Rachel Byrne:
Thank you everybody. All our panelists are here. As I said, this is the team from the Weinberg Family Cerebral Palsy Center. And first off, I want to introduce you all to Dr. Jason Carmel. Dr. Carmel is the executive director at the Weinberg Family CP Center, and he is a child neurologist and a model systems neuroscientist. Thank you much for joining us, Jason. It's really wonderful to have you today.
Dr. Jason Carmel:
It's so great to be here and thanks for the warm welcome and the partnership with CPF. It's been fantastic.
Rachel Byrne:
I'd also like to introduce you to Dr. Joshua Hyman. He is the clinic director of the Weinberg Family CP Center, and a pediatric orthopedic surgeon. He specializes in operative and non-operative care of a broad spectrum of pediatric orthopedic conditions, and particularly cerebral palsy. Please put any of your questions in there for him today. He's really an expert in answering these questions for you. Welcome Dr. Hyman.
Dr. Joshua Hyman:
Rachel, thanks very much. I look forward to speaking with you all this evening.
Rachel Byrne:
And then next up, I would like to introduce you to Dr. Paulo Selber, who is the director of the gait recovery at the Weinberg Family CP Center, which is the new part of the Weinberg Family CP Center. And I can't wait to dive into that a little bit further later on this evening. But he's a specialist in pediatric and adult orthopedic surgery and gait analysis, and definitely an internationally recognized specialist. And I've been fortunate enough to know Dr. Selber for a very long time as part of his work when he was working in Australia as well. Thank you Dr. Selber for joining us.
Dr. Paulo Selber:
Thank you, Rachel and CPF for inviting us all. Hopefully it's going to be very helpful, hopeful and fun, and I'm looking forward to it.
Rachel Byrne:
Wonderful. And then I would like to introduce you to Dr. Heakyung Kim, who's the director of pediatric physical medicine and rehabilitation at Columbia University. She is a pediatric physiatrist and a professor of regenerative medicine. And we are really lucky to have you on here today. And I think there's going to be a lot of questions around what the role of a physiatrist is this evening. And we can't wait to share that all with you.
Dr. Heakyung Kim:
Hi everybody. My name is Heakyung Kim. I'm pediatric physiatrist. I'm so excited to be a part of this event tonight. And I love CPF, so finally I get to join them. Looking forward to our meeting tonight.
Rachel Byrne:
And then last but not least for sure is Jan Moskowitz, who I know some of you actually would've seen when I did a Facebook live with Jan, way back when, actually at the start of all the pieces of the pandemic. We are really lucky to have Jan joining us here this evening, who really focuses on mental health and as a social worker, is part of the group. Thank you for joining us.
Jan Moskowitz:
Thank you so much for having me. I look forward to a great discussion with my colleagues and facilitated by you, Rachel and CPF. Thank you all for having us and we look forward to a great discussion tonight.
Rachel Byrne:
Wonderful. And as I said, as reminder, please put your questions in the chat, and we will try to get all of those questions at the end of the evening. I do also have to thank our sponsor, Ipsen Biopharmaceuticals, and this evening wouldn't be made possible without them. Thank you to them as well.
Rachel Byrne:
Now to get started, as I said, we're going to be breaking down the evening into a few different parts. We're going to start off with the conversation around the introduction of cerebral palsy. And really the purpose of this topic is to help provide this general understanding of what CP is, the process of the diagnosis and the importance of the continued research. The first question that I would like to ask is for Dr. Carmel. When we think about the term cerebral palsy and what that means, how would you explain cerebral palsy to somebody?
Dr. Jason Carmel:
Cerebral palsy is a disorder of movement because of injury to the developing brain. And often it's diagnosed in young children, babies, and toddlers. And initially it can be recognized with failure to meet typical developmental milestones. It then can be diagnosed by somebody who's skilled in looking at baby and toddler movement. There can be a whole lot of associated problems with cerebral palsy, but it's defined by its by poor movement.
Rachel Byrne:
And I suppose that's one of these things. Cerebral palsy really is an umbrella term. And Dr. Selber, when we think about cerebral palsy, could you just dive into a little bit of the different types of CP, and the broad spectrum that exists?
Dr. Paulo Selber:
Well, classically, there's been a few ways of classifying CP. You can classify by the areas of the body that are affected by the movement disorder. And in that sense, we can call, we have someone who could be a diplegic, meaning that the lower limbs are compromised but not much the upper limbs. We can also call them quadriplegics when all the limbs are compromised. Sometimes a hemiplegic when one side is compromised. This is the geography of the disorder.
Dr. Paulo Selber:
But we can also, and as importantly classify cerebral palsy according to the movement disorder that it presents. And we have those children that have the classic spasticity. And spasticity is when the muscles are all very stubborn and active. And anytime you try to stretch a muscle, relax a muscle, they won't relax. Or you have those types of cerebral palsy where there's a lot of random movements. Anytime the patient has an intention to move an arm or a hand, or even the head or neck, the movements don't come out the way they intended. And we call these types of cerebral palsy, we use words like dystonia, ataxia when the balance is not very appropriate. Or OID when the movements can be very, very global and very, they compromise the ability to function very significantly sometimes.
Rachel Byrne:
And when we are looking at the most common types, Dr. Kim, I want to ask you this question. If we're thinking about the most common types of CP, what is something that you see the most of? And can we dive into that a little bit deeper?
Dr. Heakyung Kim:
Right. The most common type of cerebral palsy in terms of movement disorder is spasticity as Dr. Paulo said. When you touch the patient arm or your children's arm, and then you can feel...
Rachel Byrne:
Oh, I think we might just have you frozen for a moment. Actually, Dr. Selber, can you just sort of-
Dr. Heakyung Kim:
Excuse me, can you hear me? So spasticity can impact on movement or sometimes function, but the most common type movement is spasticity.
Rachel Byrne:
And can you... you just cut out for a little bit there. Would you just be able to describe spasticity a little bit again for us just because it did cut out?
Dr. Heakyung Kim:
Okay. As Dr. Carmel says, cerebral palsy is due to motor brain lesion. In the brain, we have a part for the feeling the sensation, and the other part is feeling the movement. The lesion is in the motor track which causes spasticity. When you touch your child arms, or your patient's arm, you feel resistance. But what you feel depends on velocity, which means when you move a joint fast, you feel more resistance. If you move the joint of the arm, you feel less resistance. We call that velocity dependent resistance to passive stretch, which is the spasticity. You feel resistance all the time in your body.
Rachel Byrne:
And if we're thinking about, and obviously cerebral palsy affects people across the lifespan, and when we're thinking about spasticity and when to identify spasticity, and Dr. Hyman, if we can just talk a little bit more about this. If we're thinking around getting a diagnosis, a family might feel that maybe their child's movement feels a little bit different to them. Now what do you do? What are the next steps if you've got any of these concerns?
Dr. Joshua Hyman:
Well, the first thing of course is to speak with someone else about it. Typically, the most logical person to speak with would be your pediatrician. A pediatrician may or may not be comfortable with that sort of a question. Pediatricians tend to be generalists. They often are well, baby doctors, and they either may not, some of them may not be comfortable with that sort of a conversation. Others may simply not be capable of making the diagnosis.
Dr. Joshua Hyman:
If you, the mother or the father, are not satisfied with the discussion that you've had with the pediatrician, you can ask them very frankly, maybe I need to get another opinion, maybe I need to speak with a specialist. The question then becomes what a specialist? And it's not really incumbent upon you, the parent to determine that, the pediatrician should be able to. But you might go on to a developmental pediatrician who is a pediatrician that specializes in developmental issues. Perhaps if you think your child is not functioning well, maybe you will go to see an orthopedist. Or if you are concerned that there's some global movement issues or developmental issues, maybe you wind up seeing a neurologist. But I think the important point is get your questions and concerns addressed.
Rachel Byrne:
Yeah. No, I think that's such an important piece. And it brings us to this point of advocacy and some of those different pieces. And I'd love to actually have Jan join us again as part of the panel, because I'd really like to dive into this question around some advice to give families and how families will think about these different things. And Jan, if we are thinking about okay, you've just got a new diagnosis. What now? Obviously, it can be a very hard time for some families, and a potentially a frightening time because of this unknown. What's some of the best advice that you have?
Jan Moskowitz:
Yeah. Thank you. I definitely agree with Dr. Hyman. If you're not satisfied with the answers that you're receiving, get a second opinion, ask for specialists, seek outside sources. I think we sometimes tend to go down the black hole of Google. And I would say, be a little bit cautious about that, but ask your pediatrician who they recommend, ask questions. Ask questions, ask questions, and write information down.
Jan Moskowitz:
Becoming a new parent in and of itself can be overwhelming. And if you're a new parent and you have some concerns about maybe some movements are off or there might be a global developmental delay, you want to make sure to write down the information that you receive and the information that you have more questions for so that you don't forget. And I think also in terms of the mental health piece, what I tell parents and patients alike is feel your feelings. This is very overwhelming. It can be scary. You can be angry, you can be sad, you can be confused. Have all of those feelings, they're all natural and they're all expected. Don't feel like you can't feel your feelings in front of your pediatrician. They've seen it all before and they want to support you. And they understand that this can be a new and daunting world to be welcomed into the medical realm of things.
Rachel Byrne:
Absolutely. And I love that advice because really it can be for anybody. Obviously, we've just spoken about now, what is cerebral palsy? How does it affect you when you're looking at this diagnosis? But the advice that you just gave could really be utilized by all of us at any time throughout our lives. I know we've got quite a lot of young adults who are going to be watching us this evening as well, and I think that is such great advice for all of us.
Jan Moskowitz:
Yes.
Rachel Byrne:
I think Dr. Hyman spoke about a specific piece around the care team and the different components of the care team. And I think now I would love to go to discussing that a little bit further. And going on to our next topic, which is how to develop the [inaudible 00:14:11]?
Rachel Byrne:
Dr. Hyman, thank you again for joining us. And I really want to touch base and elaborate more on the comments that you were making previously about the care team and the different components and the different types of healthcare professionals that parents of children, or loved ones might start to experience with their care team. And if we're thinking about how you put a care team together, why do you need one? Why is it so important to have this really, I suppose, broad care team around you?
Dr. Joshua Hyman:
Well, as we've heard, cerebral palsy is primarily a movement disorder, a motor problem, a functional problem, but it's much more than that. And for the people in the audience that have children with cerebral palsy or they themselves have cerebral palsy, I think that's self-evident. So you do need a team, not a single person. Often the first aspect of cerebral palsy that does become apparent is the movement issue. Often you will wind up seeing an orthopedic surgeon early on, but there are other issues, depending upon the degree of involvement. There can be breathing problems, pulmonary problems, feeding problems. Again, depending upon involvement, there could be cardiac issues, certainly neurological issues.
Dr. Joshua Hyman:
It's important to get a team together that can care for the entire child. Ideally, the team would work together, communicate together, try and work on a treatment strategy, plan things together. That's obviously what would be your goal, how you go about putting it together is really dependent upon your specific situation where you are geographically, unfortunately. If you are fortunate to be in an area that does have a cerebral palsy center, that would be ideal and they would offer the specialist and can help to [inaudible 00:16:32]. If you're on your own, it is going to require a little bit more effort on your part.
Rachel Byrne:
Yeah. No, and I think you bring up a really good point is, for some, this will be almost easier. For example, if you were in New York city and you're close and Weinberg Family Cerebral Palsy Center, I suppose is your main point of care, it's wonderful because you had this multidisciplinary care team that's already been developed and you work together closely.
Dr. Joshua Hyman:
Yeah. If I could just add one other thing, I've only really touched on the medical issues. We haven't even discussed the therapies that are needed, occupational therapies, speech therapy, feeding therapies, physical therapy. Of course, there are equipment requirements, educational needs are different for some of these children, as well as participating in other activities. There's a whole host of issues that need to be addressed. And it requires a village. It requires a team. And as well as often an advocate that you can go to. Sometimes a single point person. That person could be your pediatrician, could be your orthopedic surgeon, could be your physiatrist, your rehabilitation specialist. But find someone that you can align with that can help to not just to guide you, but to be on your side to work through this.
Rachel Byrne:
Yeah, absolutely. And I think I'd actually like to bring the rest of the team back to join us, so we can dive a bit deeper into some of these different roles that all of you play. Because I think it is important as we dive into that, just the different roles. I'll start with you, Dr. Kim. And you mentioned that you're a physiatrist. There may people listening who actually don't know what a physiatrist does, and how a psychiatrist is... the role play in the care for someone's child and also as an adult.
Dr. Heakyung Kim:
Can you hear me?
Rachel Byrne:
We can hear you.
Dr. Heakyung Kim:
Yeah.
Rachel Byrne:
Oh, we may have just lost Dr. Kim. We will come back and talk about physiatry in a moment. But there's lots of wonderful people as part of this team. I think that is what makes the Weinberg Family Cerebral Palsy Center so amazing is because you have this multidisciplinary team. And I'll start with you, Dr. Carmel, because you are... can you explain the role of the neurologist in all of this case when it comes to cerebral palsy?
Dr. Jason Carmel:
Sure. Well, the first aspect of of care is establishing a diagnosis. And we talked a little bit in the previous portion about a diagnosis. We treat all sorts of problems with the nervous system. Oral medication for spasticity, a lot of children with and adults with cerebral palsy have seizures. That doesn't define CP, but it comes along anywhere between the third and a half of people. There's also headache and other common neurological disorders. We look at the brain as a whole and try to treat many of the different symptoms.
Rachel Byrne:
And when we are thinking about that across the lifespan, would you say a neurologist should be part of someone's care team across the lifespan? As you mentioned early on, maybe as part of the diagnosis? But what about for an adult, is it still important to see a neurologist?
Dr. Jason Carmel:
Yeah. I mean, I think what you'll find is each of us, this segment is talking about the different medical disciplines has different skills that we can apply. I would say the neurologist is most important. If there's overlap epilepsy, if it's a movement disorder that's very difficult to treat like dystonia or ataxia, those are great times to have a neurologist be one of the key components.
Rachel Byrne:
Yeah, I think it's really important as we are going on for people to consider, okay, what's happening with potentially your child, or if you're an adult, your individual experience and thinking about really, what are your goals and what are you trying to achieve as well. Dr. Selber, for orthopedic surgeons, obviously there's... I think there's a few myths that I'd like to bust when it comes to orthopedic surgeons is the fact that you don't have to always do surgery. Is that correct?
Dr. Paulo Selber:
Yes, it is very correct. And very often we're the ones telling parents. And I find myself in that situation, not rarely to say, "No, we shouldn't do surgery yet. This child is too young or this child won't benefit yet. An orthopedic surgeon classically and historically, in the history of the treatment of CP, orthopedic surgeons have been crucial since the very beginning. And they were probably one of the first specialties that manifested interest in this area. And the more we study CP, the more we try to understand CP from the orthopedic perspective, the more we understand that some time orthopedic surgery is not the answer.
Rachel Byrne:
And when should a family see an orthopedic surgeon? Again, is this something that you do really early on?
Dr. Paulo Selber:
Rachel, that's a very broad question and terrific question. We all know that cerebral palsy can affect children at different levels of severity. Some children have what we would say mild cerebral palsy and other children have more severe cerebral palsy. And each one of these levels of severity leads to different orthopedic problems at different age. For instance, if you have a child that is very severely involved, we know that they can have problems like the hips coming out of the socket or dislocating sometimes very early on, or the spine becoming a bit curved.
Dr. Paulo Selber:
In those children, I think seeing an orthopedic surgeon in the first or perhaps even second year of life is interesting to do what we call surveillance of these problems. Is this child starting to present one of those problems? When the children are less involved or less severe, there is less orthopedic problems. And we, orthopedic surgeons don't like to do too much to young children in those conditions. We like to wait until they're older. But we also like to keep an eye on them from time to time to see how things are progressing. And I know it's a long answer, but I think we should, from time to time seeing these kids as the second year of age or third year of age. And then the more severe they are, the more frequently we like to see them.
Rachel Byrne:
And Dr. Hyman, I'll just pass over to you for a moment too, because you are the other orthopedic surgeon who's on the panel. I suppose to look at this difference between surveillance and what would be considered an intervention, I think this is really important when we are looking at childhood development and understanding the difference between those two pieces. Can you just expand on that a little bit further?
Dr. Joshua Hyman:
Sure. I think it's really important distinction. Surveillance means looking out for something. The thing is Dr. Selber just told us there are two critical issues that impact many children with CP, and those are hip problems, hip displacement, and scoliosis. Those are the major ones. Certainly, lots of children may, they walk on their toes, they may have some knee contractures. But the big ones that need big interventions or hip dislocations and scoliosis.
Dr. Joshua Hyman:
The likelihood of this occurring in your child is dependent upon the degree of involvement. Those children that are less involved, that are running around playing sports, pretty much keeping up with their peers, they are less likely to have hip and spine problems. Those children that are not walking, need a great deal of care, have more breathing problems, have feeding problems, they're more likely to develop spine and hip problems. And those are the children that we want to watch more closely, see them more frequently, get x-rays because we can do smaller interventions at an earlier time to prevent the bigger batter problems, if you will, from arising, that might require more significant surgery and ultimately lead to a difficult problem that impacts the child's comfort care and sometimes life.
Rachel Byrne:
And we seem to have... Dr. Kim obviously seems to be having a little bit of a technical difficulty, but I definitely want to make sure that we cover what a physiatrist is. And Dr. Carmel, would you be able to just talk about that a little bit because obviously Dr. Kim plays a huge part in all of these different pieces at the Weinberg Family CP Center?
Dr. Jason Carmel:
Sure. A physiatrist is a rehabilitation doctor. They often take a very functional view on the person's needs and figuring out through medication, through other medical interventions like injections or through the use of adaptive equipment, how to return that person to their highest functional level possible. And it's a discipline that really arose out of disability and addresses the various kinds of function to restore that person to the highest level possible.
Rachel Byrne:
And I think-
Dr. Paulo Selber:
Rachel, if I might compliment some of the things, one of our roles at younger ages, and I find that one of my primary roles is to educate the parents as well. If we believe that a child is at high risk of eventually developing hip dislocation, I think it's our duty to start to explain these things to the parents early on. And what I've done seen in Australia was, because we had a very captive in very controlled population there, because I could follow these children with over the years, very often, it was the parents after a lot of teaching sessions who come to me and say, "Dr. Selber, is it not time to operate on the hips now?" As opposed to when you get a family that has never been educated or explained or talked to about these problems, and they come to you and the hips are already coming out and you say, "Well, by the way, we need a big operation. And there is a really, really bad time for this family. So educating them is crucial and it's an ongoing process.
Rachel Byrne:
Oh, I think that is such an important piece. And I feel like all of us have this role of education is important. And Jan, I want to go back to you for a moment as well. And when we are thinking about all this we've just spoken about the care team as a whole and obviously managing that care team can be sometimes quite difficult, but when should someone consider even adding a social worker to that care team or thinking about mental health issues as well? Because we know cerebral palsy obviously is a physical condition, but there's obviously mental health plays a big role in all our lives. What's your recommendations there?
Jan Moskowitz:
Yeah. Thanks for that. I think if you have access to a social worker, utilize that person. As the team has spoken about, there can be many other things coming along with the ort of orthopedic needs. Like Dr. Hyman mentioned, there might be feeding issues, there might be great mobility issues, there might be some cognitive issues. And it's very overwhelming as a parent, even if you're a couple or more than to navigate all these different doctors and appointments and therapies. Just having someone on your team to help advocate to get those things done, to help you make those appointments, to help make sure that the child is getting the therapies they need, whether at an outside facility or in their school advocating for IEPs in school, making sure they're getting physical therapy two to three times a week at school, these are things that the kids are reported that they deserve and will help them thrive.
Jan Moskowitz:
In terms of mental health, I think it's important to get involved in mental health and therapy as early as you can. Play therapy works wonders. It is the pediatric version of psychotherapy. It is used obviously with play as a child's language, they don't have the words to talk about their thoughts and feelings. They play through them. There are great therapists out there have adaptive play material. If a child is a little bit more involved and maybe has more contractures in their wrists or their fine motor skills aren't great, you might find a really great therapist who has adaptive toys that can focus on Plato instead of a doll, things to help get those thoughts and feelings out.
Jan Moskowitz:
And I think for the parents, it's important also. Again, this can be super stressful. It can cause stress on the parental unit, especially if there's conflicts between what intervention you feel is appropriate at what time, and having someone, maybe a third party, that's an unbiased opinion to help sort out those different opinions and emotions. And just really someone to listen to all that stuff that such a diagnosis can bring up for you, whether it's the fear, the exhaustion, the concern, the overwhelmed feeling, or even it's something that we don't talk much about, but there is a sense of loss. There is a sense of grief and mourning for that normal child. And those are all normal feelings, and having someone to help validate that can be really powerful.
Rachel Byrne:
Yeah. No, I think it's really important for all of us to consider that no person is one individual part. We are all a combination of lots of different body systems, and so it's really important to consider. Now I can see that Dr. Kim is being able to join us again. I would love to actually have Dr. Kim come on and you talk a little bit more about physiatry and the importance of physical re rehabilitation medicine, because I think it is such a pivotal role when we are looking at the care of children with cerebral palsy.
Dr. Heakyung Kim:
I'm staying back. Hi [crosstalk 00:32:43].
Rachel Byrne:
Welcome back. And yeah, I really obviously want to dive into a little bit more about physiatry and your role in the clinical care team, because it is such a pivotal role. And I think not every person actually has the opportunity to have access of physiatrist and your expertise. Can you just dive in a little bit more about your role and the role that you play in the team?
Dr. Heakyung Kim:
Right. As you said, physical medicine and rehab for children has been established less than officially 10 years in terms of board. But our role is in between the medicine and physical medicine, per se. We are taking care of patient as a whole. As Jan said, our patient has so much complexity, and which one subspecialty cannot deal with it. We see our patient as a whole, top to bottom, and try to figure out, what is their problem? We are connecting all the dots together. We work with the therapist, we work orthopedics, we work with surgeons. And we are putting all problem together. We formulate the plan, we work with the multidisciplinary team to provide the best care. One thing I like to share this information that physiatrists in our country, we have less than 300 in this country in 50 states. We feel very sorry that we are not able to provide the service to all our patient population actually.
Rachel Byrne:
And I think that's a really good point. And when we look at the importance of your role in the care team, because I love how you say you're connecting the dots because I think that is such an important piece. And Dr. Carmel, what is available at the one family CP center? When we are thinking about all the different roles, obviously you've got an incredible team who's here today, but I know that you've got a lot more that you offer as well?
Dr. Jason Carmel:
Yeah. I mean, in terms of all the activities within the center, there's multidisciplinary cares we've been talking about mostly here. And in addition to this care team, we're a large academic medical center. As was being explained earlier, CP can affect, obviously affects the nervous system in several different ways, but it affects many different organ systems. And we have a huge network of people we refer to that's for problems. We also do health surveillance as was talked about earlier, not just in orthopedic surgery, but also in other preventative. We have generalists, we have both pediatricians and internists we refer to, obstetricians and gynecologists. It's really that full spectrum of care.
Dr. Jason Carmel:
And then the other things that we do, like most academic medical centers, we do research both human oriented research with clinical trials in therapies to promote recovery, as well as something that's relatively unique to our center, which is basic science. And then finally, we teach. And we teach on multiple different levels, everything from college interns, medical students, residents, fellows. It's a very comprehensive educational and we do events like this to reach out to patients and families.
Rachel Byrne:
Yeah. I think obviously you are an incredible team and everyone's there together, but not everyone is as fortunate. And I think this is the thing, and this is interesting thing. If the parents are watching right now and they're like, "Well, I don't have access to this team." I think the advice that Dr Hyman started with was, "Well, make sure you reach out to somebody." Reaching out to your pediatrician, starting there and seeing what referrals can be made to your providers in your local area.
Rachel Byrne:
And I think always wonderful opportunities to also reach out to centers that maybe aren't in your area as well and also have those conversations to try to get obviously the best care team that you can now. I'd really like to go on to our next piece, which is looking at treatment options and resources and all the different things that are available to us. And I would like to actually invite Dr. Hyman back on to talk about that if possible. And one of the things that when we are looking at our treatment plan, and we spoke about it a little bit before, but let's dive into some of the operative management perspectives with patients and what that looks like.
Dr. Joshua Hyman:
Sure. There's a whole panoply of things that we as orthopedic surgeons can offer a child or for that matter, an adult with cerebral palsy. And I guess one way to think of it might be to start with the least involved individual and work our way up. As you've been hearing, it's a spectrum in terms of symptoms. The most common problem that we see that is not terribly significant is simply kids that are up on their toes might have some bending of their knees and that's impeding their ability to function. And we can address that initially with some physical therapy, stretching, sometimes bracing. We would certainly involve our physiatry colleagues. They can administer Botox. They'll hear much more about that from Dr. Kim that can help to weaken the muscle that allows some more therapy.
Dr. Joshua Hyman:
From our end, if contractures develop and it really impedes their function, we can release or lengthen muscles that are tight. We can also sometimes transfer muscles that are pulling too much in the wrong direction, try and move them to another part of the limb that they function in a helpful way. If the condition is more longer standing, if the child is older and they've had contractures that are longer standing, sometimes the bones can actually bend. We can cut the bones and realign them to provide better function. Sometimes the joints can displace. We've discussed this a little bit with the hip. And if the hips start to come out of place, that can become painful for the child. It can make it difficult. It can get stiffer, it can make it difficult to care for them, to bathe them, change them, dress them and position them.
Dr. Joshua Hyman:
We can realign the joints to improve their comfort and function. And then of course, if the spine is curved, it may be curved that it can affect their breathing, it can affect their digestion, it can also affect their positioning and sitting in a chair. Some of those children of need their hands to communicate, to work of keyboard. And if they're having to hold themselves upright because their spine is curved, that's an issue. We can operate on their spine to improve their alignment. I think I've gone through most of it, but happy to talk further about it because it's something I love.
Rachel Byrne:
Yeah. No, absolutely. And obviously it is really individualized. Whenever you all would be thinking about intervention plan that required any operation, obviously it is really individualized. But Dr. Selber, I'd like to ask your own thoughts and opinions on this as well. Because when we are thinking about operations, what's the involvement of gait analysis? Or what things do you do prior to the operation potentially to look at different outcomes?
Dr. Paulo Selber:
There are many tools that we can use. Tools to assess what the families would like to happen. Tools to assess what the child is unable to do and how could we improve that. And in my case as an orthopedic surgeon that treats CP surgically, those children that are able to walk, we often, if not most of the times, use gait analysis. And gait analysis is just like when we have an x-ray, we see the shape of the bones. When we have an MRI, we see the shape of the muscles and the joints and so. A gait analysis is a scan that tells us how this person is walking, and what is this person doing that shouldn't be there? And what are the things that these person is doing during gaits that are, what we call coping mechanisms? Meaning they're having to make some, or to have some movements during gaits that are coerced because they can't do it any other way.
Dr. Paulo Selber:
Before gait analysis people, and unfortunately very often until today in many places, all people, all orthopedic surgeons do is to go for the muscles and tendons and cut them. And people tend to forget that if we don't have muscle and tendons, we can't walk because muscles is what move us. And gait analysis helps us like Dr. Joshua Hyman said, these days we try and avoid as much as we can, aggressive muscle surgery and aggressive tendon surgeries.
Dr. Paulo Selber:
And by aggressive, I mean too much. And please don't understand that going through the skin through a tiny incision is not aggressive. In my opinion, those are the most aggressive surgeries because the people doing them, not very often know what they're cutting and they don't know how much they're cutting. Gait analysis help us. It helps us to do what I call the surgical dose to come up with what is the best surgical option for this patient these issues.
Rachel Byrne:
And I think you bring up a really good point is when you're looking at different types of interventions, surgery isn't always going to be the answer as well. And Dr. Kim, I'd really like to talk to you about some of the non-operative options. And I know that obviously orthopedic surgeons do that as well. But as a physiatrist, what are some of the non-operative options when you're thinking about treatment options?
Dr. Heakyung Kim:
As a physiatrist, we are not really using the knife, right? My tool is the botulinum toxin injections, or alcohol nerval blocks. I always think my procedure as tuneup procedure. I'm dealing with the pediatric population who always grow and then their muscle is very stiff. I have to tune up their stiff muscle with the botulinum toxin or nerval blocks. Twice a year, I gave a muscle relaxant to their stiff muscles to buy time so they can catch up their bone growth during growth spurt while they're growing. They don't need to go multiple orthopedic surgery.
Dr. Heakyung Kim:
Dr. Hyman and Dr. Selber love me because they don't need to cut the bone and cut the tendon every year. We can say there are a lot of multiple orthopedic surgery by applying the muscle relaxant in regular base. That's why we are doing it. And sometimes as a physiatrist, I also prescribe medication by mouth. Sometimes we work on the ankle brace, or any type of brace, or working with a physiotherapist, who can provide a lot of wonderful, wonderful exercise to stretch their tight muscle to manage the spasticity.
Rachel Byrne:
And I think that's a really good point that you just bring up at the end. And maybe because I am a therapist and a physical therapist, it's always something for them like, "Yeah, let's talk about it." Why is strengthening of the muscles exercise so important?
Dr. Heakyung Kim:
Strengthening exercise with the spastic muscle, or muscle in people with CP is extremely important. All the spastic muscles are very weak. If they have stiffness and weakness, that's really a huge problem for our patient to be functional. Once we relax spastic muscles, we have to work on strengthening the muscles. A combination of strengthening and stretching exercise is going to bring our patient to the next level of function. So making their muscle as strong as they can is the deal, what we have to go through together with the physiotherapist, physiatrist and orthopedic surgeons. With muscle, we cannot do anything until we make them strong. Strengthening exercise is the key for our patient population.
Rachel Byrne:
And I think, and obviously any of the doctors can answer this question as well. When we think about strengthening the muscle, does that make the muscle tighter?
Dr. Heakyung Kim:
Oh, I can answer. I will answer first.
Rachel Byrne:
Go for it.
Dr. Heakyung Kim:
It's the wrong concept, right? I know that in the past, some researchers did to say that exercise makes them even tighter, but we based upon research and we witnessed that once they become strong, actually their spasticity even gets better because their stiffness, the muscle strength can overcome the stiffness. That is a wrong statement.
Rachel Byrne:
Yeah, no... Dr. Hyman.
Dr. Joshua Hyman:
I think the important point here is that you can actually strengthen the muscles that are less affected and that are functioning well, but are weak. And physical therapy, sorry. Cerebral palsy is fundamentally a weakening problem. Yes, they have spasticity, but the muscles are weak. We think about the muscles being tight all the time. And if we tighten our muscles all the time, we get stronger, but that's not really the case. Just by virtue of the child having tight muscles doesn't make them stronger. However, it is very clear that by actively strengthening their muscles, weight conditioning will strengthen not just the spastic involved muscles, but the less involved the antagonistic muscles at work against them. And that helps to improve their function, improve their mobility, can relief pain. Actually strengthening can be very, very beneficial for these kids.
Rachel Byrne:
And yes [crosstalk 00:48:20]-
Dr. Joshua Hyman:
One of the things that we need to think as well is sometimes it is impossible for a child to strengthen a certain muscle. Because for instance, you cannot strengthen the quadriceps. If for instance, the child doesn't have full range of motion in the knee because over the years, the knee got a bit contracted. This is a very important that sometimes people get frustrated and the patients get very frustrated. And I feel for them because people are trying to get them stronger in a certain region of the lower limbs or the upper limbs, but then they don't have the physical range of motion to even strengthen.
Dr. Joshua Hyman:
That's why it's important to have a multidisciplinary team looking at this child. How many times have I seen poor children being told, "You need to do this, you need to do this." And the child doesn't have the range because it's already stiffened up. And the problem is none of these therapies can happen and take place on their own. There's got to be a very broad interpretation of the status quo of these patients to see, okay, what can we do? How can we do it? And perhaps what should we do in advance before exercises? And so on, and so on.
Rachel Byrne:
No, I think it's important because obviously the management of tone and the management of spasticity is much more than just potentially trying to decrease that tone in that muscle, there is many more elements to it. And Dr. Kim, I've got a question for you and it's been coming in a lot from the audience. Is when you're thinking about management of muscle tone, what are, and I know we just discussed it then that strengthening is actually a management strategy on looking at tone. But what are some of the other methods besides medication? You touched on it a little bit when you said orthosis and things like that, but could you just expand on that a little bit more?
Dr. Heakyung Kim:
I'm sorry about the strengthening, or?
Rachel Byrne:
No. Still with other nonmedical management for tone. Say for example, ankle foot orthosis, an AFO, or we've spoken about strengthening, what are some of the other options as well?
Dr. Heakyung Kim:
Managing the spasticity or strengthening? I'm sorry, it broke.
Rachel Byrne:
Oh, sorry. Managing tone.
Dr. Heakyung Kim:
Managing tone?
Rachel Byrne:
Yeah.
Dr. Heakyung Kim:
To me, I think I tried to put everything together to manage the tone, not simply surgery or injections. But as we said, sometimes we do serial casting the joint where they have contractors. According to studies, serial casting is much better than injections or medications. Sometimes we do nighttime brace, so during the day our patient can freely move around, but at nighttime, they can stretch their ankle by using the splint. And sometimes massage and creaming. Those things really improve their spasticity. Sometimes vibration. Although study didn't show the evidence, but some study did show that full body vibration does decrease spasticity too. There are a lot of different instrument we are using to manage the muscle tone and strength.
Rachel Byrne:
Yeah. And I think these are sorts of things that if anyone wants to find out more information about obviously going to the Wineberg family cerebral palsy center, your website. They can also come to the cerebral palsy foundation website, @cpresource.org, where we try to have a lot of these different, I suppose, modalities and interventions discussed and talked about.
Rachel Byrne:
Now, I think another really important component. And I'm just looking at the time and making sure that we cover everything and then get to other people's questions, but is around advocating and this whole idea of advocacy and what that looks like and how we can move it forward. And Jan, I'd like to ask you a question around advocacy. When we're thinking about what I should be doing to advocate for my child, even mental health or these things that potentially others might be dismissing or not thinking about, what are some of those things that a family member can do?
Jan Moskowitz:
I think the number one thing a family member can do is listen. The child is their best advocacy, whether they're verbal or nonverbal, kids can tell you. The surgeons on our panel, the physicians on our panel, they're the expert at doctoring. But the expert of CP is the child who has CP. The child is going to be the best advocate. And when children are young, the second best advocate is the parent. I'd say, listen to your child. If your child says they're in pain, listen to it. Find out how you can help fix it. If a child is non-verbal, look at those non-verbal cues, are they more tense? Is there face grimacing? Are they not sleeping well? Are there changes in their eating patterns? You know your child. You know what's normal. You know what's not normal. I think definitely be tuned into your child's needs. They're going to be the ones to tell you if something is wrong and then you are going to be the one to help push for writing that wrong.
Rachel Byrne:
We always say one part that we try to do through education. I know education's being brought up by everybody today. It's how important it is and it really is such an important role of all doctors and clinicians and therapists. But how to then utilize, how to become a good consumer, how to become a good consumer of this different pieces of knowledge? And Dr. Selber, I'd like to ask you this question, is if you can become a good consumer, how then can a family help improve treatment outcomes? Because obviously as we all said, you're a doctor. You go in there and do your surgery and you do your part, but then what's next? How do these families help bring all this together?
Dr. Paulo Selber:
Yeah, that's a very, very good question, Rachel. First of all, I think, and we've discussed this in other seminars and other opportunities. I think families with children with limited abilities, they tend to go through different phases in their lives. There's the first phase, which is when shocked about the news, then they don't want to believe in it. But there's a phase in my opinion, that it's very problematic. And this is when families look for cure. And there's a lot of people out there that offer miraculous cures. And that's the first thing that very often hinders the child. And I see it over and over again, children being put through treatments that are advertised as miraculous and minimally invasive and all sorts of things. And deep inside, we know, and through research and from data that those treatments, they're only attractive on the website.
Dr. Paulo Selber:
But when we see these children in the long term, the results of some of those intervention are actually very sad. And the real results of many interventions only happen five, 10 years down the track. I think the first thing that the families have to do to try and improve the outcomes and to be a bit patient, and to search, and to talk to other people, to talk to other families. But not only about results of any interventions that happen six months after the intervention, but results that have been seen and witnessed after five, 10 years of the interventions, because those are the real results of any intervention. And we're inundated with magical treatments.
Dr. Paulo Selber:
I think that if families could only do that and be thoughtful and research a lot and investigate and talk to others and say, is it really this magical treatment that this doctor is providing or this, whoever professional, is it going to make any difference in the long term?
Rachel Byrne:
And I think you bring up a good point with trying to establish what is best evidence and how to shift through that? Particularly when you're looking at everything that's available online now, it's hard. It's hard to work out. Okay, does this have research evidence behind it? How to look at that. And Dr. Hyman, maybe you can just elaborate a little bit more on places where some parents can find good resources, because I think that's really important to know where can I get best evidence? Because I think it's a really hard thing to try to navigate, particularly with the internet and the environment that we live in.
Dr. Joshua Hyman:
One of my other roles is, I'm a board member and I'm currently the secretary of the American Academy of Cerebral Palsy and Developmental Medicine. And the academy has a terrific website that offers a great deal of information, not just for professionals, but also for families. We also offer an opportunity for families to actually join the academy. You are invited to meetings, you can attend various seminars, and also you have member ability. You have member access to the website. But even not as not a member, you can access the website. There's tremendous amount of information about care options, efficacy of care options, care plans.
Dr. Joshua Hyman:
If you are seeing someone who recommends a treatment, I would absolutely suggest doing a little bit of research. I would absolutely suggest getting a second opinion, sometimes a third opinion. One thing that we really haven't talked about is how quickly these problems arise. How are emergencies in terms of the treatment needs of your child. And I tell parents that these issues, problems that we've been describing, they occur at glacial speed. It occurs very slowly over time. You do have that luxury to get another opinion, to get better informed, better educated. If something sounds too good to be true, it might be as Dr. Selber was suggesting. Similarly, if something just sounds too horrific to contemplate, it may still be the right thing for your child, but get other opinions. Read, go to other sources. Rachel, I hope that's helpful. I can elaborate more.
Rachel Byrne:
Yeah. No, I think it's really of important and I'll actually try to get Dr. Carmel to be coming back on as well, because I would really like to talk about potentially the research pipeline and going, okay. We've mentioned what makes Wineberg family cerebral palsy center unique is that you do have basic science research. And just something looks good on paper in basic science doesn't mean that it's ready to go yet. Can you just talk about how to navigate that research pipeline? Because I think it's really important for us all to understand.
Dr. Jason Carmel:
Yeah. Research, Dr. Hyman was just talking about signs and symptoms of CP happening at glacial timescale, I think that research happens slowly and the research that's often most ready for prime time, meaning most likely to benefit you or your child has been developing for a while. And if it comes from basic science, it often follows a pipeline from cells to animals, to people. And that sort of, the more mature science often ends up winning at the end of the day. Safety is critical. And showing that there's a safety of a particular treatment is critical. I mean, with any, whether it's treatment or involvement in research, there's always this risk/reward balance that one wants to strike. And certainly safe treatments are critical. And then look for efficacy, look for matching the research intervention with what are your needs as a person. Do you want to recover walking? Do you want to get hand function back? Is communication your number one goal? Matching those I think is also the really important. I do want to say just one thing about access from an earlier conversation.
Rachel Byrne:
Sure.
Dr. Jason Carmel:
One of the advantages of all of us having to adapt to the pandemic and doing more telemedicine is that second opinions are more easily gained now than they've ever been. And whether it is us here in New York and at Columbia at the Weinberg family CP center or other CP centers, can often be accessed. And with all the other people's opinions who have already spoken eloquently on this, we're here and available. And often these centers are center and others will work with your local provider, whether it's your pediatrician, internist, physiatrist, that any interventions or ideas that we're thinking about can be incorporated and work with your care at home.
Rachel Byrne:
And actually that brings up a good question because someone's actually asked this question and I think you've touched on the idea of it a little bit. But even, for example, the Weinberg family CP center, what's your then relationship with Columbia university and then with Cornell? I think when we are looking at New York and all the different offerings, everyone does actually really collaborate together, is that right?
Dr. Jason Carmel:
Yes, to various extents. We are low at Columbia's medical center in Northern Manhattan. Some of the departments are shared between Columbia and Cornell. Others are not one thing that's impressive about the cerebral palsy field is how collaborative it is. We're all part of this New York Cerebral Palsy consortium. And we get together regularly. We ask our colleagues at NYU or hospital for special surgery about their advice about difficult care management, collaborative research projects. Within the medicals, we tend to do a lot of our referral within the medical center so care can be tightly coordinated, but we have lots of relationships outside as well.
Rachel Byrne:
Yeah. And I think that is what's really pretty amazing about the field of cerebral palsy is that we really are one large community and that's really across the country as well, not just within New York. And I think it's really important that researchers, clinicians and everybody are learning together. And I think that's where patients reaching out getting second opinions or doing what they need to do is very much appropriate.
Rachel Byrne:
Now I'd actually like to ask Dr. Kim to come back on, got some, obviously we're going to go through some of the audience Q&A right now. But Dr. Kim, when I'm looking at some of the questions that are coming in, some of them are actually specific potentially to Baclofen. And what about using Baclofen long term? I know we talked about some different watch line and toxins and oral medications that can be used, but what about Baclofen?
Dr. Heakyung Kim:
The Baclofen has two types. One is the oral Baclofen, which we take pill by mouth. The other one, we give Baclofen through... close to spinal canal. Inside the spinal canal, so it directly goes to the central nervous system. When we take oral Baclofen, couple of things, I'm very carefully address. If patients are really small, like younger than three years old, I'm very carefully use Baclofen because sometimes it can cause gastritis. And that causes... because any pain causes more muscle stiffness. Little children and [inaudible 01:05:51] who was quite involved cases, I tried not to use because of the GI issues. But if the child or patients are older enough, then we use Baclofen carefully. Only problem is to find that sufficient dose is very, very difficult. We keep going up, but patient is not really getting better many times.
Dr. Heakyung Kim:
Some patient shows amazing outcome, but that's very rare. And then I realized there are some patient who was on this medication over 10 years. They can have a problem in the lung. Pleural like the membrane around the lung has some fluid collection as a side effect. Higher dose or some mental problems. All the medication has a side effect. Therefore, Baclofen also has a side effect, but using one particular medication for a long time, I don't recommend. Therefore, now the people came up with the intrathecal Baclofen pump replacement, which means, if you have to take 100 milligram of Baclofen by mouth, less than one milligram of Baclofen will control your spasticity.
Dr. Heakyung Kim:
The problem is that this pump is a physical pump, so the hardware is going to go underneath of your skin. That's going to bother. Every five to seven years you have to change the pump. But there's a pro and cons. To answer to your question about the Baclofen, it's a wonderful medication, but we have to carefully use. And also, when you take the Baclofen for a long time, you should reassess if this medication is really working. If this one doesn't work, you should taper off after you discuss with your physician.
Rachel Byrne:
And you bring up a good point about the use of long term medications and what's that like. We've got another question that's just come in as well. You talked about Baclofen starting around three years of age, potentially. What about botulinum toxin? When should botulinum toxin injections begin or when can they begin?
Dr. Heakyung Kim:
Based upon research, the multicenter trial has been done for younger than... I'm sorry, older than two and older than two years old. Officially, we recommend the botulinum toxin injection to the patient who are two or older. But clinical experience, ever since botulinum toxin came out since 1986, we recommend botulinum toxin injection to any ages actually clinician-wise, not research. And then not much side effect has been reported. In my case, I use older than, or around one year old. If the really, really needs botulinum toxin injection, I do use. Some orthopedic surgeon or some physiatrist, they use botulinum toxin or even torticollis, which means younger than three-month-old baby also get the botulinum toxin injection. To clarify the age, research-wise, older than two years old. Clinical experience, any age. That's what I can say.
Rachel Byrne:
Yeah. No, and I think this is an interesting step. And what about botulinum toxin injections for spasticity? Can you get them multiple times or is it like a one off or do you see repeat treatment options?
Dr. Heakyung Kim:
Thanks for the great questions. I wrote a couple of articles on this one. To me, unless patient really developed the antibody, botulinum toxin always works. For example, the effect of the botulinum toxin is three to four months. Most of my patient gets every six months. I don't do three to four months injections. But some patient comes to me longer than 10 years, which is still they should have a great outcome. But the reason why the people fears that botulinum toxin doesn't work after two to three times repeat injections, because botulinum toxin dose is very limited dose. We are using for our patients whose condition is all different.
Dr. Heakyung Kim:
Mild cases, every time it works. Severe cases, even though they get older, we have only certain amount we can use, which means when you use botulinum toxin only to the patient who has a diffuse spasticity, they don't feel like botulinum toxin works after one or twice injections. But if you set the goal, when you have botulinum toxin injections, if we use botulinum toxin for that goals only, most of the time it works. That's my experience. Because of the dosing, that's why the people feels that it's not working.
Rachel Byrne:
I think that probably brings up a really good point with you really, this is specialized treatment. This isn't going to your general pediatrician for botulinum toxin injections or your family physician. You really do need to see a specialist for these different pieces. Is that right?
Dr. Heakyung Kim:
That is correct. Actually in some country, they allow therapist or some nurse. When I went to Africa, actually a dentist told me, asked me to teach him so he can do botulinum toxin injection for the people with the cerebral palsy. But I think the point what I want to make here, that injection is that anybody can do that. You can do it Rachel, right? Even though you don't have training. I think the most important one we have to think about is when we do the injection, it has to be safe and effective. Therefore, the injector should be knowledgeable on medication and also technique, and then knowledge on patient condition and then know how to plan the injections. Right? That's what the subspecialist are coming up, but anybody can do injections. That's not the problem. Right?
Rachel Byrne:
Yeah. But no, but we're not encouraging anyone to go to anybody. Obviously, you really do want to [crosstalk 01:12:35] specialized treatment. And yeah, absolutely. It is absolutely way to go. And I'll actually just invite Dr. Hyman back on questions that I think you'll be the right person potentially to have answer these ones. When we're looking at how often clinicians should be seen. If we're thinking about an orthopedic surgeon, and I know we spoke about it a little bit before, but if you're thinking about a surveillance piece, how often should someone see an orthopedic surgeon?
Dr. Joshua Hyman:
Depending upon the condition that we're surveilling and as orthopedic surgeons, we tend to, as we've discussed, watch the hips and the spines. The period can vary as well as the degree of involvement in the child. Those children that are more involved while they're young and growing, they need to be watched a bit more closely, a bit more carefully. I tend to want to see them every six months or so. That involves both a physical examination. I'll speak with the parents, get a sense as to how they think their child is doing. If they think their child is getting stiffer, more uncomfortable, that's an important finding. I also want to get an x-ray and see how things actually look.
Dr. Joshua Hyman:
We want to minimize X-rays obviously radiation to the child. Those children that are less involved, less likely to have problems. I might see them once a year, but again, I tell the parents in the interim, whether it's a year I'm going to be waiting to see them or six months, if the parents feel that there's a significant change, or if the therapist feels that there's been a significant change, I'd like to see that child back sooner for an evaluation.
Rachel Byrne:
And this, I think is another question that someone's asking as well. And it comes to do with chronic pain in young children. It's one of those things to see a shift. And you've just mentioned it then if you do see a shift, you need to go in and make sure you're seeing somebody, but what about chronic pain in young children? What can we do about that?
Dr. Joshua Hyman:
Chronic pain is obviously a terrible problem for the child and for the parents. It's also a problem for the treating physician, the surgeon, because I will tell you as an orthopedic surgeon, I don't have a great deal to offer. However, I do have a close colleague that I rely heavily on, and that's some Dr. Kim and our physiatrist. I think that that's probably a better question for her to address.
Rachel Byrne:
That's a great thing. Obviously Dr. Kim, if we can get you back on as well, we will throw that question over to you. To talk about chronic pain in young children and what some of the things that we can do?
Dr. Heakyung Kim:
Right. We become more alert on pain in people with the cerebral palsy nowadays, because usually about 50% of children have pain. And adult is about 87% patient has chronic pain. We have to be alert on this issue. And I have a map for the pain. When I have the patient with a chronic pain, the number one pain source, I blame the spasticity first, because body being stiff can be cause for the pain. And then once I check it out, and then if this is very younger children, according to study and according to our clinic patient population, GI problem is the second most common pain cause. I have my own map based upon research and based upon our clinic patient experience. We rule out one by one, GI, and then we go to orthopedic issues like hip problems, spine problem, skin problem, drooling, aspiration.
Dr. Heakyung Kim:
When we deal with pain in people with cerebral palsy, this is almost unmet needs field. I think the conductor who can be the parents and physician has to thoroughly assess the patient. I think I found out that the most important to solve chronic pain is being a good listener. The physician tend to be very short. If they cry, "Oh, I don't understand. I don't know what they're trying to do it." They cry because they want to say something to us. We have to be very patient.
Dr. Heakyung Kim:
For us to deal with the chronic pain, we have to listen very carefully on patient's body language, if they are not mobile. And then the parents try to give us some signal or information to find out the pain source. While you're looking for the pain source, please try to control the spasticity first, because any pain can increase the sparsity. Spasticity causes more pain, so they're going into vicious cycle. To answer your questions, dealing with chronic pain is the most important one, but being a good listener and check every top to bottom to find the pain source. While you are looking for the pain source, you have to start to treat the spasticity to cut the vicious cycle of the pain.
Rachel Byrne:
I think that's such great, good advice. And I love this thought about listening. And for that actually with the next question, I'd love to go to Jan to answer this next one. And if we are thinking about school-aged children, does the Weinberg family cerebral palsy center get involved with school-aged children who may have difficulty getting services in school? And I think this is all coming down to listening to what people need and what their goals are. And any advice on that, that the center might do?
Jan Moskowitz:
Yeah, absolutely. I think this goes back to what you had mentioned earlier about the importance of advocacy. And part of my role as a social worker is to help advocate for our patients and families. And often that means connecting with the child's school, whether it's connecting with the nurse or whoever is the medical person, getting the IEP team to connecting with the principal, even if we have to. There's plenty of times that we've reached out to schools to really push for and advocate for these services. I think the best thing that a parent can do is if the child, their IEP doesn't seem to make sense, or they're not getting enough therapies, push for it. Request an IEP meeting. IEP meetings happen at specific intervals within the school year, but you can always request an additional meeting.
Jan Moskowitz:
And what I often say too is if you can't bring your child to that meeting, they can be long, they can be boring, but again, I fully stand behind the fact that the child is our best advocate. They are the expert. They know what they need. If a child isn't succeeding in gym or can't participate in gym, what else can they do? Is there something adaptive that they can do? Or maybe they just need some extra physical therapy to help them be successful in gym class or even in art class?
Jan Moskowitz:
All of these things, yes, it helps with their physical conditions, but it also helps with their emotions. Kids want to succeed. They don't want to feel that they can't keep up with their peers. It's really important that we get them the services that they feel that they are on par and are making friends and being successful and being happy in school, especially now, when things are super challenging.
Rachel Byrne:
You bring up a wonderful point or around this self-advocacy and what age do we start to do that. What age is... is there age that's too young or is actually, it's okay to start that as early as possible?
Jan Moskowitz:
Start early as possible because you know what, even if the kid isn't in school yet, they could be eligible for early intervention. Once you get the early intervention in place, then they can start being eligible and they can have physical therapy, they can have occupational therapy, they can have speech. And actually if they have early intervention, a lot of times that can actually be an easier segue into the department of education system and getting from an early intervention plan over to an IEP, which is an individual educational plan for patients who need it. Sometimes that's actually an easier way in is if you already started with EI services.
Rachel Byrne:
Yeah. No, absolutely. And I think this advocacy piece in young children and their role in their own care and just how important that is, I think that's such an important part of a child at any age. Obviously passive treatments and children that are not having fun and not involved in what they're doing are not going to be as effective.
Jan Moskowitz:
Right. And I think it's important to much of a child's medical journey. They're not given choice at all. They need to have a surgery, they need to take this medication, they need to do all of these things. Being able to give them choice, what choice exists is really powerful. What kinds of things do you feel you need on your IEP? Do you feel that two times a week physical therapy is enough? They might know. A lot of times they don't right, and that's totally fair. But if there is choice within these necessary interventions, then I think let's start empowering our children. The earlier, the better.
Rachel Byrne:
We've got one last question that I want to make sure that we answer before we leave. And I'm pretty sure we'll go actually back to Dr. Kim on this one as well. Lots of questions for you today, but it's around a child who has dyskinesia. And if a child who can't talk, but has periods of dyskinesia, can that be a sign of chronic pain? You're probably talking about a child that's probably fairly involved here, has communication difficulties, but these periods of dyskinesia, is that a sign of pain or is that just a sign of a different movement?
Dr. Heakyung Kim:
If I understand, this dyskinetic movement is not a usual movement problem, right? It comes and goes, that's why that question came up?
Rachel Byrne:
Yes. It seems like that the dyskinesia, dyskinetic movements come and go. And when they come, could that be a sign of chronic pain? Because obviously issues communicated.
Dr. Heakyung Kim:
Right. What I hear, because when we say dyskinesia, it includes choreoathetoid movement. Sometimes it will also include dystonia. I don't know when this person say dyskinesia means. I'm sure some kind of movement is showing. Number one, yes. If there is some more dystonic posture, that's absolutely related to pain many times. Number one. Number two, if this movement comes and goes, sometimes we also try to rule out seizure disorder too. I don't know, I like to see the movement actually. What kind of movement that is. But when it is not constant but intermittent, we should rule out what is going on.
Rachel Byrne:
Yeah. And I think some good advice that someone could have is if it is very intermittent and it's not happening all the time, when it does happen to try to take a video of it, for example, so that when they come and see you, or whoever they're speaking to, or seeing that they can actually see that, because obviously sometimes what happens, and we all know this is that when you get to the doctor's office, the things that you wanted to show or see, you don't get that opportunity to see.
Rachel Byrne:
But overall, I just want to actually bring everybody back on, because I really want to thank you all. This has absolutely been an amazing hour and a half. And the time that you have all given to be here today is extraordinary. And I just really want to thank the whole team at the Weinberg Family CP Center for being here. And thank you for spending the time to answer all our questions. And I just want to say obviously, a big thank you. And for everybody, you can go onto Weinberg Family Cerebral Palsy website. We'll be making sure that the links are posted on this post as well as obviously call Weinberg Family Cerebral Palsy Center at any time as well. But just wanted to say, a big thank you to all of you and for your contributions this evening.
Dr. Heakyung Kim:
Thank you.
Dr. Jason Carmel:
Thank you.
Dr. Paulo Selber:
Thank you very much.
Dr. Joshua Hyman:
Thank you so much for the opportunity. Bye-bye.
Rachel Byrne:
Thank you everyone.