Aaron Fobian: Retraining and Control Therapy (ReACT)

Aaron D. Fobian, PhD is an Associate Professor and clinical psychologist in the Department of Psychiatry at the University of Alabama at Birmingham where she is the PI of the Functional Neurological Disorder and Pediatric Behavioral Health Laboratory.

This episode includes discussion with Dr. Aaron Fobian regarding her Professional Pathway and Background to FND Research and Practice, Similarities and Divergences in FND between Pediatric and Adult Populations, Pediatric FND Treatment Development- namely the ReACT Trials, Novel Approaches for Standardized Training for Behavioral Health Professionals in Pediatric FND

Links:

• ReACTFND.health
• Fobian FND+PBH Lab - Aaron Fobian FND+PBH Lab (fobianlab.com)

Transcript

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SPEAKER_00 0:09

Welcome to the Functional Neurologic Disorder Society podcast. I'm your host, Erica Cotton, coming to you from Chicago, Illinois, with a special thanks to Michael Romeo, our production engineer, coming to us from Australia, and our content curator, Ingrid Hertzauer, from the UK. My guest this week is Dr. Erin Phobian. She is an associate professor and clinical researcher at the University of Alabama in Birmingham, where she is the PI for a functional neurologic disorder and pediatric behavioral health laboratory. In this episode, Dr. Phobian and I discuss her background and pathway into FD, the similarities and divergences in FD between pediatric and adult populations, her important and pioneering work in pediatric F ⁇ D treatment development, namely the React trials, as well as exciting new developments to increase access to these treatment services and novel approaches for standardized training for behavioral health professionals in pediatric FD. I've really enjoyed this conversation, getting me out of the adult F and D world and seeing such pioneering work, which we can all hopefully learn from. So here's my conversation with Dr. Erin Phobia. Thank you so much, Erin, for joining me today. It's wonderful to be able to talk with you about such an important topic. But before we get started and diving in, we'd love to hear about your academic background, how you arrived at including FD in your work and kind of the career path you've taken and so on.

SPEAKER_02 1:39

Yeah, thank you so much for having me. I'm really excited to talk to you today. So I am a clinical psychologist, and um during graduate school is when I saw my first adolescent with F. And she had just been diagnosed with functional seizures in the EMU, the children's hospital, and we went to their hospital room and met with her family and with her. And I remember basically only telling them that F and D was real, her symptoms are real, and that she should go back to school. And so I remember walking out of that room and feeling frustrated and just really sad that we weren't able to offer them some kind of treatment to help with their symptoms because their primary concern was clearly, what are we going to do? She's still having seizures. What are we supposed to do to help with the seizures? And we really didn't have an answer to that. And so about a year later, was actually the night before my interview for internship at Texas Children's Hospital, a talk show came on the TV in the hotel about there was a group of adolescents that had been diagnosed with functional ticks in the Northeast several years ago. And my mom had come with me on this because we were going to spend several days in Seattle after interviews were over, just vacationing. And she asked me about it. She's like, This is this seems really interesting. What is that? And I told her, I'm not sure exactly. I'd seen one patient with symptoms like that. I knew that they weren't faking and that they were real. But that just seems sort of like fake because I matched it at Texas Children's Hospital and we ended up seeing lots of adolescents with F and D while I was on internship. And it was there where they taught me that we should help them learn to control their symptoms. And, you know, this is really where the core piece of retraining and control therapy that I later developed was really initially conceived, the plan of um, you know, using habit reversal to help them be able to prevent or interrupt their symptoms. And their symptoms would often respond so quickly.

SPEAKER_00 3:53

Um, and you know, yeah, I saw in one of your papers it was like 4.9 sessions or something, like hovering right around five sessions, which is quite impressive.

SPEAKER_02 4:03

And that's where it would get to zero. I mean, often after one session, their symptoms will at least change. And so, you know, it was just, it was like this is this is great, you know, like most things nearly we treat they they it doesn't respond that well or that fast anyway. And you know, the the families and children are so debilitated and so distressed, and their lives have just been turned upside down. And so um being able to offer them a treatment that could help them get back to their daily lives. I just almost immediately knew that this is what I wanted to do, you know, from now on. Um, I just wanted to treat this uh and help these patients. So wow that's how I got into FD. I went on to postdoc and started further outlining the treatment and went from there.

SPEAKER_00 4:53

Awesome. And you're now 80% research and 20% clinical, so more on the research development, treatment, development, and disbursement side of things.

SPEAKER_02 5:03

Yes. And so all of it's clinical research. So we're doing uh we have two NIH funded clinical trials now. So even the research is still very patient-heavy.

SPEAKER_00 5:12

Yeah, that's so one. It's so it's not even translational, it's direct clinical research, which is so needed. Wonderful. Um, before we get into talking about your React trial and important upcoming announcements about next steps from the React trial, I just wanted to touch base for our listeners to provide a basic orientation around sort of how we conceptualize F and D in children and how similar or different that is to the adult world. And listeners have known I'm I'm the adult person. So I come from the lens of I know the adults and the Pete's are they little humans? Are they different humans? What's the relevance, especially when it comes to F and D and how much does things like the biopsychosocial model, um, alexithymia or um agency and control, all those kind of things that we consider in the adult world? How relevant is that to kids? And what do you think? Um, just more briefly on that as an introduction for our listeners.

SPEAKER_02 6:06

Yeah, so you know, I think overall, the probably the main ideological mechanisms which underlie FND and adults underlie that in kids. Um, with the predicted predictive coding models, I think, you know, it really allows for that heterogeneity in in their previous experiences. So, you know, what the specific experiences they have, you know, could probably differ, but I think really still fit in the predictive coding models. The um the main difference, so we we compared children with functional seizures to match controls based on age, race, sex, and family income. And we looked at um the Macy, so it's like maladaptive personality traits. We looked at the BAS2, which looks at symptoms of internalizing and externalizing disorders, and we looked at the childhood trauma questionnaire. And the only thing that was significantly different between the kids with functional seizures and the match controls was somatization. So other physical complaints like pain. Um, so that doesn't mean that these patients didn't have anxiety or depression. The T scores for anxiety and depression were really high for both groups. Um so that that's there. I think you know, what that says is just that uh, you know, psychiatric comorbidities, personality traits, trauma are not unique to FND and probably not the thing that we should target to improve it directly. I think it can absolutely be a risk factor and a contributing factor, um and probably an exacerbating or maintaining factor. Um, I think the biggest difference, though, between the adult literature and the child literature is some of the like the psychiatric comorbidities, but also the trauma. Yeah. Um, not even just in this study, but in other studies of children, it's been pretty consistently found that um there aren't greater reports of of abuse, um, especially sexual abuse. And so uh I think that that, you know, that's just different from the the adult literature.

SPEAKER_00 8:28

That is a marked difference given the base rates of trauma being so much higher in the adult populations with FND. That's an interesting difference. And it does speak potentially more to that primary somatization mechanism of kids who develop FND specifically.

SPEAKER_02 8:46

And um, you know, they they still have the you know, the higher rates of comorbid neurological symptoms. Um I think it's 20 to 30 percent of the kids with functional seizures have comorbid epilepsy. Um, I don't know the numbers, we haven't looked at it, but even more have had a seizure in their history, not necessarily having comorbid epilepsy now, but having had like a febrile seizure when they were younger or um having had epilepsy that resolved, you know, a lot of times pediatric epilepsy can resolve um over time. And so, you know, they have they have similar comorbidities in terms of physical um risk factors. And so the you know, the biopsychosocial model really fits well with kids as well. Um, you know, the neurological assessment is really important, working with PTOT and speech is really important on the biological side. Um, you know, looking, knowing that there could be comorbidities of psychiatric disorders is important. So making sure that uh we're able to uh assess them well for any kind of comorbidity and make sure that we do provide treatment for that. Um you know, the having F and D in general is just distressing. And so being able to help them manage, you know, an illness that's probably been chronic for them often for some time. And they're often not in school. Their parents aren't working. A lot of them have taken off and had to stay home. And so there's financial stress, there's you know, stress being behind in schoolwork and and not being able to do activities and isolation from friends. And so helping them be able to get back to all of those activities is really important as well.

SPEAKER_00 10:48

Do you see as many comorbidities related to like pain or sleep disorders, like primary insomnia, sleep impairment, comorbid pain conditions, as we normally do in the adult literature?

SPEAKER_02 11:00

So pain definitely overlaps, you know, is a pretty common comorbidity with F and D.

SPEAKER_00 11:05

Headache pain, fibromyalgia, like in adults, GI pain, I'd imagine more for kids, a little generalized pain.

SPEAKER_02 11:12

Yeah. So, you know, GI pain, um, migraines, like even chronic daily headache, um and sometimes just like generalized pain, you know, just like I sometimes they call it amps, but it's like, you know, pain in their legs or pain in their back, things like that.

SPEAKER_00 11:34

Um what about fatigue and sleep? Are they prone to insomnia? Are the little ones more prone to insomnia?

SPEAKER_02 11:41

I don't know. I I don't know the answer to that. So we are actually measuring, we're using actigraphy to assess sleep before and then after treatment. So I think we'll be able to know that. Um however, we have looked a little bit, so we've we've peaked with um about half of the sample that we want. And so what we thought was that they were going to be sleeping less, but actually they're sleeping more. Um, I think because they're they're so disabled, you know, they're not able to go and go to school. I think they're laying in bed and their sleep has increased. And we started um looking at BMI percentile in children as well, and that improves after treatment. Again, this is all like like we're looking at effect sizes. So um, you know, this is like preliminary, just watching that. So I think too that they're they're probably more sedentary than normal. I think that they're sleeping more than normal because I think F and D makes them fatigued, the the symptoms make them more fatigued, and um I think they're sleeping more at that at that point. And with treatment, they're able to return to activities. And so their sleep returns more to normal adolescent sleep. Normal sleep and behavioral at that point.

unknown 13:01

Yeah.

SPEAKER_02 13:02

Probably not getting enough sleep like most adolescents at that point.

SPEAKER_00 13:05

But oh, wonderful. Yeah, that's that's a super interesting distinction. You hear, you know, in a lot of adult cases that there's insomnia or trouble falling asleep or staying asleep and disrupted sleep. Um, and then general daytime fatigue on top of that, but not some cases you hear more extreme fatigue where they're just sleeping all the time. But insomnia, I think, is maybe more prevalent in adults as an adult manifestation. But it's really interesting to note some of these differences that are really relevant. I mean, it's still something relevant to address. It's just it might be in a different direction or a different way when it comes to peeds. Wonderful. Well, thank you for the basics. So, in summary, if I can summarize it for our listeners, it sounds like biopsychosocial model still highly relevant, considering all the comorbid factors, still highly relevant, potentially the unique role of psychiatric comorbidities or even trauma might be less of a driving factor for pediatrics, but more of a primary somatization tendency that then becomes the focus, which is a great transition then to talking about your React trial and importantly, upcoming next steps, which by the time this podcast is out will be fully announced to the world. Um, so we're technically announcing it first here, but given production delays will be later to the game. But you can find links um to everything we're announcing today um along with the podcast posting. So you tell us a bit about that.

SPEAKER_02 14:27

Yeah, so um when I was hired as faculty, I was hired to do sleep and obesity research. And I told them when I was hired, I was like, so I have this other thing and I'm interested. I have this other treatment and I'd love to do research on it. And they were like, I don't know if you can get that funded, but you can do that in your clinical time. I was like, great, sold. Okay. So um I was able to bless you for doing that. It's just getting it through. It it's a it's actually if um, you know, just in general, for people out there wanting to do research, it was it was a great way to get things approved and and running without actually having funding. So, you know, I was seeing um these these adolescents in my clinic. And so we did the randomized control trial in clinic um and were you know able to get the results and publish them in 2020. Um, so I think we had you know almost 30 total that were randomized to react or to supportive therapy. And you know, at the we only did eight eight sessions of treatment for that study. The our new studies are all doing 12, but um for that at the end of treatment, all of our patients were at zero episodes week for the week after treatment, and then for the 60 days after all of our patients in React were at zero, and our kiddos in the uh supportive therapy were um still about the same. Their their functional seizure frequency hadn't changed, and so uh at that point we allowed participants to switch over out of supportive, um, so we don't have longer-term follow-up for the supportive group. But the individuals in React had um, I think 82% continued to have no functional seizures for at least 60 days, and then at our one-year follow-up, it's like 57%. So um we had good outcomes. It was great preliminary data to sort of launch our next steps in the research. So we have an NIMH trial that's ongoing right now in R61, R33 that's looking at the mechanisms by which treatment are effective and um really focusing on sense of control or sense of agency. Uh, so that was another thing that we looked at and compared our kids with functional seizures to our match controls. And we found that they have um poorer awareness that their control is being manipulated on a on a sense of control task. Um, so it suggests, you know, consistent with imaging studies in both adult and kids, that um, you know, their their sense of control is is different and possibly a good target. We also have some preliminary data looking at pre and post from that, um, that that significantly improves after treatment and that that change is correlated with their change in functional seizures. So we're hopeful that maybe that is a direct mechanism that we can target and change. Um, you know, we we know in other neurobiological research that the sense of control is related to um like it can be increased by using efferent motor control. So being able to give you know, like individuals that ability to do physical movements that prevent very deliberate physical movement. So theoretically, all of that should increase that sense of control and and be what we're you know, what we're trying to target. So, you know, that's that's all ongoing. Um, we have good preliminary data to support that, but still, still looking.

SPEAKER_00 18:24

Um so one point of clarification just for our listeners, um, specifically in the React trial and talking about control and linking it back to the prior sort of core mechanism of somatization, are you meaning control over symptoms that are of that create that are precursor to the functional seizure episodes during the functional seizure episodes? Or are there additional things? I think in other papers you mentioned sort of habit reversal even before functional seizures happen. So where which are what are you targeting for control? Behaviors, physical sensations, reactions to physical sensations, all of the above, the whole trifecta for somatization. Yeah.

SPEAKER_02 19:07

So it's a good question. So the, you know, the the core pieces that we start with and react, you know, we we explain sort of like I explained earlier of, you know, this is your body has learned a new way to respond to things in your environment, and we're gonna help you retrain that. So you don't have control right now, but we're gonna help you retrain that control. And so then what we do, we we go ahead and target like their automatic thoughts when symptoms begin or when they know they're about to begin. And so we know generally that's a scared thought, like an oh no, this is bad, and then uh an expectation, like here it comes, this is about to start. And so we just go ahead and instead of walking through the CBT process like we normally do, like identifying thoughts and helping them challenge them, we just sort of give them rational responses. Substitute, you give them a direct substitute thought. Here you go. We're just gonna do this right now. So you can leave your page. Yeah. And we do, you know, we it's like, okay, so we have a calm thought, right? It's not gonna hurt me. This, this is, I'm going to, it's not gonna harm me is the right way, probably it may hurt, but it's not gonna harm me long term. Um, how do you know that? You've had a lot of these now, you know, and you're never, you haven't been harmed long term. You've been to a lot of doctors, and that told you, you know, they told you that this isn't gonna harm you. So you have evidence to know now that this is true. Um, and then a control thought. So this is countering the expectation, you know. So it's like, okay, I have a plan, I know what to do. I don't have a, I don't have to have an episode. I can learn to control this.

SPEAKER_00 20:48

I've got this. If it happens, I can manage it. If it doesn't happen, I can manage it. It's all gonna be okay.

SPEAKER_02 20:54

Exactly. Yeah. Yeah. And so then that goes into like the habit reversal pieces for the symptoms. So in one of our studies, we found that 98% of our patients had premonitory symptoms that indicated the the functional seizures were gonna start at least some of the time, maybe not every time, but some of the time they did. And so what we have them do is as soon as they know it's coming or as soon as symptoms do start, they sit, they do the the thoughts, and we give them specific opposing responses for each of their symptoms. So, you know, for loss of consciousness, we may have them focus on things, talk out loud, move their hands, move their head. Um activating, grounding kind of things. Shaking, we have them do big physical movements, um, you know, really using principles of like the bigger the better, the sooner the better.

SPEAKER_00 21:51

Um, and activate a totally different network and pathway and make that the voluntary response rather than the unwanted involuntary response.

SPEAKER_02 22:00

Yeah, make it really hard for that involuntary one to be able to begin. Or if it has begun, go ahead and do the the other response to counter that so that you can take that control and and um prevent that involuntary response from continuing. And so, you know, I think it's important too. We don't we don't use suppression. It's not like don't move, you know, like suppress it. It's you know, you we give you an active plan to be able to either keep control before the involuntary symptoms begin or to regain control uh once they have begun.

SPEAKER_00 22:36

And so um, yeah, and then we we um do you have any role for like relaxation? And a lot of the adult literature focuses on mindfulness, body scans, maintaining relaxation and sort of symptom prevention as well as maintaining calm once symptoms do start. Is that playing a role in your treatment?

SPEAKER_02 22:58

So the the thought piece, I think, is the goal to keep them calm. So, you know, like tell yourself it's okay that you're gonna be able to control, but you know, with the opposing responses we give them, they're probably not relaxed. Um, and you know, we want them to do the opposing responses once the symptoms begin to, and you know, that that can make their muscles soar, right? They're like they're trying, they're actively working to regain control of a movement that's already happening. Um, so I would say, you know, they're probably not relaxed at that moment. Um, we really want them to be very active and moving, to be able to prevent that involuntary symptom from being able to take over. And so I think that being active makes that easier um than than maybe relaxation. Um that's that's a theory I have. I have nothing that proves that, but that's sort of the idea behind um using the habit reversal. We do have them breathe. The very last step of the plan is breathe, and we don't go into that very much unless they have a really specific breathing symptom that we want to, you know, give them a very specific opposing response to. But the idea is like just make sure you're breathing, right? Stay calm, make sure you're breathing, you know, tell yourself you're calm and control thoughts, and that's gonna help you be able to implement the opposing response plan for the symptoms.

SPEAKER_00 24:26

Yep, to engage in the behaviors and the alternative physical actions. Yeah. What role does environmental modification, stressor modification, communication modification take? It's generally pretty big in most of the adult treatments, but I imagine it's different for kids and their families and school. There's only so much you can modify or do. How much or little does that play in in your treatment or not?

SPEAKER_02 24:48

Yeah. So honestly, so we we try to send them back to everything. Um, we want them to, as soon as we can, get them back to their other activities because you know, sometimes we can identify triggers, and a lot of times you just can't identify all the triggers for this. And so if we put them back into daily life, they're gonna encounter those triggers. And we want them to then encounter the triggers so that they can do their plan and retrain that situation or emotion or you know, that learned set of associations in the body. Yeah, yeah, that whatever it is that's triggering it, it can be retrained as a trigger because they're then, you know, taking control. Um, and so, you know, we we tell them too, you know, for you know, sometimes patients will say that stress or anxiety can be a trigger. And so what we tell them is that, you know, we we want them to be able to be stressed or to have anxiety and not have symptoms. So what we're gonna do is not avoid things that are stressors and not avoid things that, you know, cause anxiety because we want them to be able to do that plan and retrain those as triggers, just because patients that have a really strong anxiety disorder will probably, you know, struggle with that on and off through life. And we definitely don't want that to be paired continuously with the F and D for them. If we can take that away as a trigger, I think that's really, you know, it's it's really helpful, obviously. Um, same thing with stress, you're just going to be stressed, you know. These stress kids are gonna have symptoms. Yeah, they're gonna, they're gonna have exams, they're gonna go to college, maybe, you know, like they're gonna have arguments with friends and family and whatever. And and we wanna make sure that they can just sort of live life and all those emotions without having the F and D as a trigger. Um, so uh we do, you know, unintentionally send them back to everything so that you know any trigger that's there can be uh triggered. But also if we know that there are specific things that may trigger it, we may do specific exposures to help them be able to manage those situations or whatever it is, so that that doesn't become a trigger for them anymore.

SPEAKER_00 27:06

Wonderful. So to summarize, if I'm hearing correctly, it's really focused on body symptom management and taking control of those body symptoms and then decoupling those responses by putting that child back in their daily life to face those circumstances so that they can practice the skills that they're learning to decouple and maintain control over their body in those situations. And learn to have stress, anxiety, symptoms or stress and anxiety or stress or stress and anxiety without having symptoms. That sounds right. Yeah.

SPEAKER_02 27:41

And I didn't exactly answer your environmental question, which I think is important with with patients, so with children, especially. Um so for the parents. So the parents get a plan too. And basically it is make sure that they're safe, make sure your child is safe. Um, and as long as they're safe, stand behind them, monitor them, and let them do their plan. Uh, and we reinforce how incredibly difficult this is for families to do. Um, you know, this is not what this is not a typical parent response. It shouldn't be until you know you've been told that, right. It's just, you know, it's it should not be your automatic response, you know. Uh, but the reason why we do that is we know that when we're talking about retraining something that is a reflex, you know, something that is involuntary, we know that if if they'll need someone or something external to them to themselves to stop it or prevent it, they'll always need that thing. But once we can empower them themselves to be able to stop or prevent it, that's when it can actually retrain and the frequency that it's triggered can decrease. And so we just really empathize with the parents and just make sure they make sure their kid is safe. But like this is going to help, you know. Yeah. In school, same thing. You know, we want to get them if we can outside of the view of peers. So they're not having to sit in front of peers and do a plan and have episodes. So if we can get them out of the room if they know it's coming, that's great. And then same thing to the school, you know, just monitor, make sure they're safe. Um, and then let them manage and then go back to go back to class, go back to what you're doing. You know, don't let it interrupt whatever you were doing that day. Yeah.

SPEAKER_00 29:35

Don't allow the behavioral avoidance or maladaptive coping to sink in. Just back on, back on, get back on the horse, so to speak.

SPEAKER_02 29:43

Definitely.

SPEAKER_00 29:44

Wonderful. Well, I'm very excited to hear about the next stage to all this wonderful work that you've already done. And it sounds like there's an exciting new phase that's available if you'd like to tell our listeners about that.

SPEAKER_02 29:59

Yes. So, okay, there are two phases. One is that we are continuing research on it. So we I told you already about the mechanistic study that we're doing. We also have an R01 with NCCIH to be able to do a multi-site efficacy. Well, the so we're doing a multi-site feasibility trial for the future efficacy trial. So basically, I'm able to train the other sites and show that we can all recruit and do React with fidelity. And then next step will be that large-scale efficacy trial. Um, so that's exciting because just in FD research in general, we need efficacy trials with large sample sizes. So we're patients. That's so wonderful. Thank you. We're very excited getting that started right now. And then the second phase, you know, there the availability of treatment for individuals is really, you know, it's just very sparse. There aren't a lot of good treatment options. And, you know, we have patients traveling from all over the country often to come to Birmingham for treatment. Um, and you know, some people can can do that, and some people just feasibly can't. So trying to be able to expand access to care, um, we worked with UAB to establish React FD Health, which is going to have as its mission to expand access to F and D-informed treatment. And so we'll do that through two ways. And one of the ways will be that uh we'll be offering direct patient treatment, um, direct access to React via telehealth. Um, so it will be available to anyone who is in a SIPAC state. Uh so PSIPACT is a reciprocity agreement in the US that allows um if you have a license in one state that has SciPAC legislation approved in your state, you can practice telepsychology, telehealth in any of the other SIPAC states. And so there are about almost 40 states now that are SIPAC states and it grows all the time. So this the goal of this is really to be able to expand access to individuals across the US.

SPEAKER_00 32:15

So that would mean, sorry, that would mean that you, your providers and your provider group would be able to provide care to people if they're in a SIPAC state. So then you'd have access, these patients and the 40 other states would have access to you and your treatment team for this treatment.

SPEAKER_02 32:29

Yes, it won't be me myself providing the treatment. Um, it will be people that I train and um will be doing, we'll be meeting with them regularly too, just for case case consultations and things as well. But um yes, huge. Yeah, it's it's really exciting. The second phase of that, so we're thinking we really we're hopeful that we'll begin being able to start treating patients directly by summer. That is our goal. But this is just so new and and so different than anything we've ever done. Um, so who knows? But that is our goal.

SPEAKER_00 33:09

That's such a wonderful undertaking, though. It it could just increase access for so many people. I mean, access to good quality FND care with a provider who has some training in it is just very hard to come by in the adult world and the pediatric world, it seems, and you're really gonna put a dent in that, which is amazing.

SPEAKER_02 33:27

And being able to offer it to people who are in rural areas too. You know, it's it you don't even have to be near a big city, you know, it can be so that's it's it's exciting. Very um, and then phase two is going to be that we're gonna actually train other therapists, other providers in React so that they're able to use React in their practice. And so, you know, that will expand care in the US and then hopefully throughout, you know, lots of other countries as well.

SPEAKER_00 33:57

That is so wonderful. Training opportunities are also very, very limited for FND, especially specific populations like child versus adult, and in validated treatments that are shown to work. That's so wonderful. When is the training um arm looking to be brought online? I know, I know, I'm sorry. I know our listeners are gonna be so eager.

SPEAKER_02 34:20

I I I mean, maybe by the end of the year. I I hope by the end of the I don't know though. I no promises.

SPEAKER_00 34:30

Um I'm no pressure, just excitement and enthusiasm, as well as just significant gratitude to your team for putting all this together.

SPEAKER_02 34:38

The pressure is probably mostly just coming from me, like wanting to get this out. So um yeah, but it's it's exciting. Yeah, we I mean it's there, I there, I know just a lot of challenges to do this, I think that we aren't even aware of yet. But we are working diligently to figure them out and and start.

SPEAKER_00 34:58

The good thing is that you're trying, right? I mean, you you've established a treatment that works and then you're taking it to the next level of okay, now how do we get this in the hands of as many people as possible to have an impact, which I'm sure back in your meeting your first non-epileptic seizure patient, you didn't think you'd be rolling out a nationwide treatment and training protocol, but thank goodness you are, and you're willing to take that risk and not see it as too much of a, you know, too much of a challenge or mountain to climb going, yeah, no, not me. Someone else can do that. You're doing it, which is so brilliant.

SPEAKER_02 35:31

It's it's funny, yes. This is not ever what I pictured my my life or my career to be. I am so thankful for it. I I love it. Um, but yeah, just you just never know where you'll end up. I could have never imagined this.

unknown 35:45

Yeah.

SPEAKER_00 35:46

But I mean, thank goodness that you're willing to take those risks and put yourself out there and directly fill the gaps, right? You see the gap and you're like, okay, there is a gap. Let's fill it. How do we do that? What's the best way? And needing to kind of have a sense of humility about of like, well, we're we're gonna try and see what happens.

SPEAKER_02 36:07

I have lots of wonderful people around me. They're sort of pushing me along the way, you know. It's like I started doing the research on React, and people are like, Well, I need it. How do we get it? How do we expand it? It's like, oh, I don't know. Come on, let's let's figure that out. So um R.T. Vasilopoulos is is helping me. She's a pediatric psychologist at Yale. She's helping me with um React F and D health. And she's been on a few of your publications I've seen, right? Yes. Yeah, she's been great to work with, and um she's definitely helping me push me, you know, push me along and definitely patience being like, okay, what do you need to do next? Yeah, like people confronting me a lot of like, what's how are you gonna do this next? What's next? It's like, okay, you're right, we should do this. So thankful for that.

SPEAKER_00 36:52

Very much so. But I mean, the work that you're doing also just lays such important foundational work for the rest of other F and D conditions in other F and D populations. I mean, you can think about the same thing applied to persistent perceptual postural dizziness into specialty adult populations, to specialty pediatric populations. It's just setting up that model and that framework of look, it's been done, we can do it again, and it can work and it is feasible, which is just so pioneering, which is great.

SPEAKER_02 37:19

Yeah, it's exciting. So, I mean, and we we are beginning looking, so at UAB, um we use React for our adults, actually. Um, and with you know, multiple F and D presentations, um, both in adults and kids, but so we're starting to collect data on React in adults, um like functional seizures, functional movements, all the above. All of them. And that's what we use, you know, the research that I do is focused on functional seizures, and the decision to do that was really because NIH had not funded a lot of functional studies, you know, like I was told, NIH is not gonna fund that, just do it in your clinical time. Um, but you know, the the functional seizures have EEG. And so, you know, when you're going in front of the the reviewers and they can see like, okay, this is definitely, we can tell for sure that this is functional seizures. I felt like we'd have a better, a better chance of getting funded, knowing, you know, being able to really determine the the diagnosis is correct. And so that's why all of the studies are for functional seizures. But we with the the we've started, you know, a ton of our our adolescents have multiple FND symptoms. And so what we've started doing is is measuring those outcomes for for you know all of their all of the symptoms so that we can start demonstrating outcomes for other FND subtypes with React. Um I think too, the an interesting part of what we've we've added to, you know, as part of the manual for React is that we made it adaptive. Um, and so that each session really targets what the patient needs, like what they've been through since their last session. And so um the manual itself is called the precision treatment tool, and basically has the the uh therapist ask the patient a, you know, like a series of questions, and then based on those questions from the last week of their experiences from the last week, it gives them the manual of the things that they should really target and do in that session. Um, and so, you know, we're hopeful that, you know, one that helps providers, you know, psychologists are not trained to deal with medical things and to say, you know, oh, you're having a seizure, that's okay, don't go to the hospital. And that's so important for us to be able to like feel empowered and comfortable with the disorder and the treatment to be able to do that. And so being able to provide a tool that helps that and and like helps them make those clinical decisions that we make all the time in treatment and make them feel comfortable with that. And then two is we start disseminating, allowing the treatment to be able to be disseminated with fidelity. You know, one of the biggest issues in behavioral health, mental health treatments is that we do these really controlled studies where the treatment itself is controlled so tightly.

SPEAKER_00 40:35

Yes, you do this at this session, this at that session, this at this session. Yeah, which isn't how you do psychotherapy.

SPEAKER_02 40:41

No, and and when it's disseminated, it doesn't, it doesn't work that way. You know, it doesn't get done that way. It sort of gets changed or or sometimes watered down and and they're not getting the treatment that really was the evidence-based treatment. Um, and so being able to have this tool hopefully will help when we disseminate, keep you know, the fidelity of the treatment as it's disseminated to keep it as effective as it can be.

SPEAKER_00 41:13

Yeah, if you're building in the adaptability as part of the piece that you're testing and then disseminating, that's huge. Cause then you're sort of building in that natural therapeutic response and increasing the likelihood that that therapeutic response is accurate or helpful for that patient population based on all your years of experience and multiple providers doing this. That's so cool and wonderful. That's like taking a clinical trial to a whole new level of clinical trials.

SPEAKER_02 41:39

Standardizing the clinical decision making that we have to make, you know, in in sessions, um, and and helping that be then disseminated in a standardized way, I guess.

SPEAKER_00 41:52

Yeah. Oh my gosh, that's so wonderful. You are advan not only advancing the treatments, but advancing the way we're testing these treatments and incorporating them into clinical practice, which is huge. I can't wait to see the results. That's going to be so cool. We will definitely include links to all of those pieces as well since it's so important. Thank you. Well, this has been a wonderful conversation. Um, and I really appreciate having you here. And maybe in another year or two, we can have you back on and hear updates and next steps and continued uh trials, tribulations, and wonderful output from all the great work that you're doing.

SPEAKER_02 42:30

That's great. Thank you so much for having me. I really enjoyed it.

SPEAKER_00 42:32

Wonderful. Okay, thanks so much. As a reminder, listening to this podcast gets you access to a 50% discount for new FNDS membership. Use code FNDS004.