I wanted to talk about functional neurological disorders just because this is a topic, it's near and dear to my heart. When I started seeing patients with FND, I had a little bit of fear with seeing them, some uncertainty with how to talk with these patients and their families and what treatments to offer them. So I've done a lot of learning myself and developed some treatment plans and protocols that I wanted to share with everybody as well. So a little bit of an outline, we'll talk about what functional neurological disorders are, describe their pathophysiology and etiology, talk about how we make a diagnosis and share that with the patient and their family, and then discuss some treatments that are available and where we fit into that process for the patient. So I wanna start with a case that I had. This was a patient that was referred to see me in clinic with a specific referral from neurology to see should they be admitted to the hospital for their symptoms? And specifically, could we do rehab with them? And the chief complaint was that this child had lower extremity weakness and numbness, and it's a 10-year-old female, previously only had a history of hypermobility, but about 10 months ago started falling and having episodes where she would pass out and seem to lose consciousness and her head would kind of slump down, but she'd stay sitting up. And then she also developed paralysis of her legs that was temporary, but would last for hours and sometimes up to days. Because of this paralysis happening, she went into the emergency department where she had an MRI of her head and total spine. It was described as unremarkable, and within a few hours was able to get up and walk again and was sent home, and recalls being told it was nothing. She was appropriately referred to neurology who made a FND diagnosis, but family said they weren't really given any further explanation of what was going on. She was referred to physical therapy, but wasn't able to go to most of the visits primarily because she didn't have a way to get there if the paralysis was happening, and because she was passing out and not able to be kind of awake and participating in therapy. And they felt they weren't really making any progress with this. She was referred to psychiatry, but refused to go because both this patient and her parents felt it wasn't necessary because the problem was mostly with her legs and how they were working. The parents had looked up the diagnosis on Google and felt they understood it pretty well. And then in her social life and her general functioning, patients stopped going to school in the physical school and joined a virtual school, primarily because of her difficulty with mobility and her passing out, and she wasn't able to be awake for a good portion of the day. Today, when I was seeing her in clinic, she described she wasn't going to school, but she was participating in the virtual school. She wasn't going to church, which was very important for her. And at home, she was starting to be carried around to go from her bedroom to the bathroom and is now asking for a wheelchair. She reports feeling anxious and thinks she has anxiety. And family are reporting during her episodes where she's passing out, they're checking her pulse ox because they're afraid she's going to stop breathing. And they report that they give some excess attention to her when she has an episode. So when her head slumps down, they go and catch her. They let her rest on them. They fan her face. They keep asking her, are you all right? Are you all right? Until she wakes up. And then they kind of pause what they've been doing for a while to make sure she's feeling okay before they get back to their activities. So we'll come back to this patient and kind of what I did for them. And we can talk about what we could offer for them later. And we'll talk about that more at the end of the talk. Let's go back to what are functional neurological disorders. So FND describes neurological symptoms that could include weakness, tremor, numbness, or blackouts that are related to how the functioning of the movement and sensation parts of the nervous system are working. It is caused by the functioning of the nervous system having difficulties. And that's in opposition to having problems with the structure of the nervous system. And then FND does have positive diagnostic features. And it causes day-to-day difficulties for individuals who have FND symptoms. Another definition that was put out in the Lancet Neurology in 2022 is that FND is a clinical syndrome consisting of symptoms and signs of genuinely experienced alterations in motor sensory or cognitive performance that are distressing or impairing. And they have one or more patterns of deficits that are consistent with dysfunction of the nervous system. And this is what's important is that it shows variability in performance within the same task and between different tasks. And that variability is pretty key. That's what gives some people pause when they see patients with this diagnosis if they aren't familiar with it, but it's something that we see very specifically in FND. So there have been lots of different names over time for functional neurological disorder. Most recently, conversion disorder was the name and that was part of DSM-IV. Now with DSM-V, we have kind of switched over and accepted functional neurological disorder. But other names that are used in the past were non-organic symptoms, psychosomatic, somatization. Way, way, way back, we called it hysteria. Sometimes it's described as medically unexplained symptoms. And then for one subset of FND, which are functional seizures. In the past, we called them pseudoseizures or psychogenic non-epileptic seizures, PNES. Now FND is often inappropriately confused with malingering or fictitious disorders. And we'll talk a little bit about that difference in the future. There are generally four major subtypes of functional neurological disorders. And first being functional movement disorders or FMD for short. And this is what we most commonly see in pediatric rehab. Second would be functional seizures, which unfortunately are still being referred to quite often as the non-epileptic seizures in the neurology realm or NES. And then finally, we won't talk about these today but functional cognitive disorders and functional dizziness which has its own name. Both of those have their own positive signs that we can find in their own treatment recommendations. So within functional movement disorders, there are a lot of different movements we typically see but we can see tremors, spasms or twitches, gait disorders, dystonia, weakness, speech and swallowing symptoms. And then within functional seizures, in addition to what you typically think of with functional seizures or those non-epileptic seizures, we can also have drop attacks where you have a loss of strength or loss of kind of awareness or dissociative episodes where the individual feels they just aren't quite in control of their body. So who gets FMD? It can affect any age and we see it across the globe in all different cultures. It's predominantly seen in females and it is incredibly common. For children and adults, the second most common outpatient neurology consult reason, the first being headaches. And it's quite prevalent and there are about 300,000 people in the USA with it and that's in the adult population as well. The caregiver burden for individuals with FMD is quite significant and the cost of healthcare for these individuals is also very high. In fact, the inpatient pediatric costs for individuals with FMD in the United States is roughly the same as that for demyelinating diseases. And despite having the same costs, research has shown that individuals with FMD tend to have shorter hospital stays, but more workup and unfortunately less therapy or psychiatry or psychology consults. So in FMD, we can see some changes in how the nervous system is functioning and it primarily affects a few different areas of the brain. But overall, we see an abnormality in some higher order cognitive function in FMD and primarily in the areas of attention and our sense of agency or the feeling of control that we have over our own body movements. We also see a dysfunction of our sensory processing or our motor or thought output. And overall, there's alteration in how our brain networks are functioning, again, in opposition to how the brain networks are structured. And so one explanation we often use for our patients is that we use the analogy of FMD being a software problem in our body, not a hardware problem where there'd be a structural problem in the brain. So in FMD, we typically see disturbances in attention and self-agency, how we feel in control of our body, but also in how we're predicting what is going to happen in our body and changes in our emotional and threat processing. And prediction is really important because our brain works on a prediction system. If we were to only act on information that we took in, processed, and then led to motor output, it'd be way too slow for daily functioning. So constantly, our brain is predicting what it's going to have happen, what it's going to perceive and what it should do and causing motor output based on that prediction. And in FMD, we can see that prediction can be abnormal or altered. In FMD, we also see a lot of changes in stress and emotion, but also attention, like I've mentioned before. And in FMD, when we have increased attention to our symptoms, we see more difficulty or more symptoms come out. Specifically with deliberate or voluntary movements, we have difficulty. So if you ask an individual with FMD that has functional paralysis or weakness of their legs, and you say, raise your leg, they might not be able to do that. But as you're talking with them and watching what they're doing, they might be shifting their position on the exam table, they might be crossing their legs. So you can see they can clearly raise their leg to some degree. And that's because those movements that they were doing were automatic movements. And these automatic movements are very easy for them to do because they follow a different motor program. So it's a different software system that's being used. We also see in individuals with FMD that they can have abnormal stress reactivity and abnormal regulation of emotion. And in fact, in functional MRI and in other studies that have been done on individuals with FMD, we have seen increased activity in the limbic system in individuals with FMD, talking about that emotional regulation, increased concentrations of cortisol in the blood, and increased heart rate variability. Talking a little more about functional neuroimaging. I don't have pictures of functional MRIs in this presentation, but they are available out there. Functional seizures have been shown on functional neuroimaging, where we see increased connectivity between the insular motor and parietal areas and functional movement disorders. We can see differences in the basal ganglia volume and volume of the gray matter. In functional dizziness, which we're not gonna talk further about, they also saw very specific areas with decreased activity and connectivity. And so we can see very specific changes in an FMD brain on functional neuroimaging. And the reference down here in the bottom corner is one that talks about functional neuroimaging. So people can go back to that later if you wanna see more about it. But overall, there are quite a lot of areas of the brain that are involved in functional neurological disorders. And there are tons and tons of connections between all of these different areas. And this is just one picture that shows in color all the different areas of the brain that are affected by FMD or can be affected in FMD. And all the arrows and dotted lines connecting them show the connections between those different areas of the brain. And overall, we see that altered activity and connections between those areas involved in our motor planning and our motor execution, and then in emotional regulation and processing, how we're paying attention to things and in our sensory processing. So talking a little bit more just of the areas that are affected. Some of the primary areas that we talk about are the temporal parietal junction, and then also the dorsolateral prefrontal cortex, which is the area that helps us with our intention for movements. And then also the supplementary motor area, which also helps with planning of movements. So although we do see changes in neuroimaging in individuals with functional neurological disorder in our studies that have been done, we aren't really using neuroimaging diagnostically at this time. One thing I wanna point out is that FMD looks very different on neuroimaging from individuals that have structural abnormalities, but also from individuals that have feigned symptoms. So we see very different levels of activity in the various brain structures in individuals that are being told to feign symptoms during that FMRI. So overall, what leads to FMD? Why might somebody get it? There are a lot of things that can play into getting FMD. We have predisposing factors that put somebody at risk, triggering events that might kind of push them over the edge and be that straw that broke the camel's back. There are comorbidities that we can commonly see, and then also perpetuating factors that may make it difficult for recovery or prevent recovery. So we'll talk more about those. Predisposing factors could be an individual having other functional disorders, such as functional pain, irritable bowel syndrome, other neurological conditions like MS, or even having had a concussion in the past. Genetics can play into this, having a history of anxiety or depression or stressful life events or childhood adversity. But also notably, many or some individuals have no predisposing factors that we can identify. We can also have triggering events that can happen that may lead to FMD symptoms at the beginning or to exacerbation of symptoms. And this might be any sort of physical injury, having a panic attack, having a migraine or headaches, having any sort of neurologic illness, or having dissociative events, also drug effects, or even just having a minor head injury like a concussion. We do see a lot of people, somebody was asking if we see individuals with Ehlers-Danlos. I do see a fair amount of individuals with Ehlers-Danlos that have functional neurological disorders. And I think some of it is, this is another medical condition that they can have that might be one of those predisposing factors. The other thing are comorbidities. So again, EDS could be one of the comorbidities, but very common ones are depression, anxiety or agoraphobia, PTSD, history of immobility or new immobility, sleep problems, dissociation, and avoidance type behaviors. Now, not everybody that has FMD has one of these comorbidities, but we often are looking for these in our individuals that we see. And then talking about perpetuating factors, what might make it difficult for somebody to get better? Primarily, we see a lot of individuals with FMD feel that they are disbelieved, that either their medical providers don't believe their diagnosis or their symptoms, or that their family or friends or school don't believe it. Many individuals can also have some degree of medical uncertainty, and that might be on their own part or from their medical providers that we state, we just don't know what's going on. They may also be misdiagnosed as having another condition of having some other neurological illness, and so they aren't able to seek the appropriate care for FMD. Some individuals also are getting unnecessary investigations and treatments, and that could prolong the time to their appropriate diagnosis and treatment. And then some people have a low motivation for change, or have obstacles to their recovery. These might be out of the hands of our patients, especially as we're seeing kids, some of these obstacles might be the parent's ability to bring them to treatment or to seek out treatment, or again, having less supportive people around them. And then finally, lack of treatment options. We probably all experience difficulty finding places for our kids to be treated. So overall, we put together these predisposing factors, the triggering events, the comorbidities, and the perpetuating factors, and they all play into if somebody might develop FMD symptoms. Now, some people might have these predisposing factors and triggering events, but they have normal re-adaptation, and they don't have any FMD symptoms that happen, or if they have had FMD in the past and they have some symptoms, they're able to recover very quickly. And so we don't know why one person might go on to have FMD symptoms and another doesn't, but overall, we can see just a group from any of these individual boxes that can play into it. So how do we diagnose FMD? I mentioned that we aren't using functional MRI for a diagnosis, but we diagnose it clinically. An FMD is not a diagnosis of exclusion, and in the past, we used to think that it was. In fact, there are very specific positive or inclusive signs and exam findings that we have for FMD, and I'll talk a little bit about those so that we can recognize them as well. We also do have to remember that other neurological conditions can coexist in individuals with FMD, specifically in the patients that we see. We commonly might have patients that also have seizures or MS, or MS, even a new diagnosis at this time, or strokes, and that can be one of those predisposing factors that leads to FMD. In diagnosing FMD, we don't wanna make a diagnosis based on somebody having a psychiatric history or based on them presenting in a weird and abnormal way. We wanna use actual specific signs that we're looking for. There are some key elements in the history that a patient might have that help us make an FND diagnosis. First is having a very sudden onset of symptoms. Second, having a lot of variability in their symptoms. This might be variability dependent on the time of day, sometimes with symptoms being worse as we've been more active throughout the day. Could be variability in our body position or variability in different social situations or when an individual is being observed or not. And also variability based on the attention that we're paying to symptoms, where we see they may have worse symptoms when they're paying attention to that specific symptom and they improve when they're being distracted. And then we also see typically normal habitual movements. And those are, you know, those automatic movements that we all do, shifting position in a chair and things like that. Now, as promised, I'm going to talk just a brief bit about feigning. So fictitious disorders where you're simulating symptoms willfully to seek medical care or to obtain medical care or malingering where you're simulating symptoms willfully for other personal gains. And these are very different from FND. And one way to tell them apart is that willfulness and what we're doing. And in feigning, we see that there is a discrepancy between the reported ability and the observed activity that they're able to do. So a patient might come in and say, I'm not able to walk, but you go out in the community and you see them playing baseball or basketball in the park and they're clearly walking. And then feigning, the patient isn't reporting that variability and what they're able to do from time to time. And FND, it's a little different. They still will come in and say, I can't walk. My legs are weak and I need to use a wheelchair sometimes. But then they also say, but sometimes I'm stronger and I might be able to walk to the bathroom some days or I can play with friends, but I can't walk when I'm at school. So in FND, the patient's reporting their variability that they have. So they're stating they can't walk, but they notice, yeah, I can in some situations. So that's kind of one key difference that we can see between this feigning and between FND. So what are these positive diagnostic signs that we see in FND? Well, for each different type of symptom, there are some different signs that we can look for. And right here, I'm gonna talk primarily about the functional movement disorders, but even for functional seizures and for the dizziness and cognitive disorders, they all have their own positive diagnostic signs that you can look for. So let's start with tremor. In tremor, one sign that we can see is what's called the whack-a-mole sign. So in a functional tremor, an individual might have kind of shaking of one of their limbs, their hand is moving. If you hold down that area that's tremoring, we see that the tremor moves to different areas of their body, where if you're holding their hand still, all of a sudden the tremor moves up to their elbow and then up to their shoulder. And if you hold that whole limb in place, it might move over to the other side of their body. So you can chase the tremor throughout their body. We can also see entrainment or cessation of that tremor with acute rhythm. So again, if their hand is shaking and you ask them to tap out a very specific rhythm or copy the rhythm you're tapping with their other hand, you'll notice that their tremor inside is starting to take on that same rhythm and their tremor changes. We can also see in functional tremors that if you add weight onto the limb that is having a tremor, that their amplitude actually increases. And this is different than in what I'll call organic tremors, where we actually see improvement in the tremor when we're adding weight to it. Now, more commonly we in pediatric rehab might see functional dystonia. And some common presentations would be a fixed inverted or plantar flexed ankle or a fixed clenched fist. You all may be thinking, this is what we see in other types of dystonia anyway, what's the difference? And that's true. So we have to look for some other signs that might be going on. And it's somewhat more rare for me to see individuals with only a dystonia and no other functional symptoms, but it can happen. In some individuals who have functional dystonia that might include a hemifacial spasm, we can see some specific differences where they might have a downward lip pulling, they lack raising of the eyebrow, or they might also have spasm of the platysma muscle. In functional gait or functional balance issues, which I would say is probably what we most commonly see in pediatric rehab, we can see some very specific gait types that I'll talk a little bit more about in a moment. But again, we see that variability or improvement in their gait or balance with distraction. And in fact, we see very excellent balance where they may be moving very significantly, but always catching themselves. And these individuals tend to fall towards areas where they have support. So if they're standing in a hallway and there's a wall over to their right side, they'll tend to fall towards that wall rather than falling to the area that doesn't have any support. And in fact, may fall quite a long distance to where there is support instead of kind of falling right where they are. There's also something called the huffing and puffing signs where they might grunt and grimace and have breath holding with just very small amounts of exertion or exercise. And individuals can tend to take a very non-economic posture where they're actually using a lot more muscles than they are reporting that they have strength to use. So they might be in a crouched position or so. And then some very common types of gait would be a dragging leg, knee buckling gait, and walking on ice. So the dragging leg is when somebody might have a monoplegic leg. That leg is just dragging behind them with the foot either pointed inward or outward. And it seems like that foot is stuck to the ground almost like it's being attracted by a maintenance. And this is very different from typical hemiplegia or monoplegia where we would usually see an individual circumducting their leg or doing some steppage to clear a dropped foot. Here, that leg is just dragging straight behind them. And a knee buckling gait, they may have buckling of one or both knees with almost every step or every other step. And it can lead to a drop attack where they fall to the ground without a blackout. But they tend not to have major injuries with their falls. Now they tend not to, sometimes they can get scratches or bruises or things like that. Another type would be a walking on ice gait that's often associated with an individual who had a fear of falling before or maybe had a fall in the past. And here they keep their feet wide apart. They take very small, slow steps with stiff legs. Another one is a swaying gait where their upper body might move from side to side quite a lot and their legs are correcting those movements. It looks like they're going to fall over, but then they catch themselves. And then a hyperkinetic gait where they have a lot of excessive movements, either with their upper or lower extremities or their trunk. And these might be movements that are just not typically seen in a normal gait. And then rarely we might see a crouching gait where somebody is crouched quite low to the ground. And again, this is often associated with somebody who maybe had had a fall in the past as a triggering event and may have a fear of falling as well. So this is just a picture of that dragging leg where you can see the toe is either pointed in or out and just drags straight behind you. And so in functional weakness, there are also some very positive diagnostic signs that are easy to notice. Again, we might see some of that inconsistency in strength. For example, in that knee buckling gait, somebody might have really poor quad strength on testing of like a manual muscle test, but when, or sorry, very good quad strength on the manual muscle test, but when they stand up, we see that their knee is buckling. They may have changes with position. So seated versus standing, their strength is very different. They can have collapsing weakness. And then two specific signs that I have some pictures about in a second are Hoover sign and the hip abductor sign. And you can also see drift without pronation. So if you're testing that pronator drift, having them hold their hands out in front of them with the palms up, if you see one arm start to fall down, but not get pronation, that is a sign of functional weakness. And then something called supine falling knee. So if somebody is laying supine and you bring their knees up kind of like they're in the sit up position and you let go of their knees and functional symptoms, their legs might stay in position where they all are, but in more organic weakness, they'll fall down to the bed. So here is that Hoover sign. And in the past, some of us may have been taught that Hoover sign is something to use to look for feigning or malingering. But in fact, it's actually a diagnostic sign that we can use to find functional neurological symptoms. So for example, for somebody who is presenting with left lower extremity weakness, you can do this either with them seated or in the supine position, but you would tell them, push your left heel down into the ground. So you're testing hip extension strength there. And if they have left-sided weakness, you'll be able to easily lift that leg up against the resistance they're trying to give you. Now, if you go to their right leg, their normal functioning leg, you can ask them to lift your right leg up in the air. So have them do hip flexion. And now, as you try to just lift their left leg, their weak leg, you notice you can no longer do it. So they're doing left hip extension. And this, we can see in FND, because now when we're testing their right leg, they're paying attention to that good leg. They're no longer paying attention to the functional symptom. So all of a sudden, that hip extension strength has gone from being a volitional movement to an automatic type movement. Similarly, we can do a hip abductor sign. Again, if somebody had functional left lower extremity weakness, you can have them seated in a chair, put your hand against their left knee, on the outside of their left knee, and ask them to push out or abduct their hips. And you notice they have no effect. You can easily push their knee inward. But now when you ask them to move their good leg, their right side, and push out against you, and you push on both sides, you notice now you can no longer overcome that strength they have on the left side. So this again shows when you're trying to volitionally move that weak leg, you're paying attention to your symptoms, so you can't do it. But when you're trying to move the other side and paying attention there, all of a sudden that automatic movement clicks in. Now, how do you tell the difference between this and feigning? Some of it is with how they report the symptoms happening, and getting more of that history. Is it sudden that it happened? Is it gradual? And what are we noticing in the room? So that difference between feigning takes a little more of kind of that history and that discussion with the patient. So how can we use these diagnostic signs, these positive signs, as a treatment as well? Well, as I mentioned, when we talked about that Hoover sign or the hip abduction sign, you notice that when we're paying attention to something else, all of a sudden, that automatic movement is working. And so we can describe to a patient what we're seeing so that they can better understand what's going on in their own body and let them know that, hey, motor function is preserved. It's, and they might have more ability than they thought possible. It's just, we have to go about eliciting that motor function in a different way. So some real life examples of what you can say to the patient as you're doing this, we can say, there's a problem with your brain doing voluntary movements. For example, trying to extend your leg or push it down into the bed. But your brain has no difficulty doing automatic movements like extending your leg when you're thinking about your other leg. So let's find a therapy that promotes automatic movements. And you can do that by using distractions to bring out more automatic movements and trying to retrain the brain. And so distractions tend to be a key component of the therapy that we're doing for the treatment. So when we describe these positive diagnostic signs to the patient, we help them better understand the problem that they're having. We can help them realize that they can get better, that they do have some of those preserved movements and that we can improve when we give them those distractions. By discussing the positive signs, we become much more transparent in giving the diagnosis. And this builds a lot of trust with the patient. And as I said, one of those perpetuating factors of F and D is that they often feel that they aren't believed and aren't trusted. And there's a question, where am I treating my patients? I'm primarily doing inpatient rehab. I do a little handful of clinic evaluations primarily to see, do they need to come to our inpatient rehab? But that's just because of the way our clinics are set up that we don't tend to be the first ones to see patients with F and D. So one thing we have to be careful for with special tests is we don't want patients to have us think that we're catching them doing good activities. So that's why I'm very transparent with what I'm seeing. I say, look, I'm seeing this movement, that's good. It's helping me make a diagnosis. I'm not trying to catch you and see you, you know, accidentally doing this movement while I'm watching. So I describe very specifically, this is what we expect to see in F and D. And it's a good thing that we're seeing this sign. So the opportunities for treatment associated with all these positive signs that we can see in tremor, we can give them alternative tasks to complete at the same time as having that tremor. So working on kind of that entrainment and distraction. In dystonia, we can use a sensory trick for kind of like tapping the area if they're having a spasm or giving them some alternative sensory feedback. And functional gait abnormalities, we can try to vary their gait. So a type of distraction or making their gait different, make them think about something else, like trying to focus on walking backwards or walking sideways or asking them to do a funny walk, like make them pretend they're skating or make them do like a duck walk or something like that. And again, shifts the focus away from the functional symptom onto something else. You can change their speed, give them obstacles to go around or give them a distraction, like tossing a ball or kicking a soccer ball as they're trying to walk. And functional weakness, again, point out those inconsistencies in their strength, discuss those positive signs that you see. And again, use distractions like singing songs, playing a game as you're working on movements like sit to stand or things like that. So we've talked about how to diagnose FND, but another question is who should diagnose FND? Now, typically individuals with FND are being seen first by a neurologist or sometimes by a psychiatrist. Primarily it is neurologists that are making the FND diagnosis. So what's our role in this? Our role often is to reiterate a diagnosis. So especially on the inpatient rehab side, we're not usually the first person to evaluate a person's abnormal movements. They've seen the emergency department, they've seen the neurology team, maybe they've seen psychiatry, but we're there to go in and help support that original diagnosis. And so with us kind of doing our own evaluation and discussing what we're seeing, we're letting the family and the patient know that we're familiar with FND and we're developing that trusting relationship. And by performing our own history and exam, it can help us understand all of their symptoms and what they're presenting with to help us refine our treatment. And we can look for different areas of education that might be lacking for the patient or their family and help identify what their primary goals are. Because the treatment that we might give somebody is very different if their primary goal is, I want to get back to school versus my primary goal is, I just want to avoid seeing anybody. So we have different things that we want to work on. Also in rehab, when I'm evaluating a patient with FND to talk about, should we do inpatient rehab or what sort of treatments we should offer in general, I want to ensure that we have buy-in from both the patient and their family for the diagnosis. Because without buy-in saying, yes, this is the correct diagnosis, it again leads to some of that diagnostic uncertainty for the family. It doesn't let them accept the treatment that they might need. And it can be very difficult or sometimes even impossible to effectively treat the FND. Then overall, we want to instill confidence in the patient. Confidence in us having knowledge about FND, confidence that we know what the treatments might be and confidence in themselves that they can work on this and can see improvement. So overall, how do we deliver a diagnosis of FND? And again, this might be, how do we reiterate a diagnosis of FND? First, we want to name the condition. Say, this is functional neurological disorder. Make sure that's very clear. Then emphasize that our physical exam is the basis of our diagnosis. So pointing out those positive signs that we saw. Then explaining the FND is a real diagnosis. It's common, it's based in the brain and it's very treatable in many patients. Then letting the patient know we're addressing kind of head-on. They aren't crazy. They are not making up their symptoms, stating, I truly believe you. I see the symptoms that you're having and kind of stating these are common in what we're seeing in FND. And then providing an explanatory model. So I often use the FND as a software problem rather than a hardware problem in our brain. Then we also want to provide educational materials for the patient. So we don't need to be the end-all be-all about education but there are some really good websites. Neurosymptoms.org is a wonderful website with lots of different information about the wide array of functional symptoms that can exist, including pain as well, I believe. And then FNDhope.org is another website that has recently put out a patient booklet that's free to download as a PDF and free to request print copies of for patients or their families that describes what FND is so they can have it to give to their family members, other providers, their school, and other people. We also want to, as we're delivering diagnosis of FND, discuss what's going on and not speculate on the why. We don't need to talk about the predisposing factors, try to find a trauma history, or anxiety, or things like that. That can be safe for longitudinal treatment. You don't need to go into it kind of right at the beginning. And then avoid talking at the patient for a long time. Like I've been talking at you for a long time, you kind of tend to check out after a little bit of time. So we want to leave a lot of time for the patient to kind of ask questions as we're going. And then finally, take your time. Very often some of my evaluations for kids with FND can take an hour or even two, and trying to rush through it again leads to some of that feeling of disbelief. So going back to that explaining FND of, you know, is a software or hardware analogy, I have some wording on here of how do I talk to an individual and tell a child about that software analogy. So some common things that I have patients say back to me is, well somebody told me it's all in my head and that made me really mad. And my response often is, well it's only as much in your brain, or it's only in your head for as much as your brain is in your head. So this is a problem of how the brain is functioning. And FND is a brain-based problem and is a real problem. It's not imagined, it's not faked, and it's not solely caused by stress or anxiety. Another thing people will go on to say is, well if it's not all in my head, then why do I need psychotherapy or why do I need to see psychiatry? And I like to talk about how, you know, neurology or, you know, these brain-based problems and psychiatry and psychology both deal with problems of the brain, but they come at their treatment from very different angles. And so that psychotherapy is a form of brain retraining, just like physical therapy might be a form of retraining the body. Treating FND, one thing we want to remember is that FND is treatable, but it's not a quick fix. Although sometimes it can be an overnight change. FND treatment is multidisciplinary and it's very individualized based on the individual symptoms. Our treatment is focused on teaching them how to retrain their brain, and it's a combination of physical therapy, turning those voluntary into automatic movements and using distractions, psychotherapy, psychiatry, and then again, sometimes working with us in rehab to help restore their function. And treatment does require some ongoing care. We also need to treat any coexisting conditions that might be happening in these individuals, and then seeing them sometimes in follow-up, where we can reassess symptoms that they're having, make a diagnosis that there might be some other condition happening or they have new FND symptoms, and it might help them avoid going into the emergency department. Then also providing some anticipatory guidance that these symptoms can wax and wane over time. And sometimes even though they're still improving in general, it might feel like they're back to square one, that they've had kind of a relapse, a recurrence of their symptoms, but we know they're still going to keep getting better. So what is the treatment in physical therapy? So it's very different than how we would treat somebody with, say, weakness or dystonia because they had a stroke. So in a stroke, we might focus very heavily on the affected limb, do some isolated strengthening exercises. Then FND, we do quite the opposite. We use distractions. We don't want to think about that limb. We want to preserve and harness their preserved automatic movements and wean them away from using assistive devices. Now with that said, yes, we do sometimes use assistive devices, only as much as what is required for them to stay functional. So we might use a device like a wheelchair to help them be able to go to school, but giving them those devices with a very clear explanation for when we're going to wean out of it and how we're going to wean out of it and that its purpose is only to get them to those activities that they still need to be doing. PT can also help patients develop plans for pacing their activities throughout the day and across days and doing some goal-setting. This overlaps a little bit with the psychotherapy that they're getting, which typically addresses some autonomic dysfunction, can work on relaxation and grounding or mindfulness techniques, and again, some goal-setting. Psychotherapy often consists of CBT, but also can address some PTSD if there was that in the history. And then patients can do some individual self-help to help reduce stress that might be going on with yoga or massage or meditation, taking time off or short breaks throughout the day, having very small rewards, but we try to avoid lots of rewards, especially like on an inpatient rehab stay. We don't promote excessive presence or things like that. And then finding hobbies that make them happy. And then we like to have people return to regular activity. So I do tell my patients that our goal is an early and successful return to school, and sometimes we're starting with partial days, often then moving to full days as we've built up some of that tolerance. But we make a plan and say, yes, the plan is to go back to school. If we postpone returning to school until their symptoms have resolved, we've kind of developed a bit of anticipation and sometimes can make going back to school much more difficult. We also share the diagnosis with the school and use assistive devices to facilitate them getting back to school. So even if they're still having weakness or paralysis, then we might give them a wheelchair so they can physically make it into school. I often provide a letter for school that describes how do we react in the moment. If somebody is having functional symptoms, we don't want to draw attention to the patient or to their symptoms. So we don't have teachers go up to them and say, oh, are you okay? Are you okay? We want to kind of let the patient have time on their own to work through their symptoms. And this might mean they need to be allowed some short breaks from class to go and use some of their grounding or relaxation strategies. Then we also want to know when we help or not help. For example, pushing the wheelchair, they may be expected to use their feet to propel it on their own. Or if a patient tends to fall, do we let them fall and get up on their own? Or do they need to have somebody there to catch them? And usually we don't want to have somebody there catching them all the time. Then also we want to return to fun and friends and regular activities. And sometimes we need to tell others, like family, extended family members, how do you react to my child when they're having these symptoms? And again, using assistive devices to facilitate getting back out into the community and doing regular activities, but not then relying on the assistive devices at all times. And then we also need to do some pacing and planning of our day and our activities. So some things to avoid in treatment is we don't want to give unrealistic expectations. So the treatment, the improvement with treatment can be slow and gradual. Some people don't fully improve. And we can have relapses. We don't want to ignore comorbid conditions. We don't want to assume all new symptoms are F and D related. And then we want to give equipment if it's absolutely needed or give you accommodations. But we don't want to give those without a wean plan. And so kind of back to my patient who was passing out, not going to school, had that weakness, hyper focused on symptoms. You know, we talked about all of their symptoms, discuss how it was variable, discussed how it's not nothing. It's an actual diagnosis with true symptoms that they're having. It's treatable. We talked about their mobility where they're being carried at home. Sometimes it turns out dad was carrying the patient to and from the bathroom. Mom was having the patient walk. So we discussed, okay, we're going to walk all the time to the bathroom and back. And we did end up giving them a wheelchair specifically for them to go to school, but not to use in their home when they were able to move on their own. For PT, again, we had that wheelchair so they could get to their physical therapy visits. And we discussed going despite having symptoms and working during that time that they were able to. And we noticed over time, their symptoms got less and less and they were able to do more participation. I sent a message specifically to their physical therapist describing how we were using the wheelchair and what the plan was so they're on board with it. We referred them back to psychiatry and now the family was more on board with it and wanted to address the anxiety that they had. We made a plan to return to school with partial days at first and gave a letter for school. We discussed the patient's goal was for them to go back to church activities. So again, we used some equipment, but didn't want them using that equipment all the time. So they would get out of, she would get out of her wheelchair when she got to the physical location she was going to. And then for that focus on the symptoms, we told the family to stop giving special treatment to the episodes, to just kind of carry on, make sure the their daughter was safe during the episode. But then to carry on with their day and let her go back and participate when she was kind of back and aware. And overall, I didn't have to see the patient back in clinic. I didn't have to see them on inpatient rehab. And they, to my knowledge, have not come back to the emergency department since. And there's been a report this individual patient has had improvement and function, is no longer using the wheelchair, is back in school, back at church, but not walking fully normally yet. And then finally, I just want to give two of my favorite resources fndhope.org. Again, that one has some good information, that patient booklet that patients can print out or you can print out for yourselves. I use it for inpatient rehab to give to our patients and their families. And then the neurosymptoms.org. I know we had some in the chat. Yeah, it looks like we have a few questions in the chat. Thank you so much. Although you did a great job of answering the questions as you went, which I'm so impressed by. So one question is, how do you manage patients and their families who feel strongly that the child needs a more extensive workup? So for those patients and families, I really go over what are the positive signs that I've seen and try to describe it and say, this is how I'm making a diagnosis of FND. And then I leave it up to them. You know, do you feel that that's enough? Because sometimes they just never have been told those positive signs that we're seeing. And so they felt like they had to rule everything else out. And if the family still feels that they need further workup, I allow them to do it. On our inpatient service, if they're still seeking further workup, we don't take them onto our inpatient rehab service until they've kind of come to accept that. And so we actually have that as an exclusion criteria for admission. And another question was any, you know, speaking of inpatient rehab for FND, any difficulties getting insurance approval? I luckily have not had difficulties with insurance approval. I believe I've had to do one peer to peer, but I described how basically I used their FIM and they were doing poorly enough that we were able to get approval. With that said, we're primarily only taking individuals that have significant gait abnormalities or weakness with paralysis. So I tend not to take individuals with only upper extremity or only kind of like swallow speech issues. Have you had difficulty with patients who are not recovered to the point that family feels like they're ready to go home at the end of your recommended length of stay? Absolutely. So that was something that we had difficulty with, especially early on when we were doing these diagnoses. We've since learned to start at the onset and say, we are going to be admitting your child for a time limited stay. And we typically pick three weeks and say, we're going to work on seeing improvement. We're going to teach you about FND by specifically state, I can make no guarantee on where you're going to be functionally, what you're going to be doing at the end of your rehab stay and say, we'll see what we see. And families, you know, they're kind of like, oh, I want to guarantee I'm going to be walking again. My child's going to be walking again. But then we describe what we're going to be teaching them that will give them the tools to get better. And they'll keep doing therapy outpatient. And we state, you know, if it doesn't look like you're going to be walking by the time we're at the end of our three weeks, several days before that, we prepare them for how they're going to be moving around using a wheelchair or using whatever device. And we again, talk about, we're going to wean you out of this on an outpatient basis. So we're kind of preparing them for going home at their current function, but working on improvement. Then another question about someone who has experience with two patients who also have comorbid Ehlers-Danlos and symptoms of FND and their parents are both doctors. And I've definitely had that experience of patients with FND where the family or caregivers in the medical field as well. So wondering if you have experience with parents that are physicians or in the medical field, and if that approach is different because they might have a negative connotation with FND and or no dated terms and any tips for sensitively addressing that? Yes. So I've had some parents that are somewhat in the medical field. Also some parents that have their own functional diagnoses. And I kind of start out the same as I do with all patients. I start with the basics. I start with the description of what FND is, knowing that most people have learned about conversion disorder and all these other things. So they might not have the appropriate information. If I have parents that are doctors or more medically minded, I tend to use more medical terms in my description with them. And then I have a separate talk with their child using more easy verbiage. But I always start with the basics for everybody. I do ask their understanding at the beginning before I do any description of FND just to see where they're at. And it's often quite eye opening to hear what they've been told about FND before. I was also wondering, do you, are there any particular conversations that you like to have with parents separately from the patient? Yes. So usually at the beginning, I have some conversation with both the patient and the family about how we might be asking them to do some things that are very difficult for them to do. Like we might be asking them to try to stand when they have paralysis or to walk without support when they've always been holding on to other individuals. So I let the patient know that. And then separately with the family, I tell their parents, you know, it can be very difficult for your parent's sense to kind of let go of some of the control. But and you might want to jump in and help your child as we're doing this. But we ask that they do not and they listen to what our therapists are saying. And that's for kind of right at the beginning, those initial assessments. We don't tend to have family in the therapy sessions themselves. So that doesn't happen. But I let the parents specifically know, I need you to be a little hands off for your child while they're here in the hospital. For example, you know, give your child whatever it is to order their food on their own. Give your child the clothes and or make your child get the clothes on their own to get dressed every day. And we kind of put that in our rules for admission. And don't offer a wheelchair to your child if they're not supposed to have it. And so we kind of get a little more in the details of like, this is what I don't want you to do. We need to let your child be very independent. Yeah, I think acknowledging this, this is a little counterintuitive for being a parent. It goes a long way. Yep. With the parents, I also kind of address early on your child might have a fall where they, you know, we're letting them try to use their strength. And our therapist will be there and probably could catch your child if they were to go down to the ground. But we purposely probably won't. We're going to let them go down to the ground so then we can practice getting up and seeing what we can do. So I let the parents know that. I don't always tell the child that directly. Another thing I talk with parents about a little more than I do with the children is that we often can see these relapses. And I give the parents a lot of information that yep, we often see problems when you first go home. And when you first go back to school, or when, you know, there's other difficult life experiences coming up. Another question, what's a major difference between a conversion disorder and functional neurologic disorder? So there's really no difference. Functional Neurological Disorder is just the new name for conversion disorder. Conversion disorder just had different connotations for the patients, but it's no longer what we're using to describe these symptoms. Do you wait any specific time frame from diagnosis to admission to an inpatient unit? Yeah, so a lot of our patients that we're seeing have come to the emergency department with, you know, new symptoms, they get admitted for workup. We don't have any specific timeframe that we wait, but we have specific conditions that need to apply that the patient needs to have been given the FND diagnosis. The family has to accept it. I have to go see them to make sure they truly understand the diagnosis and accept it. And the medical team and the patient need to agree that we aren't doing further workup of a neurologic condition. Great, I think that that was all the questions. That was wonderful and a lot of interest in this topic. So thank you so much for this lecture. And thank you to the audience for all of your patience with some technical difficulties earlier on. Come on, lots of thank yous and gratefulness for the talk. Well, thank you everybody for listening. I'm sorry about that slightly late start. But hopefully you feel a little more confident in seeing these patients, talking with them about the diagnosis and giving them some treatment.

functional neurological disorders

diagnosis

treatment

nervous system

abnormal movements

multidisciplinary treatment

physical therapy

psychotherapy

recovery