A multi-disciplinary panel with experts from Rady Children's Hospital, Southern Family CP Center, and UC San Diego School of Medicine discussing the newest updates in care of children with Cerebral Palsy.
Rachel Byrne:
Hi everybody, and welcome to townhall two of our new horizons for cerebral palsy town hall series. My name is Rachel Byrne. I'm the executive director at the Cerebral Palsy Foundation, and we are so excited to be bringing you this series. And I just want to say that this series has been made possible with the support of Ipsen biopharmaceuticals and tonight, we are joined by the fabulous team from Rady Children's Hospital in San Diego. And I'll start by introducing tonight's panelists. First up is Dr. Hank Chambers. Dr. Chambers is a pediatric orthopedic surgeon and director of the cerebral palsy research at Rady Children's Hospital, as well as the director of the motion analysis lab and the 360 sports medicine program. Thank you for joining us tonight Dr. Chambers.
Dr. Hank Chambers:
You're welcome. Thanks for having me Rachel.
Rachel Byrne:
Of course, next up is Dr. Phoebe Scott-Wyard who is a pediatrician and physical medicine and rehabilitation specialist at Rady Children's Hospital. Thank you so much for being here.
Dr. Phoebe Scott-Wyard:
Excited to be here.
Rachel Byrne:
Dr. Kyle Ryan is the director of adult spasticity rehabilitation program of the Southern Family Center Cerebral Palsy at Rady Children's Hospital, and specializes in non-operative spasticity management in patients with cerebral palsy and other neuromuscular conditions. Welcome.
Dr. Kyle Ryan:
Thanks Rachel.
Rachel Byrne:
And we have Carolina Schaber, who is the clinical orthopedic team care coordinator for Dr. Chambers. So, thank you so much for joining us this evening.
Carolina Schaber:
Thank you very much Rachel.
Rachel Byrne:
And of course, we have Greenie who is our sign language interpreter and who will be joining us throughout the call today. Really, the purpose of tonight's discussion is to help all of you understand cerebral palsy in a greater context and think about the process around diagnosis, the importance of continued research, and the ways that you can support your child with CP, or yourself if you have CP at home and in your community. Please if you have any questions, put them in the comments section, and we will make sure to answer them as we go through with the panel this evening. First up, Dr. Chambers I'm actually going to start with you and ask you a question. If we're just thinking about tonight's topic, what is cerebral palsy and how is cerebral palsy diagnosed?
Dr. Hank Chambers:
Yeah, obviously a great question. That's what we're talking about today. Cerebral palsy is not a disease. Cerebral palsy is a... I am so sorry.
Rachel Byrne:
And just to remind everyone like at the movie, please turn your phone onto silent. That will give you a pass.
Dr. Hank Chambers:
That was actually my computer who did that. I'm sorry. Cerebral palsy is really a group of disorders and really, we should call them the cerebral palsies because it's something that goes all the way from a child who has with a little bit of problems walking to someone who's completely totally involved, and is in a wheelchair. It's a group of disorders. When we make the diagnosis, it's often related to some brain injury. And it can be a brain injury that happens at birth, or usually it's a developmental problem of the brain during the prenatal period, or the immediate postnatal period. By our definition, if anything that happens to the brain that goes on up until about the age of three.
Dr. Hank Chambers:
So, that's what's cerebral palsies are, and I know we're going to talk a lot about the different types of cerebral palsy tonight.
Rachel Byrne:
Yeah, absolutely. That's actually a great segue actually into the next question, and I'll put this question to Dr. Ryan. When we're thinking about the different types of cerebral palsy and what they are, can you explain those a little bit for us?
Dr. Kyle Ryan:
Yeah, so the different types of cerebral palsy, we're thinking about first off possibly what is the distribution of what motor changes are brought about. In some patients, it may be that they have changes in both of their legs. We might describe that as a diplegic pattern. In some patients, their one arm and one leg on a single side would be more affected than the other side, and we would describe that as a hemiplegic pattern. And then some patients, all limbs would be involved potentially, and that would be classified as a quadriplegic or tetraplegic form of cerebral palsy. So, that's where the motor changes happen. And then we also think about in cerebral palsy, there's different things that can happen in terms of changes to movement patterns.
Dr. Kyle Ryan:
We talk about positive motor signs, or things that you would possibly be able to see, and then negative motor signs which are things that are a little bit harder to see, but the most common form of change with the motor system is a spastic form. And we'll talk more about that later, but then there's also dyskinetic and ataxic forms. So, that's a little bit of a description of how movement is affected, and then we'll talk also later about how do those changes affect function. There's different ways that we describe function with different scales. There's a lot of different ways to describe it, and it's been discussed over time, but typically, we talk about where the changes happen and then what are the main forms of the changes.
Rachel Byrne:
And I think just from looking at the definition that was just given and the explanation, no one individual would really present the same. There are so many different, as you said Dr. Chambers, the cerebral palsies. This isn't just a one size fits all disease. Dr. Phoebe when we're thinking about it and Dr. Ryan spoke about a little bit, but when we're talking about the different motor types, so spasticity, ataxia, dyskinesia, can you just explain those in a little bit more detail for us?
Dr. Phoebe Scott-Wyard:
Sure. So, people who have the spastic type of cerebral palsy, typically their muscles are a lot tighter. And when you try to stretch the muscle, there's a catch, or the muscle doesn't give all the way and you're unable to stretch them completely. The other subtypes describe the use of the muscles and your ability to control the muscle. Ataxic form typically means that the children are unable to do that fine movement and control of their movements. And then when we talk about dystonia, a lot of times those children or people will have tightness in their muscles that almost looks like a posturing, where the muscles form. When they're trying to use them, they contract in one direction or another, not exactly in the way that they want them to.
Dr. Phoebe Scott-Wyard:
Then there's also low tone individuals that have what we call hypotonia, where their muscles are very weak, and they're unable to really use them in a coordinated manner. Like Dr. Ryan was saying, it's a wide variety of individuals. And you can have some people with cerebral palsy who have a little bit of all of those things, or have some low tone maybe in their trunk. So, they have a hard time sitting up, but their arms and their legs have a lot of spasticity and are very tight. It takes a coordinated effort from the team to treat those different things in different ways.
Rachel Byrne:
I think that actually brings up a wonderful point. You just mentioned the team and talking about the team. And Carolina, you are the care coordinator and obviously looking at the very different members of a team, what should someone expect from their child's team and who would be on it?
Carolina Schaber:
I think in regards to expecting, what do you expect from the team, I think it's a team approach, working with from that first phone call that comes in. And in our clinic, it comes in to me is trying to understand everything that's going on and looking from top to bottom of what is that patient looking for. And then deciding what people or what group of physicians does that family need to see, and then putting in that team approach. And for example today, when we met with patients, I was working with Dr. Ryan today on a case, and we all go in there together and talk about the case. And then work together with the family to come up with a plan, and then moving forward with that plan as the team, and making sure everybody is involved.
Rachel Byrne:
I think you bring up a really wonderful point in thinking that this team isn't just for doctors and therapists and physicians, it's also for the family. Their family is such a huge part of this team, and their involvement really should be I suppose at the forefront from the very beginning.
Carolina Schaber:
Yes, and we encourage them to come and bring their list to questions. And I try to put together that information for our team for that first visit is really understanding who is that patient, who is that family coming in the door, who have they seen in the past, and trying to make sure that we get the picture and move it forward with our entire team. And that's just not us at our orthopedic surgeon with Dr. Chambers and with the rehab team, with Dr. Ryan and Dr. Phoebe, but that's everybody because some of our patients come from... they're moving here to San Diego, and that team may include genetics and neurology and GI and everybody. So, how do you bring that whole team together, and that we all communicate as a group and make sure that the patients and the family's needs are met.
Rachel Byrne:
I'd like to ask Dr. Chambers this next question. GI, neurologist were just mentioned. What would make up the core team for a family if they were looking to try and think about who do I need on my core team?
Dr. Hank Chambers:
Yeah, in most major centers, I think the core team should be run by our physiatrist, the physical medicine and rehab doctors. They can see the entire picture of from top to bottom as their movement disorder, and then all the other things that we talked about, getting them to the GI doctors because the patient might have reflux. So, we can also see the neurologists who will see if they have take care of their epilepsy or their [inaudible 00:10:52] disorder, or also some other medical disorders. As Carolina mentioned that we have people that have see our geneticists, because there are several disorders that look just like cerebral palsy, or maybe could be considered cerebral palsy, but are really genetic disorders that can maybe even be treated.
Dr. Hank Chambers:
And I think the other real core of our team are our therapists, our physical and occupational and speech therapists. It's been really hard for them during this COVID period because it's lost a lot of this, and I think it's really hurt our team. That is the core and of course, probably the least important is the orthopedic surgeon that would get that. We get to the point where when you need to have surgery, that means a lot of the other things have been exhausted, the other treatments. I think leaders of our team are our physical medicine rehab doctors and at our center, that's who really runs the claims.
Rachel Byrne:
I'll throw this next question to Dr. Phoebe then. When we're thinking about physical and medicine rehabilitation doctors, some people may not have heard of the specialty. What is it that you do?
Dr. Phoebe Scott-Wyard:
I would say a lot of people have never heard of those specialty. My parents even sometimes have a problem explaining what it is I do. And especially when we talk about pediatric rehabilitation physicians, there's only about 300 of us in the United States. So, there's not that many, there's not enough for sure. Basically, I like to think of rehab medicine as like if you did the Venn diagram of neurology and orthopedics, we're in the middle where things overlap. So, we don't do surgery like Dr. Chambers, but we do a lot of procedures to help control and manage tight muscles like spastic muscles and contractures and things. So, we can hopefully help either delay or prevent surgery in the future.
Dr. Phoebe Scott-Wyard:
We are typically the team that coordinates therapies, equipment, so things like wheelchairs or braces, prosthetics, things like that. And also, monitoring the patients for when they might need to see an orthopedic surgeon. So monitoring, the case of cerebral palsy specifically, their hips and monitoring making sure that they don't have hip dysplasia or subluxation, checking for contractures in their extremity, checking for scoliosis. So, screening for all the things that might need higher level, or different types of care or surgical intervention. But especially for children and adults who have physical disabilities, we act as their team captain as it were to help coordinate with their other needs.
Rachel Byrne:
Dr. Ryan, you had expertise as an adult physiatrist, as well as obviously now being at Rady Children's Hospital. Can you just dive into a little maybe the differences that you would see in an adult compared to a child?
Dr. Kyle Ryan:
Dr. Chambers already mentioned, some of this is that a lot of what we do with patients and the younger group of patients with CP is to try to... and I think pediatric doctors in general have a lot more knowledge because they see patients grow and change throughout their young lives. As the patients reach into the later stages of their teenage years and into adulthood, a lot of the maturation changes in terms of the muscles and bones may have already occurred. From an adult standpoint, a lot of the patients for example with spasticity that I'm used to seeing their particular pattern of how their muscles and bones are aligned have been established that way for some time.
Dr. Kyle Ryan:
So, it's really exciting for me to now be in the position where I get to work with all these amazing pediatric doctors that are going to help me learn even more. With adults, we have a lot of the same tools that are in the tool kit, and a lot of them are used in similar ways.
Rachel Byrne:
And I think it's just really important when we're looking obviously at a child, we're always thinking about what's happening across the lifespan. Dr. Chambers when we're thinking about actual specific interventions that can happen, what are some of I suppose the initial common interventions that you might see and then some of the things that could maybe be done down the track as it progresses?
Dr. Hank Chambers:
Yeah, it's interesting to look at a child with cerebral palsy and we'll say a typical child, but a child that has cerebral palsy that is maybe where the lower extremities are more involved in the upper extremities, the so-called diplegic child. Say someone who's walking, so we have a series of things to do for those ambulatory children. And the first five or six years of their life, we're doing physical therapy, occupational therapy, using different braces, using spasticity management with oral medications with botulinum toxins, stretching calcium. Everything we can do to delay surgery. And then as these kids become seven, eight, nine years old, that's the time for us to do surgery.
Dr. Hank Chambers:
And the surgeries we do are things like lengthening tendons, transferring tendons to have some function that if it does one thing wrong with tendon, can do something right by moving that tendon. We cut bones to rotate them because a lot of times, the kids rotate with their feet inward. And we cut the bones to rotate them outward. Importantly, we try to keep the hips and the joint. And the hips start coming out in a young age. We do have surgery where we cut the bones and put the hips back and joint. And we try to do all of this surgery before the age of 12 or 12 to 15 because that's when they have the best outcomes. I've had an adult clinic since 1995, and so I've seen about 5000 adults through these last 25 years.
Dr. Hank Chambers:
And I've been able to see those patients that were just aware in this philosophy of taking care of them, getting the surgery done early, continuing the follow-up with the physical medicine and rehab, continuing to manage the spasticity for dystonia. And then when they get older, the orthopedic surgery is not as important. As they get older, the outcomes aren't as good. Once the hips are out when we're 25, we don't have a good way to treat those. So, we want to catch the kids early because when they come adults, we want to manage their spasticity, the dystonia, their seating systems, the physical therapy, keeping them walking if they're walking, and making them comfortable sitters if they're not.
Dr. Hank Chambers:
So, it's a long answer, but it's a really complicated problem. So, our goal is early on, up to the age six or seven, managing with all the things that I said, the non-operative treatment. Six to 12, six to 12, that's when we can do a surgery that'll make things better. And then as they get older, using things like botulinum toxins and intrathecal baclofen pump, and things like that to really manage their tone.
Rachel Byrne:
So, I think it brings up a good point. When we look at the management of tone and even just thinking about this broader context, what should our family know? And Dr. Phoebe, I'll ask you this question. What should a family know about intensive therapy, or do you need intensive therapy associated with something like botulinum toxin?
Dr. Phoebe Scott-Wyard:
Yeah, and I think that's a complicated question right now, especially because of what's going on with a global pandemic. I would say the majority of our patients are not getting therapy who were getting therapy before, or what they're getting is through telehealth which is in some cases, less than ideal. And for some families, that works great and they feel safer that way. It's been a good option, but in general, whenever we're thinking of doing an intervention, we really want to piggyback off of that with therapy because there is no magic. I know I lost my magic wand. I don't have one. I want one, but I don't have a magic wand to make patients have zero spasticity and suddenly get stronger.
Dr. Phoebe Scott-Wyard:
So, we can peel away the spasticity with interventions, such as botulinum toxin injections with alcohol blocks, or with a baclofen pump or with oral medications, such as baclofen for example, or we can help contractures by lengthening tendons through orthopedic surgeries. But if you don't piggyback off of that with therapy to make the opposing muscles stronger, the spasticity is always there. I mean I think it's important to think of cerebral palsy as a brain injury. It's not a muscle problem, right? When we treat just the muscles and the bones, the brain injury is still there, that patterning is still there. And you can't 100% get rid of that.
Dr. Phoebe Scott-Wyard:
It's important that we're using therapy to help strengthen and get rid of some of the weakness that is opposite to spasticity. Because wherever there's spasticity, there's an opposite muscle that has been losing the tug of war back and forth. If you don't re-strengthen the other side, the other aspect of it, children will end up getting tighter and have the same problem over again.
Rachel Byrne:
It's almost like a myth that needs to be busted, is that just because there is spasticity in a muscle, does not mean that the child is wrong. And that there is this underlying weakness that really exists, that probably is quite global and something really that it needs to be a priority when we're thinking about interventions. Dr. Ryan, this is a question for you and it's thinking okay, so we know that strengthening muscles and doing exercises are important. Can that lead to long-term changes? Dr. Phoebe had mentioned in a little bit when we're thinking about this is a brain injury, but can these strengthening exercises help with long-term outcomes?
Dr. Kyle Ryan:
Yeah, it's a really good question, and there's two branches of thought that I have. One is talk about some a concept called neuroplasticity where early on in a developing human, the brain is just growing and growing and just soaking everything up like a sponge and forming new connections, and exercise and training, and what they describe as enriched environments. And the younger patient population may have implications for improving potentially some aspects of someone's life. It might not necessarily change how their motor function is, but targeting someone's brain when it's just growing and excited to learn is a great time for those types of interventions.
Dr. Kyle Ryan:
When we're thinking about an older population, we know that 60% of people with cerebral palsy are over the age of 15, and many have life expectancies that are reaching those of individuals that aren't affected with CP. And just in general, individuals with developmental disabilities are more likely to have a sedentary lifestyle, and with that comes certain chronic health conditions. And it can turn into this cycle where there's what we call deep conditioning, where you aren't able to do as much, and that might cause a decline in your physical activity and lead to further decline. Being able to implement aerobic exercise, even strengthening exercise is really important in the long run, and I think we're learning more and more about that.
Dr. Kyle Ryan:
One of my mentors where I trained said to everyone, "We're all getting weaker. We're all losing our balance, and so this is something that we have to do, is we have to exercise and stretch and train our balance systems."
Rachel Byrne:
Dr. Chambers, I think this is a really interesting question that I'd like to ask you, and it's thinking about cerebral palsy. Is it a condition that gets worse, or is it something that stays the same?
Dr. Hank Chambers:
So, almost by definition, the brain injury doesn't get work. Whatever caused the problem in the first place doesn't progress. There may be some neurological things that do progress, such as epilepsy in later life, early Parkinson's disease, but the lesion in the brain pretty much stays the same. That is the definition of cerebral palsy, but almost everything else can get worse. Spasticity can get worse, dystonia can get worse. And for just working with growth, the muscles can get older, the bones can change shape because of the forces going across the muscles. Joints can be dislocated, either the hip or the knee or the bones of the foot. Yes, it does progress in that way, but not the real lesion in the brain. But movement borders can get worse and then so can musculoskeletal problem.
Rachel Byrne:
If we're thinking along those lines and Carolina, I'm going to ask you this question, how can families help? I think particularly sometimes, it can feel really daunting to be part of a team where there's so much expert knowledge, but how can families really help to improve treatment outcomes for their children?
Carolina Schaber:
I think it's again back to that point of just communication and team approach, is really just asking questions, understanding and just trying things, and see what happens. And then working with your team and figuring out what are the expectations, what do we do moving forward. And if you have questions, ask them, ask them, ask them and work with your team to figure out what is the next best step.
Rachel Byrne:
Yeah, that's wonderful advice. And I think it's building up that confidence and understanding that you will be your child's best advocate, and you will know them and you are the expert in a way because of all the knowledge that you'll have and what you can move to the table. Now, Dr. Chambers when we think about advocacy and what that looks like, what's the age when a child's to start making some of these decisions, or being part of the discussion?
Dr. Hank Chambers:
Obviously, every child is different. We have some five year olds that have pretty strong opinions about what they want to do, and then there are people who are in their 30s that want their parent to make all the decisions. And I think like everything else and everything we do in medicine, it's a shared decision I think. And I try to get our children involved as soon as possible. When we're talking about doing botulinum toxin, when we're talking about bracing, particularly bracing, kids don't like being in braces. Anything that makes a child look different, they're not happy. But when we talk about surgery, I always make sure they're on board before we go.
Dr. Hank Chambers:
Though I think the worst outcomes you can possibly have is when the parents and the doctors come together and force a child to do something. So, I think we all should work together and make sure that the child and the adult is comfortable with the treatment that we're doing. As soon as they show interest, then that's when we get them involved.
Rachel Byrne:
Yeah, I think it's such a potentially daunting piece. I have a 4-year-old daughter, so I completely understand when they decide what they want and when they want it, that's for sure, but I think it's such wonderful advice to try to get children involved as young as possible, because learning those advocacy skills and learning to have that ability is so important. Now, we're going to go to a few other different questions that have come actually through and one of them is, and maybe Dr. Phoebe you can answer this question. What are some of the benefits of adaptive sports and exercise for children with CP?
Dr. Phoebe Scott-Wyard:
Well, the...
Rachel Byrne:
And other new activities that you would recommend? I know we've spoken about benefit for a little bit, but what are some of the really good activities that you would recommend?
Dr. Phoebe Scott-Wyard:
Honestly, I would say any activity. So, I think one of the things that is really helpful is to introduce children to all kinds of activities. And especially when you're talking about the world of adaptive sports, there are some children that have cerebral palsy that might not need any adaptations, and there are some that might need a lot of adaptations, but I think finding resources in your area and introducing them to lots of different types of adaptive sport I think is the best way, because then they'll really find what it is they're excited about. And in some cases, you might be limited to what's available in your area.
Dr. Phoebe Scott-Wyard:
I know in the US, one of the best repositories is the Challenged Athletes Foundation, challengedathletes.org. They have a listing by state. So, you can look up and find an adaptive sports organization in your area. And if there isn't one, start one. It only pokes one person. A lot of times if you go to that listing and maybe there's a sport your child has expressed an interest in, you can contact another organization in another state and say, "Hey, how did you get started? How can I get my child to try this out? What are the options out there? What kind of equipment are we going to need?"
Dr. Phoebe Scott-Wyard:
And they'll help because that's where a lot of these adaptive sports organizations have started with grassroots organizations, with parents that said, "My kid needs to have access to sport, it's not fair and have really pushed for that," but I think we know sports helps children in general with their self-esteem, with the feeling of being included and being part of a team. Obviously, there are amazing physical benefits of exercise and activity which we would all expound. Our patients that are more active definitely stay healthier longer, and need less surgery.
Dr. Phoebe Scott-Wyard:
So, I think it's really important to try different things and find something that speaks to that child, because every child and every person is going to have a different thing that they're passionate about. I think trying a variety of things is really helpful.
Rachel Byrne:
Yeah, definitely. And I'll throw this question out and anyone can answer it. So, I apologize, not quite sure who will answer this one. But when we're talking about physical activities, are there roles with going down a professional sporting path though?
Dr. Hank Chambers:
Maybe Carolina can answer that.
Dr. Phoebe Scott-Wyard:
Yeah, I think Carolina would be.
Carolina Schaber:
I'm not only Dr. Chambers' care coordinator, but I'm a parent of a 23-year-old daughter who has spastic diplegia cerebral palsy and was involved in the professional Paralympic sport world. It's wonderful and no matter if somebody would have told me when she was nine years old and sitting in the office with Dr. Chambers, and being diagnosed with cerebral palsy and 14 years later, I would make that statement, I would have said, "Wow, really?" But with any child, professional to recreational sport, it is really about inclusion and just having fun.
Carolina Schaber:
And that's the advice that I've gotten from so many people, is it's got to be fun and try... there's so much to try and whether you take it from a recreational level, all the way to that point of Paralympics and being involved in the US team, the world is yours and just try everything. And you never know with any child and with any adult, what's really going to stick, I can't tell you, but enjoy your passion and you never know where it will lead you. And I've had patients that have told me, "I can't, I won't, I won't try," and the parents are like, "Well, they can't do that." I'm like, "I mean my daughter taught me the best words is if I can do this, I can do anything.
Carolina Schaber:
If I can put on a pair of boots and I can put on my click on my skis and be able to go with my family down the hill, I can do anything." And it took her to so many different sports and rock climbing and surfing, and pulled her into the music world and theater and things like that. So, you just never know and I always tell my parents to try and can't and won't. My daughters told me that mom you got to get rid of those words every once in a while, and there is so much... Dr. Phoebe and I talked to at many conferences about what are the benefits of adaptive sports, it's endless and so just drive.
Dr. Hank Chambers:
Rachel, may I say something?
Rachel Byrne:
Absolutely.
Dr. Hank Chambers:
When we first started this conversation tonight, we talked about body function and body structures, bones and joints, and the function of movement. And there's a there's a thing called the World Health Organization International Classification of Function, and those of us in the field know this, but it just makes so much sense for everybody else. Once again, the doctors and the therapists, we work on body structures and functions which is an important part of any disability, but really, the goal of us taking care of that doing those things is for activity and participation, which is the central part of this World Health Organization.
Dr. Hank Chambers:
So, whatever we can do to get rid of barriers, that's body structures and function, if it's putting ramp in so that someone can get into a building to go to the gymnasium, if it's getting different equipment, so someone can participate in sports, or to make work accommodations people can have a job, but our whole goal of everything we do as doctors and particularly the rehab doctor is to get people to participate and to be active. And if we keep that in the back of our mind for everything that we do, then I think we're going to be successful.
Carolina Schaber:
Well, and Dr. Chambers if you don't mind, I'd like to build on that a little bit is in regards to we talked and I've heard from everybody on this team of therapy. And especially in this time where telehealth and things, is what can we do to make therapy fun. I've had multiple parents say, "Well, who's the best therapist? What's the best therapy? Where should I be going?" And a lot of times, you know what... I mean my daughter used to say, "Mom, it's hard to go to therapy two days a week. What else can I do?" So, how could we make it fun?
Carolina Schaber:
It was sometimes as easy as taking mouse pads, computer mouse pads and putting them down the hallway, and putting music on to a beat and jumping down the hallway, because that was fun to her and included her sister, or we'd go out and just swim in the pool, or get basketball and shoot basketballs with the kids down the street. I mean think about basketball. It's running, it's moving, every sport has a movement. And how can we make it not only that two days a week of therapy, but how can we make it fun every day, with any kid?
Rachel Byrne:
Carolina, that brings up such a great point. My background is I'm a physical therapist, and I would always say the same thing. I would be like, "Okay. Well, we could do therapy and we could do it in a hospital room, or we could go outside. And we could do it somewhere fun, and we could do it doing things that that child loved." And that was always my first question, what is the one thing that they love or what's the one thing that they would love to try to do. And we very often growing up in Australia, I would take patients to the beach and we would try surfing. And we would do these things that were out of the box of traditional therapy, but definitely the outcomes that we would get would be far greater, because that child was so engaged and having so much fun.
Dr. Hank Chambers:
So true.
Carolina Schaber:
So true, so true. And I always tell parents that people ask me, "Well, where's the best therapy? Where is it?" And I go, "Listen closely, playground. Just go to the playground, grab a tennis racquet, go just swing on the swing. Think of the movement of a swing, think of the movement of a slide, the texture of the sand. All those things are things that you can also get in therapy, but you're doing it as a whole family unit and having fun at the same time." Like you say, just go out and get a surfboard and go surfing for a day. I mean there's just so much out there, go camping, go hiking. It's endless of what's out there.
Dr. Hank Chambers:
[Crosstalk 00:37:03] we still think therapists are important though, just saying.
Carolina Schaber:
Yes, very, very important [crosstalk 00:37:10]. How do you do home exercise at home, but have fun doing it?
Rachel Byrne:
Yeah, absolutely. If my profession no longer existed because no one needed us, that would be a great thing at the end of the day. However, you just gave some really wonderful advice. I actually want to ask all the other panelists. If you could give one piece of advice, what would you give a family? Dr. Chambers will go with you first.
Dr. Hank Chambers:
Yeah, this is a tough one. I have a 30-year-old son who has cerebral palsy. So, I've been through the whole thing, from problems at birth, all the way to kidney stones a couple years ago. I think there really is nothing more than just loving your child and thinking of what the best works for the child. And I'll tell you, it's really hard to be a parent because you're going to get so many different opinions. And it's even worse now because of the internet and Facebook and everybody has these different opinions. And it's really hard, you just have to follow your heart and find it. We've talked about this team. You have to find a team that you trust. Do you trust our opinion?
Dr. Hank Chambers:
Do you trust that we keep up on what's the most modern things out there? Are we going to send where you can we get some very expensive therapy that really has any proof? Well, I think first of all, just what I expect, the big thing is just being a parent, love your child and that's really the best advice I can give you.
Rachel Byrne:
That's pretty wonderful advice. Dr. Phoebe.
Dr. Phoebe Scott-Wyard:
I think for me, there are a number of times where I have to convince parents that their child can do something, that they've used that C word. They've said, "Oh, they can't, they can't, they're not, no." I think for me, the best advice I could give would be push your child to be able to do as much as possible independently, because starting at the youngest age as possible because those are the children that I see as they're growing up, they're more independent, they're self-starters, they're resilient, they're not afraid to try. I feel like we love our children, right? We want to put them in a bubble and protect them, and keep them from harm and keep them from getting hurt.
Dr. Phoebe Scott-Wyard:
But the thing is when we do that, especially with children that have a physical disability, that sends a strong message, "Oh, you can't do that. You're not able to do that." So, I think pushing them and allowing them to be as independent as they are able to is really important, and it's an important lesson to teach them for the rest of their lives.
Rachel Byrne:
And Dr. Ryan.
Dr. Kyle Ryan:
And I think this has come up a little bit already, but in thinking about operating within the whole medical system where there's so many different faces and doctors and this whole team, I'd say just continue with what Dr. Chambers said in terms of love your child and what Dr. Phoebe was saying too about pushing your child, but remember that you're their primary advocate. You are going to know your child better than so many of these people that you'll see for the first time. So, don't lose sight of that or be intimidated by a white coat, or this intimidating system. Just trust that you know yourself and you know your child, and continue the advocacy that you have moving forward.
Rachel Byrne:
Yeah, I think that's all amazing advice. Carolina, do you want to give one final comment? I know you did give some advice there before, but is there any one piece that you would give to finish off?
Carolina Schaber:
I think it's the advice that I have lived by what Dr. Chambers said to me years ago is I can't predict the future. Peel it back slowly, it's a day at a time and trying to not go into what's the future going to hold. And like Dr. Phoebe said, we don't have a magic wand and we don't know. It's a day at a time and love your child.
Rachel Byrne:
That is so amazing, and I think everyone is going to be so thankful for obviously all of you this evening and the advice that you're giving, and just your knowledge. We actually have some pretty wonderful questions that have come through. First question, I'm actually going to ask Dr. Phoebe this question and then I might go to Dr. Ryan as well. And it's actually from an adult, but I think this is for an adult, but I think this actually would be relevant also for children as well. So, it's about stretching, and I think stretching has some really I suppose different evidence of research behind it, but these questions around do you have any advice for stretching suggestions for somebody with spasticity, who doesn't have the benefit of another person to assist them?
Rachel Byrne:
So, this is probably an individual that needs assistance when we're looking at stretching, but let's go back a step. Can you actually even talk about stretching and the potential benefits or not?
Dr. Phoebe Scott-Wyard:
Yeah, I mean I think stretching is definitely helpful. I think it's important people if you and any class, if you watch a gym class, it's good as elementary school, they're like, "Oh, okay, that was great," but really the physiology of our muscles in order for a stretch to matter, to really make a difference as I'm sure you know as a physical therapist, you need to hold a stretch for at least a minute. I think the length of time that we're holding the stretch, as well as knowing that you want to be a little warmed up beforehand. So, I tell parents after bath is a fantastic time to stretch children that have spasticity, because the muscles are going to be warmer already.
Dr. Phoebe Scott-Wyard:
And they're going to be more relaxed and you'll get a longer stretch, but the key is holding it for that longer period of time. Because if you just hold it briefly and do a really hard push, not only it's painful to the child, you could cause a fracture in their bone. You have to be really careful. As far as needing assistance for stretches, depending on the patient, I've had some good luck with using a splint or a brace to perform this stretch. Sometimes, we'll even do a cast where whether if they have say a contracture or a tight area, maybe at the elbow or the knee or the ankle, where we will do a cast that puts a stronger stretch and once a week, we see the patient back.
Dr. Phoebe Scott-Wyard:
And we'll take the cast off, make sure their skin and everything looks good, and do another cast with a stronger stretch. So, that can give us that 24-hour, 7-day a week stretch that you couldn't get even if you had a caregiver that doing it for you all the time. Sometimes, we'll couple that after we do botulinum toxin injections, or phenol or alcohol blocks. You relax the muscle and then you do that sustained stretch, whether that's a person doing it, a splint, or a calf.
Rachel Byrne:
So, you mentioned a little bit the difference between a what we would call a passive stretch, which is potentially what a splint would be doing compared to it may be a more active movement. Is there pros and cons of both of those?
Dr. Phoebe Scott-Wyard:
Definitely, and I think you can get active stretching splints as well. So, there are dynamic braces that actually have their spring loaded. The person wearing it can still move their limbs, but it's going to have that spring-loaded motion to stretch it in that opposite direction. And sometimes, I've had patients prefer those than the static brace, maybe a knee where it's just wrapped around the limb and maybe it's not customized to their limb. So, I think the dynamic stretch or where you're responding to that muscle relaxing and adding a greater stretch, I think you can sometimes get a lot more range of motion and a movement in that muscle and that joint after doing that.
Dr. Hank Chambers:
Rachel, let's ask you, you're the therapist. Is stretching good?
Rachel Byrne:
Yeah, no, I think depends on what you're trying to achieve.
Dr. Hank Chambers:
Okay.
Rachel Byrne:
Right? I think that's always what it comes down to. What is your goal? I think there's moments where stretching is yes, absolutely, it makes you feel better. Sometimes stretching like for all of us, whether we go get a massage or whether we have a stretch, if we've been sitting in the one position all day can actually just feel good. And I think you don't want to underestimate that at the end of the day. If someone feels tight and uncomfortable, and they've been in this one position, then yeah, we want to stretch. We want to feel lengthened or however you want to put it.
Rachel Byrne:
I think when we look at stretching from a very passive type of stretch that is for a short period of time, like Dr. Phoebe said, if you're going to stretch for 10 seconds, then you're probably not going to see these benefits that you're expecting. And I think that's the difference. I think it's having those expectations of what are you actually stretching for and making sure that that's understood on both from the child's perspective, as well as the person who's doing the stretch.
Dr. Phoebe Scott-Wyard:
We don't want it to be like...
Rachel Byrne:
[Crosstalk 00:47:14] a question Dr. Chambers, but Dr. Ryan, I... Oh sorry, Dr. Phoebe, is there something else that you'd want to add to that?
Dr. Phoebe Scott-Wyard:
I was just going to say especially if it's a parent and a child, you want it to be a positive experience. You don't want it to be like, "Now is my time to torture you." That's no fun for anybody, and it doesn't help build trust and rapport with your own child, but I think trying to make it fun. I have parents that will sing a song while they do the stretch, or the child gets to watch your favorite TV show while they're getting stretched, or something to distract them that doesn't make it a chore.
Rachel Byrne:
And this was a question that I was just... and it will set quite nicely into this next question for Dr. Ryan. So, a lot of the time you hear no pain, no gain and what's your thinking around that, particularly potentially when it comes to stretching, but also when you're thinking about all these different things? Does it have to be painful? One thing that I hear unfortunately a lot is that from particularly adults now who are reflecting back going, "Oh, I remember as a child how painful therapy was, or how painful these things are." Do they have to be painful?
Dr. Kyle Ryan:
I would say I hope not. Pain is generally our body's way of giving us some feedback that something isn't quite going right. I have this vivid memory, I was probably eight years old and I was training for these triathlon races with my dad. We'd be running down the street, and I was getting this horrible cramp in my side. And he was yelling at me saying, "Just dig your hand into it. It'll go away, it'll pass." And that was pretty traumatizing. I still think about that and joke about that with them when we're training together from time to time. So, I would say use pain as a way that your body is telling you is a piece of information. It may be a little bit of discomfort.
Dr. Kyle Ryan:
Sometimes muscles can get sore, or it might feel tight at first if you're doing a stretch, you aren't warmed up, but pain is also subjective. It's an experience that someone has. Pain can mean different things to different people. It's a more complicated question than it truly is, but I'd say I wouldn't agree with no pain, no gain. I'd say listen to your body and go from there.
Rachel Byrne:
Yeah, I think that's definitely how I would think as well. So, I think that's very, very good advice. Carolina, this is for you. This is the next question that's just come through. It's a parent of a non-verbal child who is going through quite a difficult time. So, they're asking any suggestions from the panel about assistive communication and technology, and what options are out there and who maybe they should see.
Carolina Schaber:
I will actually defer that I think to Dr. Phoebe and Dr. Ryan, because I think they're a little bit more in tune with all the assisted devices out there, but I know that Dr. Chambers and I work very closely with the group here with UCP to work on what is out there, and having them trial different assistive technologies, but I will defer to Dr. Ryan and Dr. Phoebe on that one a little bit.
Dr. Phoebe Scott-Wyard:
Well, typically we start with an evaluation with an experienced speech therapist, who has experience in doing an augmented communication evaluation. So, not everybody that does speech therapy is experienced in working with children that need assistance or adults that need assistance with communication. So, you want to make sure it's somebody that understands whether it's something a type to speak device. Maybe they have control with one of their hands, and they can choose from a display, whether on a tablet type of a device and they can write sentences that way, or something the eye gaze where it tracks where they're looking. They can look and choose letters and words and build a sentence.
Dr. Phoebe Scott-Wyard:
There's lots of different things out there, switches, et cetera. I think it's important first to have that evaluation and see do they have the capacity to be able to communicate, and what's the best way for them to communicate. I mean there's a lot of wonderful technology out there and different even apps that are out there that parents can try with their children. One resource that I like to give as well is bridgingapps.org is a fantastic website, where you can create a free profile and list the things that your child may struggle with. And then it will break down which applications on which platform might be available, how much do they cost, what are the pros and cons.
Dr. Phoebe Scott-Wyard:
And I find it's a really helpful way to get started. Even if you don't have that speech therapy in your area, or a person that can do a full evaluation, you can look on that website and maybe try one of the free, or lite versions of the apps that are out there that in this day and age are almost just as good as some of the devices that cost a lot of money. And just let your child play with it and try it out and see if it's something that works for them. That's where I would start.
Carolina Schaber:
Yeah, I think that's amazing. Dr. Ryan, anything else that you would want to add to that?
Dr. Kyle Ryan:
I don't think so.
Carolina Schaber:
Very comprehensive. So, I think in finishing up tonight's discussion, are there any other components that Dr. Chambers that you would like to add? Is there something that we've missed or something that you'd like to add to the discussion?
Dr. Hank Chambers:
Well, it's probably a bit wide for the Cerebral Palsy Foundation, but for all the parents that are on this right now and all the people who have cerebral palsy is to go to the Cerebral Palsy Foundation website. It's a fantastic resource for almost everything we've talked about. And if you want to go into in-depth, there's explains it in language that everyone can understand, and it's my go-to web right now to send people to you. And I'm proud to have been part of the Cerebral Palsy Foundation, and I hope you all will use that resource for everything, almost everything we've talked about. There's much more depth on the CP foundation website.
Carolina Schaber:
Oh, thank you. No, this was definitely a collaborative effort and it's at cpresource.org. If anyone wants to go explore it, it's called cerebral palsy resource. And it was about three years in the making, and it has an absolutely phenomenal library of expert videos and fact sheets, and everything that international working groups from around the world have put together. And we really can't thank them all enough for the contributions they've made, and it's not just your doctors and your researchers. There are parents, there are people with cerebral palsy who have really contributed to this to make it as robust as possible.
Carolina Schaber:
And we always love to hear feedback, so please make sure there's no the other questions that you would like added. Does anyone else have any other comments, or thoughts this evening?
Dr. Phoebe Scott-Wyard:
I just would love to say a lot of times, I have parents come and ask about experimental therapies into something they saw on social media somewhere, or on a parent group. And I definitely encourage parents to ask these questions and have these conversations, because I think it's important for them to know what is the research that's actually been published on a lot of these experimental things, because I think it's too easy to think that there's a cure, and we're just not telling you about it, and that's not true.
Dr. Phoebe Scott-Wyard:
We work really hard to stay abreast of all the current research, and we want to make sure that children and adults that have cerebral palsy are being treated with the best possible treatments that are available, but not necessarily experimental treatments that might do more damage than good.
Carolina Schaber:
You bring up really a wonderful thought and Dr. Chambers, I'm going to ask you a little bit more about this. Because I think when we think about research, we want to try what you want to call the latest and the greatest, how is it as a parent or as a family can people start navigating that, because it's really hard to know what is good evidence and what isn't?
Dr. Hank Chambers:
Yeah, it's very hard and my family fell into this as well. When a new therapy came out when my son was three and I said you have to do this now, it was actually NDT which is not new now, but it was new then. And my wife drove my son 200 miles twice a week to get NDT therapy, because you don't want to miss out on anything. Well, now things are even more smart though that people are traveling to China or Mexico, or someplace to get stem cells because they've heard that that's going to clear their child. And I've been on the other side of that, and I totally understand how hard it is for you to come to that conclusion of what you should do, what you spend your money on.
Dr. Hank Chambers:
Hyperbaric oxygen, there's all kinds of things that are out there are families [inaudible 00:56:55]. And unfortunately, there are Facebook pages and things where people are touting things that may not be good and could actually be harmful. So, I agree with what Dr. Phoebe was just saying. We're not holding those back if we find something that really works and we go to our meetings, we read about it. The frustrating thing for parents is sometimes it takes years to figure out if it's going to work or not. It's like this vaccine for COVID. Everybody wants this right now, but we've got to wait till it's safe and that it proves that it's the word is efficacious. Meaning, that it's going to improve you and not make you work.
Rachel Byrne:
I think you bring up two really good words, safety and efficacy. And obviously, that is our goal of anything that we recommend is obviously first and foremost that it is safe. When we're thinking about those different therapies and Dr. Ryan I'll ask you this question as well, when we talk about safety, what do we mean by that?
Dr. Kyle Ryan:
Safety generally meaning that whatever type of treatment that you are employing is not going to cause some negative side effect, or some harm.
Rachel Byrne:
And sometimes, I suppose Dr. Chambers to what you said, it's like okay, you may not see it straight away. And I think this is really important to remember is that it may seem okay, well this isn't doing any harm right now, but long term, it could have some really detrimental effects. So, I think it's always really important keep that in mind, and I suppose ask the right questions. And this goes back all the way back to those sorts of original things, Carolina that you recommended is ask questions and how to formulate that those questions. Can you go into a little bit more detail about how you would recommend this to families?
Carolina Schaber:
Well, I think it's exactly what we've been talking about is that using your voice and advocating is looking at that recommendation, and even teaching your child at a young age, listening in, asking the questions, and then moving forward. And those skills as you grow older are so important, because we want your child who's now going to become an adult to look at every recommendation. And over that time, as they were going into adulthood is understanding how to ask all those questions. So, I think it really is a lot of just what is that recommendation and really understanding and going to reliable resources for those recommendations, and where are those reliable resources, and teaching your child from early on how to do that too.
Carolina Schaber:
I direct my daughter now at 23, if she has questions, I say, "Ask your doctor, advocate, and then here's some information and these are some trusted places to go for that information."
Rachel Byrne:
And I'm actually going to ask you this next question it's just coming in as well, and it's around thinking about management of their child. It's how do you bridge the gap between medical management of your children, so with your doctor and with the school system?
Carolina Schaber:
Yeah, I've been there. It is, it definitely is going back to that word of team. It is a team, and so we're talking about our providers and our therapists and everybody else, but that school system is truly... from K through 12, I advocated and was teaching my daughter how to advocate, and how to make sure that how do you bring in the information from the physicians, and what do you need from them in order to move the process forward at the school level. And it truly is a team, and I know that we ask a lot about well, what age is your child? What school do they go to? Is there an IEP? Is there a 504 in place? And making sure that school system, that is the place where they see the child every day, six to eight hours a day.
Carolina Schaber:
That is such a key component of how are they in school, and what is it that we need as a team, the medical team to make them successful in that environment. And that's from preschool, to college and on, and it changes every year. And I can't tell you what the answer is, but I know my daughter still asks. She just sent a message to her medical team, because she needed something for college and being able to teach them, your child how to start advocating at a young age and being able to be involved with the school system and maybe [crosstalk 01:01:59].
Rachel Byrne:
Dr. Chambers.
Dr. Hank Chambers:
Yeah, I think as a parent, this is one of the most frustrating things that our families have to deal with.
Carolina Schaber:
Yes.
Dr. Hank Chambers:
Because when they come to the hospital, we're all there for them. We're there to help them as much as we possibly can. The teachers in the school are there to help them as much as possible, but the administrators, I hope there's some administrators on this call, but the administrators are trying to save money. And I would say that every year until my son graduated from high school, my wife and I had to threaten to sue the school district, because they always want to take away services or whatever, put them in a more restricted environment in class. And you just have to be aware of your rights. There are people that are abused people who can help you go through this really complicated legal system, because it is a legal system to make your child gets the best education they can get.
Dr. Hank Chambers:
And they're always going to try to take things away from you, because they have to... I mean that because they have a limited budget, but you just have to fight for them. And that's when parents come in the clinic and are crying. They're not crying because of what we've done. They're crying because they're pool's taken away their aid, or they've taken away the things that they need, like augmentative communication. We have to be their advocates, and I think we are. And it's a really important part of our job as care providers.
Rachel Byrne:
And yeah, I think that is the point as well is that everyone on this call and on this panel tonight, your job just doesn't stop at the hospital or in the clinic. There is a much broader perspective here, particularly looking at school, work, all those different things. What role can the medical team have in helping in these pieces, and is it a place that families can go for help if they're feeling lost inside the education system?
Dr. Hank Chambers:
Well, I'll ask Carolina to do that because she does most of this work for us. Parents come in with these things that said, "They can't do this, they can't do PE. They put them in a play. You have to put them in some accommodated PE class." And Carolina has handouts and a whole book of things to what you're supposed to do to talk to schools. And I think there's resources online for this as well, but I'll let you talk Carolina.
Carolina Schaber:
No, I think you mentioned the resources online .I think it is for the parent, and that was the one thing I will say was advice that I got was understand the system. It was a free class offered, where I lived that just goes through the whole process and understanding what is the difference between a 504 and an IEP, and the difference between kindergarten and middle school and high school and college, and what are your rights. And really understanding what are your rights and being able to use your voice. That was I think the biggest lesson I had was using my voice, and then teaching my daughter how to use her voice and be involved.
Carolina Schaber:
She started being involved in her IEP meetings at a very young age, and it was just to come in and say, "Katrina, what's making you successful in the classroom and what do you still need help with?" And when they heard it from her voice, it made a difference, and then myself learning how to also augment her voice.
Rachel Byrne:
No, I think we're getting to the end of our discussions this evening and obviously, there has been a wealth of knowledge that you have all shared this evening. And I think just so everyone knows in the audience, I know there has been a couple of little glitches for people. We will be posting this to replay. So, please we'll make sure we share it with, so you can all... make sure you see all of it, but I think final comments. Dr. Chambers, I'll put them to you for the final comments this evening.
Dr. Hank Chambers:
Well, first of all, thank you for hosting this Rachel and thanks to my partners for being part of this. I think for those of you who are watching this, the best thing you can do for your child is to get more education. And you're doing that now, doing this on this webinar. There's a lot of other things that the CP foundation is leading the field in, but there are a lot of other resources as well. Look at what's going on in your local area, come to people in whatever city you live in and find out who those people are, and use those resources.
Rachel Byrne:
Thank you so much, and thank you all obviously being on the panel this evening. And we'll also make sure that we share the link to the Rady Children's Hospital and obviously, looking up the cerebral palsy clinic because I'm sure you've got resources that everyone can look at there as well. So, we'll be making sure that we share it with everyone this evening and yeah, I just wanted to say thank you again. And I hope everyone enjoyed this evening.
Dr. Hank Chambers:
Thank you Rachel.
Carolina Schaber:
Thank you so much Rachel.
Dr. Kyle Ryan:
Thank you.
Dr. Kyle Ryan:
Thank you.
Dr. Hank Chambers:
And thank you Greenie.
Carolina Schaber:
Yeah, thank you Greenie.
Rachel Byrne:
Absolutely Greenie. You've been absolutely amazing as always.
Greenie:
Thank you.
Rachel Byrne:
Wonderful, thank you everyone, and we'll see you soon.
Dr. Hank Chambers:
Thank you, bye-bye.