All right. So good evening and thank you to everyone for joining tonight's Pediatric Rehabilitation Member Community Session. Before we officially get started, we'll just review a few housekeeping notes. As a reminder, this session is being recorded and will be made available along with the ability to claim your CME through the Academy's online learning portal. For the best attendee experience, please mute your microphone when you are not speaking. You are invited and encouraged to keep your camera on and to select hide non-video participants. This will ensure that the speakers are prominent on your screen. To ask a question, please use the raise your hand feature and unmute yourself if you are called upon. Or you can use the chat feature to type your question. And please know that time may not permit the panel to field every question, but we will do our very best. And then just a quick note about the Zoom platform. So the microphone and video controls are located in the bottom left of your task bar and are controlled by this caret to the right of the icon. Red lines through the icons indicate that those functions are turned off and you can click them to turn them back on. The participants in the chat function are found in the middle of the bottom task bar and you can bring those both up by clicking on each of those icons. The raise your hand feature is located in the reactions section on the bottom right task bar. And then to hide the non-video participants, you can click on these three dots at the top and then click on hide non-video participants. So that is all for housekeeping notes and I am going to turn this over to our community session director, Dr. Hanna Azizi. Thank you. Let's see. You see my slide? You can, but not in slideshow view. Oh, yes. Thank you. Hello, everyone. We are excited to start Pediatric Rehab Community Session Day and welcome you here. We had many topics this year, and amongst those, and all of them were great. Amongst those, five were chosen to be presented today. A lot of work has gone into these presentations, and I hope it will be a great learning opportunity for all of us. Usually, the Pediatric Rehab Community Session has a theme. Ours, we had many variety of topics, and that's why we named it All-Inclusive Pediatric Rehab Community Session Day, AAPMNR, October 2022. The agenda for today, it's first I'm doing it, introduction and welcome, and then we have announcing about Pediatric Rehab Community Leadership position by Dr. Kim Hartman. The topics and the order of presentation is here, and each presentation has a moderator from community rehab leader team who will present, introduce the speakers. Each presentation is 30 minutes total, including time for introduction and time for question, and a 10-minute break in between, and some closing remarks at the end. The presenters today, Dr. Hyekyong Kim, Dr. Talia Kalir, the first presentation, second presentation by Dr. Jensen A. Clark and Dr. Niehaus. Third presentation, Dr. Hobart Porter and Dr. Jan Bacar. Fourth presentation, Dr. Christina Koukouroulis, and last presentation is Dr. Abigail Case and Dr. Sarah Evans. I did something that it doesn't want to, now go ahead. The moderators are members of Pediatric Rehab Community. It's me, and it's Dr. Kim Hartman as vice chair of Pediatric Rehab Community, Dr. Mary Dubon, vice chair of education, Dr. Green, who is vice chair of communication, and Dr. Amy Tenaglia, who's the trainee vice chair. I'll leave it to Kim now. Okay. Hi, everyone. We're excited to see everyone here tonight. I have sent a few announcements via Facebook and SIDS forum for the community leadership positions. We have a staggered rotation of the roles that Donna just mentioned, and so this year, we are looking to fill the vice chair of education, communications, and the trainee vice chair. We've had a few folks interested, but we're still soliciting additional folks if you are interested, so you can send a letter of interest, a CV, to the email on the screen by Saturday evening. That will give us a chance to make decisions and announce who will be our incoming team members at the networking session next week in Baltimore. So, if you have any questions about the roles or what that entails, feel free to reach out, or you can put those in the chat. Thank you, and special thanks to AAPM and our staff who have been with us all this time from the beginning, Tracy Serico, Christina Anaya, Bree Johnson, Grace Whittington, who is here with us today, and Mona Artani. So, now I'd like to introduce the first presenters. The first topic is Pediatric Rehab Medicine in the Middle East, Providing Care in Unique Global Healthcare Settings, Doha and Dubai. Presenters are Dr. Hyekyong Kim and Dr. Talia Collier. Dr. Kim serves as professor and vice chair of physical medicine and rehabilitation, and Kimberly Clark distinguished chair in mobility research at the University of Texas Southwestern Medical Center in Dallas, Texas. Dr. Kim joined UT Southwestern in May 2022. She's a board certified physiatrist and holds subspecialty boards in pediatric rehab medicine and brain injury medicine. Prior to UT Southwestern, Dr. Kim served as vice chair and David Gurevich professor of rehab medicine in the departments of pediatrics and orthopedic surgery of Columbia University, director of pediatric PM&R, and chief of physiatry department at Blythdale Children's Hospital. Dr. Kim also served as associate director of pediatric rehab medicine in the Weinberg Family CP Center at Columbia University. She is a World Health Organization member of the development group to prepare a package of rehab intervention for people with cerebral palsy. Dr. Talia Collier, she's associate professor in the department of physical medicine and rehabilitation, UT Southwestern. She joined the department in April of 2022. Dr. Collier completed medical school at University of Louisville, residency at Emory University, and her pediatric rehab fellowship at Children's Mercy Hospital in Kansas City. She is board certified in pediatric rehab, physical medicine and rehab, and electrodiagnostic medicine. She served as assistant professor and pediatric rehab specialist at Sidra Medicine in Doha, Qatar from 2019 to 2021. Prior to her work in Qatar, she served as assistant professor and attending physician at Texas Children's Hospital Baylor College of Medicine in Houston, Texas. She hopes to continue her clinical interest in CP, brachial plexus injury, electrodiagnosis, and limb deficiency in pediatric patients. She also hopes to continue work in global healthcare in which she previously participated in volunteer programs in Guatemala, Mexico, and Ecuador. Without further ado, Dr. Kim and Dr. Collier. Thanks, Dr. Azizi. Sorry that I cut your bio very short, Dr. Kim. You have accomplished so much that I told them I cut the bio by one fifth, but forgive me for that. I'm going to pay you. Oh, what's going on? Do you want Talia to share? She was... Talia, do you want me to try then? Oh, Talia will share. She said, may I try then? Let me share. Let me try. Can you see it? Yes. Then I'm going to put the presentation mode. So, Dr. Collier, please start. Maybe she has trouble. You're on mute. We'll review our pediatric rehabilitation medicine in the Middle East. And then I guess you'll have to advance to the next slide, Dr. Kim. This is... We don't have any disclosures in our learning objectives. We were going to review the frequent diseases that pediatric physiatrists can see in the Middle East and delineate some available resources in the pediatrics of specialists that we are working with, including orthotics, adaptive equipment, multidisciplinary clinics, and things such as cerebral palsy and spasticity. And we'll briefly talk about the healthcare systems there, including insurance and disparities. Next slide. Okay. So, this will be... Our slides for Qatar is not the same as UAE. So, Doha and Dubai, they always get kind of equivalent to the same cities, but they're not, but they are close as far as the countries. Next slide. As far as the pediatric rehabilitation population, for Doha, I'm speaking on Doha, there's 2.9 million persons there. The interesting thing is there's 88.4% expatriates and only 11.6% at Qataris. So, this population is very disproportionate, but that is typically how a lot of the countries are run there. And why did we choose Doha? We wanted to see a different healthcare system. I wanted to expand interest in international healthcare and also contribute something meaningful for a country that was learning to build its healthcare infrastructure. For the rehabilitation setting in Doha, I was at Sidra Hospital, which has 400 beds and over 3,000 staff and over 84 nationalities. So, there are people from all over the world. We did typically treat and see kids of variety of conditions as what we would see in the US, including cerebral palsy to neuromuscular conditions, genetic disorders, spina bifida, brain injury, orthopedic deformities, and then other miscellaneous diagnosis. We would kind of get the hodgepodge of everything there. We did follow kids at the Sidra Hospital going from birth all the way to 18 years old. Next slide. As far as the services that were offered at the hospitals, some things were already established. So, they did have a full outpatient therapy service. A lot of the therapists were from other countries, so they're expat as well. The population of Qatar being so low, it was difficult to have a lot of local Qatari therapists, although there were a handful in training and or in the workforce, but they did already have therapy established. The inpatient rehabilitation was at a different institute. So, there was our hospital, which was Sidra, but they also had a government hospital called Hamad, and Hamad Hospital had the inpatient rehabilitation program. It was for adults and kids, and they did have some outpatient rehab programs as well. Botulinum toxin injections were available. There was one other physical medicine and rehab doctor there before I got there, so that was not difficult to do, and other specialists as well used Botox. At our hospital at Sidra, there were therapists that were already trained and familiar with serial casting, and they did try to train other therapists coming in on how to use this technique. At the other hospital, Hamad Hospital, they did not have that avenue of care. They did have a multidisciplinary spina bifida clinic. It was originally at the government hospital at Hamad, but we were able to expand it and grow it a little bit more. Once the Sidra Hospital opened, they transitioned all spina bifida care to Sidra Hospital, so it was urology, rehab, and the therapist, and then neurosurgery was as needed. They did come to clinic, but they weren't part of the regular team, and then we also had nephrology. We were able to start a multidisciplinary brachial plexus injury clinic. Both hospitals, ours and the others, had locomat training. We were able to do subspecialized tone management surgeries, including SDRs and intrathecal baclofen, and then they did have neurology that offered nerve conduction studies, which I assisted on some of those as well, and they did have the expertise to do deep brain stimulators. All of the other ancillary services for diagnostic imaging was already available. Various subspecialists were there. The only unique thing was orthotics and prostheses. They were not fabricated in-house, so a lot of the times they would send orthotics overseas, and prostheses the same. They weren't as familiar with pediatric prostheses, so if we did have any patients, if they were Qatari, we were able to send them overseas, and then some surgeries were not able to be done, and then adaptive equipment, those were done at the other hospital. Next slide. The interesting thing for Doha is that they didn't have an established insurance system. There were definitely some disparities on how the insurance and access to health care was, especially between expats and locals. If you were Qatari, you definitely had a little bit more wiggle room and definitely easier to access resources. If you were an expat, a lot of expenses, even for wheelchairs, were out of pocket, and a lot of the expats were from other African regions or other countries in India or the Philippines, where these types of things, even to purchase a wheelchair, were very, very expensive, and the support to get them could be very difficult to access. Certain health care services were limited for certain expat groups, so sometimes the quality for who could have access to services was variable. Limited supplies on some things, just because resources in the country, it was very costly to get things in, and it was very expensive to, they would upcharge those fees to the families and patients, and then I think, oh, sorry, and then a lot of the things, they just weren't available as far as variety of options in the country in general. School was a big barrier, because there's still some issues with building access and accommodations. There were not as many resources for support in school, and parents did not have a lot of outlets for community support, and there's still a lot of cultural stigma for disability there. Because it's an evolving health care system, rules and policies were constantly changing, which did make it difficult for both families and health care providers, and then there were some issues with health literacy and technology barriers. A very wealthy country, and they do have a high literacy rate for education, but their understanding on some things of health care did require extra time and explanation. Next slide. While we were there, we were able to, again, at least expand the spina bifida group. We were able to establish a transition service with the spina bifida patients with the government hospital at Hamad, and then we were able to start a brachial plexus injury group. We did the first intrathecal baclofen implant surgery in the country, but they have to be from Qatar, given all the other barriers for expats to be able to get that. It would be very difficult, and then we were able to collaborate with the NICU physicians for early diagnosis of cerebral palsy program, and we formalized the more movement disorders clinic with neurosurgery, the therapist, and rehab. Next slide. Okay, so my turn. Can you see me, or can you hear me? Yes. Can you hear me? Okay. Hi, everybody. I want this session to be more fun. Actually, Talia and my involvement in Middle East is a little different, because I started to visit Dubai in 2004, so I actually evolved Middle Eastern care with them. Initially, it's interesting to see that Doha has everything, but Dubai still don't have those things, even though it's Dubai. I tried to help them to build a comprehensive neurorehab program. The general population, as she said, 80%, 90% are expat, and 11% are Emirates, so it's very few local people are there. They didn't have a pediatric rehabilitation doctor for a long, long time, and they're usually, if you see that, about 243 patients per one doctor. It's not a rehabilitation doctor. It's just a doctor, and currently, Dr. Nadia Ashwar Sly, you guys may know her, right? She was trained at Spaulding. She is working at American Hospital in Dubai. Dubai Health Care used to be free for, still, everything is free for the Emirati nationals, but all foreigners are the one who has to actually pay most of them. Now, they have some insurance, the national insurance system, so I was looking for their insurance system, but they have some essential benefit plan or international health plan, so they have to pay co-payment to provide some affordable primary medical care coverage, or for the international health plan, instead of EBP for employees who make more than $4,000, which is about $1,000, they can have this international health plan instead, EBP, so the reason why I started to go to Dubai, I think I know your colleagues here, you guys, many of you guys went to UAE and Abu Dhabi, but the reason why I started to go to Dubai when I was working at CHOP, and we were taking care of a lot of children from Dubai, and I really, maybe they liked me, they invited me to give a lecture, and then they were offering me to come four times a year for the spasticity management after I gave the talk, but I thought that's not really sustainable at all, and I wanted to contribute some pediatric rehabilitation, building the pediatric rehabilitation care over there, so I proposed a five-year project to the government. They didn't like it at all. They said too expensive because I wanted to bring all the therapists to help them to build a neural rehab center over there. So I proposed that I bring all the therapists and also physicians and nursing. So my journey was just like this. It's long journey to build a multidisciplinary neural rehabilitation clinic at Children's Health Hospital in Dubai. So my aim was opening the multidisciplinary cerebral palsy clinic, spasticity management clinic, and seating clinic, and orthotic clinics. The aim was to establish the first multidisciplinary teen clinic for children with CP in Dubai to provide the best care, to advance knowledge and techniques of rehab service team, and to provide a comprehensive continual care. But moreover, I want them to save their money. So to decrease the cost of care for children with cerebral palsy by making Children's Health Hospital be self-sufficient. So my goal is working on the spasticity. So cross-leg is one to be like her, the belly dancer's leg. You know, we can stretch as much as we can with this spasticity clinic. So initially I went there with nurse and PT, because I didn't want to scare them, so one by one. So my program has always started with education and practice and consultation service together. So phase one, we started the injection and electrical stimulation and lectures. Phase two, I start to add occupational therapist. So not only continuing the motor point blocks and OT start to teach upper limb, casting, splint, E-steam, wheelchair clinic, and physical therapist to train the physiotherapy to improve their knowledge in casting, E-steam and AFO. So you can see, we created this pronator splint and then wrist handle orthosis at the time. So I was seriously thinking about their finance piece because they are purchasing this expensive, adaptive equipment from Europe and States. Everything is 5,000 more than that. And then one pair of brace was $1,200,000 from Germany. So it was like making me really upset. So I tried to work on the adaptive equipment clinic together with their therapy team. And the phase three, so as Dr. Collier said, actually, there are huge problem with also orthosis. They don't have that much people who can really come up with nice orthotics. So actually, we initially molded the patient's feet and then we shipped that out to actually DAFO company, Cascade company. Initially, you can see the left side, all the castings. And then also, I think he still worked for CHOP, right? John Ezek start to bring his staff together and he start to train the orthotist. So actually, we finally opened the orthotic lab at the Children's Hospital. And then, you guys may know me because I always try to do multilevel injections to change the function in children with cerebral palsy. So we actually have them make phenol. So first, the phenol, he's a pharmacist. He was very proud. And we were able to do multilevel injections. Actually, since they don't have a physiatrist, but neurologist, they have. But I actually start to train general pediatrician to convert to them as a pediatric physiatrist. So I start to teach all the castings. After I do injection in the operating room, we start to do casting and the therapist come over and they're learning how to do casting. We do a short leg and long leg cast at the time. And then phase four, we finally start to open multidisciplinary team clinic. So we were able to invite the neurologist and then radiologist, therapist, psychologist, all together, we start to see patient together. That's the way I can also teach how to see patient together as a team. So this is my actually first proposal. Phase four, you can see, but it lasted until pandemic, which means about 16 years I was there. So consultant is me, but OT, PT, speech. After phase four, I was able to bring speech language pathologist to open the feeding clinic and do a swallowing test. So we always have a lecture series going every day in the outpatient clinic and procedure clinic at the same time, and PT, OT, and orthotist, we always working together in the children's hospital. So phase five is we are ongoing multidisciplinary CP clinic, but one of our pediatrician who really become pediatric pediatricist, so he opened his own pediatric rehab hospital in Dubai. So he's Dr. Majidi, we call him Dr. Majidi, and he, so it's interesting as we can learn, all the equipment, the therapy instrument are extremely, extremely expensive, even though they're sending this older patient where they have to use the money, but Dr. Majidi brought all the equipment from mostly China, actually, to meet the cost from the government. So he's, and then he brought all the different treatment from the Europe, mostly from Europe. So they were providing intense therapy, but interestingly enough, they, he, actually they are not sending a lot of children to other country ever since we start, but still a lot of children are going outside of the country, but a lot of CP children, actually, they were staying in Dubai with this program. So he's the one who is mainly providing rehabilitation therapy and whole multidisciplinary team approach, since his rehab center has a PT, OT, speech, psychologist education, or he also do injection in his rehab center. So this is my ultimate outcome, but I had to go there continuously because as Dr. Collier says, as I said, they don't have that much local people. So as soon as we train therapist and orthotist, actually they're moving to private sector because they get paid more. So we are actually losing this older therapist and doctors. So I had to continuously training this older people until before pandemic. So that could be my last slide. And then Dr. Collier, you want to take over this slide? Sure. Yeah. And so what we would recommend if anyone was thinking about international experiences in pediatrics rehab, you do have to have an open mind. You do have to be very flexible because it's not, it's just a lot of things that can suddenly change and including staff, like Dr. Kim was saying, you do have to have a sense of adventure because you don't really know what you're exactly going to get into. There is a healthcare system, but it can be very different than what we're used to here in the US. And you do have to learn to think outside the box, some of the solutions or things to try to meet what the needs are in the other countries. So you have to be creative. And most importantly, you do have to respect the local culture and customs when you're deciding on treatment plans. And because that's the most important thing to really get your ideas and plans across to everybody in the community. So shukran. So this is our last slide. So we're going to stop sharing. I kind of forgot how to, oh my God, I know now. So I think we just talk about this one, but I think more other colleagues have more story to talk about Middle Eastern pediatric rehabilitation. So we can bring the questions. Thank you very much, Dr. Kim and Dr. Kalia for this great presentation, especially the time from Middle East. So I can relate with how different it could be in other countries and the culture and the services available to patients. It's not, they don't have access the way that we do here in United States. It's very different. We are welcoming any questions. If not, I have one. I was interested in the stages, how you came up with the different stages of how to start those proposals and if you've used those in other places. So your question is how I put the stages. So when I got there, I didn't, I mean, I only saw the therapist. So the doctors just sending the patients without any prescription. They don't know what they can actually provide. So I thought I really have to educate therapist first, but I also have to have some doctor who understand rehabilitation part. So initial PT is always important for them. For us, everything is important, but I had to attract their interest first. So I wrote PT and then we start to educate PT. Then OT, because OT we really need for the sitting and sensory integration. A lot of patient with a sensory integration dysfunction, not only cerebral palsy, but when you get to Middle Eastern country, you become everything. You are a neurologist, you are a geneticist. So they bring all type of patient, but I made a new terminology, cosmology. There are so many children from the cousin's marriage. So they all have a unibrow. They all look alike. They all have a sensory integration dysfunction. It was very interesting. So I thought, oh, I have to bring OT and then PT, OT, speech at the same time. So we really have a true multidisciplinary team. The orthotist almost from the beginning, because they are spending like thousands and thousands of dollars for inappropriate orthotist from other country. So we have to teach them. So step-by-step, so the government agreed to even open the lab. It was very hard because they don't have physician who understand PM&R, that was that. That's why I think the step-by-step approach was more necessary. But Dr. Collier's case, they already government to set this whole hospital and then involve the specialists. This is so different. Dr. Kim, I have a question on Dr. Collier. So Doha and Dubai, both of them are very, the governments are considered rich, affluent. They have oil. And I know it's a difference in how they provide services to their own nationals compared to others who have emigrated there. It's very different. It's not the same rights that we have here as immigrant in United States over there. They cannot even own their, like a house and like a residence for 99 years, something like that. So, but if we are considering other countries, places that they are not rich, how that would work? How, what are you, what is your opinion on? Right, so thanks for asking the questions. That's my drive to offer the five phase project because only they allow me to see their local children. They can have everything, right? So when I proposed to them, I will teach everything, but you guys promised me to take care of expat. Mm-hmm, so I'm training the doctors and therapist. And so some portion of patient, I can see them together. So they actually, they start to treat the foreigners and then the opening this Dr. Majid's lab, he can accept all kinds of patients if they bring the money, but he also set some portion of his practice for foreigner who doesn't have that much, you know, finance. So that's the only one, but it's very difficult. It's very sad to watch, you know, but they really, government also tried to work very hard, but still, I think that's why they tried to have insurance, but it's not easy. Yeah, and I think for Doha- It's not like the States. Yeah, for Doha, we were able to see a country, people from all different countries. The access, of course, was still unequal. A lot of times you did have social workers who sometimes could help support families. They could apply for funding or special programs through their home country. It was a lot of paperwork, but sometimes that was something, if it was access to a particular medication, like even for some of the gene therapy for the SMA, there were some people from, yeah, I had a couple of patients from other, Egypt, and I think someone from Spain, they had to go through leaps and bounds, but they were still able to access the service through their home country. So sometimes you had to do things like that. I think the biggest thing for us was like equipment or even like spina bifida, some of the catheter supplies and things like that. So we were constantly trying to find other resources. There are charity programs available, but the amount of paperwork that families would have to go through to get charity was very difficult. The hospital was offering some incentives as well, as far as discounting, steeply discounting medications that were hard to get, but the families who really were big advocates for themselves that were expats from countries that weren't as wealthy got a little bit better deal, but still with language barriers and things like that for other families, it was very subjected for who could get the access. So they did try. And I think the new insurance program they were working on before I left was supposed to make some of these things more equitable, but it's still a long road to go. Thank you very much. And I hope we all find the motivation and the drive to help children in other countries and find ways to affect their lives. If we do not have any other questions, I will invite Dr. Tenaglia, who is the moderator for next presentation. One more question, Hana. Just interested from your all's perspective of having worked there, especially you, Talia. For those of us, which I think includes a lot of people who are here tonight who are taking care of patients in our home institutions who are coming, especially from the Middle East, we see lots of patients here, chop from multiple places in the UAE, and then also from Doha. How do you suggest we get continuity of care when we're sending patients home? Because finding that the funding for medical tourism or international services comes out of a very different pot than the monies for care in country. What are the best ways to be able to deliver whatever we're going to do here, but then try to get a transition or continuity for the patients? It's difficult, but I think one thing that probably has to happen is it's always difficult to get a good contact person. Things as far as even just as simple as getting the records from, yes, we do have a lot of patients from chop. Sometimes we don't always have access to the records, but because the government has such a big hand on who can go and who is coming back, the way the information gets disseminated back to us is a little bit difficult. What could happen, there is a committee now that reviews cases to say yes or no if a patient or family from Qatar is appropriate to go abroad. It could be something where that committee as opposed to pre-approving also needs to have a role in getting the information back from the people going abroad to disseminate and triage appropriately back in the medical community. Because I don't think we have that committee on the backend. So that could be one way to establish those connections. But I think it's just finding those contact people. And at the hospital I was at, there's a lot of turnover and staff changes, which I think makes it difficult or who to identify, but I think that would probably be one way. And I can mention it to my colleague that's still there, is there a way that that committee could somehow get that information for the kids coming back so we can get them reconnected appropriately. Thank you very much. Dr. Itzeladia, we finished right on time. Yes, perfect timing. All right, good evening, everyone. I have the pleasure of introducing our next two speakers who are gonna be giving a talk entitled Therapy Across the Lifespan, Developing Therapy Interventions for Youth and Young Adults with Childhood Onset Disabilities. Dr. Niehaus graduated from the University of Cincinnati's Doctor of Physical Therapy program in May of 2014. She's currently working at the University of Cincinnati in the Gardner Neuroscience Institute where she's the lead neuro PT. Her specialties include being a certified brain injury specialist, lead therapist on the transition care team for patients with developmental disabilities, transitioning from pediatric to adult care, vestibular therapist, and a member of the multidisciplinary team treating various neurological conditions. Dr. Clark is the director of the Physical Medicine and Rehabilitation Transition Clinic at the UC Gardner Neuroscience Institute, a unique clinic designed to integrate experiences to provide excellence and transition for youth and young adults with childhood onset disabilities. Her research interests include assessing and developing best practices for patients who are transitioning from the pediatric to adult healthcare setting, as well as improving health equity and outcomes for patients with disabilities. Take it away. Thank you so much for that introduction. Thank you again also everyone for coming this evening and I also want to thank my co-presenter Lauren for hanging out with me in the evening to present the work that we do in our clinic that we enjoy so much. So I wanted to give a few brief objectives. We wanted to discuss interventions for youth and young adults with childhood disabilities. We want to also compare and contrast some therapy strategies as patients age and experience their changing priorities and then help the audience develop some intervention strategies for patients age as they age with their changing life roles and responsibilities. So this slide really I think a lot of us see this in our daily practice but I just wanted to provide a little bit of groundwork with some different muscle morphology that we know that are different between patients with cerebral palsy and those typically developing peers. This graph I like this graphic a lot because it combines just visually what I think we see in practice and how that helps relate to function for our patients. A few things I want to briefly highlight here are at the top A and B a comparison about the fascicle length of the muscles but the sarcomeres are actually lengthened in patients with cerebral palsy. That is again shown in this cross-sectional view where the sarcomeres or the muscle fibers themselves are larger in typically developing peers and they also have more of these satellite cells. It is thought that when patients who are typically developing grow their bones and muscles are growing at similar rates as we know our patients and those with cerebral palsy rates of growth between muscle and bone is different and that can be hypothesized to help lead to some of the things we see for example plantar flexion posturing. The bottom slides just highlight that patients with cerebral palsy have been found to have more extracellular matrix within the muscle fibers. This really just helps us to understand that all the interventions that we do and play out for our patients we have to just be thinking of the mindset of what is the architecture of the muscles that the therapy is targeted towards. I won't spend a lot of time on this slide because I think a lot of us are familiar with the timing of a lot of our musculoskeletal management thinking about from age zero. This slide ends at age 14 but thinking about different interventions that we have that have these critical periods for doing some of our interventions. This slide I want to discuss that we can talk about and like I mentioned that often some of the early changes that we know that there is decreased muscle volume along with orthopedic malalignment and spasticity that interplay and that can often lead to some secondary declines that include muscle weakness, fatigue, lack of activity. Often if there's lack of activity there can be a decline of the muscle function. There can then be cardio metabolic disorders and motor deterioration. All of these things play together and can often lead to decreased participation in life roles and activities and I think this is just important for us to think about as we often see patients and often think and put a lot of emphasis on early interventions but also have to keep in mind what the long-term effects can be and we want to really emphasize and promote more participation in life roles and activities. This slide I think is interesting in that I wanted to just highlight the red line describes muscle strength over age. I'm sorry the x and y-axis are muscle strength over age and then the red line is those typically those that are typically developing whereas the blue line highlights those with CP and as we go across from childhood to adulthood we expect there to be a steady decline in muscle strength but also for those who have CP it's noted that the peaks are lower compared to typically developing peers but also there's a sharper and steeper climb. Now this slide really highlights findings in regards to muscle strength but I would argue that this kind of curve can be applied to function and life participation roles so I'm always asking and thinking to myself what can I do at this intersection between childhood and adulthood and this kind of spectrum that happens what interventions can we do that can help promote this line moving closer to those that are typically developing. Oftentimes that can be done with what we think of as typical physical therapy interventions but also general physical activity I think is a great way for us to try to move this line closer to the typically developing peers. I'm going to now hand it over to Lauren who's going to talk some about the perceptions of physical therapy and as they change across the lifespan. So I'm very happy that you guys had me here to speak today. I can say that I'm pretty excited to speak as a physical therapist in front of a bunch of PNR docs but so I have a unique role. I was actually a pediatric therapist before I moved to adult care so I worked for five years in pediatrics met Dr. Clark when I was at Children's. She was a resident there and we met and then she went away went to her fellowship and then came back and so when we reconvened we started up a little program called the Freeman Center and we have this transition program so we started thinking well we need to look through research and see what's out there. There's not a lot of research out there for adults with CP so we're going to go through kind of some of the articles we found that were super interesting. One of them was an article about how patients with CP view physical therapy as they age. So it interviewed 22 adults with CP living in the community. It was a Swedish article so they were all living in Sweden. Their ages ranged from 35 to 68. They basically wanted us therapists to have a good knowledge of the diagnosis and be attentive to each individual in each situation. They wanted activities that were enjoyable, something that they were good at and then they also wanted things that gave effect between physical therapy like what their well-being. So decreasing those secondary characteristics that you see the osteoporosis, the pain, stiffness, fatigue. So it's kind of different mindset. You know we always patients with CP we would do like 12 weeks on 12 weeks off and outpatient therapy when they were pediatrics but that's not the like role when they get to adult care. It's basically making them functional. So we're going to go through some of those things later. Functional in their everyday life and making because they're kind of like out of that system where they're stuck in areas where they are segregated and they're kind of put into the community once they get to adult care so we have to make them feel as independent and functional as possible. You can go ahead and switch to the next slide. Some little things that they also said in this article or basically they wanted to avoid future problems. So those secondary characteristics that we kind of already talked about. They wanted the therapist to be supportive and listening. We're actually going to go over that later with one of our cases that we have and then a lot of them want to get a job and like work part-time of some sort and get like active in the community. If that is doing a community sport, if that is anything like that. So it's kind of like you're helping them through that essentially. There was another article that was really great. It's getting old so we need to start thinking about you know kind of updating it. Basically this was talking about a therapy model and what that should look like. They seek therapy services not for CP but rather for the things that will help them participate. So walkers, assisted devices, AFOs, you know the like. So I make a lot of times the problem is which we're trying to change this. They usually come to me after a problem already happened instead of when the problem before the problem happens. So they fall and they won't use a walker to start off with and so they now need a walker because they're falling when I would love for them to use the walker in the situations they're using them for like work and stuff before they fall. So that is our goal is to maybe get them access to therapy services. So our role is actually now in communication with some of the pediatric therapists after we went to a conference in Las Vegas and we're trying to get them to start talking to us in advance and like introducing us and maybe have a session with me prior to releasing them from pediatric care so that then they have that communication with somebody. So typically that's through Dr. Clark. They'll meet up with Dr. Clark through the doctors at Children's and so that kind of helps with that participation piece. They also continue to need skilled therapy services but a lot of times they can't find it and that we are their access to that recreation in the community and trying to get those recreation programs for them that we know of. So go ahead and switch to the next slide. Our roles are, this was actually beautifully outlined in this article about what the role of physical therapy is as they age. We want to promote this community and health-related fitness activities. We want to prevent secondary conditions like I talked about you know osteoporosis all of those things. We want to provide input and intervention for positioning so biomechanics, materials, public transportation, how to gain access to it, how to gain access to a gym and a good gym that has like room for a wheelchair. Giving them assistive technology, kind of talking to them about their movement patterns. I've given a lot of home exercise programs, made them accountable for things. So just asking for help and helping them assist becoming as the most independent as possible in the community. Go ahead and switch then. Oh and job development, job coaching, job placement. Those are all our roles. So there's some things in this article that were brought up that are really cool. I think it takes a village for these. So there's a need for assessment and community places. In Ohio that's hard just because we are licensed and everything like that but we do have a couple of groups called Iron Core which is this really cool group of students from the university that started this with a physical therapist and they can go get like it's basically adaptive you know strength and conditioning for these kids. It's called Iron Core here. One of the therapists started it actually an adult therapist that was interested in it. So we like to they we help them to collaborate with different people in the community and address barriers to their function and then they all they said that it would be a good idea to offer like assessments and consultations at community centers which is something I would love to do. I don't do it right now but it was a great suggestion. Go ahead and switch the slides. I don't know if you want to talk about this Dr. Clark. Yeah I can. These are just some additional. So Lauren kind of talked a lot about the therapy interventions and I think it's also important for us to think about as providers that we're promoting physical activity in general. And so I'm just going to put this slide up that was done with Virtusen and the group out of Michigan as well that developed some physical activity guidelines for patients with cerebral palsy. And so I think things to highlight here are that there were physical activity recommendations for moderate to vigorous activity but also recommendations for reducing sedentary activity. So decreasing it to less than two hours a day and having breaks and it also defined what sedentary activity was. I want to now go into a few quick cases and leave some time for questions. So this is a patient that I saw in my clinic. She's a 30 year old patient with diplegic CP. She had the flu a few years ago that she described really kind of knocked her down and she went to inpatient rehab at the time and then eventually went home. She uses her rolling walker which she's named Ellie for ambulation. She was fitted for AFOs and she wears a nighttime stretching brace braces and knee immobilizers. She did work full-time for a shipping company but recently actually changed careers work-wise but she has a fear of falling with a frequent loss of balance. I really wanted to just highlight this case as a patient who I saw who is in this middle phase of life. She actually when she did her inpatient rehab she actually did at the pediatric center and then went to outpatient therapies after that and she was relying more on her rolling walker and her fear of falling was causing her to do less community activities and she really was looking for something to help strengthen her as well as build that confidence. There was a video that maybe is not there but she went to some targeted strengthening interventions with our therapists at the GNI center and was able to improve her gait in that she doesn't actually take her rolling walker. She brings it to my office only because she likes to walk from the parking garage but in the community she actually doesn't use her walker much anymore and she has increased her confidence and decreased her falls. Next we're going to present a patient Sam who's 36 year old with spastic diaplegic CP and he presented to me first with the declining gait. He went to an outside provider and was found to have a L5 lumbar radiculopathy. He hurt his back while working. He did get an injection that was helpful but he continued to have decline in his gait. He noticed that he was using his walker more and more and walking with assistance from the walls. He reports that his left side has always been weaker than his right but he feels like he's noticed it more recently. He previously used braces when he was younger but hasn't worn them in a long time and they cause hot hot and redness. Lauren you want to talk a little bit about what his PT program was? Yeah so he came to me with this following back pain. They had kind of wanted us to see if we could improve his gait a little bit. He didn't really want to be hanging on the walls, didn't want to be using a walker because at work it was hard for him to do the things that he wanted to do. He stocked shelves and it was really hard for him to stock the shelves and use the walker at the same time. So before he got braces he had a crouched gait. He went toe to toe with internal rotation on both sides. He decreased had decreased ankle range motion and increased trunk sway so he would sway back and forth. He got bilateral carbon fiber braces which helped decrease the falls and decrease his walker use which was what he wanted. He looked really great in them. We started giving him a home exercise program. What I loved about giving him a home exercise program is he's wonderful but his mom is super attached to his hip. We're trying to get her to be a little bit less involved because he is in his 30s and he needs to be doing stuff. He's going to work on his own. He lives by himself. So I gave him some stretches and some strengthening that he could do without his mom around and then it also gave him accountability. So he had to go home and do it and then also he had a therapist because they drove four to five hours to get to us just to get Botox and the bracing. So I have communication with his mom. She takes the stuff to the PT. It's kind of hard to talk to the PT on my own just because of the HIPAA violations that can happen. So she takes what I say and he also takes what I say and I encourage him to talk to the therapist and tell her what I have. So I try to keep mom out of it so that he has takes accountability and kind of makes it better that way. He came back to me after he got the braces with an overuse injury just because he didn't have great foot positioning. So we just got him power steps which were basically it's over the counter inserts that are great. You can get them off Amazon and he loved them and it made his pain like you know that go down. So that was great. I know we had some videos but it doesn't look like they ended up. Yeah I think this may be the other PowerPoint so I'm going to just stop share for a second and maybe open up the floor while I pull up these videos because this is the other one without the videos. Yeah if anybody has any questions over these cases or anything but the great thing about this patient in general is that he comes now to see us like every three months and what he does is we sync PT and PM&R. So he gets his Botox and then he comes down to me and I updated some exercise program and I talk through his gait and see if there's anything else that he needs to do. So because he's coming the four hours it's just because where he lives there's not access to that great system of care and then I have OTs and speech therapists if they ever need anything from any of those therapists that I can get them set up that day too. But we have a really good system where Dr. Clark just lets me know that he's going to come in for some Botox and then we kind of collaborate together. So he's actually coming tomorrow which is hilarious that we're talking about him. But this is our first case of our patient who was walking without her walker and this is our other patient that we were just talking about. Here in this video he was just talking about how his CP affects his walking. This one is his dirty male I live alone apartment but this was his walking before we saw him and before we did any interventions. It was his mom kind of showing us what his walking was looking like. And then so we were able to bring him to our gait lab and we gave him these are just off the shelf AFOs that we gave and this was literally we put them on within like he just put them on and then was walking with them. And then this is him probably after one round of Botox. I think he was coming in to visit us and he was due again for Botox. So he's a little bit tight here but his gait after some of our sessions. This was probably before your power steps Lauren I would say. Yep. That actually I think I recommended the power steps like at that appointment. At that appointment. Okay yeah. So I think we did pretty okay on time. I'm proud of us. I wanted to open up for any questions or comments about what we presented today. There was a great talk. I have a question. Yes. This is again, Kim. So the case, what we see, I mean, we all share this adult with the cerebral palsy, how they are deteriorating and then involvement of PT or any procedure really makes them better. I just reviewed the surgical intervention for cerebral palsy, but I realized that we also can apply SDR for adults, right? That really also changes their functional condition. So I don't know, because I don't do every three months toxin injection to adults. They are a little different, but if he requires or she requires a frequent injection every three months, have you ever thought about recommending surgical intervention like SDR? So they don't need to come for regular injection because life has to go with always procedures, right? Right, yeah. When we think about the quality of life, maybe that can be another option. Yeah. Thanks Dr. Kim for bringing that up. I actually recently saw two patients in clinic who had SDRs as an adult. One of them had a lot of underlying dystonia. And so I think functionally it's unclear. I didn't meet him before his SDR, and now we're looking at potentially back with him pump trial just to see if we can get his movement patterns under better control. The other patient I saw that had an SDR as an adult, functionally they're doing okay. I would say as a practitioner, what I found is maybe a little bit harder is finding a surgeon and deciding who and what that intervention looks like. Is that done on the pediatric side? Is that the pediatric neurosurgeon versus an adult neurosurgeon? And then what are the outcomes we're looking for? And so I think it's something I've definitely been more interested in as a question. And because I've seen a couple of patients who have had SDRs as an adult, but the outcomes that I've seen have been variable and I'm not quite sure where I feel like I land on the fence with that, so. Yeah, I totally agree because we still don't have that much experience with the adult with the cerebral palsy, but I think this is a great case for us to think about it, how we're gonna educate each other and then how we approach this patient as a team, not just like a pediatric, but we also have to educate surgeons, therapists, parents all together, but this is great cases. Thank you. Thank you. Dr. Vasquez, you got your hands up for a question? Yeah, hi, good evening. Kind of like saying into, my question is, is it going to, do we think that it's practical or realistic to expect our adult rehab counterparts to be able to help with this transition? So at the end of the day, do people require extensive pediatric experiences to longitudinally manage these patients better? I think that's a great question that could be up for debate. I feel privileged that I've been able to walk on both sides in that I trained obviously as an adult rehab provider, did pediatric fellowship, and then now I work in adult hospital. I feel like I kind of get the best of all the worlds because I know the pediatric colleagues, I know what the patients are coming from. I can call up anyone and say, hey, you saw this patient, what does it look like? But I know that our system is unique in that that's how we do it here in Cincinnati. And even so, we're still very new with the transition itself. At least what I can see and perceive is that it's gonna depend on what the system can support. So I don't know that it's fair to say that a pediatric system can support that education even for training their providers versus the adult system can support all the education. I think it has to be a collective amongst all of us. I think pediatric providers have to continually to support our adult providers. Like for instance, when I was out on leave, all my adult colleagues took all my patients. And so kind of keeping that education fresh, but then also having our pediatric providers be a bit more comfortable with the transition and preparing them to be received in the adult healthcare setting. Yeah, it's just that I see some of these conversations that happen sometimes in Facebook groups, et cetera. And the differential diagnosis that some people have with kids with childhood onset disabilities, stressful policy, and most of the time, like the pediatric physiatrists are like, there's like a very quick anchoring bias sometimes. And so therefore I'm concerned that their function may not be optimized if they actually don't have the lens of that pediatric experience of kind of like that background. So it's something that I had been thinking about just because I have to deal with a lot of like transition in my patient, I feel so bad because I just need to like, jump them over and there's really not a good safety net. But just thinking, I like developing programs. So just thinking of programmatic development in our institutions, how we should be tackling this as bigger programs with our adult counterparts, because there's a lot of education and experience that is required, I feel, not just like, are you comfortable taking an adult with a childhood onset disability? Yeah, I think I would almost argue to say, we have to teach the pediatric providers to have a future lens of the adult onset complications, but we also have to teach the adult providers to have a backward lens to understand why the gait looks the way it does and think about other like presentations, a shoulder pain is not gonna just be a shoulder pain, right? A knee pain, we know from all the past surgeries, does the adult provider understand what a similes is? And so I think it has to be kind of that two-way conversation for both providers to stretch out their comfort zone a little bit about what they feel comfortable with. But I think we have to do that to help provide the best care for these patients, because I think they require both. Awesome, thank you. Thank you. You guys did great on time. We still have about three minutes left. Does anyone have any additional questions? I just wanna comment that I keep working with this adult with cerebral palsy. Also, I'm opening the adult CPA clinic at UT Southwestern. And I almost feel that we may need to create some fellowship for this transitioning patient, because we have a lot with childhood onset disability, right, not only cerebral palsy, but spina bifida patient, brachial plexus, these all the ongoing issues. We cannot just throw the patient to adult providers because they wanna do it, but they don't understand the whole spectrum of their problems. So I don't know we have that bandwidth, you know, to have another fellowship, even we barely have a pediatric, we have fellow applicants. So that kind of stuff where we can think about it. But I think we have to continuously discuss these matters. Hmm. Any additional questions? I just want to say that I don't think our adult colleagues are really, they are able at this time to take care of CP patients, the same as pediatric ones. I mean, a pediatric patient with CP who grows old is not the same as someone who has a stroke when they are 40. So it will be important to either, as Dr. Clark was saying, either train them or train the pediatric ones. So, but it's on our hands, in our hands for now. Thank you. All right, thank you guys. Well, with one minute to spare, I'm gonna pass it over to Dr. Hartman to introduce our next speakers. Sure, great. So switching gears a little bit, I am going to be introducing Dr. Hobart-Porter and Dr. Jan Becker, both from Arkansas Children's Hospital. They are going to be talking to us about the diagnosis and management of sleep-related breathing disorders in patients with spina bifida. Dr. Hobart-Porter is an associate professor of PM&R and pediatrics, and she is the new interim chair of Pediatric PM&R at Arkansas Children's. So congratulations to her. She also served as medical director of the Spinal Cord Disorders Program at Arkansas Children's and has a particular interest in patients with spina bifida. She is board certified in PM&R and pediatric rehab medicine, having trained at Kansas City University of Medicine and Biosciences, followed by University of Arkansas, and finally, Cincinnati Children's for her fellowship. In her spare time, she's the co-chair of MedCamps of Arkansas, which provides camp experiences to children with functionally limiting medical conditions throughout the state. She has additional interest in the application of clinical practice guidelines through implementation science, as well as transdisciplinary clinic models and clinical outreach programs. Dr. Jan Becker is a professor of pediatric pulmonology and sleep medicine, and medical director of the Pediatric Sleep Center, also at Arkansas Children's. She is board certified in pediatrics, pediatric pulmonology, and sleep medicine, having trained at SUNY Downstate for her fellowship. Her primary research interests are sleep disordered breathing and the effects of inadequate and or disturbed sleep on the wellbeing and health of children. So I'll let you guys take it away. Thank you, Kim. All right, I'll work on sharing this content. Okay, so this is in part supported through an information scholars grant, but otherwise we have no additional disclosures. Objectives are to describe how abnormal neural tube development contributes to sleep-related breathing disorders, talk about the different types of sleep-related breathing disorders, and talk about the relationship between those and the development of children with spina bifida. As you all know, spina bifida is the failure of the neural tube to properly develop in pregnancy. And it does contribute not only to the development of the neural tube, but when you have that development, the back is creating a different pressure gradient. And so that's causing some caudal and posterior pressure to the entire central nervous system. And so where that's problematic is that it can pull back some of the posterior structures and causing them to herniate to the foramen magnum, such as the Chiari malformation occurring in 80 to 90% of our kiddos, and also can result in some hydrocephalus, 80 to 90% again, typically. I am so sorry, Laura, but we don't see your PowerPoint. I was thinking maybe it's me, but I don't know if you shared. I did. Yeah, I'm so sorry. I was thinking maybe it's me and I was just asking others. None of us can see it. Okay. But we did pilot this and it worked previously. If you have more time, just go to share screen. Yeah, of course. Thank you. You shared it before, so it should work. Yeah, thank you very much for letting me know. Okay. Okay, perfect. Can you see it? Can you see it now? Yes. Perfect. Okay. So as you know, Chiari malformation hydrocephalus goes along with spina bifida quite frequently. We also see epilepsy, which is co-occurring about 20 to 25% due to the abnormal development of the central nervous system structures, migration anomalies, and then increased risk, likelihood of intracranial surgeries and infections. As I mentioned, we were talking about the posterior and caudal pull on the central nervous system. This can also cause some central facial hypoplasia and just differences in development in the airway and the face because of that pressure. We also see an increased incidence of obesity within this population. So children with neural tube defects are more likely to have sleep-related breathing disorders at a rate of 62 to 81% compared with five to 10% of their typically developing population. Then we see moderate to severe obstructive sleep apnea, 20 to 31%, which is worse in REM sleep. So this is quite significant with these kiddos. There are some central apneas also reported, but it's not very well studied. There are small case series and case reports, but this is really quite underreported in this population. The consequences are that untreated sleep-related breathing disorders are associated with extremely negative impacts on mood, attention, energy, quality of life, et cetera. And this is problematic on its own. We were talking about in some of these previous discussions, some of the quality of life issues that all of our patients face. And then you add all of these consequences of sleep-related breathing disorders, and that makes it very difficult. Children with spina bifida are already at a higher rate of ADHD and related disorders. So you add this on, and we know that that makes ADHD worse when you're not sleeping well. The very problematic issue is the risk of sudden death in teens and young adults, which has been pointed out in recent studies. Chronic sleep-related breathing disorders have been identified as a cause of death in 12.8 to 16.3% of the patients with myelomeningocele, independent of adjustments for sensory level, motor level, birth head circumference. And sudden unexplained death during sleep has also been described between birth and 19 months of age. So in addition to the quality of life things that we're all concerned about, obviously we're very concerned about morbidity and mortality. This is a study looking at the identified causes of death in patients with myelomeningocele in 86 spina bifida clinics. So it looked at a total number of deaths of 380. And you can see here sleep-related issues, respiratory failure, and unexplained death during sleep, 32.6%. This is, I feel, something that we really have a chance to address and help with. So Spina Bifida Association has really put out a call to say that all patients with neural tube defects, whether they're symptomatic or not, should undergo polysomnography evaluating for central apneas, hypoventilation, as well as obstructive sleep apneas. Thank goodness. We have wonderful pulmonologist, Dr. Jan Baker, to help us out with this. And she's going to take it over for a little bit here. Okay. So in the general population itself, AAP recommends that each child should be questioned regarding snoring and other signs and symptoms of OSA. There are multiple sleep habit questionnaires that are available. And here we actually use another, which is called the CASC, and also the sleep disordered breathing. So this is the CASC, which actually shows sleep quality. And there are multiple types of sleep questionnaires that can be used. We use this just because it had a score and we could score it down to a number. There is also the sleep disordered breathing subset of the OSA 18 questionnaire, which can be used, which we use here. I don't, I think we don't have it in here, but still, which is used to diagnose sleep disordered breathing. The important part, the most important part to remember is that despite multiple efforts to do so, we have not come up with a good clinical questionnaire or any combination of questionnaire and examination that can identify sleep disordered breathing very clearly. So even now, the overnight polysomnogram remains the gold standard. Nocturnal pulse oximetry has been tried. So you can see that it has a good negative predictive value, which means if you have a normal pulse ox in the night, it's reassuring, but an abnormal test may not be truly abnormal because the patient moves and we get a lot of false information there. Again, the negative predictive value is for moderate to severe and not for mild, because we see a lot of kids who have sleep apnea, but do not have these significant desaturation. So eventually a sleep study is the way to go. So what does a sleep study include? So the first four things are to identify sleep disordered breathing. So we have airflow channels, which could be at least three, four types of airflow channels, which include pressure, thermistors, et cetera. There's a chest and abdominal wall channel, which I'll come to later when I show a sleep study. This helps to differentiate between a central event as against an obstructive event. Also, we look at oxygen saturation and carbon dioxide levels. In addition to the breathing, there are many other channels which can give us some extra information. So we have limb leads and we've been seeing a lot of periodic limb movements and restless sleep as well as restless legs. There's of course a video monitor and sound. There's the EEG to score sleep stages as well as wake, but also helps us in showing some abnormal seizure like patterns of epileptic form discharge at that time. And we also look at the EKG. So at times we can pick some abnormal rhythms as an added advantage. Yeah, so I wanted to discuss some barriers to polysomnogram that are specific to our population. So socioeconomic status does play a role. Families have to take time off work, get childcare, gas money. We are centrally located in the state, but it can be a three-hour drive from the various corners of the state depending on the geography. The cost of the study may or may not be covered by insurance or they may be self-pay and it's not an inexpensive study. There are also disability-related concerns. So there's a lot of time that has to occur while patients are getting hooked up and they have to make sure that they're attentive to pressure-related concerns. Fortunately, I have wonderful partners in the sleep lab that are now have specific neurologic protocols to take this into effect. Then transfer logistics if a patient is paraplegic or quadriplegic, taking that into account. We also have patients with various comorbidities like autism, seizures, VP shunt, and neurogenic bowel and bladder. And again, we have good partnership and have worked together to make sure that we take that into account. I will say that has made it in some ways much better for us here in Little Rock. There are multiple sleep labs around the state that service children, but they don't have a specific pediatric sleep certification and they don't have the same kind of expertise that Dr. Jambaker has developed here. My big concern that I have is the lack of understanding of the seriousness of the condition. When I have kids that have had multiple brain surgeries, sleep apnea does not seem like a big deal. And it seems like one more medical procedure that their child, that I'm asking them to go through, if I'm asking them to do bone densities and lab visits and all these other therapies, it seems burdensome. And having just had clinic today, I've had this discussion several times today already with patients who are like, you know, there's not that big, it's not that big of a deal, it's not a problem. And I, you know, have to really impress upon them that just because their child is not having symptoms, that is not a guarantee that they are safe from having sleep related breathing disorders. And of course, you know, like any other procedure, we have barriers in the hospital. And currently after COVID, it's even worse, the staffing because of lab, you know, lack of sleep lab techs or staff to read studies. Also, of course, in this ever ongoing funding issues for the equipment space, as well as analysis. So okay, you get a PSG, so then what do you expect? So we have a wide spectrum of abnormal or disordered respiration during sleep, and the two major types are obstructive. So when we say obstructive, it's upper airway obstruction. And this obstruction can cause either complete stopping of breathing. So that's an apnea, or partial reduction of breathing. So that's a hypopnea. Similarly, it could be central. And when we mean central, that means the patient just doesn't have the drive to breathe. So that actually pauses breathing, there is no breathing whatsoever. So in the general population, sleep apnea is around 1-5% in children, 11% in adults. In the adult population, around 30% of adults. Of course, we know it's more common in men, it's more common in obese. For postmenopausal women and men is equal. What is the spectrum? As we said, there can be either complete or repeated airway collapse with lapses in breathing. And we can actually score events as an apnea, as hypopneas. As against that, upper airway resistance syndrome is a milder form where you can't really score events, but there is sleep disruption, but snoring. And then we have obesity hypoventilation syndrome, which is a different condition by itself. So we don't really see obstruction, but we see hypoventilation as an increased CO2 levels with or without low oxygen. So what is the cause of sleep apnea? Usually narrowing of the upper airway. So it could be anywhere from the nose, nasopharynx, oropharynx, supranarcolic. It could be a normal sized airway, but increased collapsibility of that airway, or then there could be abnormal neural control. So I really like this diagram where, you know, when you're ready to breathe, when your CO2 is high or your oxygen is low, your central chemoreceptors get stimulated and your major muscle of breathing is your diaphragm. So it stimulates the diaphragm and the other respiratory muscles. So when the diaphragm is going down, what it does is the thorax is also going out. So there's a negative infrathoracic pressure, which in turn, you know, holds your trachea, any airway below your thoracic net opening because there is a surrounding negative pressure. But what happens to the airway above? There is this tremendous negative pressure pulling from down, but not, I mean, of course there is something, but there's very little to keep, there is no bony structure to keep this upper airway open. So the tendency is to collapse. So during inspiration, the tendency of the upper airways is to collapse. And that's why we see stridor in, you know, in inhalation, but this doesn't happen in most of us, right? With each breath, we don't collapse on upper airway because it's a beautiful mechanism where when the central chemoreceptors are stimulated, just before they send that impulse to the diaphragm, they send an impulse to the pharyngeal dilator muscles. And these dilator muscles actually open that airway just in advance. So it's not a surprise that sometimes this fails and you can have upper airway collapsibility. So in our population, this is the phenomenon that doesn't happen very well. And what has been actually documented in experiments is that there is subtle differences in the ventilatory responses to repeated hypercapsular challenges. So this is the group of patients who is taught to have abnormal neural regulation as a cause for the sleep apnea. And we have our kids in this group. And then obesity or sleep apnea is an ever-developing and ever-worsening situation. Obese kids are usually more likely to have OSA for each increase of one kg per meter square of BMI about the mean risk of OSA increases by 12%. We know our group of patients are more likely to be obese. So this adds to their, you know, risk of OSA. Again, just because somebody's obese doesn't mean they'll have OSA. And the OSA doesn't go hand in hand with the degree of obesity, but they're more likely. How does it present? Snoring, mouth breathing, choking, increased work of breathing, frequent awakening, restless sleep, sleeping in weird positions, nocturnal aneurysis. We say in general populations, the question asked, and we are working on taking this out of this population. And then, you know, headaches, vomiting, difficulty arousing. Again, all of these may not show up. And, you know, Laura has seen that in our patients, it's usually mouth breathing that might actually, or actually witness pauses is something which might correlate with sleep apnea. Again, you know, there are no clinical features that can predict abnormality. So this is a polysomnogram. As you can see, there are multiple things we see here. There's an EEG. There's the chin EMG to look at hypotonia during REM. There's a snoring channel. We have the EKG, entitled CO2 flow, pressure transducer, chest, abdominal leads, and oxygen saturation. So you see this beautiful, lovely, you know, coordinated breathing with good flow. As against that, we see this patient where you will see that this is the flow and suddenly it stops. So this is an apnea. And the patient arouses. He even following this apnea, the oxygen saturation drops. And then once the patient arouses, you see some breathing again. And again, as you can see, both the chest and abdominal wall are moving, but in paradox, this is because the upper area is obstructed. So this is an apnea, which is obstructive in nature. As against this, this is a central apnea. That means there is no airflow, but you can see the patient has actually stopped breathing. So there is no chest wall movement, no abdominal movement, no flow. This is a central apnea. As you can see, this is followed by oxygen desaturation. We are not seeing any arousals. So these are how they are scored. This is a hypopnea again, because as you can see airflow, and then it slows down and you have an arousal. And you can see that the chest wall, abdominal wall are still moving and in paradox. So this is an obstructive hypopnea. Here you're not necessarily seeing a desaturation following it. And then this again, as you can see, the flow is dropping. So it's a hypopnea. It's followed by a desaturation. So we score it. And the chest and abdomen going in sync, but lesser than before. So this is a central hypopnea. And this is something you will see either in central nervous system lesions, or you'll see in significant neuromuscular conditions because the patient is unable to develop that much of force to breathe. So we see such central breathing in all of our patients. How do you manage sleep apnea? You can start off with medical treatment for mild sleep apnea. You can use steroids, something like singular or antihistaminics. There are other options in kids. We can use tongue retaining devices, mandibular advancement devices, repositioning devices. However, there is very little experience in children and insurance is really not paying very well for these. So even in neurotypical kids or without kids with other problems, we are not very successful in initiating it in the hospital. Then we go for surgery. So if they have enlarged tonsils, adenoids, then that's the first line. Of course, complications are more common in our kids with neuromuscular disease, hypotonia, morbid obesity, or very severe sleep apnea. There are other surgeries like uvulopalatopharyngoplasty, nasal surgeries, tongue reduction surgeries, and maxillary mandibular advancement surgeries. Multiple, again, depending on what is the primary cause. As Laura said, there could be facial hypoplasia in these kids and that could be contributing. Can we do something about it? Maybe not, but now it's possible to look for these reasons. And after all of this, a significant percentage still continue to have sleep apnea and our kids are a major portion of this. And these kids then go for positive airway pressure. So it can be either CPAP when we give the same pressure throughout inspiration, expiration, there's bilevel PAP, maybe with higher pressures during inspiration, lower pressures during expiration. The main problem with PAP used just as an adult not having them use the CPAP or the bilevel PAP because it will work only if it is used. So if none of this work, then the final resort is tracheostomy, which we had used very occasionally for some children, depending on how bad the sleep apnea is and how bad their adverse effects are. And our group, going back to what sorts of sleep-related bleeding disorders. So why do we think we have them? Because of the brainstem controls, because maybe their central respiratory pattern or upper airway musculature or arousal mechanisms, all of this could be affected because of the central issues that we have. And in most of these kids, they'll have poor response to PNA. Having said that doesn't mean they will not have it. If large tonsils, adenoids are the culprit, it will help. And because it's one single treatment, which might, you know, cure. Usually if we see enlarged adenoids or tonsils, we go in for surgery first. Also, kids will have restrictive pulmonary disease because of the typhoid scoliosis, especially in the non-ambulatory kids or those with thoracic, thoracolumbar lesions. So because of this, their breathing itself is restrictive, which leads to worsening of the hypoxia in these kids. What are the risk factors for sleep-related breathing disorder in our population? Usually those with higher spinal cord lesions, those who have brainstem dysfunction because of reduced subarachnoid space, when they have very abnormal Chiari-Tumal formations, if they have coexisting pulmonary function abnormalities like obstructive lung disease or restrictive lung disease, or they have other reasons for disorders of upper airway maintenance, and of course, those who are obese. So in terms of management, we know that neurosurgical intervention is a very, you know, contradictory, controversial thing here, but we have tried it in an occasional patient with maybe some positive response. It usually has, you know, indeterminate effect on the sleep hygiene and the sleep related, but it may be effective. Usually does not resolve the apneic symptoms and they'll have persistent central apneas, periodic breathing, hypometalation, breath holding spills, and cyanosis. So again, it may be not as effective more so in younger infants, but it can be tried if nothing else helps. How do we manage for sleep, obstructive sleep apnea, tonsillo-adenoidectomy, nasal CPAP, usually successful. For central apneas, you may try stimulants like methylxanthine, we may get away with just supplemental oxygen, but if there is carbon dioxide retention, then we have to go ahead and do non-invasive positive pressure ventilation. Again, if there is central hypometalation, you may need either non-invasive or invasive, that is via tracheostomy, positive pressure. You may try supplemental oxygen, but once the CO2s are high, the oxygen is not going to help. Sleep, exacerbated restrictive lung disease, you can try supplemental oxygen, but sometimes they may require again, ventilation, as we know, nutritional orthopedic procedures are helpful. We've had kids where the scoliosis management has really helped their breathing. And then as we said, the posterior fossa decompression, but there's not really enough data there. So I'm going to say teamwork makes the dream work. We have many, many specialties involved in just the specific aspect of our patient's care, pulmonology, neurosurgery, rehab, orthopedics, ET, neurology. We've discovered a couple of nighttime seizures that have caused some hypopneas and apneas, our dieticians, respiratory therapists, incorporating the PCP into the team. Also, you work with psychology and social work quite a bit to help improve tolerance to our interventions. Okay. I'm going to stop sharing theoretically. Okay. Thank you. I switched my phone. So hopefully the microphone is a little better. I apologize. We have about five minutes for questions. I know Amy had some comments in the chat about having a more standardized or validated questionnaire to help identify individuals who may be at more risk for this and resources are fierce. Right. That is something that we're working on. So that, see, stay tuned. Yeah, we're trying to work on a question. So our clinic uses one, which is not the standardized, you know, validated questionnaire, because it's huge. So we're trying to get something which is more usable and standardized. See if I can pull up any other questions in the chat. Yes. So yes, it does take forever to get a sleep study in the hospital. In our case, it's around three to four months. And Laura knows that there is something she thinks is very important. We usually put them on the short call list. So we have something like a screening mechanism. There's a big no-show rate. There's a big cancellation rate. There's a big, you know, reschedule rate. So we have what we call a short call list. So whenever any provider calls us or sends us a message, we'll always put them on that list and bring them up. Yes. Home sleep study. Very interesting. So we've looked at that. So the home sleep study, I experimented with my own children, but I got approval, so it's fine. But it did not work well. Even with a fairly attentive and obsessive mother, those leads come off. And we did not, even with a couple of different attempts, get a valid study with one of the better products out there. So one of the things that, you know, we've talked about is just a straight pulse ox. And there are a couple of commercially available products. Supriya does not know about this because I found one yesterday and haven't talked to her about it. But there are a couple of things that I'd love to try that are some disposable home oxygen ones, or I'm sorry, home pulse ox ones. And again, I'm going off of that negative predictive value, and that might be a way to screen. But as Supriya has already shown, even if somebody doesn't drop their pulse ox, they still can be having some problems. It's not going to tell us that they're having seizures, et cetera. And it may not be life-threatening sleep apnea, but it will certainly be sleep apnea that's disrupting their sleep by causing, you know, behavioral issues or mood issues or attention issues. So yes, we see something like severe desaturations, but we may not see arousal. We may not, we do not see arousal. And so, but we do have, you know, Laura has mobilized through a grant for home sleep study equipment. So we will continue working on it. Maybe we need more experience and maybe everybody does. So we'll see. If Laura couldn't keep the leaves, I very much doubt it. My daughter does have a lot of hair, so. Hey, we have a couple of minutes. Any more questions? Oh, check the chat and see if there's anything else. Yes, big bummer. But I do, I agree that the home sleep study and in pediatrics relative to adult, adult sleep, home sleep studies are much, much more reliable than pediatric ones. And that was one of the barriers I had to get getting the grant in the first place. And so, well, we don't know if we don't look. Most of the studies that have been done, they're sort of on the borderline saying, yes, you know, you miss a lot of stuff and you get a lot of unreliable information. A lot of And then you have to come in and do the study anyway. Yeah. It's hard to read. It's hard to interpret most of the times. It's hard to read. It's hard to interpret most of the times. Okay. Well, thank you both. Very interesting topic and one that we definitely need more research in. It looks like we have one more question here. At what age do you first get the sleep study? That's an excellent question. There's not really great guidance out there. So, I really start harping on it once my kids start getting to pre-adolescence because I tell them, look, you need a sleep study before you graduate from my program. It says so in the guidelines. And so that's what we're going to do. But if I see something that is very obvious to me that there's something going on, for instance, I had a witnessed apnea in my clinic and parents were completely oblivious. And Cypria, I think, got them a sleep study that night. And they were a very younger child. There are some that will have witnessed apneas or concerns in the NICU. We have done a couple of those. So those are less frequent, but we absolutely do those. And also if they're having symptoms, again, that to me suggests that we need to look. So if they're having clinically significant ADHD or disruptive sleep, then we'll prioritize those at a younger age. Ideally, you should be getting them in the first year of life. So you have to actually look for these issues. It's extremely hard to get them at that time, but they're easily available to get. So when they're in the NICU, there's anything that is suspicious, then we get them earlier. We administer them there or we try to administer them those questionnaires. So if there's any red flag there, then they get a sleep study as soon as possible. Okay. Well, on that note, we are right on time for our break. So we have a 10 minute break scheduled right now. So depending on your time zone, that'll either be 8.50, 7.50, 6.50 or 5.50, but something on the 50. So we'll see you guys back in about 10 minutes. So, I think it's that time. Hopefully everybody's back, and I would like to introduce our next speaker. Thank you. Dr. Kokorelus is an assistant professor at Johns Hopkins Department of PM&R. She completed residency at Johns Hopkins and her fellowship at Johns Hopkins and Kenny Krieger. During her residency, she served as a chief resident and won the Johns Hopkins Healer Award twice, as well as the Frank L. Kallsen Jr. Resident Award for Clinical Excellence. If you could tell us a little more about that. Dr. Kokorelus developed and is currently directing the Pediatric POTS Clinic at KKI, Kenny Krieger. Her research interests are in POTS, orthostatic intolerance, and post-viral syndrome, and her talk is a pediatric physiatrist's approach to managing postural orthostatic tachycardia syndrome. So, I'm going to pass the torch. Please take it away. Thank you. Thank you. So, let's get started. I have no financial disclosures or conflicts of interest, and I will be discussing off-label use of medication specifically for POTS, since there are no FDA-approved medication for POTS. So, just to start with some basics, what is postural orthostatic tachycardia syndrome? It's a hard name to say. So, from now on, we'll just use POTS. So, one way to look at it is it is a condition that affects 1 to 3 million Americans. That's one in every 100 teenagers. Just think about that for a second. That's a lot of patients with POTS. About 90% of them are females with a median age of onset of 14 years. So, my clinic is predominantly teenage girls. The more technical definition of POTS would be a sustained increase in heart rate of 40 or more beats from supine to standing, and that's within the first 10 minutes of standing, accompanied by orthostatic symptoms, and in the absence of orthostatic hypotension. POTS is considered a disorder of the autonomic nervous system, and thus a form of dysautonomia. When I describe to my patients what POTS is, I usually tell them it's a circulation disorder where we get a lot of blood pulled down in our lower extremities and reduce blood flow back to the brain, which is what causes a lot of symptoms. And so, in response, the body releases a lot of adrenaline, and that speeds up the heart rate. And I think, since we're a physiatrist here, I think it's important to note that POTS is a chronic illness in which 25% of the patients are so disabled, they cannot work or attend school. So, clearly lots of functional limitations in these patients, and really why it became a really natural fit for me to manage as a pediatric physiatrist. So, who typically manages pediatric POTS patients? I would say mostly pediatric cardiologists, pediatric neurologists, and primary care doctors. The bottom line is, the number of POTS patients far exceeds the number of POTS providers out there. There's no question about it. If you are willing to provide care for these patients, the patients are there. So, what are the symptoms of POTS? I usually think of it as two different categories. So, the first column would be symptoms due to cerebral hypoperfusion, right, because there's all this venous pulling in the lower extremities and not quite enough blood flow getting back to the brain. Patients have lightheadedness, syncope, headaches, fatigue, blurry vision, etc. Then there's a whole other category of symptoms, which is due to this adrenaline response. So, release of epinephrine, norepinephrine, it's the body's way of trying to get the blood vessels constricting, the heart rate increases, but the symptoms would be shortness of breath, palpitations, diaphoresis, looks a lot like anxiety. And at the same time, many of my patients have anxiety. And so, when we thought about creating this clinic, and we had the ability to make it multi-D, one thought was, who could join me? And the natural kind of response was behavior psychology would be a nice fit for managing these patients. Another thing is, I typically don't see a POTS patient who just has isolated POTS. There is a, absolutely there is a disease cluster, and I have in the middle here, orthostatic intolerance, but around it, so migraines, Ehlers-Danlos syndrome, juvenile rheumatoid arthritis, chronic fatigue syndrome, anxiety and depression, GI symptoms, food allergies. And this isn't even an exhaustive list, but most of the patients I see have lots and lots of these comorbidities. It's a lot to manage as a provider, but also as a patient. So the clinic model that we set up, so all new patients first start with nursing, and my nurse performs a 17-minute orthostatic standing test. I'll show that in the next slide. And then I come in, and I have about an hour to an hour and a half to spend with the patient, and then following me enters my behavior psychologist. And when that develops, it's usually just managed by me. So what is the role of my nurse? So my nurse performs this standing test. Some people call it a poor man's tilt table test. It's very time intensive, so it takes 17 minutes to perform the test. So I'm lying down for five minutes, and my nurse will measure heart rate and blood pressure for every minute and is asking about symptoms, and then the patient stands for 10 minutes. And that's really required since the definition of POTS would be the heart rate has to increase and be sustained for a duration of 10 minutes. So obviously throughout the 10 minutes, again, my nurse is documenting heart rate, blood pressure, and symptoms, and then at the end of the test, the patient returns to a supine position. So lots of advantages to doing a standing test in the clinic. So first of all, you get real time data. So I interpret the test right away and talk to the patient about the results. And then there's also a really nice benefit of being able to see the patient. So most of my patients with POTS really don't like standing, provokes a lot of their symptoms, their orthostatic symptoms. And so I would say typically by minute eight or nine, they're feeling pretty bad. And then when it's time for them to lie down, they're really relieved. When there's a patient who is doing totally fine, like standing up for 10 minutes is a breeze, no issues, they probably don't have POTS or any orthostatic condition if it's that easy. And that would be in spite of what the heart rate shows, because at the end of the day, we don't just treat numbers, we treat symptoms that correspond with numbers, but the symptoms have to be present to really get this diagnosis of POTS itself. So what am I expecting to see on the standing test? So this would be a very typical POTS response. So essentially the patient's lying supine and then here at minute zero, the patient stands up and you can see pretty dramatic increase in heart rate, which is more or less sustained for the 10 minutes. And as you can see, really very minor fluctuations in blood pressure. And then at minute 10, the patient returns to a supine position and the heart rate drops dramatically and returns to baseline. On the other side here, I added a diagram of what I would expect to see in someone with vasovagal syncope. So I am a POTS clinic, but I get a lot of patients who have vasovagal syncope or orthostatic hypotension because lots of overlapping symptoms. And the nice thing about the standing test is I can often differentiate these different conditions depending on what the vitals show. So for vasovagal syncope, as you can see here at minute zero, the patient stands up, there's a little bit of an increase in heart rate, nothing too dramatic, but then here at minute six, this would be syncope. So really precipitous drop in heart rate and blood pressure. And then everything kind of normalizes as the patient lies supine again. So again, I ultimately end up seeing and diagnosing POTS and orthostatic hypotension and vasovagal syncope. I think the main distinction between vasovagal syncope and orthostatic hypotension would be for orthostatic hypotension, the blood pressure drops immediately or within the first three minutes of standing. Vasovagal, the blood pressure drop is going to be after three minutes of standing. So then what is my role in managing these patients? So I come in after the standing test. Of course, I do a history exam. I go over my interpretation of the standing test with the patient, and I'll tell them, I think you have POTS because of this, or I don't think you have POTS because of this. And if I think they have POTS, then we go into how do we treat this? And first line treatment for POTS is non-pharmacologic management. And another reason why such a good fit for a physiatrist is physical activity is key to managing POTS. So with exercise, we obviously, we build up muscle, you know, the heart rate over time will slowly come down, but also exercise results in increasing blood volume. So really good for circulation. Patients absolutely, absolutely feel better with increasing physical activity. I find the big struggle for my patients is they have so many symptoms and are so debilitated that sometimes telling them to exercise is impossible. So luckily I have some very good PTs I work with, and really the focus on someone with POTS would be actually starting them with recumbent activity. So really common examples would be a stationary bike, a rowing machine, sometimes aquatic therapy too. Patients with POTS like this position. Being upright and vertical triggers so many symptoms, so they tend to really like being horizontal. And so we take advantage of their preferred position to slowly build up their endurance and their activity tolerance. So other things that I recommend for first-line management, lots of fluids and lots of salts. So fluid goal is about three liters a day. This is a lot of fluid for like a teenage girl. And I'm not picky. I say any fluid you want, as long as it's not caffeinated and not alcoholic, I don't really care. It counts. And then salt. So salt is for fluid retention. So it helps these kids stay really hydrated. And we will go over how to get four to six grams of salt per day. Another way to look at that number is about two teaspoons of salt per day. And usually it's a combination of salty snacks, salt tablets, electrolytes, adding salt to your foods. Compression garments actually reduce venous pulling. So really good for POTS patients. So they get less blood pulling in the area that's covered by the compression. So sometimes we start with compression socks. Sometimes it's a hard sell to a teenage girl to actually wear these. So I find I get more compliance, especially in the wintertime, talking to them about compression leggings. And in the summers, we'll do something like biker shorts. These are actually Spanx, which are shapewear, but certainly provide lots of compression. And I get a lot more compliance with these type of compression garments. Avoiding triggers is another really important topic we go over. So prolonged standing. So kind of standing still is the time when you're going to have the most blood pulling in your lower extremities. And when patients are most symptomatic, they actually typically feel a bit better when they start to move and walk around. Because again, you're activating your muscles, which are pumps, and you're getting that blood circulating. Heat. So POTS patients typically struggle in the summers, often really struggle with hot showers. We know that heat is a vasodilator. So again, it's just allowing a lot more blood to pull in the distal extremities. Diuretics. Dehydrates. So, you know, sometimes it's a challenge telling, you know, high school, college age students, no caffeine and no alcohol. But honestly, a lot of them will come to me and say, I can't drink coffee or I can't drink alcohol because it makes me feel so terrible. And I'm like, well, yeah, it's it's dehydrating you and really negating all that hard work that you've been doing to get that water and salt in. And then there's prolonged bed rest, which is, I think, the hardest to manage. So unfortunately, a lot of patients because of POTS end up spending many, many hours a day in bed, really because it does result in improvement in symptoms. They feel much better lying down compared to being upright. The big problem is prolonged bed rest, meaning spending several hours a day lying down actually makes POTS much worse. So the thought is with bed rest, we lose muscle mass over time, that heart rate is going to just creep up and it actually reduces blood volume because we're not really moving. So we're not getting any blood circulating in the body. So absolutely, it makes POTS worse. So it's a very common trap that I see in patients. So I really try to encourage them to only use that horizontal position for sleep and for times when they feel like they absolutely need it. So if they're super dizzy, super lightheaded, just feel terrible, I'll say, you know what, you can lie down, give yourself that reprieve. But really, after 30 minutes, can we get you back to an upright position again? The thought is, if you don't use it, you will lose it. So we really want their body being used to that upright position. There are also different positions, physical counter maneuvers, that probably make POTS patients feel much better. I always look at how a patient is sitting when I walk into the exam room, and I would say very few of my POTS patients sit with their legs dangling down. Definitely, they prefer sitting legs crossed, legs up to chest. A surprising number of patients drive with one leg up because they get less venous pulling when their legs are up rather than dangling down. So oftentimes, they even adopt these positions without realizing it, but they've learned over time that they feel better in these positions. And then my primary goal, which is I know a goal for many of us, is to keep the patient in school. I find that when a patient goes to home and hospital because of their debilitating POTS symptoms, basically, number one, they're at home and everyone is more sedentary at home than they would be at school. And from that perspective, I think their POTS gets worse. But then of course, mental health declines because they're isolated from their friends and they're stuck at home and miserable. So I think I'm very generous in giving school accommodations. Part of the initial visit is sometimes formulating a letter to help make a 504 plan because I really think it's so important to keep them in school. Even if it's not, you know, whatever they need to make it work, I am very happy to provide them with it. Here's just a list of some of the common accommodations that I would give to a POTS patient. So step two would be medication management and this isn't always necessary. So sometimes, and ideally, we would just manage POTS patients with fluid, salt, compression, physical activity. However, practically speaking, sometimes that's not enough. So sometimes patient will come back to me and they'll say, I'm doing all the right things, but I still, I can't make it through the school day or I can't even do like any upright activity in PT despite trying for several months. Is there anything else you can offer me? So there is, we definitely use medications for POTS, none of them being FDA approved, but certainly some of them very effective. So I've listed here the three main categories of medicines that we use to manage POTS. I think it's interesting. So I think a lot of the medications here as physiatrists we're actually very familiar with using something like midodrine, for example, we use for spinal cord injury a lot, maybe not something that most of us are familiar using for POTS. So, but midodrine, probably the number one medicine I prescribe. So it can be very effective by, you know, increasing vasoconstriction and increasing that blood flow to the brain. I also prescribe stimulants and SSRIs again for their vasoconstricting properties. Another category would be volume expanders. So Florinef or flugelcortisone, really good for water and salt retention. OCPs actually, I will prescribe. And the thought is if we can like decrease the frequency and the severity of their period, actually they'll lose less blood volume. So they actually stay more hydrated. And that's something that has been really helpful, especially for patients that feel like their symptoms fluctuate based on where they are in their menstrual cycle. And then probably my favorite would be beta blockers. And again, we're all very familiar with beta blockers. I find they can be extremely helpful for my patients. Yes, it does obviously lower their tachycardia. It can help with anxiety, which many of my patients have. It can also be used for migraine, prophylaxis, which again, many of my patients have. So certainly several potential benefits from beta blockers. So after my hour or so, then my behavior psychologist comes in. And the role of behavior psychology for the initial assessment, sometimes they will establish long-term care, but really in that initial appointment, it's really to go over how to cope with having a chronic medical condition and give the patient insight into, yes, having chronic medical symptoms tend to affect mental health. Also validation is huge for this patient population. So the average POTS patient has had symptoms for four years before getting a diagnosis. So the patients I see typically have been to multiple specialists, gone through lots of diagnostic testing, everything comes back normal, and then they feel like they've been dismissed. And I can't tell you how many patients I tell them, I think you have POTS, like look at the standing test. You have the constellation of symptoms consistent with POTS. Some of them will just cry because they're just so relieved that they have an answer or they feel like someone's finally listened to them. And again, it is hard with POTS for several reasons. One being most people don't know what POTS is still. And number two, it is an invisible disease. So it's not like these patients just looking from that, looking at them from the outside, not clearly sick. And again, people find that very invalidating. Are people questioning me? Are people doubting me? Do people think I'm faking this? And then another goal of behavior psychology would be just to reinforce that mind-body connection. So very common for patients to feel like when they're stressed. So exam week, I often hear patients saying that their POTS symptoms flared up. So we just really like to give them insight into that connection. So what is the prognosis? So POTS does not increase the risk of mortality. It is a chronic condition. Many patients have flares or recurrences. I tell patients after I diagnose them, this is not going away in days or weeks. Typical trajectory is, and hopefully improvement over months, sometimes years. And that would be the most common trajectory that I see. So the statistics show that five years after a diagnosis of POTS, 66% of patients report improvement in symptoms and an additional 20% report complete resolution in symptoms. So that means 86% of the patients that I'm seeing get better, which is so great. I love it. I find it very rewarding. And one of the reasons why I started this clinic, there are kind of 3% who get worse. And those are the patients that, we don't always have an answer. I tend to find that sometimes in those patients, their mental health is really a barrier to them making progress. So overall management of POTS can take a lot of time. Often we have to try several different medicines. It's not always Midodrine or Betoblocker, unfortunately. And I'm very upfront with the patient. When I start a medicine, I tell them, this will not cure POTS. It will not even eliminate your symptoms. The goal is reduce symptoms so that you can stay in school and hopefully do PT and increase your physical activity over time. That's really the long-term plan and the long-term goal here. Like many rehab diagnoses, management of POTS is absolutely part of a comprehensive program of care. So I'm very fortunate in that I have lots of wonderful colleagues, particularly from physical therapy, nutrition, GI, neurology, and psychiatry, who I refer to very often for patients. And recently, I would say past two years, I've had an influx of patients. And some of that absolutely is from just post-COVID POTS. It's a thing for sure. So Wall Street Journal talked about COVID long haulers being diagnosed with POTS, being treated like any other POTS patient. I was very fortunate to be able to contribute to the recent publication in the PM&R Journal about the multidisciplinary collaborative consensus about assessing and treating the post-COVID kids. And my part really focused on patients post-COVID presenting with orthostatic symptoms, POTS symptoms, how we diagnose that, and really how we manage that. And if anyone is interested in seeing POTS patients, please contact me, but also know that this is a field very rich in possibilities. So, you know, we really, we need providers. There's a lot of nice research opportunities. So I was able to publish the first pediatric case report documenting COVID, documenting POTS after COVID-19 infection. And we had, we recently had another publication talking about, again, these COVID long haulers presenting with orthostatic intolerance. So for me, even before COVID, most of my patients or at least half of them were coming to me after a virus. Right, so obviously it wasn't COVID. It was strep, mono, GI bug. They would have a virus and they would feel like months, years later, they never fully recovered. And, you know, so we knew that there was that post-viral connection already. And now we're just really seeing it again with COVID and just with the prevalence of COVID, huge influx in patients getting POTS. But I think also there's been some increase in recognition of POTS as well. So quickly, just to end. So yet another reason why I think POTS is a really good fit to be managed by a physiatrist is I am fortunate that I work in a place where I have access to a day rehab program and an inpatient rehab program. So over the past year, I sent 12 of my POTS patients to our day rehab program and 14 to the inpatient rehab program. And you can see a lot of them, especially for the inpatient program, had other co-diagnosis, so chronic pain or FND, which really caused them to be debilitated enough to warrant inpatient admission. So real quickly, so case number one. So I saw a 16-year-old, previously healthy male. He had confirmed case of COVID in January of 2021. COVID very mild, 24 hours of cold-like symptoms. This was a really active, high-achieving kid. He was on the basketball and track team at school. So he wasn't really getting better and he was having some lingering symptoms. So he was evaluated by our post-COVID clinic for his ongoing symptoms. Our post-COVID clinic does a standing test on every single patient 10 and above looking for POTS. And they found that his heart rate increased 64 beats from supine to standing, and he was diagnosed with POTS. And he was referred to me for further management. So when I saw him, this kid was really debilitated, headache, brain fog, dizziness. He was really spending half of the day in bed. He was on home and hospital. And this was a kid, super motivated, wanted to go to school, but he just felt so crummy every time he was upright. So what did I do for him? So I tried several medicines. I started with fludrocortisone, didn't help. He still couldn't get, he really couldn't do any upright activity. So I played around with a couple of things. I finally found a combination that was a little bit beneficial to him. So he did well with midodrine, with the Vabradine, and that at least allowed him to start aquatic therapy. And in aquatic therapy, he was pretty much horizontal the entire time. So that following fall, we got him back to school with the 504 plan. And then a year after his diagnosis, so this was January of 2022, he follows up with me and overall, he's 50% back to his baseline. It's good, but also not that good. I think a lot of people are surprised like, hey, this is a really motivated kid. He's doing all the right things. He's doing water, he's doing salt. He's still in aquatic therapy two times a week. He wants to get better and he's only 50% better a year later. We could not get him to sports. And because still even land-based therapy was so challenging for him, we felt like he would be a really good candidate for our day rehab program. So he completed a three-week day rehab program at Kennedy Krieger. And I just documented some statistics showing his improvement. So his time up and downstairs decreased from eight seconds to 5.62 seconds. His six minute walk test went from 1400 feet to 2000 feet. So definite gains. And I think more practically speaking, his ability to walk outside increased from a third of a mile to over a mile without needing breaks. And he was only gonna use a wheelchair for college tours. And this is the last case. So 16-year-old female with POTS, her symptoms started roughly two years ago after a concussion. She already had been diagnosed with POTS by a cardiologist, was on Florinef and Medidrine when she came to me. She was in school, but missed 15 days in the first half of the year. She was needing a wheelchair on bad days and visiting the nurse daily. So I tried my best. I played around with medicines. I got her into outpatient therapy, gave her extra school accommodations, didn't really work. So she was actually starting to rely more and more on the wheelchair, both at school and in the community. So at that point, I felt like she would be a perfect candidate for our inpatient program. So she completed a four week inpatient rehab program. And again, I listed some of the data showing her improvement and her scores. So her six minute walk test went from 1,000 feet to 1,200 feet. And she was able to go back to school and she was only using her wheelchair when out in the community. So huge improvements. I think that's it. So thank you. Thank you, Anne. Great job. In the interest of time, we'll probably put all these questions to the end and move on to the next speaker, if that works. Excellent job. Really interesting talk. And so on our final talk of the evening, we have two speakers here. And if we can kind of switch the slides over to you as I'm introducing our speakers, that would be great. So we have Dr. Abby Case, who's currently an attending physician at CHOP and a professor of PM&R at the Perlman School of Medicine at University of Pennsylvania. She's the Division of Rehabilitation's Quality and Patient Safety Champion and the Assistant Program Director for the Pediatric Rehabilitation Fellowship at CHOP. Her clinical interests include acute brain injury, post-COVID complications in pediatric patients and education. She's been working as a subject matter expert on the NIH-funded RECOVER study. And then with her, we have Dr. Sally Evans, the Chief of the Division of Rehabilitation at CHOP. She's a professor of clinical pediatrics and physical medicine and rehabilitation at the Perlman School of Medicine at University of Pennsylvania. And she's passionate about the care of children with disabilities and continues to work to improve the field of pediatric rehabilitation medicine. So it is our pleasure to introduce these speakers and have them take it from here. Are we working on getting the slides up and everything? There we go. Thank you so much. Thank you, everybody. Welcome to the last talk of the evening. As you said, I'm Sally Evans, and I feel lucky to be here with my colleague and partner, Abby Case, tonight to talk about functional outcomes in children after they've had COVID-19. Our objective tonight is to share what we see as the need for pediatric physiatrists to be front and center with the management of children who have post-acute sequelae of SARS-CoV-2 infection. Everybody was there with us when we were going through the pandemic, and so it isn't always great to go over the highlights, but I think if you remember back to the beginning, what we were really worried about was death and dying in the adult population, and since most of us fit into that population, we were perhaps a little bit concerned about ourselves, but it was horrible to watch what was happening around the country. It became clear very early on that many of these patients would need rehabilitation. These adults who are still sick, but most of that was focused on rehabilitation of the respiratory or pulmonary complications of the disease. Soon after that, however, it also became clear that there were lots of people who had long-term consequences, and that rehab was going to play a big part in the return of these adults to work or to their previous lives and to get them essentially back on their feet and back functioning the way that they were before. But there wasn't much attention to what was happening with children, and there was still really sparse incidence of any sorts of information about what was happening in children, and that continues to be true today, that there's more limited research around what's happened in children related to infection with SARS-CoV-2 compared to adults. The other thing I want to point out on this slide, though, that, again, makes this something that we should all be paying attention to is that the American Academy of Neurology now says that complications from COVID-19 make the third most common neurologic disorder in adults in this country. And just a slide showing lots and lots of different articles that have come out since the beginning of the pandemic. There are a lot. They all essentially point to the same thing, but many of them have small sample sizes and are not able in and of themselves to show the kind of evidence that we want to make decisions about how we treat our patients. The Cochran Group of Rehabilitation took a different approach to analyzing the literature as it was becoming available and developed an evidence-based decision from rapid living systematic review. And essentially what they do is look at all the articles as they come out, see what's relevant and what's similar about different articles as they show up in the literature, and then make recommendations or show similarities and trends that are coming out through these articles. Of note of the first essentially 500 articles that they reviewed that they felt were worthy of them paying attention to, there was only one that dealt with children. It came out of Denmark and showed that of the patients who were involved in this study, approximately half of them had long-term consequences that of at least two symptoms. The symptoms that are showing up for adults and for children but have been identified by the AAPMNR, we've heard about some of these over the course of the night and certainly have all been paying attention as the recommendations come out. But basically what we're seeing are, again, what everyone knows, cardiovascular complications, problems with breathing, cognitive symptoms, and fatigue. What about the data around children? Well, a lot of people these days are interested in big data, and certainly this is a data set that is big. This is from the N3C data enclave that includes data from 49 out of the 50 states in the United States and from 75 hospitals. There are nearly 20 billion rows of data in this data set. So again, if you're interested in big, this is a good place to go. Analyzing the data about children shows that from the children who had acute infections, that it's a very small percentage of children who have severe infections. But if you take a small percentage of 225 million, that still comes out to well over 100,000 and more than 150,000 patients who are involved. But this is still, again, just looking at the acute infection. So what are we going to do and how are we going to learn about these patients and what's happening to them long-term? It talks about the fact that people weren't really paying that much attention to children, but even with that, there was an early article that looked just at college students and whether or not they had symptoms of prolonged symptoms and they really did. And this was an early study that showed the same symptoms, but again, at a time when perhaps people weren't ready to pay that much attention. So we thought we'd just check in with this group, see who's still awake here and do a little bit of a community check-in and a poll. And we'd like you to answer the question, are you seeing patients that have functional impairments or a change in functional status following acute SARS-CoV-2 infection? Yes or no? We'll give a couple minutes to answer that question. And then, do you work mostly in an inpatient or an outpatient setting? So from the first few people who answered, everybody can see that, right? Everyone can see the poll there. So it's a little more than half. Half of us are seeing people with functional deficits or changes in functional status. And then for the inpatient, outpatient question. Survey says about two-thirds of us, a little more than two-thirds were primarily in outpatient and about a third of us in inpatient. Good to know. Thank you everyone for participating. The other thing that I want to highlight in addition to what the AAPMNR is doing, there's also an NIH funded group working on what's called the Recover Study, which again has a lot of its resources devoted towards studying what's happening in adults who have been infected with SARS-CoV-2. But there is an arm of this study that's looking at what's happening to children. At least one of the goals of this group is to try to figure out how to analyze some of the data that we have and come up with information that can really help inform how we're going to treat these patients and what we should be looking for. Again, I said before that I felt lucky to be here with Abby tonight and presenting with her. She is the person on the Recover Study in the pediatric group who represents pediatric rehabilitation medicine. What they found so far again is that the symptoms that are coming up in children are similar to the ones that have been found in adults who have passed, but perhaps not in quite the same frequencies within that group, but they are looking at how to analyze this data and where to go. I think based off of Matt McLaughlin's comments related to patients with POTS, the good news and bad news is none of us are going to run out of patients. At this point, I'd like to turn it over to Abby to tell us a little bit more about what she's been doing. Thanks, Sally. After seeing lots of patients over the past couple of years that have had SARS-CoV-2 infection on a busy acute pediatric pument consult service, I was noticing some trends of patients that were more severely affected and I thought it deserved mention. We're going to just categorize the patients. The first ones are that small subset, that 0.05 percent that get severe disease, they're admitted to the hospital, intubated on ECMO. They typically require an inpatient hospitalization and do get better. Then we also see the patients coming in with the multi-system inflammatory in children or MIS-C. They tend to also be very sick, often requiring an inpatient rehab stay. They tend to have more lingering symptoms and more organ damage. The next group is actually what I'm going to focus our case presentations on, and it's the patients that we typically see as pediatric rehab. Those who may have underlying neurologic developmental disorders, cerebral palsy, neuromuscular disorder, and how severe SARS-CoV-2 or even more moderate is affecting them and what maybe we should be doing about it and what their outcomes are. I just wanted to mention two other categories that I think are worth mentioning, but we don't have time to necessarily get into tonight. Those are the previously healthy patients who had potentially asymptomatic or very mild disease, and then had a subsequent neuroimmune or immune response that presented in a severe manner, acute transverse myelitis, GBS. We've seen a couple of more strange co-presentations, and then vascular injuries, stroke, that don't quite fit known stroke disorders of childhood and fit into that cryptogenic phase. Then we also have seen previously healthy patients that are having asymptomatic or mild disease, and then presenting with new onset of functional neurologic symptom disorder. Of course, it's clear that there are general effects of pandemic that make it hard to distinguish in some of these symptoms and patients. My first case I wanted to share is an 18-year-old male who has a history of dyskinetic CP. He had an ischemic event at birth, and is fed by G-tube, but requiring no medications for his movement disorder. He came in with respiratory failure and found to have COVID-19 pneumonia. His illness progressed and he was intubated and had a prolonged hospital course, multiple readmissions to the PICU. By the time he was back on the floor, he had a new baseline of BiPAP. In addition, he had a GI bleed and had to switch to GJ-2 feeds. Regarding his dyskinetic movements, he had a significant worsening during his hospitalization. He also had a lot of agitation and was unable to tolerate being up in his chair. He was started on different medications, gabapentin, mostly for potential neuropathic pain related to his critical illness, and then Artanin Valium for his movements. That were also interrupting his sleep, and potentially leading to functional decline. He had ongoing persistent tachycardia, and he was found to have a pulmonary emboli, which was treated with Lovenox. I bring this patient up, let's look at his outcome. First, he was dependent prior for his mobility and ADLs. He was actually able to communicate with some gestures and follow very basic commands from time to time and fed by G-tube. Then when he was discharged, if we just look at this, let's say from a global scale, I mean, he still looks dependent, he's still being fed by a GJ-2, but when you put on your pediatric rehab lens, you start to see, okay, he's not verbal anymore, he's not communicating in the same manner, and he's not able to get up out of his chair. When we saw him in follow-up clinic, he was struggling with insomnia and still having a lot of abnormal movements even on the same doses of medications, and unfortunately, now he's 18, and it's time to talk about transition, and he just looks so different. I think that this is one thing that we should be paying attention to, and that we, just to discuss this a little bit, that our traditional functional measures, if we aren't thinking about patients in more detail, we might miss some of these opportunities or some of the changes that are happening with our patient population. And so now I am hoping we can have another quick poll where you've heard this patient with CP and the decline, and I'm wondering is, in other people who are seeing patients following acute SARS-CoV-2 and cerebral palsy, are you seeing a decline following infection? So is this an outlier, or are they also having decline? And while we're answering that, I'll kind of just wrap up some of the discussion here. I think some of the questions that I've brought up to the Recover Initiative are, what does PAS look like in patients that have chronic medical condition? And I'm using this example of CP because it's so common, but I think it could apply to a lot of different pathology. So give it a couple more seconds here. So we're seeing a little bit of both. And so just another point I wanted to bring up when we are thinking about our patients is also the just general stress that has come along with the COVID-19 and SARS-CoV-2 infections, and parents that have children that have had neurodevelopmental delay. And it's been shown that they have significantly worse mental health and parenting stress. And this was a larger prospective study of patients living in a different country, but I think it's important that we note that not only could part of that stress be the fact that, yes, this patient had previous functional impairments, but now they're different, but we don't really have a good way to capture that. We really need to be doing more longitudinal studies to look at this and how we can support our patients and their caregivers. And one of the things that I've also been thinking about a lot lately is potentially utilizing a tool like a patient-reported outcome measure system so that specifically because this was created to be relevant across all conditions and for the assessment of symptoms and function. And so I think this could be potentially a good tool. I'm gonna switch to the next case, which is a 19-month-old female who had a history of congenital myasthenia gravis and was admitted with fever, cough, found to have SARS-CoV-2. Initially, she did okay, but started to decline on supplemental oxygen and was given, was transferred to the PICU and intubated. She was given remdesivir and dexamethasone and then had significant further decline, thought to be potentially aspiration and was started on antibiotics, continued to worsen and actually had to be put on ECMO. While she was on ECMO, things escalated again and they decided to do a bronchoscopy and exchange for PICC line. She suffered a cardiac arrest, which she was given immediate resuscitation and was achieved after five minutes. But at that point, she continued to require mechanical ventilation and underwent a tracheostomy, was unable to feed by mouth and underwent a G-tube. Ultimately, was stable enough to be discharged to inpatient rehab close to home, but, and this was after a four-month hospitalization, but ended up having to return back to the ICU just five days after discharge due to emesis and altered mental status and had another month-long hospitalization with this waxing and waningness, not responding to her home medications of increasing acetylcholine. So she was discharged from the parents, really felt at this point that they really felt comfortable with her care and wanted to proceed with outpatient therapy. So looking at her functional outcome, I mean, this patient prior was independently ambulating. She was requiring just age appropriate assistance and was speaking in short phrases. She did require some supplemental feeds with an NG tube overnight, but was really progressing nicely with her puree feeds and a sippy cup. And at the time of her discharge now, she was unable to stand. She was requiring a lot of assistance just for like bed mobility. She was attempting vocalization. So she was certainly was interested, but just not able to quite make that happen and was due to bed. And over the course of the next couple of months, she did have improvement on her standing tolerance, but really had this fluctuating alertness and ptosis. And granted that can happen with myasthenia gravis, but her fatigue and her ability to participate just seemed to be outside the expected recovery with like a hospitalization or viral illness. And so to kind of wrap some of this up, and I guess I chose those cases, but I have about 60 patients that I've seen over the course of, particularly during the Delta and Omicron waves where I have suspicions or were directly affected by SARS-CoV-2. And so I think our job as pediatric rehab is to really understand and educate ourselves and the pediatric community about how to best support these patients and really where are they even landing? Because I think right now, sometimes it's hard to capture why they may have decline. And I think it's a frustrating situation for families and caregivers as well. I think we need to be collaborating because in some of these severe COVID-19 presentations, it is rare and we may have to be talking from multiple institutions and potentially even internationally to really pick up on these trends because so far the presentation has been very heterogeneous. There's need for chart review and retrospective studies. So through the recover study, we're involved in a large chart review process and we have included functional outcome questions, including things like, is the patient back in school? Is that school at home or in person? Are they able to participate in extracurricular? And also have crafted some of the questions of the review to reflect patients that may have already previously had IEP or 504 plans, like were they changed? What kind to try to capture some of our patient population that I think might not be captured if we're not asking the questions from a pediatric rehab lens. So the last thing I'll say about our understanding is that we potentially wanna be doing prospective longitudinal studies and then really developing a reliable outcome measurement tool and that might be something that we already have like promise but we might also wanna think about some other way. I think we also have the duty to mitigate and prevent and that probably comes from more education and preventive strategies, but I also think it comes from early recognition. And if a patient's had an acute SARS-CoV-2 infection and they're having a neurological symptom, they need to go more urgently and more immediately to be given potential steroid treatments or whatever might be the treatment for their symptoms. And I think then at the end here, we are here to promote and support these patients and their recovery and educate other teams and then refer when needed. And I just threw this in here because I wanted to kind of get in this community setting, start thinking about like, how do we continue to mitigate further disability and disease burden? And so I think, when I was preparing this talk, I got my email about enterovirus is back and we need to be on the lookout for AFM and it got me thinking like, we really need to have a similar coordinated effort to think about when we're having surges or increased cases to be thinking about, could this patient be having some sort of post COVID sequelae or some sort of neurologic immune sequelae of COVID-19. And here at the end, one of the other ways that we're trying to capture functional outcomes is working with a natural language processing team on the feasibility of looking into lots and lots of unstructured free texts in the form of progress notes and other EMR or EHR information and trying to see if that can be used to understand PASC and how it's affecting function. And so it's pretty primitive and early. There's been a lot of, the process requires a lot of specialized team members and so I'm certainly excited to see where that goes and would be happy if this were something that could help us understand function to learn where to go from there. So I will stop for questions and also just say a big thank you for staying on if you're on the East Coast until almost 10 o'clock. Really appreciate everyone here listening to our talk tonight. Thank you so much. Such an interesting and important talk for all of us. I'm looking in the chat and I don't see any questions yet. I'm looking in the chat and I don't see any questions yet, but if there's any questions for this group or for anyone else as we kind of wrap up here tonight, please stick it in the chat. And sometimes there are no questions because you guys did such a good job. It looks like we have one here. So did you say you were seeing 60 patients post COVID? Anyone else seeing that many? I wanna clarify. I was talking about my acute care PM&R consult service. I have seen 60 patients that have had sub quality, meaning that either it was severe disease, multi-system inflammatory, a new functional neurologic symptom or some sort of stroke in the setting of acute COVID that we're not quite sure why they had a stroke or transverse myelitis, GBS, et cetera. Yeah, that's been over the past two and a half years, 60. So it seems like a decent number. Yeah, is anyone else seeing similar to what Matt was asking? Is anyone else seeing something similar? Looks like, okay. So Kennedy Krieger post COVID seen more than a hundred patients now. Mike, were you gonna say something there too? I was, I was just gonna say there was a couple of questions above about the previous talk, if I could. There's actually questions and answers. So their first question, is there an amount of millimeters of mercury for a pressure for compression clothing? And the answer is ideally 20 to 30, but it can be less if it improves compliance. And next question was, how did you mobilize others to gain an interest in POTS? The answer is, it's been a challenge, honestly. She was lucky to have a behavioral psychologist who had an interest. And once there was enough patients that showed a real need, then they started finding a physical therapist who had an interest and then they set regular meetings. And then there was also a kind of a statement for everybody or a question for everybody. If anybody's interested in joining Christina in treating patients with POTS, please reach out to Stacey Suskauer and or Christina. Those are the questions above. Thanks. And there was a request in the chat to complete some feedback on Dr. Clark's talk. Does it have to be done now? Does not have to be done now. Okay. Feedback. It seems that we do not have questions at this time. Meanwhile, we are waiting for questions to come. I would like to thank first our dear pediatric rehab colleagues who attended this session, this community session day after working hours. It was really appreciated. We appreciate our wonderful presenters for the time and energy that they put into this work and also their dedication to the field of pediatric rehab. And also Grace and her colleagues at APMNR and their excellent support to make this happen.

Pediatric Rehabilitation

community session

Zoom platform

etiquette

Dr. Hanna Azizi

speakers

agenda

Pediatric Rehabilitation in the Middle East

challenges

opportunities

patient population

insurance

POTS

autonomic nervous system

medical specialists