Megan Shelton, PhD and Catherine Pike, PhD provide an overview of Functional Neurological Symptom Disorder (FNSD) diagnosis and tips for taking about FNSD with patients and their families.
Good morning, everyone. I we'll go ahead and get started. Thank you for joining Early Bird Rounds today. We have Doctor Megan Shelton and Doctor Catherine Pike, who are both part of the psychology services team with the Saint Louis Children's Hospital, but we are speakers today, and we'll go ahead and turn our attention to them. Great. Thank you so much and thanks to everyone for being here this morning. Uh, we're excited uh to talk with everybody today about taking care of kids who've been diagnosed with functional neurological symptom disorder and the multidisciplinary approach for that. So, uh, Kath and I will be talking about all the different components to that here today. We do not have any financial conflicts of interest to report. So let's talk a little bit about the objectives of the day to get started. So first and foremost, we certainly wanna just provide an overview of functional neurological symptom disorder. You might hear us use the acronym FNSD FND throughout the presentation today, but we wanna just to level set everybody and the criteria for that and how um the diagnosis is made. Um, but more importantly, we wanna help you as physicians develop strategies to be able to talk about the FNSD diagnosis to patients and families. We certainly understand as pediatricians, you may not be the ones who are diagnosing this for a family, but we certainly know that your trusted partners in these families care. Um, and so we want you to be able to have strategies for talking about the diagnosis and the care with them. We're gonna review the multidisciplinary treatment approach and the components and what that can look like for each family. Um, and then also, we're gonna identify the roles of the various components. So we'll talk about what we in psychology do with these patients, what our therapy services partners do in PTOT and speech language. Um, and then we're also gonna talk about what could be helpful, um, as your role as a pediatrician within the care of FNSD for your patients. And then finally, um, we're gonna help you identify and develop some strategies for setting up patients and families for the treatment and for successful treatment more than anything. So we thought it'd be helpful to give some context to who we are, um, and how we meet patients. Um, so Kath and I, along with our, um, colleague, Doctor Suzanne Thompson, um, call ourselves the functional rehabilitation team, really. Um, our treatment is really specialized in different. Than what patients are going to be able to find in the general community. Um, so we really, um, wanna, we're gonna talk a little bit more about that, but we wanted to help you understand the types of patients that we're seeing beyond kids who have functional neurological symptom disorder. Um, so we treat kids who have somatic symptom disorders. Chronic pain disorders like headaches, abdominal pain, neuropathic pain, all those musculoskeletal pain disorders, um, disorders of the great gut-brain interaction is a large part of what we do. We'll treat kids who have some post-viral symptoms or conditions like long COVID, um, but what we're gonna talk about today is more importantly, treatment of FMSD. Although the three of us have a broad range of who we treat, the common thread of all of these, um, conditions is that they tend to cause significant interference in daily functioning for our patients. And so we can use this common treatment of the functional rehabilitation model to take care of all these kids. We need our patients in a couple of different ways. Um, one is just through traditional outpatient referral through Epic. Um, but we also need a substantial portion of our patients through the pediatric Complex Pain Management clinic, all of which 3 of us participate in. And what we're finding is, although we're primarily treating pain conditions in that clinic, we are seeing a higher and higher overlap of kids who have other functional conditions, including FNSD. Um, that clinic has a pain physician, or pain nurse practitioner, and then PT and psychology. So a family really is getting a multidisciplinary evaluation upfront to develop a multidisciplinary plan. The third way in which we might meet or treat patients is through the comfortability workshop. This is a licensed program out of Boston Children's Hospital that we deliver. It's an interactive one-day, 6-hour workshop that we really describe to families as a Crash course in cognitive behavioral therapy for the management of pain disorders. Um, in the last year, the program has expanded to include any kind of functional symptom. So, um, we can talk a little bit about that as a resource for your patient. OK. So starting just with this broader overview of what uh FNSD is. So for our DSM criteria, uh FNSD is gonna include the presence of one or more uh symptoms of altered voluntary motor or sensory function. So this can include weakness or paralysis, some abnormal movements like tremor or dystonic movement or gait. Uh, swallowing or speech symptoms, um, attacks or seizures, and epileptic seizures. Um, anesthesia or any kind of sensory loss or some special sensory symptoms, those would be visual, factory or hearing or just a combination of some mixed symptoms. And of course, like pretty much any diagnosis in the DSM, these symptoms uh should be causing clinically significant distress or impairment. And so in our most updated DSM 5TR they actually changed the um preferred name of this condition to functional neurological symptom disorder, as opposed to the kind of historical conversion disorder. And the reason for this change, uh, is really just due to updated research, indicating that the process of conversion, which is that physical manifestation of like psychological distress, it's actually not well established. Um, and this notion of this universal role of stress is not actually, uh, well supported. You know, many patients with this condition, um, May not have an identified trauma or a specific psychological stressor. All right. So, uh, you know, this is progress, uh, within our community, but this notion of conversion just seems to be very deeply rooted in the understanding within the, uh, the medical community just at large. And you know, even now, our data DSM-5 actually dropped the historical criteria for psychological inclusion, meaning that diagnosing FNSD is not based on abnormal psychology, um, but providers can specify if it's with or without a psychological stressor. Um, you know, there's evidence that rates of trauma, stress, psychiatric comorbidities are higher in patients with FNSD, but more recent research is demonstrating this low incidence of psychiatric diagnoses directly explaining patients symptoms, and trauma is really only present in about 1/3 of patients. So, This condition is really a process, um, can be, you know, thought of as a process of stress, just not always a result of a psychological stressor. Um, so we're encouraging providers to use consistent language when discussing this diagnosis with their patients, really trying to reinforce this FNSD terminology and trying to veer away from terms like psychogenic or conversion. You can go ahead and move forward, Megan. Yeah. So I know there's a lot to look at in this figure, um, but this was taken from a uh fairly recent article that I think really does a nice job of summarizing some more updated research pertaining to FNSD. I think this demonstrates just how complex the conceptualization of the FNSD can be. Uh, so there's several predisposing and precipitating factors, that's boxes 1 and 2 here, that's related to this condition. And yes, some of these are psychological. Uh, there's also several pathophysiological factors, right? So, such as other neurological or medical conditions. So for example, there's a large incidence of individuals who experience non-epileptic seizures who also have a history of epilepsy, right? Um, so at the core of this condition, we found to be there is this impaired bottom up sensory integration, as well as top-down prediction error and the sense of agency. And then some important perpetuating factors, so that's box 4, that I wanted to note here are diagnostic uncertainty, poor communication, and unnecessary medical testing, um, or treatment. And this is a complicated condition and many patients are gonna be primed um to be thinking of their physical symptoms within this medical model where there's kind of this dichotomy between the mind and the body. And poor understanding of the condition and then excessive medicalization of symptoms can really impede patients buy-in, um, and their progress and their treatment. And then under treatment, so box 5, I always like to note here that an adequate explanation of this disorder is actually considered a key factor in predicting recovery, which is why whenever we get the chance to give these presentations, we like to spend a little time discussing how to communicate the diagnosis uh to patients and families. So, Megan and I, uh, a psychologists, we actually cannot make this diagnosis, um, without the neurological exam. So therefore, we always kind of say, you know, we don't actually necessarily diagnose FNSD, but we do treat it. So, uh, it's typically the medical team, right, who's introducing this diagnosis for the first time and establishing this baseline level of patient knowledge and understanding of the condition. OK. So this uh picture, it depicts a little bit of a maybe what not to do in this scenario, right? Um, a little bit of humor there, but The problem is when patients are presented this message that, you know, quote, everything is normal. They then tend to report to us that they feel like their medical team is thinking that their symptoms are, you know, all in their head or that the patient is somehow causing or responsible for these symptoms, and that's gonna leave patients feeling defensive, maybe closed-minded, the types of interventions and treatments that we're thinking will really help to improve their functioning. So if you wanna move forward, Megan, when we are presenting the diagnosis, it's helpful to inform patients. That this FNSD um diagnosis may be on the differential, really as early as possible, um, to really increase patient buy-in and understanding that yes, this is a medical condition, and we will be assessing for it. Um, so part of the diagnostic criteria for FNSD is that clinical findings provide evidence of incompatibility between the symptom and recognized neurological or medical findings. So how this sometimes is going to play out is a ruling out process, right? Um, once medical providers are certain that they've sufficiently ruled out other known neurological or medical conditions, then sometimes they're feeling more comfortable to provide that FNSD diagnosis or determining symptoms perhaps as being more psycho psychosomatic, not a term we're usually using all that much. Um, and we wouldn't argue that there shouldn't be some ruling out, uh, within this diagnostic workup, but Reliance on the notion of medically unexplained symptoms as being like the essence of this diagnosis can be problematic, right? Cause that's gonna foster this mind-body dichotomy. In negative test results, you know, they don't always rule out physical symptoms, right? I mean, that's the case for lots of other things. IBS, migraines, fibromyalgia, yeah. So we think it's important that providers not just explain what's not I can't hear you. But what is there? Um, Uh, so these symptoms are a result from physiological conditioning and somatic pathways that impact one's ability to perceive physical sensations. So we understand that there's this misfiring, right? Within the nervous system where the brain and the body are not communicating smoothly, and they're sending some inaccurate messages. So sometimes, sorry, Megan, you can go ahead and move forward. We might use this analogy a lot in our work, um, this software versus hardware analogy. One way to explain this to patients is trying to relate their nervous system to a computer. So I often explain that just like a computer, our bodies have hardware, and they have softwares, the hardware being the physical kind of structural components of the nervous system, the software being how those components are communicating with one another. And our medical tests are showing that these symptoms are not a result of the hardware being damaged or broken, but rather the software is impaired. So the parts of the computer are not communicating with one another the way that they should be, kind of like a computer virus or a computer glitch, something like that. You can go ahead and move forward. So, it's important to validate, you know, patients' suffering, families concerned about these symptoms, and we do want to emphasize that these symptoms are not voluntary. So even when we present the diagnosis in terms of these kind of software glitches, some patients will still assume that this means that their providers are thinking that they are somehow producing these symptoms on purpose, which can lead them again to feeling defensive. And again, it's important to present the evidence of why there's not a structural cause and emphasize that the body can produce symptoms without a structural cause. Um, you might want to just come right out and say, you know what, these symptoms are not all in your head. Sometimes just putting it out there, pretty frankly, can be important. And then we want I think it's helpful to reframe a family's medical model to a more biopsychosocial one. we'll talk about using like maybe a visual aid for this or just talking more broadly about this illness experience. And it can be helpful for families to know that this diagnosis or problem, that it's common, right? That it's not just this bizarre thing that we never see that's super rare, um, cause we, we want to install confidence that recovery is possible, um, through treatment, just that maybe treatment's not gonna look like what they thought it would, what they might have expected. OK, you can move forward. Um, so this is a figure that we sometimes use, uh, with patients to help sort of broaden out their conceptualization, kind of move, shift more towards a biopsychosocial one. We should use this to explain to the patients that, you know, there's several other factors beyond just the physiological that's gonna contribute to the FNSD experience. So in the middle there, we would, you know, write functional neurological symptoms or We use the same, you know, for some of our other patient presentations, pain, fatigue, whatever. So, for example, symptoms, um, they get in the way of functioning, right? School, extracurricular activities, they interfere with our social interactions, and then we get isolated by friends when we can't attend school. Parents might get very worried, they might start excessively checking in or doing things for you that you used to do for yourself. And then these symptoms are gonna cause an emotional response, which may worsen any pre-existing mental health conditions. And then lastly, symptoms, you know, cause us to form some unhelpful habits like decreasing our physical activity or sleeping excessively. So each factor is both a result of the symptom, but it's also feeding into the symptom, right? Oh, you're muted, Megan. Yup, there we go. So, we're gonna talk now more about, OK, we've diagnosed FNSD, we're explaining this to the family. We're working towards explaining now, what is the treatment for this? What do we do about this? And really what research is telling us at this point is that a multidisciplinary approach, um, that then gets tailored to each patient is really the most effective treatment at this point. Um, again, The goal at this point is to retrain the mind and the body, uh, to communicate better, right? Like, as Kath said, we're, we're describing this as a software glitch where the communication system isn't working. So we're using behavioral strategies and cognitive strategies to teach the nervous system to calm, but then also reconnect is kind of how we're describing it to families. With the ultimate goal of getting back to their baseline functioning. And we're gonna, we're gonna come back to that point in a little bit. But the, the most evidence-based modalities of care include the ones listed here. So you've got behavioral health psychology where we're implementing cognitive behavioral therapy or what we now know is effective as acceptance and commitment therapy. We rely heavily as psychologists on our therapy services partners, so that could be physical therapy, occupational or speech therapy. Lots of families also do integrative medicine kinds of things, acupuncture, acupressure, chiropractics, those kinds of things which bring benefit to them. Um, and then also just talking to families about how to make changes in their environment. So when we say that, we're talking about how to set up routines, how to keep completing activities of daily living, how to help families respond to the symptoms and help their kid manage their symptoms when they're happening. And then importantly, consistent monitoring with a physician. So often that can be neurology, but again, as pediatricians, we certainly know that you are trusted partners and families care, and more than anything, we, we hear our patients saying, yeah, but I just want to check in with my pediatrician. I want to ask them or talk to them about this. Um, so those are really the things that we're kind of working to put together. OK. So this, this is a really just nice summary graphic of what um a treatment plan for functional neurological symptoms could look like and all the moving components. Again, not every patient is going to have the same exact treatment plan. They may have each of these factors in their treatment plans. Some might not have these factors at all, but we're kind of weighing them differently and a large part of our role as psychologists is how to balance what components of the treatment they need the most. So, You know, we're working to identify any precipitating factors or stressors that might um You know, trip off the symptoms or contribute or perpetuate the symptoms. We're obviously working a lot with managing the actual symptoms when they're occurring. Um, our job as psychologists obviously is to then identify any co-occurring mental health problems that might need care. Um, but then we have to work within the system that these kids live in, right? So, they spend a large part of their time at school. So we're doing a lot of school management as a team. We're working with parents. They are an active role in their child's. Care to kinda, again, make those modifications at home. You know, a large part of this is training parents how to respond in a helpful way. Um, worried parents do what they think is best, um, right? And sometimes that actually what we know from the research is can perpetuate the symptoms or aggravate the symptoms. We talk a lot about, and this is where physician roles come in, is when do we have to seek medical care and when is it OK not to seek medical care. Um, schools, for example, uh, come at this from a liability perspective. So they're very eager to call 911 when a symptom occurs. So we're working to give education about those kinds of things and also how to respond in the school setting. But more importantly, the biggest factor is getting those kids back to school. And other appropriate activities. So now we're gonna talk a little bit about how, um, each kind of component of care is tackled by the different service lines, the psychology and all of our therapy services partners. So we're gonna start with psychology. So, I want to talk a little bit about the indications for treatment. So I think lots of people assume psychology is a required component of the treatment. And, you know, for most patients, I'd say probably 95% of patients, that's likely true, right? But what we, um, what we wanna think about is these criteria. So, we certainly know we get referrals out of the emergency department where a patient has had their first episode of what's being diagnosed as a functional neurological symptom, um, and they, they have no pre-existing history of those things. Um, and by the time they come Back to see us, they've had no more symptoms. Nothing has returned. So we kind of resolution of symptoms. It was a one-time incident. So, we certainly do consultations with those families. We give them a little bit of education about what to do in the event, but we might take more of a weight and monitor approach as opposed to an intervention approach. The kids that clearly come to us have some kind of functional interference in their life. They're not going to school, they're not sleeping. They're not socializing. Um, for some of our patients, they're not going to work. That can look very different depending on the age of the patient, but that is a very clear goal for us. So if anyone is having interference in their daily life, we see them. Some of our patients will have very limited functional impairment in their day to day life, but they have significant emotional distress because of their symptoms, which then tends to perpetuate the cycle of their symptoms, even though they might be doing some more of their functional activities. So we will see patients to treat that emotional distress component. And again, we are tending to see and treat the patients who have more persistent symptoms. So then the goals, um, is what we wanna talk about, right? So, as much as possible, we do work on some symptom prevention, um, but we know that that can't always be true, right? Just like a migraine patient. We're doing things to teach them how to identify their triggers or things like that, but we, we don't promise them you're never gonna have a migraine again. So these are, this is where we're really taking a deep dive into their Contributing um symptoms, they're precipitating symptoms, and then those perpetuating symptoms so that we can try to navigate those as much as possible. That might mean really helping them get their sleep back on track. Fatigue is often a common trigger for symptoms if a kid is overly tired. So really working to say if we can get your sleep on track, we might raise the threshold per se for your symptoms to show up. Um, so that's really kind of the, the approach we take for symptom prevention. The meat of what we do is really managing symptoms when they occur, and this can look a lot of different ways. And in the next slide, I'll show you some more things. But that is teaching patients how to regulate their nervous system with some relaxation strategies and um mindfulness strategies, grounding strategies. But then also a more significant portion of that comes down to cognitive strategies. These symptoms cause As families and patients stress. It just is, it really is inherent in the kind of disorder for most of our patients. So we're also teaching them cognitive strategies to manage some of the anticipation of symptoms or the panic they have when symptoms occur or the focus they have on the symptoms. And that can be for both parents and patients that we're working on some of those strategies for. Um, and then more importantly, we're working on kind of developing behavioral plans to help families take small but steady steps towards, you know, their normal activities, getting back to school, getting back to social activities or extracurricular activities or work, things like that. The modalities that we're using are um cognitive behavioral therapy, um, which is probably, uh, what is in the literature the most. Um, but we're also now using more and more acceptance and commitment therapy. They are both under the large umbrella of cognitive therapies, and they both have a very strong behavioral component, so that relaxation training, that kind of gradual change in behavior and working backwards functioning. And they both have a cognitive component, but there's some slight differences. So cognitive behavioral therapy, we're really working to retrain or reshape, if you will, the unhelpful thoughts that patients are having. Um, so we're trying to neutralize them when they're saying, oh my gosh, this is gonna definitely happen. You know, cognitive behavioral therapy would try to say, OK, what evidence do we have that we know it's for sure gonna happen? You know, what would be the worst thing if it did happen? So we're trying to slow that process of stress down that comes attached with their unhelpful thoughts. However, we find that for a lot of our patients, they have evidence to support some of their thoughts. And although there's evidence, this can still be unhelpful. So we've, I think most of us, all three of us, have transitioned a lot towards this acceptance and commitment therapy or act model, where instead of changing an unhelpful thought, we're Seeing patients just notice the thought pattern, but then disconnect, if you will, from their thoughts. Keep those thoughts moving so they don't get so focused or stuck on those thoughts as a way to help them shift into a more adaptive strategy to manage their symptoms. So getting, going with their, um, relaxation strategies or their grounding strategies, etc. And then I'll talk a little bit more about dual therapy model here in a little bit, but this, that'll talk a little bit about what do we do when there's comorbid um psychological concerns. So, on this slide, um, these are a list of the interventions, the specific interventions that we might do for any given patient within that CBT or ACT framework. And again, this is very individualized. We may not do all of these components for every family. Some kids only get very, you know, only need very specific strategies. Some families need to touch on all of these things. The things that really are non-negotiable for us would be the psychoeducation piece. Um, we are repeatedly doing education. I, you know, I see families for several months and it feels like we are doing education in little doses at every visit along the way, especially when there are changes in symptoms. That raises the risk for families to kind of go back to that medical model of thinking. And so we're consistently putting education in there and really helping families stay focused on the rehabilitation model. What we find is that if families are not aligned with the rehabilitation model from the start, the risk for dropout from treatment is very high, and those kids then don't get the care that they need. So, you know, we have families who um their, their kiddo is going to school. The school is aligned. We've given a basic plan and the school's doing a great job of managing symptoms. So we may not need to do a whole lot of school reentry planning. But there's a lot of anxiety about going to school and having symptoms or having your friends watch you have a functional seizure on the floor, um, and what to do about that. So we might focus a little bit more on those cognitive strategies to manage the anticipation and then maybe focus a little bit more on that autonomic regulation training. We may only focus on sleep. If that's like a core trigger, we'll spend a lot more time on sleep than some of the other strategies. So it's kind of a mix and match. I think the best thing that you can think about in terms of preparing your patient for treatment is really again, explaining that this is a treatment not meant to eliminate the symptoms, but to help manage them. We wish we had the magic wand is what we say to families all the time. Like if we had that wand, we would totally use it. Um, but in the meantime, we're really gonna help you manage them, help you get back to what you're doing, and manage the stress that comes with that. And again, just setting reasonable expectations. I think the biggest thing that physicians can do to prepare patients is that it takes patience, um, practice, and perseverance. You know, there, there are populations of kids who get better very quickly, um, but a lot of kids struggle with this for some time, or it kind of, um, comes and goes, if you will. So, Um, this is very much a hands-on protocol, and it's kind of a, you, if you do the practice and you do the work, you get further in your care. Um, so it's, you can't try something one time and say that's not working. We're retraining the body, right? So we'll use sports analogies. Like if you're learning how to do something for the first time, play soccer, you have to keep at that. You're just not good at it right away. Um, And I think that's especially important with the autonomic regulation strategies, cause everybody at this point has heard about deep breathing and mindfulness, and they kind of roll their eyes at you, and we call that out. We're like, yep. You know, you've heard about this, and you can do this as physicians too. Like, I know you've heard about this, and they're gonna teach you how to do it in the right way and the way that works for you, and it's going to take doing this day in and day out. So really emphasizing that this is like a change in how you're approaching your day to day activities and inserting these things every day. I think the other important factor is that the whole family will be involved. Child and parents will both have very active roles in this care. And again, our role in, at Children's is to focus on FNSD symptoms, not necessarily any comorbid concerns. So let's talk a little bit about that. So we're doing more targeted, specialized intervention, again, very focused on the physical symptoms they're having and getting them back to functioning. Um, you know, in an ideal world, we, we'd be doing this in 6 to 8 outpatient appointments. Some patients less, some patients more. Again, very individualized, but the goal is to communicate to the family that this is targeted. And in some ways, we really want the family to know this can get better and better doesn't necessarily mean symptom resolution, but like you're gonna get back to doing more in your daily life, increasing your quality of life. So we rely on what we kind of describe to families as primary care behavioral health services for any comorbid and significantly impactful uh psychological concerns. So, um, if a patient has a preexisting anxiety disorder, um, depressive disorder, or if they do have trauma that we think is influencing or contributing to Symptoms, we are going to connect them to resources in the community, and we will then collaborate with those providers. But for us, when we try to take care of that whole spectrum, we tend to find that we're not making as much progress in the specialized care that we deliver, and families, frankly, can't get anywhere out of, outside of academic medical centers. Um, I'll just put in a plug real quick for our project safety net team. You might know that as the 4514 team. So that is a helpline that parents can call, um, for anticipatory guidance about mental health concerns, but more importantly, they are a resource team, so we can connect families to them and they will identify community-based resources geographically and based on insurance. So, they are amazing and we love them very much. OK. So, you know, we, um, rely, I said earlier, we rely heavily on our therapy services partners and they're not here to represent themselves, but we're gonna gonna give you an overview of what they would be focusing on with patients. I think one of the questions that can get very confusing um for physicians is, well, which type of therapy service do I refer to? So we're gonna talk more basics about that. So, A referral to PT would be appropriate to address mobility issues, um, stamina issues, gait and balance issues, typically for those true functional movement disorders. Um, so if they have weakness in the legs, paralysis in the legs, tremors, um, things like that, abnormal gait, uh, functional dystonia, those are the kind of core disorders that physical therapy would be treating. The other huge thing that they do is help families decrease their reliance on durable medical equipment, um, which we know can perpetuate the symptoms over time. We certainly understand that some patients need those to start to create a safe environment. for them. Um, but the goal is to quickly decrease those as much as we can. So a big part of what physical therapy does is talk about that and kind of frame that within the diagnosis itself and how that could perpetuate the symptoms over time. I think the other thing that our physical therapists are amazing at is really demonstrating the positive signs that are aligned with the FND diagnosis. Um, we talked about, you know, to have a diagnosis, there needs to be that incompatibility, and we wanna show patients why so they can show them the functional movement patterns, um, kind of in real time and give them education about why we don't think that's something structural. Um, and then really the core of what they do is demonstrating that normal movement can happen. It's really a confidence builder for these patients. Um, they rely on repetitive and successful movements, um, while doing functional tasks. So they're training them to walk the stairs, they're training them to walk with a gait that is more stable and safe. They're increasing their mobility in general. Um, All through just repetition and building confidence, while also minimizing how much focus a patient is putting on those symptoms while they're completing the tasks. So they're working to retrain the movement and they're incorporating some of the skills that we're teaching them in psychology to decrease how focused or vigilant they are to the symptom while they're doing the functional task, with that, which then tends to slow the symptoms down and allow them to be, um, demonstrating the normal movement more easily. So occupational therapy, I think this one, it probably causes the most confusing cause there is some overlap with what PT could do. So I think the biggest thing that stand out about OT is that we're thinking about sensory regulation strategies. What we see is that there are a lot of kids who have sensory overstimulation as one of their core precipitating factors for their symptoms. So OT is really helpful in helping them. Uh, regulate the sensory system. But OT is really good at helping build routines for those activities of daily living. They really think about school or occupational reentry. You know, for most of our kids, it's not an occupational reentry. Some of our older teens are working, but how to do that successfully. So they use some of the same approaches as PT, frankly. Um, they're doing a lot of, again, reiterating the diagnosis and the treatment plan, giving them confidence in that. They will talk a little bit about um when is it appropriate to use devices or not. And then again, they do that gradual and repetitive exposure. They get to see these kids do the task in person, which we don't get the pleasure of doing in psychology. So that's why they're such a good compliment to what we do. And then they really can reiterate some of the symptoms that we're teaching to help with things like self-management, right? So how do we manage fatigue? How do we manage pacing? How do we identify those signs that um lead up to your symptoms starting? So again, there's some nice overlap with what we do. Speech therapy is probably the least common referral, but you might want to think about a speech therapy referral if a patient is having vocal tics that are really interfering with their daily life. So we do have some kids who have vocal tics, but it's not interfering in any way. So the kids who show more interference are the ones who are, you know, in class and it's disruptive to class and the, the I kind of talking with you about that. Um, we do have kids who lose their ability to speak or communicate as part of their FND. So, um, the role here would be teaching them how to communicate in the meantime with the goal of retraining speech. And then if a patient has a swallow disorder, they would do swallow, um, work with them to support feeding and things like that. The growing area in FND really is this functional cognitive picture, so things like brain fog, memory loss, um, things like that. And so by the like recommendations in the literature and the consensus papers and therapy services world, speech therapy would be the discipline to help with some of that. OK. So now we're gonna move on to talking about um your role as pediatricians uh within treating and helping patients to manage this uh diagnosis. So, again, like Megan said, oftentimes we think, you know, PCPs are gonna be the first line of communication that Patients have with their medical team, um, because patients have a more trusting kind of developed relationship with their PCP. They're probably likely to feel more comfortable turning to you, uh, for advice, as opposed to maybe a specialty service where they've just had fewer points of contact. So, PCPs can offer, you know, we think important guidance regarding any new or changing symptoms, uh, help families to focus on function over symptom elimination, right? It kind of Megan was saying, setting up for treatment and helping them to kind of think about these symptoms a little bit differently. Um, helping parents to understand that their role might be changing here from protector to coach, um, which can help them, you know, be ready for some of the interventions that we're gonna be doing of recognizing perhaps when parents are Uh, stepping in a little too much for their kids, um, and potentially reinforcing some of these symptom patterns. Um, and then help support patients' adherence to their PT or OT or speech home exercise plan. We always say that. Therapy services is really gonna work about as much as you're practicing them at home, you know, once a week session while super powerful and impactful, it's not gonna have quite the same effect as someone who's working on these skills day by day. So helping them to understand that as well. PCPs can help offer some guidance um on medication management, particularly for some of the more comorbid problems, right? So, um, Megan mentioned earlier that sleep difficulties are really common within this population, um, and something that we might be working on from a behavioral standpoint, but perhaps, you know, they may benefit from some medication management of that or pain or anxiety or mood concerns. Um, oftentimes we're seeing that families are, are likely to seek some guidance from their pediatricians on activity restrictions when it comes to this diagnosis, right? It's scary to see your kid lose motor control, um, you know, or just lose control of their body, generally speaking. So, broadly, um, we tend to have fairly few activity restrictions when it comes to, um, this diagnosis. With the exception perhaps of driving, um, and that's something that, uh, oftentimes need to be considered or thought about with our team, patients, um, about their level of safety. And then, uh, lastly, families might seek advice from their PCPs regarding school consultation, um, on topics about attendance or accommodations or services, and we'll talk a little bit about that in just a bit. So, you know, we're not necessarily suggesting that PCPs are solely responsible for managing all. These aspects of care, these are all things that you know other members of the multidisciplinary team are also gonna be touching upon. Um, we just bring them up here because we think these are likely to be some common questions or concerns that families may bring to their pediatrician. So just helpful to have some general guidance prepared on on some of these topics. So, oftentimes, like I mentioned, PCPs are going to be the first to learn when a patient may have a new symptom or maybe some changes to their symptom presentation. Again, it's really causes that trusting relationship that patients and families have with their child's pediatrician. So we thought it could be helpful to kind of go over what we say, what do we do in those moments. Um, it's helpful to help explain to patients and families that FNSD can include several types of symptoms, and this may or may not have been explained to families when they first got their initial diagnosis. Oftentimes, um, you know, ourselves as well as the, you know, maybe neurology team, we may not want to go into all of the different symptom presentations. Uh, we might be a little bit concerned about overwhelming the family or that you're going over all the different presentations might uh result in some suggestibility uh for some of our patients. So, Um, Patients may better understand if various symptoms have more kind of commonalities, right? If there's things like weakness and numbness in an extremity, um, That's probably a little bit more of a parallel, but they might struggle when you're discussing um more of those common co-occurring problems, right? So, um, weakness or some abnormal movements, but now all of a sudden they're having significant pain um in some area of their body or maybe they're also experiencing a lot of fatigue, uh, or sleep problems or um some dyshoonia. So it can be helpful to explain that all of these symptoms are also caused by an overactive nervous system, and while maybe some of those other symptoms are not necessarily presentations of FND per se, they have some similar underlying mechanisms going on there. So we thought we'd briefly talk a bit about homebound instruction. Um, we see that oftentimes, uh, pediatricians are the ones that families are going to talk to and ask to sign off on this, or just, or, or just give some general advice about school consultation and attendance and accommodations and support. So, um, Generally, just kind of give you a little bit of an overview. Homebound is a service that's offered by public school districts for students who are unable to attend school due to some medical condition, right? And there's actually a lot of variability about how this plays out from one district to another, but in theory, a student should be assigned a homebound instructor to complete some one on one instruction, right? So, medical documentation is necessary to qualify for this, which is why families would be coming to their pediatricians. But it's actually up to the district to determine if a student is eligible. So even if a pediatrician uh were to write off saying, hey, you know, I'm recommending homebound, the district could technically decline that if they didn't think that that student was eligible. So, in our experience, um, the homebound teacher is not likely to be able to provide as comprehensive of instruction across all subjects, where they might be a teacher that works within the school and is a math teacher or a social studies teacher or a PE teacher. Um, certainly great in their area but might not be able to provide instruction across all subjects. Um, they may simply serve more so as a coordinator of assignments, um, and a supervisor for the student who is completing their work independently. Um, that's realistically a little bit more of how we see homebound play out. Um, and these one on one sessions, um, they could happen at the school, they can happen at the student's home, or they can, you know, occur in a public place like a library just depending on, um, how they want to arrange that. And there can be some circumstances where homebound can be appropriate. Um, generally speaking, we try, we tend to discourage homebound if possible, um, really because we, we find that it tends to reinforce a cycle of avoidance, um, which can then also reinforce symptoms. Um, and it really keeps kids from learning how to cope in the school environment. And again, there's a lot of inconsistencies in how the service gets delivered, um. And what we see is students are oftentimes finding themselves even further behind in their coursework, which is worsening their stress, which can contribute to their symptoms. So instead of homebound, if you're looking to maybe talk about an alternative, uh, with, with families, we tend to encourage increasing school supports. Oftentimes this would be through something like a 504 plan. Um, to help students to cope with their symptoms at school. And so we are oftentimes gonna work with the school to plan, um, maybe a gradual re-entry, and this is where students would gradually increase their attendance over time, um, as they learn to cope with the school environment. So, We're often gonna consult with the school, offer some guidance and how staff can respond to symptoms and support students. So as a pediatrician, you know, homebound, uh, gets brought up, these are just some factors that, you know, keep in mind, and again, wouldn't necessarily expect a deep, deep dive of consultation with the school, uh, but maybe priming families to, uh, recognize that there's alternatives, you know, ways to go about, um, increasing their school attendance and their school functioning. Yes, and I would add that we are always happy for you to communicate with us as the multidisciplinary team. We do that amongst ourselves where we may have uncertainties and so please do, uh, reach out to us. We love your participation in these patients there. OK. So, we want to spend a little bit of time of talking about like how else can you help prepare patients for functional rehabilitation. I talked a little bit about how to prepare kids for psychology. Um, but families have a lot of hesitation and reservation about this. It is an overwhelming treatment for some, a lot of parts, a lot of appointments. Um, and I think often families again, get stuck in that kind of medical model approach where we're looking for the medicine or the one thing that will just fix the problem. And again, we know that that's not the case for the treatment of FND. So, we um use this four flat tires analogy quite a bit um as a way. To really reiterate that this is a multi-pronged approach and that you need multiple components of care to work. So, right, if a family's coming to you being like, we just need that one medicine to fix the anxiety and it'll go away, you're only pumping up one tire of the car. The car is still not moving forward. And again, our goal is to get them moving forward back to functioning, right? Some families are like, OK, I'm willing to do, you know, medicine to help my, my sleep or my anxiety. I'm willing to go to PT, but I'm not gonna go to psychology. Um, still, you're only pumping up two of those tires, the car's still not moving. So again, really just a way to help families understand you need all 4 tires filled up for the car to start moving forward slowly but surely. And I think most families, as you explain it that way, Repetitively, um, they can feel a little bit more aligned with doing the multiple components of the care. OK. So, we also just wanted to kind of re-anchor um in what means treatment success, right? So I think as we've reiterated throughout today, we cannot promise symptom elimination. That is not the stated goal. Certainly, some patients achieve that. Some will achieve it for a period of time, but the symptoms will relapse if you will. Um, so we never, we never really promised that as the goal. We really, really talk a lot about, we want to manage your symptoms and improve your functioning. That is, if we were measuring outcomes, it would be based on their functioning, not their symptoms. I think the other kind of piece of that is you get the success by changing what you're doing in your day to day life. So we talk a lot with families about the fact that we have to change what we're doing to help reconnect the, that glitch to then see things get better. So, the symptoms will start improving only after you've started making changes through that multimodality care. The other uh factor that we wanna kinda talk a little bit about is increased symptoms or change of symptoms or worsening of symptoms doesn't necessarily mean that we're like not successful for patients. We know that this is part of the disorder and we expect it, and I think setting families up for that, like Kat said, can be um You know, as it happens, setting the expectation that this is what we expect. Again, you have to be a little careful about that on the front end cause some patients are vulnerable to picking up symptoms cause they're suggestible. Um, but it doesn't mean that we need to Increase the treatment per se. So, it doesn't mean like, get more psychology, get more PT. It might just mean that we're having to go back to looking at, are there new precipitating factors? Are there new perpetuating factors that we could take care of to help them get the symptoms to slow down again? There are a pocket, a pocket of patients who do not get better, um, and their functioning just continues to be significantly impaired. There are some intensive rehabilitation programs across the country. They are few and far between. There are more of them for pain disorders than there are for FNSD per se. Um, but if you're ever thinking about that, please talk with us. We are, we typically will um recommend a place like Mayo Clinic or Kennedy Krieger Institute in Baltimore because they will um treat kind of the overlap between pain disorders and other functional symptoms. So there's something to keep. There are more intensive treatments if we need it. OK. The takeaway for today. Um, I think, um, again, one of the most important things you could be doing as a participant in your patient's care if you might have FNSD is consistent and repeated education. I said it before, in every visit, I'm giving an education of some kind to a family. Again, um, families are very vulnerable for waxing and waning between kind of alignment with the treatment and kind of switching back to that medical model, especially as things um might wax and wane in their symptom presentation. Um, and we know from that. graphic from the Hallett group is that poor communication about the diagnosis, misunderstanding of the diagnosis, and misunderstanding of the treatment plan really um are are significant perpetuating factors for families that get in the way of kids getting better. Again, as Kath said, we really want to emphasize these symptoms are very real. They are not all in your head. Uh, we want you to call that out. We want you to talk to families about that. Um, and this is not behavioral. That is the other term we sometimes hear people use. Um, and it's not behavioral. That means there would be a voluntary component to this, and we know that this is involuntary. It is a communication problem. And again, uh, we really appreciate your role in helping us talk to families and they're gonna come to you and you're gonna identify some new symptoms or initial symptoms and figuring out how to get kids to the appropriate care is, is really um is a really important role that we value um of you. And we know the quicker we can get Kids to treatment, the more likely they are to have better outcomes. 30 days, ideally, is kind of the window that we are now seeing in the research. If we can get a kid to care in 30 days, their trajectory is significantly better. And we know that's tricky because a lot of these families have been on the medical assessment journey for a long time. Um, and then lastly, just like really helping the family focus on adherent to those functional rehabilitation goals, do those home exercises, change your sleep habits, get good exercise. It's hard for families. So sometimes we'll really talk with families about the recovery is not just this very beautiful linear pathway. Um, there's gonna be, there's gonna be setbacks or you may kind of have to change. Path because a new symptom pops up. We kind of liken it to like mountain climbers, you know, someone who's climbing Mount Everest, you know, there's a bad storm on the mountain, they kinda have to backtrack, find a way over, go back up, but eventually, they might get to the top. So I think reiterating that to families and supporting them in that more than anything is really helpful. That patience, practice, and perseverance is the message that you can help us with for your patients. We have some key resources in the slide deck, um, just some of the things we talked about today. I will point out that the functional neurological disorder website, um, neurosymptoms.org and FNDH Hope have fabulous resources for patients, for medical providers, for schools. So if you haven't ever checked those out, I would highly encourage that. There's some nice handouts for families, handouts for physicians to use. I'll point you to those. Um, you're welcome to reach out to us. We'd love to hear from you. Again, we really value your participation in our patient's care.
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