Moving Forward: The Evolving Role of Pediatric Physiatry

Scott Webb (Host): Welcome to Pediatric Frontlines from Shriners Children's, where we explore the best in pediatric care. I'm your host, Scott Webb, and today I'm discussing the evolving role of pediatric physiatry in caring for children with limb differences and neuromuscular conditions with Dr. Jennifer Miller. She's a physiatrist or physical medicine and rehabilitation doctor at Shriners Children's New England.

Dr. Miller, welcome.

Jennifer Miller, MD: Thank you. Pleasure to be here, Scott

Scott Webb (Host): It's a pleasure to have you here. I told you I'm really excited to, to benefit from your expertise today. So let's just start here. For those who may not be familiar with physiatry, how would you describe what a pediatric physiatrist does, and how has that role and the way it's practiced and perceived maybe changed since you started training?

Jennifer Miller, MD: Absolutely. So physical medicine and rehabilitation is a little bit of an unusual medical specialty in that we don't have a specific organ system the way a cardiologist or a gastroenterologist really focuses a lot of their care around the functionality of one or, a few organ systems. Rather, we have this philosophy of looking at mobility and function and trying to optimize a patient's mobility and function almost regardless of their diagnosis.

And so when it comes to children, areas I concentrate are cerebral palsy and other congenital changes that can lead a child to have mobility differences, as well as limb differences and amputations that can directly change the way a child moves

Scott Webb (Host): Yeah, and I know that you came into this field during a formative moment that we're all familiar with, of course, treating survivors of the Boston Marathon bombing, when you were a resident. So how did that experience shape the way you think about amputee care and rehabilitation, especially now that you apply it, as you say, to children?

Jennifer Miller, MD: Well, it was very clear when I was a second-year resident and I was caring for all of the survivors of the marathon bombing as they received their rehabilitation at Spaulding Rehabilitation Hospital, that I was having, hopefully, a once-in-a-lifetime experience seeing such a acute and a varied number of people who had suddenly been affected by amputation.

And it was very important to me at that time that experience not be wasted on me. I wanted to make sure that those really unique experiences I had with each of those survivors would benefit my future patients. So I kind of made a choice at that point in time that amputees were going to be a focus of my care.

And in my past 10 years as both an adult and pediatric provider, I saw a variety of patients of all different ages affected by limb differences and amputation. And now I'm very much welcoming the challenge of applying it specifically to pediatrics and specifically to the very unique presentations we see in both infants born with congenital limb differences and the various accidents, cancers, and other circumstances that might lead a child to have an amputation during their childhood.

Scott Webb (Host): Yeah, and as you say, let's hope that was a once-in-a-lifetime experience, but obviously great experience for you that you've taken forward now, sort of paying it forward i- to children. And along those lines, doctor, I know pediatric limb care isn't just like adult care, but smaller, right? So what's fundamentally different about fitting and managing prosthetics for a child who's still growing both physically and developmentally?

Jennifer Miller, MD: So in the pediatric space, we are challenged to constantly have a very dynamic relationship with a patient's care needs because what they might need this fall is not what they're gonna need next spring. And so with each change of a child's physical size as they're growing, as they're getting taller, as they're gaining weight, but also as their interests and their kind of recreational pursuits evolve, all of those are potentially times that their prosthetic changes might change.

And so we need to be very nimble in the way that we approach their care and ready to change along with them. So one of the things I love about operating in the Shriner's system is that there is a little more bandwidth to be creative about what kind of prosthetic equipment we can give a child and how we can address, you know, new recreational pursuits they might have with an appropriate prosthetic device.

Scott Webb (Host): Yeah, it's interesting you're sort of with them throughout this journey as they grow and change and resizing, refitting, all of that. It makes me wonder then, you know, when a family first learns that the child's going to need a prosthetic device, whether it's from birth or amputation, what does that early physiatry involvement look like, doctor, and why does the timing maybe matter so much?

Jennifer Miller, MD: Yes. So a tremendous piece of what I do as a physiatrist is educationally based. So from the moment a family learns that might be part of their future, I'm hopeful to be involved alongside the surgical team, helping manage expectations and help prepare families for what is coming ahead of them, if that's the case, or if something has already taken place and we are catching up with the new circumstances of a child's body.

I really like to take an educational focus in my visits so that everyone, you know, feels better as they understand what's next. Another thing I learned from my experience with the Boston Marathon bombing survivors is especially when an amputation follows an accident or a trauma, that the person finds themself in this very strange place between relief to be alive, relief to be a survivor, and grief over the new circumstances of their body.

So being able to be present with someone when all of those different things are at play simultaneously, is an important part of the job as well.

Scott Webb (Host): Yeah, that's so interesting, thinking about what you said about grief, sort of grieving the loss of a limb and grieving this new f- sort of shape or form or look to their bodies. we think about your approach to the emotional and side of limb difference care for both children and parents, you know, alongside the physical rehabilitation.

Maybe take us through that.

Jennifer Miller, MD: So like, like so many aspects of what I do, it really takes a team. So we're fortunate that I can focus time during my visits on my position from a medical expert, from a kind of fortune teller of what's ahead when it comes to what the next chapter of their care is going to look like. But that needs to be partnered with appropriate mental health care, which we can obviously make referrals to other specialists, but we also have our own social worker providing real-time support for our patients as they need it, as they go through some of these processes.

And then I think one of the most important assets to families is peer support. So often we will facilitate visits with other children and other families who have had a similar experience, and there's really nothing that parallels hearing about what it's like to be on the other side from a child and a family who have lived something similar

Scott Webb (Host): Yeah, you can see how that would be really beneficial. And I know that you built a multidisciplinary cerebral palsy clinic at Albany Medical Center. So what problem were you trying to solve by bringing that team together, and what does multidisciplinary mean in practice?

Jennifer Miller, MD: Absolutely. So the spasticity clinic at Albany Medical Center was really born out of my experiences really as a parent. So we started this clinic in 2020, and at that time, it was very scary to think about bringing your patient or bringing your child to the doctor's office, especially if it was something you could question, "Is it really critical that we be at the doctor's office right now?

Would it be safer for us to stay home?" And we wanted to make sure that if someone was taking the leap of faith of coming into a medical facility to get care for their child, that as many of their needs could be met as possible in one visit. the other piece that played into this is I was in a chapter of life where my own children were very young, and I had Wednesdays off at home with my children, and my orthopedist colleague was calling me every Wednesday 'cause that was when he was in clinic looking to talk about our shared patients.

And I was in this torn spot of saying, "Oh, I would love to collaborate on this patient, but my child's on the jungle gym, and I need to go spot him right now." And so from those situations, this multidisciplinary clinic was born where we would have all of our providers in one space at the same time seeing children with cerebral palsy.

So in one visit, they would see an orthopedist, a physiatrist, a neurosurgeon, an orthotist, and a physical therapist and really have all of those needs met at once. And for a long time, this seemed like a really sensational way to be delivering multidisciplinary care 'cause that's the cornerstone of what I do as a physiatrist.

Now, in my role at Shriners, I am able to deliver that same care really every day. My orthopedics colleagues are sitting right across the way from me in clinic. My physical therapy colleagues are right down the hall, as is the prosthetics department, so that real-time collaboration is feasible on a day-to-day basis rather than a once-a-month basis

Scott Webb (Host): Yeah, as you say, hard enough for patients and families to get in and making it sort of one-stop shopping, if you will. You see how that would really benefit everybody. A-and it makes me wonder, like, for a condition like cerebral palsy that, of course, children live with for the rest of their lives, how does your role shift as that child grows from toddler to teenager and adulthood?

Jennifer Miller, MD: Yeah. So nearly every day of my clinical life, I'll find myself saying something very similar to families, which is that cerebral palsy in and of itself should not change. It should be something that happened to the brain or spinal cord when a child was very young or right before they were born, and then it should stay the same for the rest of their life.

The difference is the child themselves is gonna change tremendously. So cerebral palsy will have this appearance of shifting and changing over time, but that relates more to the dynamic nature of childhood than it does to the pathophysiology of that diagnosis. And so when I'm following a child with cerebral palsy, when they're very little, maybe we're thinking about those early developmental milestones.

Are there things we can do to help a child roll, sit up, to pull to stand? Are there barriers from the muscle tightness in their body that might be getting in the way of those developmental milestones? And can we do symptom management to help remove some of those barriers? And then as a child is getting older, we're helping to facilitate their needs in the school setting.

What kinds of supports, equipment, therapy might help them succeed best in their s- their school setting? And that continues to evolve with the child. One of my favorite visits to do is a late high school student who's thinking about college and starting to spell out, "Well, what do college accommodations look like?

What kinds of doors can we open by advocating what it is that you need to be existing in a college setting, maybe even without your parents' support?" I have one young man who comes to mind who is striving in a college setting. He has caregivers who come in at the beginning and end of the day to his dorm room to help support him in transitioning, to get ready for his day, and is otherwise living independently and having a collegiate experience, which you wouldn't necessarily expect when you looked at a power wheelchair user, that would be the chapter of life he was at

Scott Webb (Host): That's amazing. And in preparing for this, doctor, I was reading up and, you know, brushing up so I could keep up with you today. and I know that spasticity and low muscle tone management have evolved a lot in recent years. So wondering what developments, whether in treatment approach, technology, team-based care, have really made the biggest difference for patients?

Jennifer Miller, MD: Absolutely. So there's a very careful choreography of how we deliver spasticity-related care throughout a child's life, because at certain points in time, like when a child is a toddler and then when they're in their early school-aged years, we need to be figuring out their body, managing their tone in a way that makes it more easeful for caregivers to address their needs, makes them comfortable, certainly helps them to achieve early mobility goals.

And then when they're starting to get bigger, maybe eight, nine, 10 years old, is when we can start thinking about investments in their future with more definitive surgeries. And so executing kind of that baton handoff between the physiatrist who might be managing that first set of symptoms and then the orthopedist who's gonna provide that more definitive surgery is a really kind of nuanced process that benefits from us actively collaborating.

It also benefits tremendously from technology like our motion analysis lab, where we can garner a ton of patient data that helps us to guide those decisions and find, you know, is it the right time for this particular ankle surgery, or is it the right time to do this combination of things, or do we wait another year?

And so making those decisions both with a collaborative team and then with an abundance of data from our motion analysis lab is one of the really exciting current parts of spasticity management. There are also up-and-coming surgical procedures that are really adding to the portfolio of things that we can offer our patients.

So in recent years, we've started to offer something called hyperselective neurectomy, which is where our surgeon dissects out the very delicate nerves of the limb and then selectively clips just a portion of them to allow for a very carefully very selective, choosing of nerve supply to the spastic arm or the spastic leg to allow that limb to perform differently

Scott Webb (Host): My face hurts from smiling so much today, hearing all the things, wonderful things you've said, and sort of shaking my head a lot. Just it's amazing. And I know that you volunteer. You're a volunteer examiner for the American Board of Physical Medicine and Rehabilitation. So why has physiatry education and training been such a priority for you?

Jennifer Miller, MD: Yeah. So in our field, because of our kind of philosophical focus on mobility and function rather than having an organ base, there's a very vulnerable group of populations we serve. We serve patients with congenital differences. We serve individuals affected by traumatic brain injury, spinal cord injury, amputations, often the common denominator being lots of things that happen to your body after a terrible trauma.

And so communication and delivering medical information in a very curated and careful way is a really important skill within our field. So we have one of the few specialties of medicine that still has an oral exam where physicians who are looking to get their credential in our specialty have to actually be on Zoom calls just like this one and, work their way through eight different patient scenarios to prove their medical knowledge, but also their ability to act as a thoughtful and a conscientious provider.

And so being an examiner in those situations and really getting to uphold the rigor of my specialty and see the newest members of our specialty is a really rewarding volunteer opportunity I'm thankful for

Scott Webb (Host): Yeah, I had no idea that people still took oral exams. I thought that was I thought that was a thing of the past. That's cool. And I know that you direct disability curriculum at Albany Medical College. what do you think other physicians most misunderstand about your specialty and patients with disabilities in general?

Jennifer Miller, MD: Yeah. So even though a quarter of Americans identify as having one or more disability, the care that individuals with disability receive is generally not as robust as other non-disabled patients. And many physicians find themselves feeling ill-prepared to care for patients with disabilities. So as a physiatrist, as someone where the majority of my patients are presenting with either mobility impairment or other types of disability, I interact with patients who have a host of lived experiences.

And so my role in directing the disability curriculum is to empower patients who have lived experiences to come and speak to our medical students to allow them to have that lens of thinking about clinical situations differently, considering the perspective of someone who's living with a disability and what aspects of that encounter might be different for them because of that disability, and really shining a light on the patient population I spend most of my time with as a physiatrist

Scott Webb (Host): Shriners Children's has a distinct model, right? Care regardless of a family's ability to pay, and specialty teams built around conditions like limb difference and CP. So how does practicing within that model change what's possible for you day-to-day, compared to maybe your previous experiences?

Jennifer Miller, MD: Yes. So, it has been a dramatic improvement in my ability to l- deliver care to be part of the Shriners Children's system, and that's largely because of the populations I serve. Amputees and children with limb differences are in need of often very expensive medical equipment. Prosthetic equipment is both expensive to begin with, but also in the context of a child, is frequently being replaced or frequently being upgraded.

And, in the context of the private payer and, Medicare/Medicaid insurance models, there's some shortcomings of what is generally available in the general public. So having the Shriners care pick up where the shortcomings of those leave off is very, rewarding. Things that I previously would have told a family, "Oh no, we can't pursue this," or, "No, that's not gonna be possible," at Shriners it's a yes.

And so that's been a very rewarding piece of what I do.

Scott Webb (Host): Yeah, lots of, lots of yeses, of course. And you mentioned motion analysis earlier, and I know that Shriners Children's invests in things like that, wearable sensors, genomics research, all tied to CP. So which of those advances are you seeing show up in how you treat patients today versus what's still maybe further out on the horizon?

Jennifer Miller, MD: So motion analysis labs are something we collect on our patients, both getting baseline data and then evaluating at different stages of their care. And this is just a tremendous resource, as I said earlier, for gathering a wealth of data about the way a child moves, and then evaluating whether the interventions we're performing, whether it's an orthopedic surgery, a new brace, a type of either botulinum toxin injection or nerve block that I personally provide, is making the intended difference.

So gathering data and then comparing that data allows us to provide much more customized but also much more thoughtful care. And then genomics and other genetic considerations is really kind of opening up as a new window through which we view cerebral palsy. In my previous roles, I would refer a patient for genetics and maybe wait eighteen months for them to see the specialist.

And in some instances, we're actually able to start genetic screenings and collect our own data here, which is really incredible for expediting a patient's care and trying to get a family answers.

Scott Webb (Host): Yeah, anyone who's ever tried to get genetic testing, there's always a very long runway to get there. So, amazing, as just about everything you've said today has been. we could probably do a separate podcast, doctor, just on patient stories. But is there one that captures what's possible, when physiatry, prosthetics, and therapy teams all work in sync early on?

Jennifer Miller, MD: Absolutely. So as you said, Scott, I-- thinking about this, there's many examples I can come up with, but I wanna highlight a kind of unusual circumstance where we've spoken about children who are born with, limb differences or born with amputations and those who've been affected by trauma. But there's a very unusual circumstance where a child and their family might actually elect to have an amputation.

And this is a time where that teamwork and that collaborative care really shines. So in the past year, I've seen a few different patients who have presented with a congenital limb difference that has gotten in their way. That's not, you know, they have a limb that's not serving them, that they're not able to do the things they would like to do.

And one of my orthopedics colleagues will propose, "What if we were to amputate a portion of your congenitally different limb to give a much more functional residual limb that could subsequently use a prosthesis?" And as the physiatrist, I get pulled into those visits and am able to provide a lot of education, a lot of speculation about if you were indeed to elect to become a prosthetic user, what would that look like?

How would it compare to your experiences presently? What doors might it open as far as future function? What it-- might it look like to age with a prosthesis rather than with your congenitally different limb? And so being a part of those discussions and empowering a child and their family to make the very difficult decision to have an elective amputation, I think really highlights that team.

And then once that, amputation is performed, I stick with the patient for their ongoing prosthetic care and prosthetic prescription. Obviously, our prosthetic experts are the ones fabricating and making those devices, and then our physical therapy team is working to train a child to walk perhaps differently than they ever have in their life.

One example that I'm thinking of that was the scenario I just described, this young man had such a significant limb length difference related to his congenital limb difference that he had hopped on one leg his entire life. And so now he's a teenager learning to walk on two legs for the first time. And so of course, that is both a heavy lift but a huge reward for our physical therapy team to be training him to walk in a new way.

Scott Webb (Host): I'm trying to keep the tears from streaming down my face just thinking about that. It never occurred to me, doctor, that that children and families w-would be in a position where they could elect to do this, would elect to do this. it's pretty mind-blowing, and I'd love to talk to you more.

But for today, just looking ahead, what are you most hopeful about for the future of pediatric physiatry, whether that's research, technology, or just simply how the field is integrated into a child's overall care team?

Jennifer Miller, MD: Absolutely. I mean, I think the structural choices that allow us to collaborate and the things that we do to foster that collaboration will continue to mean good care delivery and good teamwork. And then the technology at our disposal is just constantly expanding. So the things we're learning from motion analyses, but then from other types of motion capture, many children with cerebral palsy have dystonia, which is kind of a dancing movement in the background superimposed on their spasticity.

And there's starting to be AI engines that you can take a video and s- quantify whether a child has dystonia or not. So there's gonna be a lot of exciting technology at our fingertips to supplement the excellent teamwork that we already know to be so helpful for our patients

Scott Webb (Host): Well, I've had a lot of smiles today, some tears. my mind is fairly well blown. I just appreciate everything you, the team, everyone is doing there for children and families. Thank you so much

Jennifer Miller, MD: Thank you, Scott

Scott Webb (Host): And for more information, including a full range of care disciplines, please visit shrinerschildrens.org.

And to hear more Pediatric Front Lines episodes, please subscribe wherever you listen to your podcasts