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Pediatric Advanced Clinical Focus Session: Let's H ...
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We're on now. Oh yeah. All right. We should present from over here, though. Or the video. Don't get too close. Okay. Hey, what's up? Hi. How's everybody doing? Yeah, yeah, yeah, yeah, yeah. It's good to hear your voice. Thanks, Matt. Tell me more about Backlavin. No, I'm sorry. You shouldn't give me microphones, right? That's not a good idea. I feel like somebody should have told us that they get blind up here. Like, from the last talk. I'm looking at speakers. You should have warned us, Sue. Yeah, so we're probably going to be, like, over here. But we'll be finding you guys. So as we start talking a little bit. Oh, good. We already got answers here. As we get started, this is the foundation of what we're doing here is this Poll Everywhere. If you're having problems with the Poll Everywhere, raise your hand. And then somebody from the crowd will come and help you. So Becky and I were talking last year. And we were talking about how it's really nice to hear other people's voices more than our own. Even though, if you guys know us, we don't mind the sound of our own voices, unfortunately. But that we were hoping for a session where we could just talk some issues out. Maybe the ones for which we don't have as much evidence. And so we're going to have a lot more questions than this coming up here. The goal really is for us to not talk a lot. And for folks, especially folks that, actually not especially, anybody. Especially folks with a big N of their own clinical practice. But actually, it's everybody. To insert points and opinions. We're going to disagree about stuff that's probably going to be good. And we're going to have more content than the time allows. And that's okay. So if we stick on one topic, that's fine. As long as we feel like it's fruitful and it's going somewhere. This is a situation where we have these microphones. You can just start talking and that's fine. But we have to get the microphones for the online audience. And then, Becky, how are we going to follow the online audience? There's an iPad up here. Okay, cool. So one of us should be doing that, probably. Or maybe Gotti. Or somebody. Cool. So anybody having issues getting going here? And do you guys only see one question? Or do you guys get to scroll to more of them? Just one question. Okay. So what we're going to do is I'm going to give you guys a couple minutes to answer this question. We're going to blow through all of the questions at the beginning. And then we're going to go back and talk about each of them. Okay? So it's going to be a little bit confusing. We want to kind of get the answers initially. So we make sure that we get to all of them just to kind of know where people are and what they do. Okay? Unbiased before we go anywhere else. All right. Yeah. So we got to blow just a little time as people start walking in because we want as much responses as we can get. So jump in and get that QR. What's up? It's full? Oh, my goodness. Okay. Well, I guess we'll go to the next one. I don't know. Okay. So this is good, though. If you aren't able to respond, then you have to hear your voice because that's the goal anyway. So you can give us an opinion as we go to the next one. How many people are locked out right now? No. Is it like paywall stuff, do you think? Yeah. It's full? We would love that. So we'll go to the next one and we'll see. The thing is just like what we did on Tuesday. We'll kind of know your answers as much as we want to make sure your vote counts. I'm sorry. Should patients go to inpatient rehab following a combined or dorsal ventral rhizotomy? We'll see if it was timed out. Gotti's comment for the online audience is as long as you can bullhead your way through the peer-to-peer. Oh, maybe it is only letting me do 40. Okay. Hold on. Okay. Hold on. This is going to be kind of like buying tickets on Ticketmaster where some of you will get your responses in and some won't. Do you have a way? Any Poll Everywhere experts out there? Yeah, we didn't get a chance to do the... Oh, there's a limit. We don't want to limit that. I want unlimited votes. Carl, you can just yell your votes out loud. It's fine. We can do that too. Like if you don't get one, you can just... For everybody. We get to see your search history while we're at it. So, and this is good though. I think this is good to get going. Like it's good to hear voices. We'll get going on a few issues that are big. We also, we have Gadi Ravivo who's going to join us for a little bit, but despite... We really should put your name on this too. Oh, no. Okay. So, I think it's important as many people that can vote can vote and then we'll get some hands up in the air too. A comment from the audience, if each person pays $1 and we want 100% participation. Yeah, that would be good. Then you can get up to 700. We can also raise our hands because we're all in the same room. Except for the online people, just tell us in the chat what your views are. Let's not pay. Let's not pay. It's okay. All right. So, let's get as many votes as we can. Oh, hi, Chicken. Chicken? What's the dog's name by the way? Oh, Cinder. Cinder. Don't you know a dog named Chicken? Okay. Ginormous Chicken is online. You should follow the Ginormous Chicken. Okay, cool. All right. So, we have another answer here and we can assume that activity is full. Let's go to the next one. Get your answers in before it fills up. You can get tickets to Taylor Swift. Are you likely to recommend a stander for a child GMFCS4 over three years old? This is what we're hoping for, drama. Drama. Yeah, we got some no's in there. Are we full already? Are we full? Wow. Oh, man. Oh, no. I did. Oh, no. Oh, any other votes? So, let's do it again. Anybody that hasn't voted yet, are you going to recommend the stander to the child over three years old? Yes. Yes. Hands up for yes for those of you that didn't vote. Hands up for no. And I got to remember these people. Okay. We got a no. Well, that's because I've been preaching to you forever though, Carl. That's not okay. You have been debating. I've been ranting. So, does using a stander lead to independent primary standing? This is my manipulative question. When somebody says it's full, let me know because then we'll just go to the next one. Thank you. Okay, cool. So, it does not. All right. Does using a gait trainer lead to community mobility without a gait trainer? Just yes or no. Yeah. I know. That's the point. Let's start arguing. This is what we want. Yes. Come up to the microphone. We'll give you your own mic. Scream when full. Just yell full. Full. Should we recommend ankle serial casting after botulism toxin for kids with plantar flexion contractures? Great. So, say no. If there is a sliver, let me know when it's full. Oh, wow. We got 40 yeses for serial casting. What? We will not be discussing that today. Thank you. Do DAFO number nine or static progressive AFO lead to meaningful differences in people's lives? Oh, that first answer. Oh, guys. It's coming. You guys are like, when are you going to present any content? This is really just the two of us being like, what should we talk about? I don't know. It's full. Thank you. It's full. Knee immobilizers lead to meaningful differences in people's lives. Oh, we're moving everywhere. It could be bad or good. This is worse than Tuesday. Look at this. It's full. Oh, dramatic. Yeah, drama. It did it. Wait, hold on. Get on the mic. Tell me about this. Tell me about this. I accidentally spoke and then now they can give me the microphone. No, I was just saying, I mean, it wasn't this exact question, but so I'm in the future leaders program and there's two other physiatrists in the room. I don't know if they're in the room, but we came up. We're talking a lot about wellness and this came up with the number of patients we see. I also can't speak too much because my boss is in the room. All right. So we're going to go back now that we have some answers and we're going to kind of talk about these topics and we would really love your input. You do need a microphone because this is live. So put your hand up. Nathan and I are going to kind of be running around to talk through this. There is a microphone right there. So you can either come up to that microphone. We will also be walking around to talk as well to kind of get input because a lot of these topics are things that I think we do based on practice, based on where we live, based on where we trained. But what should we be doing and what can we talk about here as a group with all these wonderful minds together? Is there a hot button topic in the audience that you guys are like, we really want to get to one? We're not going to get to all of them. So is there a hot button topic that you guys are like, we really want to get to one? We're not going to get to all of them. So is there one that you guys want to get at or is there? Standards. Or this one. This one we actually just brought up to get people angry. We may not because I think we may have to focus a little bit more on clinical care probably. But this is a great one. But I think, I mean, oh, do you want to get into this one? I'm sorry. So we're going to talk like this. This one we'll do. We'll do this one. So because we've got a, so we have a, we phoned a friend to talk about a specific case in this. So I think we're going to start with this to get some information and then we'll go to some of the standard gait trainer questions. And if we get to the other stuff, we will. And if not, that's okay. And we'll keep arguing tonight at the session at the brewery afterwards. All right. I'll make it quick. So let's start with, Jesus, where are my sunglasses? Wait, do you have a remote? If you have a remote, then you can, you've got to come over here. All right. Who works with neurosurgery? Closely. Perfect. You guys have complex movement disorder clinic? Awesome. Okay. Yes. Mixed movement. Offering more than maybe ITB. All right. So we'll talk about it. Can we get hands for that? I'm actually curious about that. Can we get some hands for do you have a complex movement that you work with neurosurgery in the clinic? Okay. What do you think, 50% or so? Okay. Offering more than traditional back of the pump implant. So it looks like probably more than half the room. Good. So how about SDR? Okay. How about VDR? So less. So less. How about navigated radio frequency ablation? What's that? Yeah. Okay. Can you tell us about it? Yeah. Maybe. That's a great question. Thanks, man. Maybe I'm too far. All right. So props to Jeffrey Raskin who is the neurosurgeon in our complex movement disorder clinic. I will talk about two cases because, obviously, I need to talk about cervical, ventral, dorsal, rhizotomy. I picked this case because it's very interesting. A 17-year-old male who was born with HIE, total body spastic quadriplegia, GMFCS5, Lennox-Gastaut. He went through as a panoply of treatments, right, and enteral antispastic meds, came under a lysis for years. Interestingly, he came to us. Elizabeth, you're in the room, right? He actually came from Wisconsin when he was maybe five or six. So his initial pump was implanted not by RIC but up in UW, and he came to us with flex dosing in the 500s. So parents had said in italics there, prior to pump placement, legs were frog-legged, marked stiffness in both upper and lower extremities. They noticed, again, parents noticed improvement. Interestingly, he had a pump failure about four years after. Like he came in, we had interrogated, refilled, and they said they heard an alarm, and we interrogated it. It went haywire. So it wasn't delivering the amount, the flex dosing. So he had a new cath placed with a new pump. And, again, parents reported improvement. And he went through, you know, the life of that battery, but we escalated his flex dosing into the about mid-400s. Again, that new pump, he started at about 200. And they really just weren't satisfied. They just got tired of, you know, they lived in Gurney. If you know Chicago, it's 45 minutes from Glenview where I practice, part-time, as opposed to going to downtown Chicago. So they really got tired of the trips for the refills. He, interestingly, because of significant scoliosis, underwent a T2 to pelvic spine fusion in 2020. So we saw him prior to the procedure I'm going to talk about in 22, obviously, you know, hip dysplasia, limited hip abduction with a positive Galeazzi, significant hamstring tone with an MAS of 3, and, obviously, changes biomechanically in both ankles. Again, GMFCS level 5, maybe some limited standing at home. The parents really decided to explant the pump. They wanted to do something to optimize care and comfort, but not to be tethered to refills with another pump. So with that, Dr. Raskin, because, again, this patient was fused, did not want to do a laminoplasty and a large procedure neurosurgically due to your traditional, if you want to call it that, lumbar peripheral rhizotomy, did a navigated radiofrequency ablation. So this is the first report of this in the literature. He did a bilateral L1 to L5, non-selective, unfortunately could not access S1. So that's important because this kid's hamstrings are tight. Again, there's a video that will run, but basically he applied 50 hertz stimulation at 0.05 volts and escalated with EMG activity to the corresponding myotomes, performing that radiofrequency ablation on both sides. Postoperatively, MAS, significant improvement, at least proximally in the hips for extension and abduction. An initial reduction in MAS scores in the knees, although I will tell you, as a caveat now, is MAS is dynamic, of course, and fluctuates between a level 2 and 3 on exam. And there was no appreciable change in ankle dorsiflexion, of course. He only did L1 to L5. But, again, parents reported significant improvement in ADL management with a reduction in this kid's flexion posturing, at least at the hip and the knee with the flexors. So as a caveat, what are the limitations? You can't directly visualize the nerve root targets because this is done through a radiofrequency. He does a laminoplasty, a small burr hole. So the neurosurgeon is not looking at the field in your traditional VDR where he can cut the roots or rootlets. And, again, so there's limited confirmation of the extent to the amount of ablation, right, intraoperatively. And, again, I don't do any pain procedures. So if you do RFA, over time those nerves are going to come back, or at least the signal. So there's lack of radiographic evidence of lesion effect over time. And, again, the important question here is what's this durability of this procedure for reducing this patient's long-term spasticity? He did say, as a caveat, he could have done some, you know, durotomy to better define the dural root sleeve to be a little more aggressive. And then, you know, potentially maximizing needle placement, longer needle, again, to access S1 root levels. And maybe he could have done a post-op MRI to demonstrate the degree of nerve root lesion. So what this image just shows you is where the baclofen pump is before he explanted the pump. And same thing here, you see the intrathecal catheter. So this is kind of pre-RFA. This is brief, so hang tight. These are the surgical procedural steps for radiofrequency ablation peripheral rhizotomy in a patient with severe dystonia and scoliosis with posterior instrumented fusion. Following a surgical pause, weight-appropriate antibiosis, and intramuscular needle electrode placement, the patient is prepped and draped in standard sterile fashion. The procedure starts prone with a small incision over an available spinous process, which in this case happens to be where the silastic anchor was attached. A 3D C-arm spin is performed with a patient tracker identifying vertebral anatomy from L1 to S1. We confirm accuracy using the image guidance pointer probe. Once confirmed, the trajectories are identified sequentially. The navigated bone marrow biopsy needle is used as an introducing needle to identify the entry point, trajectory, and target. The target is saved along the trajectory and appears as a short colored line overlying the neuroforamen, which is used as a surrogate marker of the exiting mixed nerve root. We remove the I-band to facilitate passage of the introducer needle. A stab wound is created, and the navigated introducer needle is guided to the target neuroforamen just short of the target line. We replace the introducer needle stylet with a disposable curve 15-centimeter, 10-millimeter active tip, 18-gauge unified radiofrequency needle with an injection port. This extends past the tip of the introducer needle to target. The entire exposed tip length of the radiofrequency ablation needle should extend into the neuroforamenal target so the electrical activation is not diffused over the entirety of the introducing needle. A stereostrip on the radiofrequency ablation needle demarcates this length, previously measured on the back table. The ablation target, the exiting mixed nerve root, is anatomically targeted using the neuroforamen as a surrogate marker. The position of the needle in relation to the exiting nerve within that neuroforamen is optimized using physiology. Macrostimulation at 50 hertz escalates from 0.05 volts until triggered EMG in the correct muscle groups will be identified. We interpreted very low stimulation threshold, for example, 0.05 volts triggered EMG in the correlating myotone to correlate with proximity to the nerve. Slight movement of either needle can change the stimulation threshold in a favorable way. Following optimal placement of the radiofrequency ablation needle, we used the injection port to inject 1 cc of sterile saline to create a uniform aqueous environment for homogenous thermal dosing. More than 1 cc of saline may limit the ability to reach the target temperature. Our ablation parameters were 90 degrees Celsius for 90 seconds. Following ablation, we injected 1 cc of local anesthesia and removed both the RFA and introducer needles. After ablation, we removed the patient tracker and closed the midline incision in layered fashion. Each entry point incision is closed with a single interrupted suture. So that briefly describes the procedure. So this is an algorithm of patients present to our complex movement disorder clinic as a potential menu of options based on whether they have mixed movement disorder. In this case, they have dystonia, and depending on their functional ability to either ambulate or not, whether or not you do ITB or SDR. We have started obviously doing VDR, and we have not yet begun doing DBS. We do have a neurogeneticist as part of that clinic to potentially start doing DBS as well. And so rhizotomy, and this just gives you a timeline of the neurosurgical procedures over medical history. And rhizotomy, again, selective improvement in ambulation. If you're a functional ambulator, GMFCS 1 or 2, I will briefly talk about the cervical-ventral-dorsal rhizotomy for a couple patients that we've treated. So in the last five years, these are the number of cases that we've done at Lurie Children's in conjunction with our patients at Shirley Ryan. And so real briefly, we have had a couple patients. We had one patient that was basically hemi-dystonic, GMFCS 1, 2, functional, except for his left upper extremity, and Dr. Raskin did a very focused unilateral cervical VDR with good results. The reason I didn't present it is the patient had other comorbidities and was very non-compliant. So over time, still became very spastic and lost that functional range of motion that was gained in the VDR cervical. We have had a few other patients. We talk about a nine-year-old in the literature that, again, had a sustained HIE event, CP quad, or Dr. Raskin did both a cervical VDR as well as a lumbar VDR in the same instance. And this is for care and comfort. It's non-selective. And the point is that this patient's ability to have their ADLs managed by parents was significantly improved after doing, again, a selective VDR. So you're addressing not only the sensory but the motor component. There is some talk, again, then in the literature, if can you do more of a selective VDR in a GMFCS 1 and 2 patient that will present more with a mixed movement disorder, like spasticity with dystonia. So that's to come. And if you're interested in any of these cases, if you just look up Jeffrey Raskin, everything he has published is online and access. So here's this article that I basically talked about our one patient. Yeah, I think that's it. And we got to the zoo, and we got to Cabrillo. So if you have some time, maybe now that I'm done, you can. And if you can find my seven-year-old hiding as a monkey in the back there. As a penguin. So I guess a question then. So we have this information plus the information you had before we came here. Are folks routinely talking to the families about VDRs? Yeah? You are. You are, OK. We've got some yeses. We've got some no's in the audience, too. Anybody want to tell us why it would be a no in terms of not bringing it up? No? No? So is it, did you want to? I'm sorry. I'm looking for body language here. No? OK. For the folks, can we just do some hands? I'm not going to come and tackle you and make you talk. But in terms of, are you routinely talking about VDR? Can you raise our hands? OK, we have some and a lot of folks that work at big institutions. And then, yeah, I'm not sure. And then, no, you're not routinely talking. Can we see some hands up there? OK, and then we're just missing some hands, too, so a lot of no's. Does anybody want to share any reasons why you would not? So I think a lot of conversations, we talk about things that we don't necessarily recommend. We can say, this exists. We don't know a lot about it. I want you to know about it from me. Is access, it's an access thing? Access to life. Who takes them? So what? Yeah, go for it. Oh, no, I'm a no, so he decided to be a yes. At least in our case, most of the VDRs that we've done at Texas Children's are GMFCS-5s. So there just haven't been as many goals that would warrant it. So what are your goals? Generally it's been pain, comfort, positioning. That's usually when we're hitting limits as far as those things go. Or intolerance to a pump. We've now had a couple that had pumps explanted and then had VDRs done. So what's the goal when you're having this conversation, I think, is really important, right? Coming to Mary. Can I have one microphone? Just... Sorry, microphone drama. All right. Just to play devil's advocate, on the other side, if somebody, their body... If something changed so much with the combined, like with the VDR, then... It's a good call. Yeah. And I think part of it is we're not looking to make broad sweeping. I know our questions are broad sweeping, yes or no's. But the whole thing is like, can we battle? Overall, for the folks that have patients that are getting ventral rhizotomies, is the overall experience positive? OK, so we've got yes. Does anybody have a, it's not an overall positive experience? You're the one. Right. So I think it's patient selection. mobility in the community, do not ask me how this happened, came from another institution, was using his gait trainer in the car because he had such a terrible hip extensor contracture that we could not flex his hips. So this kid had a standing power chair and then they did a combined rhizotomy and now he can't use his extensor tone to stand but he also needs hip surgery to sit, so what do you do, right? So patient expectations, family goals, what are we doing, what are our goals? Obviously this was, he's gonna get hip surgery at some point so we can get him into a seated position but when you think about your patients making sure that there is that expectation, because that's a weird story, right? Please don't let that happen to your patients. That's a weird story but that also could argue why inpatient rehab might be a reasonable thing to think about for training the caregivers. How are you gonna do transfers in this body that moves differently now? Wean the tone meds, increase the tone meds, they just have a different physiology. So I think it could go both ways. So and that's a good point. So we don't just send these patients to Dr. Raskin and he does what he wants on his own. So these kids come to our clinic with the physiatrist and the neurosurgeon and a social worker and a physical therapist. If they're ambulatory, they get gait analysis first. If they're not, if they're GMFCS four or five, the social worker meets with the family and says, do you understand what we're getting into? What are your options? What are the choices you wanna make? That's why they also have a physical therapy assessment. So we're not, the parents are not going into this blindly because absolutely we understand from a functional standpoint what happened. The neurosurgeon's like, look, I did my job but, and I'm done. So doing these procedures where you're doing a cervical, thoracic, and maybe lumbar, you know, combo surgery is a big deal. Especially if the parents don't have the, their expectation is not known. Yeah, I mean, I was gonna say something similar, like the, I don't have a clinic at my institution that does them, but I send them to a nearby clinic and they have neurosurgery, a physiatrist, orthopedic surgery, a PT, you know, so that, so I had a kind of similar patient, wasn't, was more just only able to be in the stretcher because of issues with the hip that we discovered and the tone. And so I was like comfortable sending them to that clinic because I knew that ortho was gonna like see them for the hip too. So like if they needed to address the hip first, then that was gonna be done and then could proceed. I'll let Matt go. Oh, yeah, Matt McLaughlin, Children's Mercy in Kansas City. I think the reason why we're not probably talking about ventral dorsal as much as we should is because while we do them at Children's Mercy, there's the pump that we put in. And I think that's just way too frequent of a option, but the benefit of that is it's a reversible thing. And that's the, I think the selling point for most families that they look at it and say, you're meaning to tell me that like we can trial this, we can do a pump, we can see what happens. And then if that's good enough, we're good. But in the situations that you have pump infections, you have pocket issues, you have catheter problems with all these pumps, then that's I think when we go more that route of having a ventral dorsal. And I think the comment about a selective patient for that procedure is very valuable. And knowing what actually you want out of that surgery is the biggest thing. I always call dorsal rhizotomies, selective, selective dorsal rhizotomies, because you have to select the right patient to do a selective dorsal rhizotomy. But this is even maybe more so of a selective situation because you have to know exactly what you want in the end of it before you actually go down the route of telling a family that you're gonna do something that's a permanent change to a tone, especially if as you indicated in one earlier situation, just that some of that tone is functional. So two things on that. Are you saying that this is like everything else we do and we should ask the patients and the families what they want? Is that what they're saying? The hard time I have is just not talking long enough to listen to what they want, Carl. I know how that works, Matt. I think one of the things, so in our population we've actually found that we're putting in less pumps and we're actually doing more combined rhizotomy because we have such a large catchment area that there are patients that are not appropriate for pumps that can't get to us, that can't get refills, that no show to appointments all the time, that are not safe to get pumps because of the complications. And so we have seen a big uptake in combined rhizotomies because we are so hyper-selective about who gets a pump based on our safety concerns. Selective, selective, selective, selective. Yeah, thanks guys. Kevin Murphy, wonderful discussion. I wonder how many people ask about crawling and I don't need a hand raised, but most people don't ask about crawling and I haven't, but I've learned that's a good question to ask. Especially the older kids, young adults, the threes and fours will use crawling to get around their home and living environments. Nobody asks the question, especially the orthopods. Something like this looks very exciting but you need to talk about crawling. They don't like to talk about crawling because it embarrasses them. No, really good point. Andrew Skalsky from Rady here in San Diego. Have you, for the people doing the ventral, have you ever tried doing a motor block to then predict what the surgical outcomes are gonna be? Like with IR or someone like that? Have not. We tend to kind of, we will not do any of this unless they've had like hemodenervation, at least Botox phenol beforehand, to be like, hey, what happens if we decrease some of the spasticity before we go for something that's permanent, but we have not been doing motor blocks. Anybody doing them? Thoughts? Something to think about. Good consideration there. Yeah, so this is, just if you guys want some of the research, we are, we do have some studies that we're gonna pull up. All the references are at the end, but this is a combined rhizotomy study that just looked at 50 patients that looked at some benefits in standing and range of motion. Take a look at it. It's very small. It's 50 patients. I feel like people in this room, we've probably done more than 50 combined rhizotomies with the people that are sitting here, and there's just not that much out there, right? We just don't have that much data. Okay, any other combined rhizotomy questions? Why we did this in an expedient manner. I mean, that's, that's the goal, though, is the things that we're talking about, to, to, especially for those, like, we're not, we're not doing them in Nationwide Children's, and we have a massive CP program, and so it's the reason why we want to bring up the conversation. All right, standards. Yeah, can you go back to the poll? Yeah. The, the, do standards stand? So, yeah, okay, so. So, interesting that these, so, are you likely to recommend a standard? 95% of us say yes. However, 85% say it doesn't actually lead to standing. So, why are we using standards? There's other evidence-supported outcomes that are meaningful. Range of motion. If the kid likes it, let it stand. We heard that, and that's a good one. So, one of the other ones I heard was GI. I heard bone health. Social. Range of motion. Pulmonary. Yes. Sleep-wake. Interactive with their surroundings. Okay, cool, and yeah, so we heard those things. Do we have evidence? I mean, so we know this, because we get anecdotal evidence in our practice. We, we, do we have evidence? Because a lot of us point back to here. We saw this article yesterday, too. We go back to this evidence, and, and I think as we bring this up, the reason we wanted to bring it up is because as we dig deep in an article like this, it's just a bunch of reviews of case reports and single cases. Oh, there we go. That's, that's, yeah, we'll get there. So, you guys remember that Laura, who's not here, I told her I was gonna be like, I want to pick your brain tomorrow, and she left. Yesterday, I brought up that slide, and it had the evidence for standing. It had all the F-words, right, and it had the stars, and the stars were the ones that had good evidence, and then you look at what was referenced in that star, and it was a review article. It wasn't primary research. So, when you look at these references, when you look at these studies, don't just look at the picture. You gotta look, right? So, there isn't really good evidence. You went through some of it. What are you guys saying? How long are you telling people to stand? It's like we got as long as you want, as long as you want. 60 minutes a day. What you tolerate. Does it matter how far into standing these kids get, or is it just some weight-bearing? What's their goal? What's their goal? Okay, so here's a question. So, we've come to some relative agreement here, a good enough agreement, that standards, that they are being prescribed, and that they lead to standering, and not necessarily standing, right? That's a new verb. I'm coining it. So, the question, are we facing more insurance than else, because we don't have good evidence? I don't know the answer to that. Are you seeing a lot of them? I guess some deny it. Yeah. Private insurances are starting to deny the standards, and then Medicaid is still covering them for now. Yeah. So, question, if we are under the impression, so what percentage of our families that get a stander in their home think that it is a step before their child independently standing? High number, low number, what do we think? High number. High number. Are we consistently telling them, because we have that opinion, we have a pretty shared opinion as a group, are we consistently, when we write that prescription, and we sign on the paper for a stander, are we consistently telling people what our clinical experience is, and what we end up seeing, because we have GMFCS, so we kind of know which way people are going to go, or it's difficult to predict the future. Do you think we're doing a good enough job communicating to people what the most likely outcome of that stander will be? We got it. Do we have yeses and noes? What do we have? Carl, Carl Klamar. Have you heard me rant, Carl? All right, so Carl Klamar, Nationwide Children's. Nathan and I have been going around and around about this for a long, long time. I've changed my practice in this area. Do I recommend them for kids in, like the case he said? No. Do I write for them? Yes. But my emphasis is always on the social interaction and the child's enjoyment. If the child's not having fun in the stander in their trials with CPT, then there's really not a good chance that I'm going to sign that order. Do we have similar practice, or some people like very much stronger? Anybody want a mic? Hit it. Go for it. Also, what about our non-CP population? What about our kids with DMD, other neuromuscular conditions? Well, I'm commenting on that one, but so Laura Hobart from Little Rock. No, I think I've had a number of kids whose braces have ended up in the sandbox, and moms have come to be in tears over, you know, various fights. Like the stander, if it's a fight, eff it. Like, I mean, seriously. That's the second Laura eff in two days. Yes! Like y'all who know me, I have to say fuck at least once a day. All right. So, no. Yes, it's true. The bigger issue is, you know, again, it's if the kid enjoys it, if they're helping to get the clinical benefits around, but if the kid's being miserable, god, you don't want to medically traumatize a kid either. And so that's my bigger thing. That's my bigger point for this population. Okay. Yeah, I'm gonna put my own opinion in here. They gave, the Academy gave me a mic. I was supposed to be leading discussion, but here's an opinion. I think that if you have the experience where you ask people, does your kid like their stander, and you just ask it, and the parents are like, no, right? That happens sometimes. The kids like it. I'm like, keep standing, standering, standering. But when you get it, and they say no, and then you can, you have an opportunity. There's a clinical opportunity right there to discuss what we actually know about standers. You know, do they prevent fractures? We do not have that evidence, right? So, on that note, before you keep going, all of the evidence is just looking at bone density. So it is looking at, is there improved bone density? The studies are not. Great. We'll pull them up. But it's like, they stood for two hours for five days a week, and these other kids stood for 20 to 30 minutes three days a week, and they looked at their bone density, but what does that correlate to? It wasn't significant. It was in 12 kids. Amen. I'm not swearing on this mic. Keep going. Yeah. So, as we look at it, I think my one point to put in here with standers is that we can have a compassionate conversation with families, and you know what we get? We get a lot of parents that cry when they realize they don't have to use the stander anymore, and there's not, we feel this need to be utilizing it. There are certainly, and so I'm certainly arguing one side of this, and I know that I'm doing that. I have a ton of patients that have standers. I should say that. But I think I have a lot of people that unnecessarily have standers and put a lot of time into that when they could be having fun and participating in the community, and they could be potentially frame running. Raise your hand if you've heard of frame running. Okay. Can you put a video on? Do we have any videos about frame running? Oh, look at that. So this is not actually frame running. So this was a study that looked at steps. We'll go to frame running first, and then I'll come. Okay, we'll get to your frame running. So I saw this at the European Academy for cerebral palsy, and it's a very common thing in Europe. GMFCS 4 and 5, the frame is basically, it's a bicycle seat. It's all bicycle parts. It's modular. It's a trike in terms of the number of wheels, and you need a propelling limb, a single propelling limb to race and do track. GMFCS 4, GMFCS 5, you don't even necessarily need head control, as we'll see. It's a great participation. Doing something for fun, recreation, and leisure is really important. I enjoy the feeling of actually being able to run, because I can sort of run in my walker, but not to the same extent as I do in the frame runner. I also enjoy the social aspect, too, and the competitive aspect. So, yeah, they're the sort of things I enjoy about the sport as well. Just being able to go for a run in your local area and just feel part of your community, that's been incredible. It's not all about being an athlete and competing. It's just like the way kids ride a bike or learn to swim. Kids can go for a run with their friends or family as they get older, with support workers, friends. It's just, yeah, an all-round great thing to do. There will be an inquiry form online. Another personal thing. It's my dream by the time I retire that we're all raising our hands about frame running. So, yeah, contact me if you ever want to talk about it. And I've got the guys who make them called Frame Running USA. They're fantastic. They will come out to where you live. So they'll come out and do a clinic where you live, and your patients can do it. Let me know. I'll connect you guys. It's the best. It's a weight-bearing thing that's actually community participation. So when we get back to the F-words of Cerebral Palsy, and we think about the ICF, that seems to align better in terms of participation and exercise, too. No, no, no, don't talk. There's not a whole lot of time. I think my question is, I think all of this is great, but there are families and patients that don't have any safe environments to be out in the community and to use a frame runner or anything like that. And the only place is a safe standard in the house. Kind of like that equity accessible question of, are we stopping to prescribe standards when it's the only option, even if the evidence is not great, it's the only option to at least provide some way of bearing opportunity for a child that it's developmentally appropriate activity. Yeah, it's a good call. And I think when you think about equity, that's important. So frame runners is a privilege. Having a frame runner would be a privilege. We're not getting insurance to cover it, right? It is a privilege activity. Do we offer privilege activity to people that can take advantage of it? We do, right? And then the other question is, is nothing sometimes better than a standard? And that's room dependent. Yeah, or are there risks of not, like what are the risks of not having a standard, right? And I don't think we have evidence to know, right? Like kids who don't have standards, do they have worse contractures? There's no real evidence out there. I think anecdotally, when we talk to patients, we say it does all these things, which this entire room, when you ask them, they have answers, right? Yeah, yeah, yeah, so it's coming for I'm gonna have you come up and so what she was saying is that You know people who come from other countries that don't have the opportunity have worse contractures, right? And so maybe but also is there a difference in tone management? Is there differences in medications? Is it the standard that is changing that I don't think we know but we do see changes in presentation of disease processes when we do not have Access to what we are prescribing right and even if it's just a standard in school that a school PT is using Right. There are a lot of different ways that you can look at this, which is why we're all here having this conversation Yeah, my question was partially answered about insurance that I know we talked about standard denials But I at least in Illinois, I I'm usually able to get EI to get a standard So as long as I get that process going early intervention first steps, whatever it's called in your your stage I'm usually able to get the equipment through early intervention and usually by the time they're too I'm gonna know if they would be someone who might benefit from a standard. So Yeah, maybe I can get a frame runner through. Yeah, I do it and there are really small ones at school And I think I think we did specifically put that three-year-old It's an arbitrary number that we chose because the standard conversation is totally different for the kids under three at least at least as I Have it. It's a different conversation versus the eight-year-old So we had a kid recently whose family would put them in the standard like three hours a day at least because they were hoping It was gonna fend off orthopedic surgery, but looking at the child you knew they were still gonna need orthopedic surgery so I think that like Being realistic about that and actually having evidence to say whether or not it does would be super helpful. Mm-hmm Yeah, so looking at the evidence that exists I did not find anything about hip development in the research Even though that is something that my orthopedic colleagues are always like it's gonna improve hip development. They're not gonna have hip dysplasia I do not I did not find an article that actually Says that in the literature if anybody has that and I didn't find it, please let me know But I think there's a lot of this stuff that is being said that we are taught that we are talking to families about and like realistically What are our goals and I think as rehab docs we need to be specific that like My goal for your standard is it might help with these things that might help with the social aspect I don't think it's gonna stop orthopedic surgery I don't think it's gonna lead to primary standing and I think I I think I might change my practice and adding that into my conversation Based on this conversation here. Yes, but again one size doesn't fit all and I'm my counterpoint is if they're not standing Then what are they doing sitting? Okay, so when we're sitting is good too, right playing basketball not that so it's asking the right question It's not a change orthopedic, but if they are standing for six hours and now you say well, it really doesn't change anything So if they're not standing they're sitting and they're out in the community sit or they're lying down Yeah, or they're on the community. That's the thing. It's it's way so that maybe that's the best part of the conversation It gets back to the concept of time toxicity of like when we do something we take away people's time Or asking the parents to then if they're not standing then they're gonna be stretching them because they can't go to physical therapy because that's Not really functional, but now the parents are stretching them to avoid More tone. I don't know. No, are they? Is that working? The other thing that I will say I'm sure we've all had this experience where the orthopedic surgeons in the room and starting to talk to them about how they need a bilateral hip surgery and then the mom starts crying and is saying like we stood for two hours every day like we couldn't like what should we have done and you're like Oh god, there's like literally nothing more you could have done and I don't even know that that matter And so there is that like maternal guilt. Sorry dad Yeah Go for it. There is a study that came out of Sweden in 2011 that showed that children who stood in a B duction And they did a longitudinal study and they had a lot of patients who were in the study and the therapist quote this all the time that the Migration percentage was less So, I don't know if you went back as far as 2011. It was Martinson And It it doesn't prove the point but if you read it only superficially that's where the I think that's where a lot of the information is coming and it was sort of rampant in the community PT Global Lore maybe I did it. I didn't see that study. I'll look for it Yeah, that one became like the language, but it didn't it didn't actually do surgical outcomes a jank stander. Yeah In terms of tolerance, let's get you a mic abduction standing is torture devices So so in terms of tolerance this like this is really proposed by physical therapists and I see it from the Orthopods on all the time and these kids are being tortured in abduction standing So that's kind of that's something that I truly talk to what the families about what we're truly trying to get us as results Okay, I'm gonna try to summarize so take home points from this conversation Once I have your comment good No, I was gonna add we've talked a little bit here about how we are not the only sources of information for patients about this ortho Also preaches that the stander will prevent dysplasia for us. I just want to mention therapists, especially in the episodic care model a Early burst of therapy the purpose of it may be to fit and trial a stander and then they discharge them from that Burst where their HEP homework is to do the standing and then they come to a visit with us And there's a lot of inertia there to say actually it's good for us to challenge the evidence But I think there's a lot of inertia They're like this is the only thing my GMS ES 5 kid can do and that's what we're doing to feel better You mentioned the paternal guilt So I think it just there's a team here that's advising them and a lot of times they arrive To meeting us for the first time already with that sort of establishes their primary treatment program I love it. And I think figuring out like what what have you been told? What do you understand is the goal of this and what are your goals and using this right? Because I think a lot of it is if we're not the person they're coming to us. They already have it have a stander They've already been using a stander. Like what's your understanding of why you're doing this especially for the kids that hate it Yeah, and it's interesting that that one that I caught those words there this is the only thing my kid can do and they're Doing it. We're just putting a minute, right? I mean, it's it's it's tough They're upright, but we're putting them in it and then but they can do things. That's the thing I think there are things they can do and I think that's our job to also as kids get bigger. This gets harder, right? we have Kids who are two and three that are starting to use standards when they're little and then I have families coming to me and they're Like my 15 year old that weighs 70 kilos. It's just too much work To use a Hoyer lift get them in the stander we need four people there in order to get them strapped in get their braces on like It takes us to it takes us two hours and they tolerate it for ten minutes and you're like Guys, let's have a conversation, right? But I think that's something that look at Phoebe coming to the microphone But I think that's something else that we have to think about right? It's not just like what age are we talking to? that's why we put the question at three, but I think it brings up more questions of Do they like it? What is the family burden? Right, and what are our goals and expectations? And what what is it doing? Level what about standing function in power chairs? Because I know I've fought for that Who's fought for a standing function in a power chair At least we can get power elevation now right standing functions a whole nother level and I know You know, I have at least one GMFC s4 who's like it changed her life She her mom is unfortunate like yeah now she can reach to shop more and pick more things out when we go shopping So I don't like this. Yeah, because she's very fashion-forward But but you know for our patients with muscular dystrophy, for example who were you know? We're worried about contractures as they lose function You know, what do people feel about that? Yeah, I also have a this that's really interesting to you I have a patient who came in to DMD clinic and He was like, yeah I stand at school to avoid in a urinal because I don't have to take all of my clothes off and it's easier to do my ADLs at school in My power stander and I was like I'm gonna talk to all of my boys about this in clinic, right? Like this is such a functional use even if it's not for the other things that we talked about, right? So we probably won't get a lot of disagreement in that room about this topic of power standards It's not the same as the static standards probably and I think Phoebe to your point to it I was just saying like getting a kid into a stander is a burden when you have a power stander They're already in it, right? You have to put a piece on their knee It's a little bit easier Also a lot of orthopedics love when they're wearing their knee guards because it keeps them from getting contractures Especially in our DMD population keeps their knees a little bit more neutral all day if they're always using it Does it? Jacqueline from Seattle Children's I think that I have gotten some standing power standers for folks and Two-thirds of them did not tolerate it. So they didn't like the knee guard. They found it extremely uncomfortable eventually their contractures prevented them from using it and then and Then they didn't like how the wheelchair was otherwise built with that feature on it And so I think it's just really tricky and there's not a one-size-fits-all answer for that piece of things Peeing at school is hard for all of them. So I like that idea Just to kind of echo the people practicing medicine without a license a lot of times What I'm saying with families and the conversations we have is not what I'm documenting Because I know that the insurance company needs to hear that's gonna keep them from having a fracture and all these other things I don't believe but the kid is happy and gets to watch mom make dinner and like it's it's a thing For any of these things like how much of our documentation all this isn't to prove what's true But to actually be able to get something that someone would be happy with and again I think we're just all dealing with people who are practicing a lot of medicine without a license looking for any reason to deny Yeah So I so I think it's you nailed a really good point there that we often do Document certain things that we don't have evidence to sit behind we may not Fully have faith in them. I'm not I can't say that standards don't not prevent fracture I can't even get to get the double negatives, right? We could say it could if bone marrow density changes I think that's important a lot of folks here have fellowship programs to a lot of folks here have residencies, too I think it's probably the time that because I mean, I don't know. I mean Carl, you're the one that trained me. So We prescribed a lot of standards No I wonder also if we have not only do we think about what we do at the bedside with this conversation, but also how How we communicate with our trainees to about it because I think that that just like parents come in with assumptions that trainees do also Yeah, do you want to transition to? So gait trainers, I think similar to standards I think again expectations So how many of your patients do you think? Have a gait trainer and their idea is that the reason I have a gait trainer is it's gonna help me walk without a gait trainer Is this a common experience like that? That's what it's gonna be like that This is this is to help me walk. How many people feel like their patients think that? Yeah Patients think that okay, how many of you do you think patients families have the expectation that like This is just another way to get weight-bearing or another Device, it's the most common experience. Is it gait trainers train walking? Independent walking in the community or like what are the what are the parents and the kids thinking? Yeah, or is it this gait trainer is a way to improve my bone mineral density Okay, so hold on the mic for a second Are we effectively communicating that when we write a prescription for a gait trainer? It's been tough in my operation practice because I get like a PT that sends me a message They're like, hey, can you can you prescribe this gait trainer? And I'm like, yeah, but I really need to have a conversation first We need to make sure we have that conversation about what's the most likely outcome from it I was just gonna say even if I have Expressed that I don't think that they'd be walking independent of a gait trainer. It doesn't matter what I say I think the majority of them are holding on to the hope that that will give them the skills to then be independent And that's a true experience, right? But but we have done some good justice because sometimes folks like oh I don't know if I want this like there's a subset of people and it is our job to empower people to work towards Their own individual goals and however, they work I think that the the loss and the loss and justice that we provide when we communicate with folks is if we fail to Communicate what this shows us right here. So our our community has this opinion Are we making sure that lands when you're looking at somebody before you prescribe one of these? I... Because they want to sell it. The question is, does anybody know why it's called a gate trainer? Somebody just said, well, it's called a gate trainer. Yeah. Yeah, so why is this thing called a gate trainer? But I don't know. I mean, are you guys consistent in your practice telling people that gate trainering does not lead to gate training? I mean, I wasn't two years ago. Is everybody else? I guess, yeah, I'd have to guess. You are. You are. In your practice, you're saying this is not an independent device. Is that right? Yeah. So this is a study, not through the U.S., but looked at this Heart Walker device, which is kind of similar to a gate trainer. And they were like, actually, this does not help them improve their independent ambulation very, very specifically. But again, I think something that is important that is in the literature, I think this is out of Sweden, but they talked about more complications like bowel. So some of the things that we talk about in the standing population is what they found in this, and it's more case-based. But I thought it was interesting just to kind of look at what it looks like. So it also has like these pulleys on the feet that kind of like help, kind of like an RGO, but not an RGO. Has anybody ever seen one of these? No, right? I read this article, and I was like, what does this thing look like? And so I looked up a video, and I was like, what about Trexos? Anybody here are getting all these families who want Trexos at home? Becky, that's a frame runner. It is like a frame runner. But it moves. It kind of like moves the feet. So here's a patient who like has some pretty significant contractures, but has some lower extremity movement. And so I think it's just like an interesting thing. There are a lot of these devices in other countries, a lot of research that might, like we need to kind of parse through. It appears, with the size of those wheels, it appears like a very inefficient frame runner. I got in a frame runner a couple weeks ago at ACPDM. One kick, and you're flying. It's fantastic. Yeah, I know. I'm like the frame runner guy now. I don't know. I have no idea. I literally found the video yesterday. There is a company that advertises something like this in the U.S. It's called Taos Orthotics. Does anybody? Taos? Oh, no. Probably not. I've had like two families. Yeah. Isn't it billed? It's like an accessory code for an orthotic device. Yeah. So you can actually get something like this, like HKFO with a frame. So here it is. T-A-O-S? T-A-O-S Walker. This is why we're using the Internet, guys. Any students cover for it? They're really big, though. I think the original ones were really cumbersome. We used them at RIC years ago, but they were not functional. I think one of the bigger things is when we look at these things, like wheels on standing. And again, I think as Kristen said, it was billed as an orthotic. Whoa, that's not an orthotic. Not an orthotic. Whoa. If you learned anything today, this is not an orthotic. Not an orthotic. Wait. Orthotic system. But not easy for parents to use these either. Oh, no, no. Oh, wow. You need multiple parents to put them in the unit. H-T-K-A. No, all right. Head down. No. H-T-H. It's billed as an orthotic as a brace. And covered. Ooh, sounds fraughty. This is good. Okay. I like that, though. I like that. So any other thoughts on the gait trainer? I think the gait trainer is an extension on the stander, and I think that the point that we wanted people to argue about, which we succeeded at, thank you, is that compassionate communication is where this probably needs to land. Regardless of where you land clinically, that compassionate communication is for all of us. All right. Who here serial casts? Who here serial casts after every single time that they do injections for a patient who has contractures? Wait, what? We didn't prepare this. No, I'm asking. So, like, somebody has serial casted before. Most of the people in this room have chosen to do that, right? If somebody has a contracture, you don't do it every time. So what is your indication? What are you thinking? Who are you doing this for? Yeah, yeah. Clarice Sin, the pride of Lexington, Kentucky. Kim. I'm not. You all right? No, she kicked me. I'm not personally doing it, but Shriners, who's next to us, they are doing serial casting for every single patient after every single injection. But now I'm getting all the patients, and they're all expecting that, and I'm like, well, it's not really. It's not great range of motion. I don't think we need it. So right now I'm trying to, like, talk them all out of it. I do not know. It's Ortho who's doing it, so I don't know what the thought process is behind it, but it's the first time I've ever seen it after every single injection. Are you using criteria to say who gets casting and who doesn't? I only use it if I think I need a little extra boost with my Botox, if the family wants it. A lot of times the therapists recommend it, but I rarely use it, to be honest. Yeah, so I'll use it in a few situations. So one is sometimes if I have, like, I see a large, like, autism population that are toe walkers, so it's not always for spasticity, but sometimes they do have ankle contractures, and they're also kids who will, like, absolutely not tolerate any kind of bracing, and probably won't tolerate casting either for the same reason. So sometimes we'll do it to try to get them to tolerate the casting. So that's one population that I'll do Botox followed by casting, but it depends on their range, and you follow up with them, and you see what they need. But in the CP population, I mean, I'm measuring their range of motion all the time, so it's kind of like just depends on what's going on with them, and if we need to get some range back, we'll do it, but otherwise we'll skip it. In the kids with autism and idiopathic toe walking, what do you think your sustained success rate is of Botox? I mean, so I've been in practice now a little over a year since fellowship, and at least that combined with fellowship, I would say that it's gone pretty well. Usually the families are pretty happy with how the casting goes afterwards, and then at least we can get some range back and sometimes get them, like, a heel wedge in their shoe or, like, something to get them a little bit lower down on their heels. So so far it's gone okay. Not every kid has. There was one patient I had who developed, like, a wound and had to stop casting because of that. Thanks, everybody. Has anybody here used turtle braces or heard of turtle braces? I just discovered them the past year. I don't know why they call them turtle braces, but if you just Google turtle braces and videos, it's kind of halfway between a serial cast and not. They have a little zipper in front, and you can put them in warm water and make them soft, and then you mold them around the foot and you make them hard. They get hard, and then you zip them up. They're nice for sleeping at night if you do the serial casting, and after they come out of the cast, they go in a turtle brace maybe at night for a while. Or if you don't need the serial cast, maybe the turtle brace is right to begin with. But there they are. They're kind of nice, so you may want to look into it. It's interesting that you bring that up. I actually had a family come to me and was like, should I use this, and I was like, I've never seen this thing in my life. Now we know. One thing I want to underline when we do clinical things, the word meaningful always comes up. We see more range of motion, they have more range of motion, their heel might be a bit lower. You look at the kid and you're like, is your life different? They're like, I did have a lot of medical care, but they don't necessarily say that anything meaningfully has changed in their own life. I always like to ask families, if we successfully do whatever we're suggesting, this or Botox or casting, what would you call a meaningful difference? And also like, hey, I didn't get to swim, I didn't get to ski, I didn't get to do these fun things because I was in a cast, and I can't get wet, and this was really terrible. I've had several patients come to me for this, and I didn't actually like you, I didn't know what it was. And it was in lieu of serial casting, it was in lieu of night splints as well, because they felt like night splints were more challenging. Huh? Yeah. And actually a lot of the recommendations came from PT themselves, so I'm wondering if it's being disseminated through the PT world, and that's how patients are finding out about them. Yeah, they tolerate them. Yeah, they like them. So in terms of the conversation about serial casting and botulinum toxin, in terms of the language I like to use with my patients, and even prior to doing the injections, is talking about the elastic component and the non-elastic component, and saying that botulinum toxin works on the elastic component of muscle, and that sometimes if that alone is not enough, then we need to address the non-elastic, and that's where serial casting really can play a role. And with serial casting, timing is important, so you time your injections. In Michigan, we have a short span when you think about the weather, and, you know, good weather times with sunshine and warmth. And so, well, not sunshine so much. We do have sunshine even in winter, but it's really the warmth. And so we try to avoid serial casting in the summer months when they can enjoy the lake and the water, and try to do that more in the fall and winter months, typically, and time our injections accordingly. One last. I'm Amy Canalican from Colorado. I've learned, I've become a student of orthotics and feet in my own practice. I feel like the last five years, it doesn't mean I'm an expert. I just think that there's a lot to learn. One thing I learned about recently in the world of serial casting, I had a patient who was followed at a NAPA center. We have a new NAPA center in Denver, and I learned that he was going to undergo serial casting. And I was like, but your R1 is at minus 10, and I can get you to 10 pass with knee extended, and you're tolerating your AFOs. I was just wondering, why is someone going to cast this kid? Yes, is he at risk? He's GMFCS3, like six years old, undergoing to sport in my care. And so I actually set up a meeting with the PT and the person starting this casting program. And I'm sorry, I don't know the name of the method, but their goal wasn't to change R2. It was actually to cast kids at R1, but work on motor skills more proximately in the cast. And so it was interesting, because for me, I was using a language of serial casting, thinking to change R2, but this was really, like talking to the PT, the method that I'll have to find out. Yeah, it was really to work on other types of skills while maybe budging R1. So anyway, Nikki Harris and I had an interesting meeting, but not all language, even in these interventions, is the same. Yeah, that's interesting. I haven't come across that yet. We only have a couple minutes. I think we should, because there's a great talk coming up, we want to make sure we get you guys a nice big emotional break before a strong session next time. The next session's a heavy one for us in a good way, probably. So we're going to try to end on time, which I think we have to do abruptly and just stop. Yeah, just stop. Any lasting thoughts? No. I've just got one more thing. So you guys, those evaluations online, those are one way to do that if you want for this. Also let us know if this is a good way for Pete's PM&R to communicate at the assembly. So is this the kind of session that we find productive or not? Let us know. The answer you give us, don't worry about our egos. We're trying this. No, this is something that we thought would be a good idea. But if you're like, we can do better, we can change this, let us know, because we do have some say in this. And so if it's like an open communication session, that's what you guys want, let us know that too, and we'll share it with you. I think there are a lot of different topics. Phoebe, at ACPAC, there's always an interesting cases where people come and give interesting cases, and there's an opportunity for people to give like 10-minute sessions. And I think that's another opportunity as a community if we kind of decide to do something like that in the future. I think we can all learn from each other, and that's kind of what Nathan and I kind of wanted to do, is there are these topics that we don't necessarily agree on, and maybe everybody in the room doesn't agree, but we want to kind of talk and see what everybody else around the country is doing. So I appreciate your time. Next session at 345, is that right? Yeah, cool. It's going to be good. Okay. Thanks, guys. Thank you.
Video Summary
In this engaging and collaborative session, professionals in pediatric rehabilitation medicine gathered to discuss the practical applications and implications of various treatment modalities for patients with cerebral palsy and related conditions. The session highlighted crucial debates in the field, including the use of ventral dorsal rhizotomies (VDR), selective dorsal rhizotomies (SDR), and the role of standing and gait-training equipment. <br /><br />One major conversation revolved around the implementation of VDRs and SDRs, focusing on patient selection and setting realistic expectations with families. The discussion emphasized how these procedures, though complex and sometimes permanent, could significantly impact a patient's spasticity and overall comfort, underscoring the importance of having a multidisciplinary team involved in decision-making.<br /><br />On the topic of assistive devices, the session pointed out the overarching misconceptions surrounding standers and gait trainers. While most clinicians agree that these devices offer various benefits like social interaction and bone density improvement, it was acknowledged that there is no concrete evidence linking them to permanent functional gains such as preventing fractures or achieving independent gait.<br /><br />The session also introduced innovative mobility aids like frame runners, which promote community participation, illustrating a shift towards integrating functional, enjoyable activities into rehabilitative practices. The conversation concluded by underscoring the necessity of compassionate and clear communication with patients and their families about expected outcomes from these interventions, highlighting the role of equity in accessibility.
Keywords
pediatric rehabilitation
cerebral palsy
ventral dorsal rhizotomies
selective dorsal rhizotomies
spasticity
assistive devices
gait trainers
standers
multidisciplinary team
mobility aids
equity in accessibility
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