New Horizons Virtual Town Hall 5- Nationwide Children's Hospital

Our educational series continued with a panel of experts from Nationwide Children's Hospital on Monday, March 29th, 2021. This virtual event featured a multi-disciplinary panel discussion.

Panelists

Laurie Glader, MD Section Chief of the Division of Complex Health Care and Medical Director of the Comprehensive Cerebral Palsy Program

A graduate of Stanford University and UCLA School of Medicine, Dr. Glader completed her pediatric residency and fellowship in Behavioral and Developmental Medicine at Boston Children’s Hospital. Dr. Glader served as the Outpatient Director of the Complex Care Service and as Co-Director of the Cerebral Palsy and Spasticity Center at BCH for many years. Dr. Glader has a research interest in how pediatricians can work with multi-disciplinary teams to enhance the lives of children with complex conditions.

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Garey Noritz, MD Section and Division Chief of the Complex Health Care Program

Garey Noritz, MD is an Internist and Pediatrician at Nationwide Children’s Hospital. He is Professor of Pediatrics at The Ohio State University, and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital. Dr. Noritz’s research interests include efforts to improve the early detection of young children with motor disorders, bone health in patients with disabilities, transition of children with disabilities to adult models of care, palliative medicine, and the respiratory care of patients with neuromuscular diseases.

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Nathan Rosenberg, MD Assistant professor of Physical Medicine and Rehabilitation at Ohio State University, Medical Director of the Rehabilitation Inpatient Consultation Service

Nathan Rosenberg is an assistant professor of Physical Medicine and Rehabilitation at Ohio State University. His clinical practice is at Nationwide Children’s Hospital, where he specializes in the care of people with cerebral palsy. He is also the medical director of the rehabilitation inpatient consultation service. He shaves his head annually for charity and encourages you to challenge your care providers to do the same.

Rachel Byrne:

Hi, everybody, and welcome to our fifth Townhall series. It's the New Horizons, the cerebral palsy update for families and I'm really glad today to be joined by the team from Nationwide Children's Hospital. The purpose of this Townhall series has really been to show and educate both families and young adults living with cerebral palsy what is available currently and what is the best evidence. And we are really excited to be joined by Nationwide Children's Hospital team today, as I mentioned, and we could not have done these Townhalls without the support from Ipsen Biopharmaceuticals.

Rachel Byrne:

So to get started, I'd actually like to introduced you to Dr. Laurie Glader. Dr. Glader is the section chief of the division of Complex Healthcare and the medical director of the Cerebral Palsy Clinic. I've been fortunate to work with Dr. Glader for many years now, and I'm thrilled that you're joining us here today.

Dr. Laurie Glader:

Thank you.

Rachel Byrne:

I'd also like to introduce you to Dr. Garey Noritz. Dr. Noritz is the section and division chief of the Complex Healthcare Program, and he is an internist and a pediatrician. And then last but not least, I would like to introduce you to Dr. Nathan Rosenberg who is the assistant professor of physical medical and rehabilitation at Ohio State and a very valuable team member of Nationwide Children's Hospital's Complex care team, I suppose.

Rachel Byrne:

And also, we would also really like to welcome Greenie back who does all our sign language interpretations for us, so thank you, Greenie. So to get started, Dr. Glader, I'd really to sort of dive in straight into the question around what is cerebral palsy and how is CP diagnosed? What are the signs and symptoms, and then what are the different types? So there's lots to sort of start to unravel there, but can we start with what is cerebral palsy?

Dr. Laurie Glader:

Yeah, absolutely. That is a long list of questions so we'll work our way through it. I think one of the most important things to recognize out of the gate about CP is that it really refers to a group of disorders. So it's a large umbrella term that refers to a group of challenges with movement and with posture that results in limitations in activity. And I've already said a lot there, and we can go through this a little bit further, but those abnormalities of muscle tone, of muscle movement happen because of some sort of non progressive injury to the developing brain and it can happen for a lot of different reasons.

Dr. Laurie Glader:

But in the end, the parts of the brain that control motor movement coordination are affected, and within that umbrella, there's a wide spectrum of what that might look like. It can be very mild and it can be very profound. So someone might have a little bit of a difference in the way they walk, but be completely independent. Maybe they have a special shoe or a brace, but someone else might be in a wheelchair and need to be pushed by someone else. So you have those ends of the spectrums and everything in between.

Dr. Laurie Glader:

And I think some of the important pieces of the definition to be aware of are that it's not progressive so that whatever happened in that developing early brain, it happened and it doesn't really change over time. That's not to say that the way CP looks doesn't change because as children get older, coordination, balance, all sorts of things happen and I'm sure that Dr. Rosenberg will talk about that a little bit, the changes as people age, but what fundamentally happened in the brain does not progress.

Dr. Laurie Glader:

So that's super important. And then the other thing that's important to know about CP is that these motor issues that I've described, the challenges with posture and movement and activity limitation can often be associated with some other very common neurologically driven problems. So those can be differences in the way the brain perceives things, differences in learning ability, intellectual function. It can be associated with challenges with communication and seizure disorders at times. And then, of course, over time, CP can also be associated with somewhat predictable musculoskeletal problems. So I've said a lot, I kind of feel like I need to pause.

Rachel Byrne:

Absolutely. And we have a lot of people already listening to this as well, so any questions that you have for any of the doctors that we have on today, please put them in the chat function, we'll do our best to answer them. And one's actually already come in around the cause of cerebral palsy. So what causes CP or what do we know about that?

Dr. Laurie Glader:

Sure. So, again, it's something that happens to the developing brain, but that's a pretty broad statement, right? So it could be something that happens during pregnancy that for some reason a child's brain develops differently, it could be from a genetic reason, it could be because of a difference in blood flow, it could be infectious. Lots of reasons that all these things could happen before birth, actually.

Dr. Laurie Glader:

And then there are things that can happen around the time of birth as well, similar categories of things with changes in blood flow and oxygen delivery and sometimes bleeding within the brain. And then you have the time after birth too. So again, injury can occur at all of these different times and after birth, we see things like strokes and infection.

Dr. Laurie Glader:

And so again, I guess the important point is that there are many, many different things that can contribute to the risk of CP and to the development of CP, and they may happen at any point along the line, really up until the child is a couple of years old while the brain is busy myelinating if there's an insult or an injury at some point along the line, at any point in that timeframe, the result will look like CP if that makes sense. Garey has something.

Rachel Byrne:

Yeah, Garey. I also have a question for you as well, and so please obviously jump in.

Dr. Garey Noritz:

So just to pipe in on that, we also usually quote a figure of about 20% of the time that we don't really know why a child has cerebral palsy. That number is probably going to go down as we learn more and more about the genetics of cerebral palsy, but let's say that 80% of the time, we can make a pretty good guess as to what caused a child cerebral palsy.

Rachel Byrne:

Mm-hmm (affirmative). And I think that's really important because when we sort of think about then around say diagnosis, and why diagnosis potentially can be tricky, but the tools that we do have. So could you just elaborate a little bit more about then on the advantage of this diagnosis? Laurie did mention that it's non-progressive piece of the brain, but the thing we do know is the brain can still change. So Garey, what are the sort of advantages of early diagnosis? And then what does that mean for the brain?

Dr. Garey Noritz:

Okay. Yeah, it's so interesting and one of our partners, Dr. Nathalie Maitre, this is really her field and she couldn't be with us today, but I'll fill some of the questions that she normally would. We often think, especially in adults, that the brain can't change very much, it can't heal very much. It's probably not all that true for adults and it's the younger you get, the more the brain is able to heal or find workarounds for parts of the brain that have been injured or disturbed in some way. And so what I think we're really becoming very aware of is that the earlier we can get children into sort of CP specific therapy or CP goal directed therapy, the better the outcome will be for the child than if we don't get them into that kind of therapy on the early side.

Dr. Garey Noritz:

And the reason for this is something that we call neuroplasticity, and the brain is more plastic or more pliable or more resilient, let's say, the younger a child is. And so the saying in the neuroplasticity realm is that neurons that fire together wire together. And so if you are able to have a child working on tasks that they're not able to do yet because of the disturbance in their brain, they're more likely to rebuild these circuits in the brain that may have not formed correctly.

Dr. Garey Noritz:

One of the things about early diagnosis and this really came, came home for me when we started working on this is that we used to think that you really couldn't diagnose cerebral palsy until a child was two years old, and one of our colleagues said imagine you went to the hospital and you had a stroke, but the doctor couldn't tell you if you had a stroke or not for two years. And that's almost essentially what we were telling families a before we got into the early diagnosis field. And so now we know a little bit better about which kids we really need to be watching for the development of cerebral palsy, and we have some good validated tools that we can use to detect motor problems very early. And when we detect them early, we can affect the outcome better.

Rachel Byrne:

And you brought up a really good point when it comes to neuroplasticity. You mentioned obviously the ability of the brain to change itself in early childhood, but we've got a lot of adults listening as well. And when we talk about neuroplasticity, there is still opportunities across the whole lifespan. Is that correct?

Dr. Garey Noritz:

I think so. I'll look to Dr. Rosenberg to answer more specifically, I think. But I will say it's easier the younger your brain is, but that doesn't mean it's impossible as an adult, I don't think.

Dr. Nathan Rosenberg:

Thanks for that pass Garey. Yeah, I'm willing to commit to yes, I think that neuroplasticity is an available thing as folks grow into adulthood, and we have some evidence in different literature at different times of brain injury that you have people that are 10 years post an injury or that are still past the developing brain phase and they're still making functional improvements.

Dr. Nathan Rosenberg:

And so I think that it's pretty comfortable that I can commit to the fact that there is neuroplasticity available for adults in general. I think that it is less than that of kids. I think we can agree on that, that it's less than that of kids, but often, I get the question from people who say, "Am I finished improving?" I don't think I've ever said yes.

Rachel Byrne:

Yeah. And I think that's such a good point and we'll be talking about some different interventions and things like that later on, but thinking about the purpose of those interventions and what they're actually achieving. So is it something that's achieving something at the muscular or the bony level, or is this something that is looking at changing parts of the brain? Now, this sort of leads me into this sort of next question around the care team, because obviously developing a care team and having that team strong around you both if your child's young and even through adolescence and as adults, it is so important to make sure you've got the right team around you.

Rachel Byrne:

So Dr. Glader, how did the family start thinking about putting this care team together? Obviously, Nationwide Children's Hospital, you have an incredible multidisciplinary team that people have access to, but who are some of the people that should be on the care team?

Dr. Laurie Glader:

That's a really good question. And you're right, there are some centers tend to be academic centers where there are formal cerebral palsy teams, so we do have that at nationwide. But you may not have access to something like that and that's okay. What is critical is just to get the right people on the team for your child or for yourself. So who needs to be on your team really depends on how CP affects you. So it's probably fair to say that because of the nature of CP, everyone with CP has neuromuscular problems. They have trouble with their coordination in some capacity, they have some issue with maybe their muscle tone and the way they're able to engage in certain motor-related activities.

Dr. Laurie Glader:

And so pretty much everybody who has CP needs to be involved with, I would say, either a physical medicine doctor, which is Dr. Rosenberg in our group here today, or an orthopedic surgeon. But someone who's going to be able to look at what's going on from a musculoskeletal standpoint to make sure everything is lined up right and functioning as well as possible and I'll let Dr. Rosenberg talk about that in a second, but going to be universal.

Dr. Laurie Glader:

Oftentimes, particularly early on when a child is being diagnosed, a neurologist plays a very important role in watching that early development, confirming that indeed the child has CP. So getting in touch with the neurologist at the very beginning can oftentimes be very, very helpful. And then if someone has epilepsy or seizures, obviously, the neurologist is going to play a really important role over the long haul.

Dr. Laurie Glader:

I would also voice a strong vote for a pediatrician, and that may be your community pediatrician, or it could be a developmental pediatrician or someone who has specific expertise in CP depending on where you live and what you have access to, but someone who with you is going to be looking at the child as a whole and thinking about what needs to be addressed both from a musculoskeletal and neurologic standpoint, but also how are things going in terms of eating and growing and thriving, developmentally, these are all things that need to be monitored.

Dr. Laurie Glader:

So those are some of the sort of core people on the team. And then, of course, there's a whole nother layer of therapists that play a huge, important role. So I don't know if Dr. Rosenberg, you want to elaborate maybe on those musculoskeletal and therapeutic pieces?

Rachel Byrne:

Yeah. And I'd also like you to describe sort of what is a physiatrist, because obviously, sometimes if this is a new sort of world to a lot of people, they may not have even heard of what a physiatrist does or even the world of physical medicine and rehabilitation.

Dr. Nathan Rosenberg:

Sure. So we'll start with that. So what is a physiatrist? I would think that the simplest way to say it is that we are a doctor of function. So we meet with somebody in their family and we say, "How do you function? What can we do to improve it?" And that is not all of what we do. We still end up in a lot of the screening world and a little bit of the treatment world too, but a lot of it is function related. A little bit of the diagnostic world too, I know we were speaking about cerebral palsy diagnosis and our group of Nationwide Children's, the seven of us, we also do a lot of cerebral palsy diagnostic work too.

Dr. Nathan Rosenberg:

But when it comes down to it, our focus is function and function comes in many domains. So those domains being movement is one of them. Moving your body, however you get your body to one from one place to another and there are many ways to do it. We think about the way people communicate, the way that they use their hands and then we think about how efficiently and comfortably they can do that. I would say that the way I try to communicate this with patients is talking about a toolbox, and this toolbox is full of tools, and we really shouldn't pull the tools out until we identify the thing we want to get better.

Dr. Nathan Rosenberg:

And so the tools can be a referral to therapy, physical therapy, occupational therapy, speech therapy, therapeutic recreation. The tools could be an intervention. I'm sure we'll get into this somewhat about whether it's a medication or Botox or whether we refer to an orthopedic surgeon or a neurosurgeon, but the concept still comes that the tools should be that which improves function. So the conversation starts with function and then the tools come out when we mutually agree that this tool that we use could help function.

Rachel Byrne:

And so I'd like to ask actually a little bit question around this function. So some people listening may have heard around the international classification of function, which is sort of a way I suppose, to describe actually, any disease, disability, disorder. It's sort of thinking about it in those regards. Nathan, can you just expand on that a little bit more and sort of let people know the different components almost that you are sort of thinking about with function. So it's not just, I suppose, somebody's muscles and their bones and what's going on.

Dr. Nathan Rosenberg:

Rachel, do you have an ICF graphic? Any idea about that?

Rachel Byrne:

I do. And I will actually put it up, give me one and I will make that happen. But if you keep talking, I'll get it up.

Dr. Nathan Rosenberg:

Okay, sounds good. And I think my hope is that conceptually, the ICF helps us work with families to identify their own. It's an identity thing so what is your identity and what are your goals? And I think once we see it, it'll make a lot of sense. For those of you that have seen the ICF, it's useful, but while we're working on getting that up, I think that it breaks down the way people think about their lives in general and how people participate throughout their individual days. And I think, when you read it, it makes sense, but again, I think we're just waiting for that to come up.

Rachel Byrne:

Yeah. It should be up now for everyone and it's just on there to the left.

Dr. Nathan Rosenberg:

Okay. Unfortunately, I can't see it so [crosstalk 00:22:09]-

Rachel Byrne:

If you sort of have a look at the top, it sort of starts talking about body structure and function and what that means. Then if you look at the next box it goes into activity participation, and then the two bottom boxes have environmental factors and personal factors involved in that ICF framework.

Dr. Nathan Rosenberg:

Sure. Gotcha. I feel like I want to point at it, but it's over there, right? Because the camera is... It's up there

Rachel Byrne:

No, no. Other way, other way.

Dr. Nathan Rosenberg:

Oh, shoot. All right. Well, I'm not going to point at it. So, I mean, when you look at these individually, I think this is how people think about themselves. And certainly, the simple thing you come to your rehab doctor and you say, "Okay, here we are with body structure and function," and to use a 2020 type term or a video game type term is what ends up being, I think the participation part really in there is where you level up, where you said, "Okay, we have nuts and bolts of how you function and participation is truly the leveling up within the ICF to say, okay, now that we have your function, how do we get you engaged in society? How do we add these functions, put these functions together so that you are engaging with people around you, so you're engaging in tasks that you enjoy whether they're social or not?

Dr. Nathan Rosenberg:

And so I think the ICF framework, whether we actually have it up on the walls in the clinic or not, is something that's always in our mind. And I think that, again, we like to always think about going one step further, so leveling up even further to say, "Okay, here's where we are. We're trying to accomplish these [inaudible 00:23:47] individuals have what will we do right after that?"

Rachel Byrne:

No, thank you. And I think it's such an important piece to start thinking about. I'm going to invite everyone else actually back on and we can start actually talking about shared decision making and what that even means because I think once you saw that ICF framework, you saw that there were so many different components to obviously somebody's life in a way and how that impacts their cerebral palsy or any type of disability.

Rachel Byrne:

And so, Dr. Noritz, could you just sort of describe a little bit around shared decision making and how important the dialogue actually is between both parent, child and physicians, and the clinical team?

Dr. Garey Noritz:

Yeah, sure. So shared decision-making is a process that we should have been using in medicine all along, where we're only now being able to name it and really say that, "Hey, you're not doing your job as a doctor if you're not engaging in shared decision making." First thing usually is to discuss with a family and verify that a decision of something is needed. Is there something that there needs to be a decision about?

Dr. Garey Noritz:

And so tracing back to the ICF framework that we had up there, really, what happens a lot of the time is that there's a thought that, "Hey, we can improve somebody's function. We can improve somebody's participation. We could improve somebody's fun, or what have you by doing some kind of a procedure or by using some kind of a brace or using some kind of a device like a brace or a wheelchair or a communication device to improve people's functional communication.

Dr. Garey Noritz:

And then shared decision-making is really about eliciting, sort of getting between the family, the child and the medical, a dialogue, or I guess it's a trialogue, about what's important and what would be the goal, and then what is possible given the tools that we have? And so obviously, the best tool we wish was a magic to take away somebody's cerebral palsy, but barring that we have all the things that I've mentioned. We have medications and we have surgery and we have many non-medical things too like exercise groups and support groups in school and home nurses and families and all of these things to help support a person.

Dr. Garey Noritz:

But what can we do to identify what it is that we need to make a decision about? And then how can we understand what's important to the family and the patient person, and then how do we get there giving the tools that we have? And you can only have this with a discussion. And this discussion often takes a while and it often takes several sessions of discussion, for instance. Like, hey, we've identified that pain is a problem, we have done an exam, we've done some testing. We essentially could offer therapy A, B and C or none, and that's a decision too, and then the family needs to think about it and sit with it for a while and come back with, well, what are further questions? When you said this? What did you mean by that?

Dr. Garey Noritz:

Because with time, the medical team will also come to understand the child and the family situation better. And so this is a very fluid kind of process and, I mean, there are some things in medicine that are sort of very clear like you come into the hospital with a car accident and we know that we're going to be doing these things in the emergency room to stabilize you and so on. In the world of cerebral palsy, we often have the luxury of some time to think about what are the things that we want to do, get several different opinions and really have a good understanding of what a process might be for improving a function before we really head into it.

Rachel Byrne:

So this is sort of the next question that has just come in then. So how does someone find somebody who is well versed in cerebral palsy? Because I think a lot of people find potentially some are not. And so what are some good questions that a family could take to their doctor to start trying to find somebody?

Rachel Byrne:

We all definitely share resources because there are absolutely resources like the American Academy of Cerebral Palsy and Developmental Medicine where you can actually go search positions from part of that and therapists. But what if there's some things that a family can do to sort of be proactive? How to find the right people and asking those questions.

Dr. Garey Noritz:

It's a great question and it's a big problem in a lot of areas. And I would say, first of all, that cerebral palsy is common enough that your average pediatrician or family practitioner or pediatric nurse practitioner in the community should have some patients with cerebral palsy, so it should not be a completely foreign entity to them. And in each area, each primary care, I'll just say primary care provider to say it globally, they usually have developed a bit of a network of the people that they go to for certain kinds of problems.

Dr. Garey Noritz:

And so they probably have some specialists, whether they're very nearby or not is a problem because there's such a maldistribution of specialists in this country, but they probably know we can go to these kinds of places to talk to therapists, these are the neurologists or physical medicine or developmental pediatricians that we talk to about these kinds of developmental problems who might be different from the ones that we speak to about autism or ADHD, but they might be the same. It's somewhat individual.

Dr. Garey Noritz:

If you are on a website looking at your local or nearest children's hospital, you can usually find some information about the people there that take care of cerebral palsy. You might also look specifically, if they don't say cerebral palsy, they might say spasticity, they might say neuromuscular disease, although that sometimes means things like muscular dystrophy. But I would always direct people back to their pediatrician to start with. And Dr. Rosenberg... Oh, now we got two hands up.

Rachel Byrne:

I think that's wonderful advice and I think I was just going to ask you a question, Dr. Rosenberg, because Dr. Noritz, you actually used a very specific word there, spasticity. And so one thing that I've realized is that we haven't actually dived into are the different types of cerebral palsy, because obviously, and we've actually got a question specifically for you, Dr. Rosenberg, about dystonia. So I'd love to sort of expand on that a little bit further. You might have something else to add prior, but just keep that question I just asked in mind as well.

Dr. Nathan Rosenberg:

Okay. So I just wanted to tag on with Garey and with Dr. Noritz there in terms of the conversation about how do you find your people. And I do think that this COVID 19 thing in our society has taught us one thing is that geography can become less of an issue, I think, than it used to be. And so I'm thankful for the fact that within the last month, that I got to via telemedicine go to every time zone in the country. Don't count Hawaii, don't do that, but all the other time zones, and I got to see people, and that involved not getting on a plane for some of them and I'm thankful for that.

Dr. Nathan Rosenberg:

And so I do think that as we get more resource connected, we do spend more time on screens, we can use that as a tool sometimes, sometimes we just can't and you have to be in person, but I think that finding your people may become a little bit smoother now that we have some screens to assist us. Maybe, sometimes. Changing gears completely over to the world of spasticity and dystonia and movement disorders, Rachel, I wonder if we may one day want to have one of these just for that.

Rachel Byrne:

Yeah, absolutely. I think, definitely, there's so much to unpack and unravel when it comes to the different types of cerebral palsy and how they affect everybody so differently and particularly when it comes to these movement patterns. But we have had that one sort of question coming around dystonia, but I thought before talking about dystonia, I think we probably just need to really briefly talk about the different types.

Dr. Nathan Rosenberg:

Sure, sure. Yes. So the common nomenclature here and it's medicine, so names change over time, and the way that we're shifting towards right now is usually what you'll have is three parts. There's a first part that describes how somebody moves, so some words you might see there are hypotonic, ataxic, athetoid, spastic. Greenie, I'm going to give you a little time on this one. Dystonic.

Rachel Byrne:

Oh, she can keep up. That's the best thing.

Dr. Nathan Rosenberg:

There we go. There was just a lot of finger spelling in that one, I think. So that's the first part where you have a description of the type of movement. The next part, and this one's done a little bit differently in different locations, is describing which limbs are involved. We are moving towards saying unilateral or bilateral meaning one side of the body or the other, although what you'll often hear is someone talking about the number of limbs. So you'll hear diplegic for both legs or hemiplegic for one side of the body or quadriplegic or tetraplegic, meaning all four limbs and I can't leave triplegic out now that I've mentioned all the other ones and I guess monoplegic too.

Dr. Nathan Rosenberg:

So there's that space for what limbs are involved, and then the last one is a standard and that's sort of cerebral palsy. So the most terms you'll hear, spastic, quadriplegic, cerebral palsy, or a common one. So that's the description there. And I think that nomenclature lets us drop a bill on the medical system and lets us categorize things for research sometimes, but I want to be clear that never at any point do we feel like that describes a child or an adult or a person that I don't feel that way as much as it is a descriptor that allows us to somewhat categorize.

Dr. Nathan Rosenberg:

So getting into the question about that first category of movement disorders, which I named a lot of them, I think that it's important with dystonia to differentiate it from spasticity. And the goal is to not take up the rest like another hour talking about the two of them, but I think the best way to describe spasticity is a movement, a limb needs to be moved for this. So you're moving a limb and it's the resistance you feel to that passive motion. And by definition, spasticity has an increased resistance the faster you go with a limb. So I use an arm as an example, so you move an arm slowly and you feel less resistance. You move an arm quickly and you feel more resistance.

Dr. Nathan Rosenberg:

So that's something we find by examining. We also see it show up when limbs move in people. Dystonia then to be differentiated from it is not a velocity-dependent movement, it's not dependent on the speed by which things move. And it's often characterized by movement of two muscle groups that shouldn't be moving at the same time, so they're moving against each other. So you'll see this way and this way and they kind of they're together so you end up with stiffness.

Dr. Nathan Rosenberg:

Conceptually, I often find this isn't always true, but I often find that dystonia is something that spreads. So we often find that dystonia increases when, say, somebody's trying to focus on doing something with one limb and then they end up with dystonia of the other three limbs and often their voice too, we see that a lot and it has more spreading effect, and this is me glossing over the subject that we could probably talk about for an hour.

Rachel Byrne:

So I think really though when we're thinking about it because this person asked, is there anything specific I need to know about because my child has been diagnosed with dystonia? And I think the really sort of piece that I've heard more importantly is you need to have individualized plans. So whether your child has spasticity or dystonia, whether you have ataxia, whatever it might be that it's affecting your movement, you need to have an individualized plan that's going to be specific to you.

Rachel Byrne:

And I think the other thing is then thinking about the goals that are delivered on that plan, I suppose. It's thinking more about, all right, how is it going to improve your functional abilities and how is it going to meet the goals that you want to achieve in life? And so I think hopefully that helps answer that person's question. If you've got more, please send them through.

Rachel Byrne:

Another piece, I think, is now really sort of interesting to get into is what are some of the specific types of treatments? And Dr. Glader, I'd like to start with you sort of thinking about some of the overarching things. I think we've sort of heard some words sort of getting thrown around like pharmacological or medicine and non-pieces. What are some of the common types of treatments that we see?

Dr. Laurie Glader:

Well, I think when we are first monitoring a child and perhaps is early in the process, we're really focusing predominantly on therapies, on stretching, both with therapists perhaps in the community or at school, but also having home stretching routines for families to carry out, that can be very helpful. We're thinking about making sure that a child is positioned as well as they possibly can be to be as functional as they can be. So maybe that means wearing braces and having other types of equipment to address the challenges that spasticity sort of throws their way.

Dr. Laurie Glader:

And so those things are present throughout a person's lifespan, that need for stretching, hopefully access to therapies perhaps by a caregiver or someone who is specially trained as a therapist and bracing. So those are, in a sense, the least invasive things that we do to address spasticity. And then if spasticity needs to be further managed, sometimes it's very focal, it's one part of the body that needs attention and a physician like Dr. Rosenberg can provide Botox injections which help to relax muscles in a certain part of the body, and then that gets re-administered every several months to six months or even longer depending on the child and the response.

Dr. Laurie Glader:

And then if the spasticity is more pervasive, meaning it affects the whole body, that's really when we start thinking about different medicines to help control the impact of the spasticity, and we go up very slowly on our dosing, medicines can be used in combination, and someone could be getting physical therapy and wearing braces and receiving periodic Botox and beyond medicine. All of these things can be combined in different ways. So there's a pretty big toolkit, if you will, of things that we can turn to, to help manage spasticity.

Rachel Byrne:

And we've actually just had a question around botulinum toxin and how or why that would be used, and Dr. Rosenberg, I'll ask you this question. When should it start? So say, for example, within the care plan team it's decided, what age do these usually sort of interventions start?

Dr. Nathan Rosenberg:

Good question. So I don't have a hard minimum, I'll start with that. So there's no too young for this type of intervention. But really, it's hard to speak of an intervention until you come back to what Garey's pointed out, and I think every answer that I give you is going to come back to shared decision making every single time. So the first thing we do is we sit down and we talk about what the problem is and then we look in the toolbox and say, "Okay, what's in our toolbox? And Botox is in the toolbox, it's in there."

Dr. Nathan Rosenberg:

And to say, "Okay, we have a functional goal that we'd like to achieve collectively in our trialogue and we'd like to do this together. Do we feel as if Botox will help achieve this goal?" And sometimes you don't know, so that's part of it. Oh, I apologize, so botulinum toxin, because there are many, so please erase, forget I ever said Botox.

Rachel Byrne:

No, no. This is sort of one of the things, right, is a lot of people aren't aware of it actually. Botulinum toxin is the name of the drug, I suppose, and I need advice.

Dr. Nathan Rosenberg:

And to get away from the language, because there are many botulinum toxins and we use many of them, that's good, botulinum toxins. So what we're thinking about when we use this and why do we use it is to enhance function. And so that's number one, we want to enhance function. So we say, okay, we are working on this functional goal. We think spasticity is getting in the way, we use it for spasticity.

Dr. Nathan Rosenberg:

We think spasticity of these individual muscles are getting in the way of a function happening. And so we would inject Botox into those muscles so there's would be less spasticity in those muscles.

Rachel Byrne:

Yeah. And I think it's a really important piece to think about going, "Okay, well this wouldn't just be standalone as well, obviously. Using any type of Botulinum toxin or any other medication for that matter, it isn't just solely use this and then hope for an outcome. There is so many other combinations of different things that would then be used too, cause we've had someone comment, actually, "My family was active with my physical therapy and activities, I did lots of biking, walking, swimming, and other sports growing up," which they're saying were really helpful to them. So thank you Rob for that comment.

Rachel Byrne:

But I think this is the important piece, back to that shared decision making and then thinking along the lines of going, okay, well what are, I suppose, the other components that really we need to be thinking about here too? So we've actually got a lot of questions coming in, so I'm going to start asking some of those questions because I want to make sure we can get through as many as possible because I do realize the time. And so this next one is, so someone's asking what are some of the latest physical therapy protocols and newest learnings around activity? And I'll put it out to any of the panelists to answer this question.

Dr. Garey Noritz:

So a few things on that. One is that we think it's really important that the therapy is activated by the child or by the person. And so moving somebody in the way that you want them to move is not as good as coaxing the person and teaching the person to move in the way that we want them to move. The other thing, and we have several different studies that our physical therapist are involved with here, is this concept of sort of bursts of intensive physical therapy.

Dr. Garey Noritz:

So rather than sort of almost being in a rut of, "Okay, well, we'll do PT once a week, OT once a week and we'll just keep doing that for years and years and years," is to sort of have maybe you do that, but then you have these bursts of intensive therapy where you'll go for six hours a week, 12 hours a week, 20 hours a week, something like that, to really make a big gain.

Dr. Garey Noritz:

And I think of this in terms of anybody who's trying to do some exercises. Yes, it's important to exercise and yes, it's important to move, but sometimes you really got to do it hard for a bit to get to that next level of, "I can lift this amount of weight," or, "I can do this function that I wasn't able to do before." The other very big thing has to do with constraint therapy which is really used in patients that have more trouble on one side than the other.

Dr. Garey Noritz:

And what constraint therapy is essentially is a constraint. One way or another, we keep you from using the good side and make you use your more affected less functional side to do tasks. And this is part of that neuroplasticity, helps the brain realize that these things can be done.

Rachel Byrne:

And so, yeah, I've got a question for you Nathan as well. Just going on that, you sort of mentioned strength training and we've mentioned spasticity and so we've had someone who's made a comment here and I'd love you to expand on this because sometimes it's something that people aren't aware of.

Rachel Byrne:

So Doug Bradley, so thank you for watching, who's a 50 year old male with CP and he's found lifting weights helps with his spasticity. So my question to you, Nathan, is strength training and weight training, how does that impact spasticity? Because sometimes I think people think that it would make that spasticity worse and make your muscles tight, but is that actually the case?

Dr. Nathan Rosenberg:

Great question, Mr. Bradley. Thanks for that question. No, you have to do a lot to talk me out of strength training in general for almost everything, and so this is another example of where strength training is really supportive, and I agree, for spasticity and I think what you've found is something I hope to share with others. Getting to the reasons why, so there are a few of them. One of them is if you happen to be strengthening muscles that overcome spasticity. So if it's the muscle that you're using to overcome another spastic muscle and it's stronger, you'll feel less impact of that spasticity.

Dr. Nathan Rosenberg:

I think another part of it is that spasticity is a movement pattern and so our brain learns to adjust to patterns that we have. And so if we're consistently doing an exercise program, our brain learns to better modulate spasticity. And Mr. Bradley here, I think you've nailed on a point that I think Garey also mentioned here, the concept of doing that exercise. So doing that exercise on your own. And Garey mentioned something about therapy dose, so the concept that we're talking a lot about, like what's new in therapy is measuring the effect of a therapy dose per se.

Dr. Nathan Rosenberg:

So we know that the folks that make the biggest gains in therapy are the ones that either do a ton of it, as Garey mentioned, or that do it periodically, but are doing their home exercise program every day or six days a week or, or something like that. So they're taking those gains and they're continuing with them. And so I think finding different ways in terms of the way that we're changing, we're trying to get better outcomes, finding different ways to make exercise a daily part of life to help change those patterns, and Mr. Bradley nailed it down right there, that making that part of life is where we see better functional outcomes.

Rachel Byrne:

And I think that actually goes to our next question which someone sort of asked about what about activity based therapy? So what are activities to establish some therapeutic routines in the community? So for example, are swimming lessons good? What are some inclusive or adaptive sports? Dr. Glader, do you want to just expand on that a little bit more?

Rachel Byrne:

So thinking about this sort of activity-based community-based therapy and what that looks like. It doesn't all have to be done in a hospital room, correct. When we think of therapy, I think taking that out it's long gone, hopefully.

Dr. Laurie Glader:

Yeah, no, I think that the idea of doing something that's community-based is excellent for multiple reasons. One is, as Dr. Noritz mentioned, therapy is most successful when it is driven by the participant as opposed to being done to them. And so if there's something that a child or an individual really wants to do, that may be more motivating than going to the PT office every single week to run through the same routines. And so that can play a critical role in being effective and successful.

Dr. Laurie Glader:

The other thing is how do you define success, and is it all about the musculoskeletal piece? And it gets back to that ICF framework that we discussed previously, and part of how we think about treating CP is how do we help individuals to participate in something that they really want to do? And if we can help people to achieve their goals in participation, then hopefully we've done some good and so there's a whole, oftentimes, social piece associated with participating in a community program.

Dr. Laurie Glader:

And there are all sorts of creative ways to get involved. There are many national and local programs specifically designed around adaptive sports and recreation, and those can be phenomenal. Everything from skiing to I've seen rock climbing walls with assistance, biking and what have you. But there are also ways to creatively participate in non-adaptive sports perhaps with a one to one friend or aid who can help to facilitate and to be there from a participations viewpoint. So there are lots of ways to crack this nut, if you will, and it's super important.

Rachel Byrne:

And we've had some wonderful recommendations actually coming in from our audience. So Katie Herman, who's a 34-year-old woman with CP has a green belt and karate, and so she really finds that karate helps with her reflexes and her balance which is wonderful. These are sorts of things that my background is a physical therapist so I'm hoping one day that really I become obsolete and far more exciting things happen rather than, say, in the physical therapy office, or that we are all out in the field, right, and we're all doing these things in community-based parts.

Rachel Byrne:

Another one, Jennifer Rose said her son was actually playing Buddy Ball before the pandemic and it was huge. Not only was he moving, but he made friends with others. So that's, as you said, this sort of social aspect, Laurie, and how important that is. And then Marina has mentioned basketball. She really loves playing basketball and the coordination and the different movement that you do with basketball. So I think all of these are sort of wonderful ideas.

Rachel Byrne:

Now, here's actually a very specific sort of question and I'll ask you this one, Dr. Rosenberg. And it's around constraint induced movement therapy which we sort of spoke about and obviously, Dr. Noritz, you spoke about it as well. What age does that usually start? And again, should they wait or how do you sort of look at those sorts of therapies as well? That it potentially more "a stronger intervention" if you want to call it that.

Dr. Nathan Rosenberg:

I'll come back to share decision making again as we get to that. I don't have a minimum or maximum age specifically for constraint induced movement therapy. It's a great question. I think that it's based on goals in that situation and so we're missing... Natalie Maitre was going to join us and I think she has some great studies, the Apple Study, among others specifically about constrained-induced movement therapy in pretty young kids. And I think it's important to say that there certainly is not a minimum age. We would like that child to be using that other limb a good amount and sitting up, but beyond that, there isn't a minimum age there.

Dr. Nathan Rosenberg:

But I've also had families come to me and say, "Hey." Families, children, young adults, adolescents, different age groups to say, "Hey, am I too old for constraint-induced movement therapy?" And I don't think I've ever said yes. I think that's a question where you can say, "I don't think there's a too old." In the same way, I don't think that there's an ideal age.

Rachel Byrne:

And so I think particularly around the Apple Study, and I'm quite familiar with that. And I think this is particularly for this mother, she's got a 19 month old son. And I think when we're sort of talking about those different things, it's not also just standalone. So that sort of particular study that's looking at constraint-induced movement therapy, it's also looking at sensory play. It's also looking at parent intervention. It's this combination, which again, comes back to the shared decision making.

Rachel Byrne:

So what are all the different components that need to be done to help with the end outcome being more functional use of that hand, whether it be singularly or whether it be doing activities by manually and doing those activities together?

Rachel Byrne:

So there's also another question and this sort of comes around to the comorbidities and Dr. Noritz, I'll ask you around with this question. And so someone sort of brought up, I know we sort of spoke about some of the other comorbidities like epilepsy and things like that. Someone actually brought up fainting and sort whether that was common. And I don't know whether you have anything to add to that.

Dr. Garey Noritz:

I would say we see fainting in people with CP at least as often as we see fainting in people without CP, which is to say it's pretty common, particularly in adolescents. The vast majority of the time, both in people with CP and without CP, the causes are fairly benign. It has a lot to do with something called a vasovagal reaction where a person gets sweaty and dizzy and lightheaded and may need to sit down and there are different things we can do. There are dangerous fainting kinds of things which are often more cardiac in nature or could be some kind of a seizure.

Dr. Garey Noritz:

But it's the kind of thing that a pediatrician or family medicine doctor that takes care of adolescents knows how to approach. Syncope is our medical word for fainting, and the fact that a person with CP has an injury to their brain and now they're fainting may be related, but it also well may not be.

Rachel Byrne:

Mm-hmm (affirmative). And I think that's a great point too because a lot of the time, and I think this is where having a really good care team around you is so important, reasons for certain things may have nothing to do with cerebral palsy and I think that's an important sort of piece to make, we talk about the increased likelihood of say even pain. So spasticity could cause pain, but it could be something else as well and I think that's where it's always important to have these conversations with your doctor, explaining things not just presuming, "Oh, well, it's part of my CP."

Rachel Byrne:

And I think if something new has come up or if something different is happening that you haven't spoken to your doctor about before, I think it's always really important to have these conversations and ask them is this something that I should be concerned about? Is there something that I can do about it?

Dr. Garey Noritz:

Yeah. I mean, and pain specifically we know is very prevalent in people with CP particularly as they get older. And just because it's all often associated with CP or caused by the manifestations of CP doesn't mean it's okay.

Rachel Byrne:

Yeah.

Dr. Garey Noritz:

We know that we ought to be looking for pain in our patients and we know that we ought to be trying to remove the source of the pain and/or treat the pain. And so just to name a few things, a lot of patients with CP, particularly who have trouble with mobility, are at risk for kidney stones and for gallstones. And those can be very painful. And if a person has difficulty communicating, they may not be to tell their family or the doctor the symptoms that would lead us to think of kidney stones or gallstones or dental problems or a broken bone or any of the other things that we do see, I would say, more commonly in people with CP.

Dr. Garey Noritz:

But we shouldn't just accept that oh, well, a person with CP is going to have pain, that's just the hand they were dealt. We have things we can do and we have things that we really ought to be working on to try to mitigate any pain that a person has.

Rachel Byrne:

And I think it sort of comes back to this whole piece around that early question on finding your clinician, finding your team and who specializes particularly in cerebral palsy. And I know just for those people talking to your pediatrician and asking them who they know, most likely, they're going to have people that you could get referred to if need and otherwise, again, the American academy of cerebral palsy and developmental medicine is really a group of clinicians, physicians, therapists, who really are focused on cerebral palsy and other developmental disabilities.

Rachel Byrne:

So on their website, you can actually try to find a local clinician in your area which just if you have some of these specific questions and you don't find that you're close to somewhere like Nationwide Children's Hospital, that can be a really helpful tool to help finding people in your local area. Now we are running out of time, but we've actually just got one last question and I really do want to ask this question cause it's about video games. So obvious during COVID, we've all a lot of our time in front of the computer and so what about playing video games? Who wants to take on this question? Whether it's good. All right. Mr. Rosenberg, it's all you.

Dr. Nathan Rosenberg:

Well, I mean, I don't want to step on your toes, Dr. Glader and Dr. Noritz.

Dr. Garey Noritz:

I think of three of us, you play the most video games.

Dr. Laurie Glader:

Step away, step away.

Dr. Nathan Rosenberg:

I will say that my children do fit that age group, but my opinion on video games, it needs to be twofold. So there's the first part, I'm going to say the bad part first and the good part second. So the bad, there's certainly recommendations from American Academy of Pediatrics that suggest that they should be limited and that's for sure. There's the bad part. And here's the good part is that video games are empowering and can help folks work on their function, and they are a large aspect of participation too.

Dr. Nathan Rosenberg:

And so especially when you stick on the headphones and you're talking to somebody while you're collaborating with them on something, it allows for a level of competitiveness with peers that socially, that has a great role. And so there's that part, there's the social aspect of video games which video games have changed that way that they are and a lot of them are almost purely social and less get your dopamine rush from the game sort of thing.

Dr. Nathan Rosenberg:

Then there's the other aspect of folks who if video games are played with their hands, that if they have a goal that's dexterity based, we find that they can often work to improve their dexterity because they need to access their video game controller to make it happen. And so I consider that practice and there certainly should still be limits within that thing but when we're talking about dose and therapy dose, if you have something you can do at home, and you're trying to en engage both limbs, both of your upper limbs and a video game controller demands that, there is value in engage with that a few days a week or a little bit more.

Dr. Nathan Rosenberg:

And if we want to get deeper into the video game world, we could talk about adaptive controllers too. So for those folks, it's less of a physical therapeutic thing for their hands and more so a, "I want to engage socially with my peers and I would love to do it in a competitive fashion with my stronger limb," and the tech out there is fantastic.

Rachel Byrne:

Yeah, we were fortunate enough, the foundation was fortunate enough to actually work with Microsoft on their Xbox adaptive controller and just the accessibility that that allows for and the gaming pieces. So if anyone's really into gaming and you want to see some setups, if you actually start Googling Xbox Adaptive Controller, and some setups, they are phenomenal. There are absolutely some hardcore gamers out there who have the most incredible setups that I've ever seen and who are at the top of the game, actually, if you want to talk about it that way, as far as any of them in those competitions that happen.

Rachel Byrne:

But I'm just going to see if there's any other questions, otherwise... Okay, it's more of a comment so I think we can wait. "So my grandson has cerebral palsy and his quadriplegic, but he follows games and understands them amazingly. He even gets into golf. He moves a lot, even though he cannot use a controller, he gets excited to watch his cousin go through the games."

Rachel Byrne:

And so, Cynthia, I think that's a great sort of piece, but there may be actual opportunities for him with these adaptive controllers, with some other pieces that he could also participate as well. So it's always worth sort of exploring some of the latest tech that's out there, and that's even for people who potentially do have quadriplegia and the access would be trickier.

Rachel Byrne:

So on that note, I think we've had an absolutely incredible group join us from Nationwide Children's Hospital today. I just can't thank you all enough for bringing your ideas years, your thoughts, your wisdom, around all these different pieces, and obviously our audience who has really been engaged in this conversation, I'm just so thankful that we can continue to have these. So I just wanted to say thank you to Dr. Glader, Dr. Noritz, and Dr. Rosenberg for joining us today.

Dr. Garey Noritz:

It was fun. Thank you. And thanks so much, Greenie, for translating for us.

Rachel Byrne:

Absolutely. As I said, we are so fortunate to have Greenie join us for this and offer signing during these Townhalls. And again, I'll just say one more time, thank you to Ipsen Biopharmaceuticals who supported these town halls. And we look forward to actually bringing you more of these coming through into the summer. All right. Thank you, everybody.

Dr. Laurie Glader:

Thank you.

Rachel Byrne:

Bye.

Dr. Garey Noritz:

Bye-bye.