agree, that’s our long-term goal. Now, what do we need to get, how do we get there? What do we need to do to get there? And what’s most important to change right away and what can be changed a little bit later? So say for example, heaven forbid, you’re on multiple medications, you’re suffering from a lot of burden from the medications, it might be that the first goal is, can we simplify my regimen? Or it may be that you’re having an adverse event from one of the medications or treatments, so therefore we have to focus on that first. Or it might be that, no, it’s the seizures themselves. And so we really need to come up with something, a strategy that starts to reduce and hopefully ultimately get rid of those seizures.
I think we share a common goal, but there could be many different pathways to getting to that goal and timeframes. And I think those are all legitimate.
Discussing safety with your epileptologist or neurologist.
Dr. Douglas Nordli:
I would put group safety with risks. What are the risks that one encounters in a life with epilepsy? And there are multiple risks. This can range from physical risks, like what are the risks of falling down and getting injured? Or of having a burn? Or going all the way up to, heaven forbid, sudden death from epilepsy. So these are all things that we want to touch upon. At the same time, I often say to people, “You have to live your life.” And so that means sometimes taking some small risks in order to do that. So in order for you to make the best decisions, you really need to know the data. How likely is something, a risk going to take place? And so that’s something that’s individualized and really does need a conversation with the physician.
I want to bring up two other things though. One is it’s really important with regard to safety to have a first aid plan. What are you going to do? What are the things that you’re going to… What actions are going to take place if someone has a seizure? Whether that’s somebody who’s helping you or you are helping your child, for example. And the other thing is a rescue plan. I think it’s really helpful to have a rescue plan. This can reduce so much downstream stuff like visits to emergency room and unnecessary testing. So if you can, if the time permits, please bring that up in the course of the conversation.
Materials and information to bring to your epileptologist or neurologist visit.
Dr. Douglas Nordli:
Bringing as much of the primary data as you can is very helpful. So what do I mean by primary data? Primary data for us as epileptologists would be videos of the seizures themselves, extremely helpful. Actual EEGs and actual MRIs. Both of those, nowadays, can travel on CDs or DVDs. So if you can bring those to the visit, that’s very helpful. I, in particular, like to have that sent ahead of the visit so that I can spend time before the visit looking at that. I found that to be very useful. Nowadays, the other thing that’s super helpful is details of any genetic testing. Not just the gene, but the details about what was the mutation, which amino acid did it impact, where was it in the sequence of the gene, et cetera. And then finally, I would say any discharge summaries or unusual laboratory tests, like let’s say for example, if you had a spinal tap, the details of that, the results from that can be very helpful.
If I’m unsatisfied with my current treatment or doctor and want to get a second opinion, should I discuss that with my current epileptologist/neurologist?
Dr. Douglas Nordli:
Yes, I would strongly encourage you to be honest and transparent about it. And here’s the thing, if things are not going well, it’s, of course, extremely distressful to you, but it’s also distressful to the physician. And sometimes that’s an opportunity to get help. The vast majority of physicians that I’ve met, neurologists, child neurologists, epileptologists, are truly interested in the welfare of the patient. That’s the primary thing. By all means, bring it up and talk about it. Nothing else is as important as the wellbeing of the patient.
