New Horizons Virtual Town Hall 4 - Scottish Rite for Children and the University of Texas Southwestern Medical Center Transcript

A continuation of our educational series with experts from Scottish Rite for Children and the University of Texas Southwestern Medical Center.

Transcript

Rachel Byrne:

Hi, and welcome to the Cerebral Palsy Foundation, New Horizons Town Hall. We are so excited to be continuing this free educational series to educate families and individuals with cerebral palsy about the latest updates and overall management of CP. Now today, it's very special because it is actually the 15th Anniversary of National Cerebral Palsy Awareness Day. And so we would like to encourage all of you to go green for CP, and we are really excited to be bringing you this town hall today. This was made possible by Ipsen Biopharmaceuticals.

Rachel Byrne:

And now I am excited to actually introduce you to the panelists from Scottish Rite for Children and the University of Texas. And I will bring them all on for you now. And we are really fortunate to have such an incredible team joining us today. As I said, they are from the Scottish Rite for Children's Hospital and UT Southwestern Medical Center. And first, I'd like to introduce you all to Dr. Mauricio Delgado. Mauricio is the Professor of Neurology and Neurotherapeutics at the University of Texas Southwestern Medical Center in Dallas. He served as the Director of Neurology at Scottish Rite from 1990 to 2017, and his clinical and research interests on child motor disorders led him to establish specialized clinics in cerebral palsy. Dr. Delgado, it's so wonderful to have you here today.

Mauricio R. Delgado:

Thank you, Rachel.

Rachel Byrne:

Next up, I want to introduce you to Dr. Fabiola Reyes. And Dr. Reyes is a Pediatric Rehabilitation Medicine Physician in the Neurology and Rehabilitation Medicine Department at Scottish Rite. She treats the motor control patient population, and her clinical interests include visual gait analysis, goal-directed tone management, and the multidisciplinary therapies to maximize function and participation in children affected by cerebral palsy and other physical disabilities. Thank you so much for joining us today.

Fabiola Reyes:

Thank you.

Rachel Byrne:

Next, I'd like to welcome Dr. Lane Wimberly to the panel. Dr. Wimberly is a full-time Pediatric Orthopedic Surgeon, and he's the Orthopedic Director of the Cerebral Palsy Program and the Medical Director of the Movement Science at Scottish Rite for Children. We're really fortunate to have you here today because obviously, you balance a very clinical environment with the support of research and education as well. So thank you for joining us.

Lane Wimberly:

Thank you for the invitation.

Rachel Byrne:

Of course. And finally, but definitely not least, Dr. Veronica Meneses is a Developmental Pediatrician and she works in the Pediatric Development Disabilities Department at Scottish Rite for Children's. Her clinical interests include conducting evaluations for children with complex medical conditions, including vision and hearing impairment, and providing a continuity of healthcare for children with all different types of developmental disabilities and complex medical diagnoses. So thank you so much for joining us today.

Veronica Meneses:

Thank you. Thrilled to be here.

Rachel Byrne:

So we're really excited. So we're actually probably just going to get into it. Now there's a few things that we'd like to sort of do for housekeeping at the very beginning. Please, if you've got any questions, put them in the chatbox. We would love to obviously answer as many questions as we can today. So please, if you've got any questions for any of our panelists ask throughout, and we'll try to answer those for you. The other really exciting piece that we've got going on today is that we're also going to be presenting this panel in Spanish, and I'll hand it over to Dr. Delgado, just to explain in Spanish what we're actually planning on doing.

Mauricio R. Delgado:

Thank you, Rachel. [foreign language 00:03:56].

Rachel Byrne:

Thank you so much, Mauricio. So for those of you who don't speak Spanish, we are actually going to, as I said, be having this town hall, both in English and Spanish. And so after we do it, it's going to be absolutely repeated in Spanish. So please, for our Spanish-speaking audience, hold on, and we'll be doing that part of the town hall with you shortly. So I think actually we're just going to get straight into it and actually, Dr. Delgado, I have some questions for you to begin with. So if we're thinking about cerebral palsy, obviously, one of the first questions I think we really should answer is what is cerebral palsy and how is CP diagnosed?

Mauricio R. Delgado:

Yeah. Thank you, Rachel. And thank you for the invitation to be here with you.

Rachel Byrne:

Of course.

Mauricio R. Delgado:

Especially on this special day. So cerebral palsy is, first of all, is not a disease, okay? It's a term that we use to include multiple disorders that present with alteration of movement and posture that are due to a brain lesion or brain abnormality that is acquired during the developmental stages of the brain. So that means before birth or infancy. And this abnormality in the brain is stable. It's not progressive. So it is going to be always the same. The manifestations of this lesion or abnormality in the brain may not be necessarily stable. Patients may get in better or may get complications from the abnormal tone and abnormal strength that they may have in their bodies. So cerebral palsy is not one thing, it's many things, and not only affects movement and posture but can also produce other problems. And we'll talk a little bit more about that. I hope later in this conversation.

Rachel Byrne:

Yeah, absolutely. So on that, if we've got families who are watching today who maybe have concerns for their child or they're maybe not meeting their developmental milestones, what are some of the signs and symptoms that they should be aware of?

Mauricio R. Delgado:

Yes. So I think in the majority of the cases of patients with cerebral palsy at the very beginning, in the first three months of life may not be nothing that they can see but as a child starts getting older, and then they start observing that they are not developing, they're not having the milestones, at least, the motor milestones following what other children do. So around six months of age, they may see that they're not moving one arm or they're not crawling the way that other kids do or they cannot roll over, they cannot sit up. And then they start seeing these abnormalities. So basically, they go to the pediatrician, and the pediatrician then is the one who's going to decide if this kid is following normal development or not. And then from there, they will be referred to the specialist, which is going to be a neurologist or an orthopedic surgeon, or the developmental pediatrician. Usually, that's the way it goes.

Rachel Byrne:

Thank you so much, Dr. Delgado, for that sort of description because I think this is one of the tricky things when it comes to cerebral palsy is that as you said, it's not a one condition. It really is spectrum of lots of different things. And obviously, everyone really presents very differently. And I think this is where sort of the next, my next question comes in. And, Dr. Reyes, I'm going to actually have this question go to you. If we're thinking about cerebral palsy and everything looks differently, what are some of the types of cerebral palsy that we see and then look like? Oh, I think you are on mute.

Mauricio R. Delgado:

We don't hear.

Fabiola Reyes:

Thank you.

Rachel Byrne:

No problems.

Fabiola Reyes:

Very good. All right. So when I'm thinking about the type of cerebral palsy, I'm thinking about the classification we assign in. So it's going to be based on either topographic or anatomic description. We also classify it or describe it based on the motor difference that we see. And then a lot of times, we also want to make sure we use a descriptor to really look at the functional level of the child. So I could go into that a little bit more in detail.

Rachel Byrne:

Yeah. That would be wonderful. And I know that we've got some photos to share today as well, that we're hoping people will be able to see. And so this one that we're looking at right now, can you help describe what we're seeing in this video?

Fabiola Reyes:

See, this is a description. I'm going to go over the description of hemiplegic cerebral palsy. So hemiplegic cerebral palsy means that one side of the body is affected and so both the upper and lower extremity of the body is affected. And so for, as you see, this little kid who's walking, he has difficulty placing his right foot flat on the ground. And then when he's moving his arm, his right arm does not swing as the same as the left arm. And so that gives us a clue that both the right side of the body is affected by the motor disorder.

Rachel Byrne:

And how common is sort of this presentation or this sort of movement disorder that you may see?

Fabiola Reyes:

I don't have the number off the top of my head, maybe Dr. Delgado does but usually we see this type of presentation when there's a specific lesion on one side of the brain. So other types of presentations may show more diffuse involvement. Whereas this is going to show, for example, some sort of evidence of maybe an ischemic insults, a lack of oxygen to the brain, to one very specific region.

Rachel Byrne:

I think we actually have another video that we will put on. And can you start thinking about how to describe this next video? What are we seeing here? And what's the differences? And maybe what are the differences that you would see in say, an imaging or an MRI compared to the child before?

Fabiola Reyes:

Yeah. So this child, and I apologize, I don't think we see the hands and the upper extremities very well, but this child has what we would describe diplegic cerebral palsy. So that means that both of the legs are affected with the motor disorder. And so one of the things you see here and I'll go, I could go into this a little bit more later, you see the shaking of the legs, which we call clonus. And that is a manifestation of spasticity, which is one of the components of the motor difference in cerebral palsy. The other thing we see, and I wish you could see it better, but this child's able to really use her hands really well to hold onto the walker. And if you were able to kind of ask her to do certain things with her hand, she'd probably be able to use them pretty well equally. She'll have a hand dominance but use both hands pretty well. And even though there might be maybe some subtle fine motor differences in diplegic cerebral palsy, the part of the body that's mainly affected is the legs.

Rachel Byrne:

And so this next one, now that we're going to be reviewing this sort of next video, can you sort of describe again what we're seeing here and the differences, I suppose, because obviously this individual no longer using a walker, but potentially looks like they have involvement in all four of their limbs.

Fabiola Reyes:

That's correct. So this is a very good example of quadriplegic cerebral palsy. And so even though this child is not using a walker, she does have some differences of movements in both legs and also both arms. And we'll talk again about this a little bit later, but one of the things that I do notice when I'm looking at this video is that the movement is probably having a component of dystonia and not just spasticity.

Rachel Byrne:

Okay. So that's really interesting when we sort of now talk about and different sort of types, I suppose, of what we are seeing. So the first two videos were showing spasticity and tightness in the muscles, and I think we've got your next video now as well [inaudible 00:13:31] and it will show us that a little bit more, but can you go into a little bit more detail about what spasticity actually is and what it means for somebody's muscles and for their movement?

Fabiola Reyes:

Yeah. So when we're talking about the different types of motor classifications or the motor differences that we see in CP, I like to group them into, I like to group some of them into hypertonia. So hypertonia means that it's a tendency of muscles to be tight. Within the hypertonia category, I think about it as either having dystonia or spasticity. And spasticity really is a muscle tightness that's consistent, that really occurs when the limb is stretched or the muscle is stretched, and you feel a catch and release. As you saw in the video when the limb or the knee is extended slowly, there's not a catch, but when it's extended quickly, you'll see a catch and release almost like a clasp-knife mechanism.

Rachel Byrne:

And then, so we sort of spoke about... Okay, well, this is sort of what spasticity could look like. And you mentioned the word dystonia before. Can you sort of now describe a little bit more the differences in those two?

Fabiola Reyes:

So spasticity is consistent. We will see it even when the kid might be asleep or when they're relaxed, regardless of their emotions or their intent to move. Whereas dystonia is more variable, and we could see a really good example of this here. So we have this child his toes start curling as he starts reaching and picking up the snacks inside that bag. And so dystonia could be variable, and it's really an unintended muscle movement. And when he's relaxed, and he's not using his arms and his upper extremities, those toes relax as well. But once he starts moving those hands to try to focus on really grabbing those snacks, you see that the toes start curling. And so those toes curling is an unintended movement that is descriptive of dystonia.

Rachel Byrne:

And are there any other types of different sort of movement patterns? I'm not quite sure we have any other videos but are there any other types that you would sort of typically-

Fabiola Reyes:

Yes, there are. Yeah. And I make sure to always... You know what, families know that these are probably the most common types of tone differences we see, but we could also see hypotonia. So that means that it's going to be a tendency of muscles to be more relaxed than they typically are. We also see ataxia, which is really a difficulty with balance. So you'll see balance in the trunk being a little bit off or even difficulty with performing smooth limb movements. And that's typically when the cerebellum, the portion of the brain that really helps control smooth body movements is affected.

Rachel Byrne:

So I think you sort of touched on that a little bit as well. So all of these components and what we're seeing sort of with the motor presentation does actually relate to where the injury or the issues are within the brain. Is that correct?

Fabiola Reyes:

That's correct. I forgot to mention, for example, for diplegic cerebral palsy, we will typically see what we call periventricular leukomalacia. So it's scarring around the ventricles, the area of the brain that holds our spinal fluid. And usually, we see that when we have diplegic cerebral palsy and we have spasticity. The spasticity and dystonia component could be very subtle, so we have very specific tests that we do in clinic to make sure we're able to differentiate those two.

Rachel Byrne:

And so when we're thinking about, obviously, now different motor types, you said there's some other different ways that we can start thinking about and describing someone's cerebral palsy as well. And this is from thinking about the motor components. Here on the left, there's sort of a graphic here in relations to what we would call the gross motor function classification scale. Can you just describe that in a little bit more detail?

Fabiola Reyes:

Yes. And so we use the scale, it's really a useful tool, especially for clinicians, to be able to communicate the different abilities and different functional movements that individuals have in different environments. And so it really helps us not only tailor specific treatments, but it also helps us kind of look into the future and see what changes we might expect in the future. So we use the Gross Motor Functional Classification System, so we call it GMFCS.

Fabiola Reyes:

And GMFCS one level, this classification describes individuals who could walk very well in all types of surfaces with no or very little help. Typically, these individuals could go up and down the stairs without holding onto a handrail. For GMFCS level two, so this classification describes individuals who may have a harder time and may need a little bit more help with walking on uneven surfaces. Typically, I ask families, could the child go up and down the stairs? Do they need to either hold onto somebody or to hold onto a handrail? To be able to know if they fall under this classification? And then level three is the classification that describes the individual who might use an assistive device to walk shorter distances but may need a wheelchair to walk longer distances.

Rachel Byrne:

And obviously, the pictures or the images that we are seeing on the left are just examples because obviously, as we've already heard from Dr. Delgado, everybody is so different and presents differently, and obviously, how cerebral palsy affects them is differently.

Fabiola Reyes:

Yeah. And the other thing to keep in mind too is that there are different age ranges where we expect kids to do certain things developmentally, whereas there's other age ranges where we don't expect them to be doing things. So for example, an eight-month-old might not be walking. And so we don't use the overall GMFCS systems to classify mobility in that child, we would use one that's called the GMFCS extended and revised version, which really helps us understand what kind of mobility and gross milestones we should be expecting for that level, for that age.

Rachel Byrne:

And so I think this is actually a really nice segue to invite all the other panelists back and sort of talk about... Obviously, now we've spoken about diagnosis. We've seen how it can affect everybody from a motor perspective, but there's obviously a lot more when it comes to cerebral palsy. And, Dr. Delgado, particularly if we're thinking about, how we look at different things and how we decide on what the best treatment is, or what the best process is forward, could you just elaborate on that a little bit further? Or on what you would do? How would you set goals with a family? How do we go on from here once you've got a diagnosis?

Mauricio R. Delgado:

Yes. Thank you, Rachel. I think it is important, number one, to understand that, as mentioned before, that cerebral palsy, it is arising from an injury or a lesion in the brain, and depending on what part of the brain, then the type of manifestations you're going to see. So besides the motor aspects, the patients may have other problems, other impairments, epilepsy, cognitive impairments, the speech and language problems, hearing problems, visual problems, and others.

Mauricio R. Delgado:

And so it's important then to understand that we need to make a very broad and careful evaluation of the patient by a multidisciplinary team, so we can assess all these different impairments or challenges that the person with cerebral palsy may be presenting with. So how do we decide about managing the patient with cerebral palsy? Well, first of all, I think we need to be sure that we understand that it is cerebral palsy. What is the cause? That we're not dealing with something else.

Mauricio R. Delgado:

So the diagnosis is well established. And then we need to have a conversation with the family, with the parents, with the patient, if possible, to understand what their goals are, and start trying to put the treatment or the management together in order to help them achieve those goals. Because the patients don't come because they have a spasticity or dystonia. They come because they cannot participate in activities and play with other kids and attend school the way the other kids do. So I think we need to make sure that we do a good assessment and then have a conversation to see what are those goals for the management of the patient that we are seeing by the team.

Rachel Byrne:

So I think it's pretty broad, right? So I think whenever we are thinking about now, this sort of planning and how to put it all together. Fabiola, could you just describe a little bit more along the age span and the spectrum and how it all varies. Because I think sometimes it can be quite confusing for families when they're trying to navigate the system. And how do we look at knowing what should be done when?

Fabiola Reyes:

Yeah. So I like to think about the different stages... In three major stages. First, I think about the period between infancy and about six years of age. At that time, really this is a time of really rapid development. I like to really focus on development and facilitating as much development as we can. So for example, I'll start looking at ways whether milestones are being met for both fine motor, gross motor, oral motor, and identifying any impairments that might benefit from therapy. So that's really the main thing that I look at during that period of infancy till about six years of age.

Fabiola Reyes:

At that point too, we tend to favor more nonsurgical interventions for musculoskeletal differences. And so at this point too, I'm looking to see whether tone interventions might help, such as botulinum toxin injections, casting, or bracing. Then after the period of infancy, we're looking at about through a period between about six years of age to maybe middle adolescence. And at that point, it's a period of rapid growth physically. And so we want to make sure we're keeping track of the musculoskeletal differences really that are associated with these periods of rapid growth. So that's where Dr. Wimberly really comes in, and he's really monitoring and following the kids very closely to see if there's any interventions that could help with function or comfort. That's really for about six years of age to middle adolescence.

Fabiola Reyes:

And then for middle adolescents and on, we really want to make sure that we're setting up the kids with the right tools and gearing them up for transitioning into their adult life. We want to make sure that they're as independent as possible and that we're providing the resources that may help them succeed in the future, whatever that goal might be or whatever success might look like for them and their families.

Rachel Byrne:

I think you brought up a really good point, right? So obviously... And we'll go into more detail into some of the surgical, non-surgical interventions and those different things that you can do a little bit later. But, Dr. Wimberly, we are talking about... If we're talking about orthopedic surgeons particularly... Obviously, you don't have to operate every day, there are other things that you do.

Lane Wimberly:

Yes.

Rachel Byrne:

And so could you just sort of describe a little bit between what might be considered surveillance or sort of what would be a potentially an annual checkup to when you would actually then do an intervention or think about surgery?

Lane Wimberly:

Sure. So I'm very lucky in the sense that I get to work with this panel and we do multidisciplinary type of clinics. So some of the surveillance isn't necessarily by me, but it's by our team. And what we're typically watching for in the realm of surveillance is, is the child's function or is the ability the caregiver to provide for the child changing? So perhaps a child who needs to wear a brace to provide them some stability when they're walking around or provide support to keep them functioning well, doesn't fit anymore. The reason the brace may not fit isn't because they've grown, but it's because their foot position perhaps has changed. Maybe they have developed a contracture.

Lane Wimberly:

So a true loss of range of motion at a joint that is now inhibiting their ability to use devices that they really need for proper function. And when we see those sorts of changes, that can be an indication that perhaps it's time to consider a surgical intervention rather than allow continued modifications to bracing. We, as Dr. Reyes has discussed, we do classify children as to their level of function, and that's not meant to put them in a category that defines them in any way, but it helps me decide what our goals might be. And as always, goals need to be shared by the caregivers, the patient and the patient's family. And so children that are running around and playing soccer with a very small neurological impairment might have a different goal than a child who really relies on a wheelchair for all mobility. And so we continue to work with the family and the patients to determine perhaps is there an intervention orthopedically, a surgical intervention, that may allow them to be better in their quality of life.

Rachel Byrne:

You bring up a really good point with thinking about this individual goal setting. And I think it's just such an important piece that whenever... And please, if anyone has any questions, make sure you put them in the chat function. But when we're thinking about this individual goal setting and how to have this shared decision making and this, I suppose, two-way dialogue, there really should be families and children themselves should really be involved in their decision-making pathway when it comes to their care.

Lane Wimberly:

Without a doubt. It's almost several times a month, there'll be a eight or nine-year-old child who probably would benefit from surgery but has no interest in it. And I kind of tell the families, "I can't hold your child down and do something to them." Especially, as they get older, they will ultimately, hopefully, understand consequences and what may or may not benefit them. But, yes, we involve the child, the patient as much as possible in decision-making. And unfortunately, there are cases where that's not realistic and the families make decisions for them, but we must all agree on the goal. And the goal has to be not only realistic but attainable with a safe procedure.

Rachel Byrne:

As I said, we're going to go into a bit more detail later about some specific interventions, but we've all touched on this piece that, cerebral palsy, yes, has motor components and presentations on what we see, but obviously it can affect lots of different parts of the body. And so, Dr. Meneses, what are some of those different areas that we see children, how it affects them?

Veronica Meneses:

Thank you. Yes. I think that feeding and nutrition are very huge concerns that affect really every part of the child, obviously, physical health but can also make the child have less energy to participate and be included in school and in community type of activities. And it can also make it more difficult for the other interventions that are being recommended to really be optimized. For example, if Dr. Wimberly wants to do a surgery, a person with CP, and their weight is very low, or they have aspiration, then we're going to have to address those issues, so they can have a good surgical outcome.

Rachel Byrne:

And so if we're going to sort of think about, and we've got this next diagram, that's coming up showing, I suppose, a body system, can you just sort of explain a little bit about the components on here? Because it's everything from the mouth, obviously, all the way through the digestive system.

Veronica Meneses:

And really it's showing that muscles are really moving this system of digestion and this mechanism of swallow from the muscles in our face and our neck that help us chew and guide the bolus of food down to the tube that connects the mouth to the stomach, which is the esophagus. And down further through the intestines where all the nutrients are being absorbed that are going to give the child energy like the proteins and the carbohydrates. And even as you're forming the waste products and having to expel them from the body, those are muscles that are bringing this about. So we saw in the videos, the muscles are involved in the gross motor activities, very affected, but I wanted to highlight that there are also muscles that we can't necessarily see that can affect things like feeding, that can affect things like speech, they're going to have large impacts on the person with CP in many dimensions of their life. And when we see this kind of thing we want to evaluate and see how we can make things better.

Rachel Byrne:

You've got the word dysphasia on here. Can you explain what that is?

Veronica Meneses:

So the dysphasia would refer to the problems that a child can have to chew and to swallow and to really directly swallow food and liquid from the mouth into the stomach. And some people with CP, they can seem to cough or have to clear their throat, or they can have sort of a gagging reflex that will indicate that process is not working as smoothly as it should. In the more severe cases, we may have a process called aspiration and that's where the food and liquid particles are actually entering the airways. And that can cause problems in the lungs like pneumonia, bronchitis, and congestion, which can cause illness.

Rachel Byrne:

So I think when we're thinking about feeding and nutrition, obviously, it's such an important part of all our lives, good nutrition and how important that is. But it's not just one aspect [inaudible 00:33:40] there's lots of different muscles in our bodies. Can you sort of describe some of the people that you might see on the team if you are thinking about some of these other issues that you might see?

Veronica Meneses:

Right. And I want to point out firstly, that the child and the family are in the center, just like all of you have mentioned because the priorities and the values are really going to guide us in terms of the evaluation and the interventions. But we have the speech and language therapists, who's really an expert in how that swallowing mechanism occurs because the same muscles that are helping us achieve speech are helping us with swallowing correctly. We have pediatrics or a developmental and behavioral pediatrics and nursing to help to integrate the findings with the medical plan and communicate it to the other people on our panel who are working with the family as well.

Veronica Meneses:

We have occupational therapy, who are really helping with the positioning, like positioning of the head and the neck that is really crucial to be able to make sure that it's a safe kind of a swallow and are helping with the seating and the alignment of the trunk and the hip that can also really cause either stability or instability in the swallow. Nutrition, dietician is very important. Children with CP and people with CP, depending on what their level of involvement is, will either burn a lot of calories because of spasticity and movements they can't control or the movements may be more diminished and they may be burning less calories, so we have a nutritionist with experience to be able to calculate what's appropriate for that child.

Veronica Meneses:

And finally, but not last, a child life specialist because we want the child to understand what interventions we're doing, what the procedures might be, whether that's observing them while they eat, so we can make some detailed clinical kind of observations or doing an X-ray with contrast, so we can follow the bolus as it goes down. We want them to feel comfortable and have an opportunity, kids in play, even in the clinical setting.

Rachel Byrne:

So I think this is obviously an example of a multidisciplinary team for an issue around feeding nutrition, but this is very similar depending on whatever the goals or whatever potentially the intervention is that child will require.

Veronica Meneses:

Yes. And that's why we wanted to include that because it's kind of a example of what a multidisciplinary team can accomplish and the different perspectives that can be brought to play in working with the family and the child.

Rachel Byrne:

And we've just had a question come in actually around, it's how early should a care plan be put together? So if we're sort of thinking about these different pieces, is there any stage that would be too early, or should really a care plan be put together as soon as these sort of goals have been identified or a diagnosis has been made?

Veronica Meneses:

I think the earlier the better for sure. And understanding that sometimes in the early years, we're waiting to kind of see what sort of some baseline things will be waiting for maybe certain things to stabilize. But I think it's important because in creating a plan like that, you're able to really get to know the family that you're going to be following. As we are fortunate to follow families and children over the long-term, you're able to really get to know what is important for them, what drives, and motivates them, and that is going to really be crucial to us in choosing both evaluations and interventions and therapies. Thank you.

Rachel Byrne:

And I think one of the really important steps here as well is to think about that this care team and this team isn't just within a hospital setting. This really should be within a home setting as well. And this slide... Could you describe the example here of going... Okay, so this is still for potentially a feeding and nutrition goal that they might have, but how important the home environment is in actually achieving those different pieces.

Veronica Meneses:

Absolutely. I think that with these clinical diagnoses and coming to a specialized center, there are a lot of interventions that are very specific that are recommended, the different therapies and whether there's evidence for the therapy and that's all really important. Great. And we definitely want to continue to read the research and see what are the best interventions, but we want to really emphasize the time with family and with loved ones in that home setting where there's love, there's affection, there's understanding also counts as a therapeutic type of time. Shared meals, music, books, art projects at home, going for trips through the park and through the neighborhood and getting to know the community, learning how to care for pets and interact with pets, as well as church inclusion activities and other community groups in the wider community so that the child world is expanding as he or she grows up and he or she is feeling like they're a part of that, and they're contributing to that. That is something that is going to have a lot of positive benefits.

Rachel Byrne:

And so I think now I'd actually like to [inaudible 00:39:00] because obviously we are sort of around a lot of different things and we're getting lots of different questions coming in as well. So I'd like to just dive into a little bit further around some of the actual specific interventions. We sort of have touched on it briefly. But, Dr. Delgado, can you talk about some of the more specific treatment management considerations that we would have, for example, the non-operative and operative management considerations?

Mauricio R. Delgado:

Yes. So the non-operative strategies that we have to help a person with cerebral palsy achieve his or her goals can be considered if you want treatments of symptoms. Okay? Or trying to treat the symptoms because we don't have a cure for cerebral palsy yet. So what do we treat? So weakness. How do we address weakness? Palsy means weakness or paralysis, so cerebral palsy means weakness or paralysis [inaudible 00:40:05] brain problem. So I think that is an important issue and that's where the therapist are going to get in. They're going to help us strengthen, improve range of motion, improve balance, coordination, by different therapeutic strategies that they use. Tone is another issue.

Mauricio R. Delgado:

So we already talk about spasticity. We talk about dystonia. How does it affect the patient? Does it cause discomfort, pain? Does it interfere with the use of brace or device that we are trying to get the patient to utilize? Is it interfering with leg crossing, walking on their toes, getting a hand that is fisting, or a wrist that is in excessive flexion? So managing tone is an important aspect of the treatment and that's what we can do something about, okay? So there are things that perhaps we don't have too much of a treatment. For this, we can certainly help. So if the increased tone, either spasticity, dystonia, or both are affecting a few muscles, we can consider botulinum toxin, certainly. And we can certainly combine that with other aspects of the treatment because we never use botulinum toxin in isolation to treat the patient with cerebral palsy. So we use it in combination bracing, casting, stretching, strengthening, and so on.

Mauricio R. Delgado:

So botulinum toxin is one thing that we do a lot in those patients who require the management of spasticity in order to improve function, reduce pain, improve posture, etcetera. Other treatments for tone include oral medications. We have some oral anti-spasticity medications that we can use, anti-dystonia medications. We can use in particular baclofen for some patients who have a more generalized type of hypertonia. And so those are the main nonsurgical type of treatments for the hypertonia part of the patient. And there are many other things. So if the patient has seizures, we need to control the seizures. If the patient has behavioral problems, we may need to manage those behavioral problems with therapy or medications and so on. So the nonsurgical part of the team gets very busy by managing all these aspects. And then surgery comes in as one of those treatments that may help us improve things that with medicine we can't, like bone alignment, [inaudible 00:43:14] scoliosis, etcetera that Dr. Wimberly can talk more about.

Rachel Byrne:

So I think, we talk about treating the symptoms, I suppose, was what you just mentioned. Is it possible though to actually have changes in the brain as well? We've heard that obviously the injury or the reason for cerebral palsy is because of the brain. How do any of these treatments actually then end up leading to changes in the brain?

Mauricio R. Delgado:

That's a very important question. And I think that's why they answer... Dr. Meneses gave you earlier, the earlier the better because neuroplasticity is actually more florid, more abundant in the young child than when we become adults. I mean, so we still have neuroplasticity, but not as much as when we are [inaudible 00:44:09].

Rachel Byrne:

So I think that brings up a really good point, like thinking about through the lifespan.

Mauricio R. Delgado:

Helping the brain [inaudible 00:44:19]. Yes. So we've been talking here just for children, but we need to talk about [inaudible 00:44:27].

Rachel Byrne:

Well, I think your connection might be dropping in and out a little bit there. But when we're talking about, I suppose, transitioning to the teen years and through to adulthood and things like that, obviously, these interventions are still very important and what could be available. Dr. Reyes, what are you seeing there? Or what do you recommend or what is available in the teen years? Is it similar?

Fabiola Reyes:

So in the teen years, especially, Dr. Wimberly, Dr. Meneses, Dr. Delgado, they're still going to be managing those active orthopedic differences, feeding differences, behavioral differences, or neurological differences. So we want to make sure that though, as the child transitions from adolescence to adulthood, that we find providers and people who are going to be able to continue to maintain that holistic care for the adolescent. Transitions too is a big thing that we're working on at our institution. One of the things that we want to do is make sure that the adolescents really has the tools to be able to meet their goals when they're adults and they're going to be more independent.

Fabiola Reyes:

So we have a psychologist actually, and our social worker, we have a program where we make sure that every year in the teen years, they're meeting with the adolescents to talk not only about strategies to help people, the adolescents become more independent, but also, how to navigate that system. There are some people and some individuals who may need a little bit more help, for example, with making financial or medical decisions. And so we make sure that we have all those systems in place so that if that's the case once they turn 18, they're able to have either guardianship or this legal support to be able to have somebody help them make decisions.

Rachel Byrne:

And so this is a question that's actually just come through and it's about putting together the care team, putting together this plan, like who should do that? And is it different at different organizations? I know previously, sometimes it was the orthopedic surgeons who actually managed the care the whole way through, and obviously, we're seeing a shift in bringing in a more multidisciplinary team. But who usually, actually puts together these sorts of plans and these care teams?

Fabiola Reyes:

Yeah. So at our institution, we do have multidisciplinary clinics. So we're all able to work together to really put these care plans together. We do have our patient are referred to us from the orthopedic side. So they're the ones who initially, and just from the very get-go, come up with a plan and then start referring when it's appropriate. I don't know what your thoughts are, Dr. Wimberly and Dr. Delgado, and Dr. Meneses.

Lane Wimberly:

I agree. Our institution's a little bit unique in the sense that most of the patients come through the orthopedic clinic first, but that doesn't necessarily mean that we are the ones driving care exclusively. As Dr. Reyes alluded to, it's not overly common for children to need a surgical intervention before school age. And we have children who are younger and still need to be observed for challenges that may arise in the younger child. But the need for orthopedic intervention may not be several years after they arrived to our clinic. And so when you talk about plans, I think we have a strategy for management of children, but we also have to taper that to each child and their family's needs and goals. And so I don't mean that we are prescriptive, but instead, adapt to the changes in the child's abilities over time.

Rachel Byrne:

I think that's a really good point, right? That is sort of, rather than being prescriptive. There is no recipe. There is no exact plan that a family will follow. It's just more having an overview and knowing who to have come in at the right points. And I think that's wonderful to have a multi-discipline team like you all have, that obviously down in Texas is because it allows for that, it allows for this sort of feedback and interventions, and obviously what we would really call shared decision-making.

Mauricio R. Delgado:

Yeah. Can I add something, Rachel?

Rachel Byrne:

Absolutely.

Mauricio R. Delgado:

Hello, Rachel. Yeah. So I think it doesn't matter who takes that role of coordinating the care as long as somebody does it. I think it's important that... And sometimes it's the psychiatrist, sometimes it's the developmental pediatrician, sometimes it's the neurologist, sometimes it's the orthopedic surgeon. So I've seen this in different settings, but it's important that somebody takes responsibility to coordinate the care because there are so many aspects to the care of a patient with cerebral palsy that it's important that we don't drop the ball somewhere. And obviously, the parents are an important part of this team. And many times, parents end up taking a little bit of that role too, coordinating care, especially when there is a void when there is nobody taking their responsibility. So I have parents who are absolutely amazing how they keep track of everything that is going on with their child. That's all.

Rachel Byrne:

And I think it brings up a really good point that somebody's asked as well is how can I find out more information? And I think this is always a great question, and we love to hear it because there are places where you can find more information. Obviously, there's all the resources that your team have, and we'll be sharing this obviously in the chat function, but we will be sharing it with everyone who's signed up today, all the different resources that your teams created. We also have cerebralpalsyresource.org, which has a huge amount of resources from across the lifespan, looking at different components as well. But a question that sort of is coming in is talking more specifically about spasticity and how it's treated. And now I'd actually like to invite Dr. Delgado and Dr. Wimberly to sort of talk us through actually an example of what this could look like. We've got a video that you've shared with us, and I'm pretty sure this is before any intervention that we are seeing this child walking. But when a child comes into the clinic, and they're coming in and they're seeing these different things, Dr. Wimberly, what are you first noticing? What are you starting to think about when you're like, all right, what interventions might be appropriate?

Lane Wimberly:

Sure. First of all, what you're seeing is the video of a child in our clinic. And it's important that when you evaluate these kids, that you have them walk and you can see they're in shorts, and their shoes and socks and braces are off, and we have them as unencumbered as possible. And you need more than walking in a room where they take two steps. So if you don't have a space within your clinic, you take them to the hallway. You need to really see what their adaptations to their walking pattern might be to have an idea of what impairment they may have that could benefit from a surgery. When you look at this, it's a small video of a child with hemiplegia, it appears, that's walking up on their toe.

Lane Wimberly:

And that walking up on their toe maybe what we would consider dynamic in the sense that there is some tone that we've discussed that keeps that foot in that position or there may be a contracture at which point there is truly a limitation of motion. And no matter how much you push on that ankle, there's no way to put it flat. Or it may be a combination of the two. And spasticity management as Dr. Delgado and everyone has mentioned is imperative to have a good surgical outcome. So if we just operate on everyone that has an impairment but don't affect their tone, then overall the surgical success rate is going to be less. So in this young child, if they have a contracture, perhaps surgery is most appropriate to get their foot flat to the ground but also be aware of what other components to their impairment or their disorder may need treatment.

Rachel Byrne:

So, Dr. Delgado, we spoke about before about the antispasticity medication, so something like botulinum toxin in a child like this, would you think something like that could also be appropriate? And then thinking about the other elements that would need to be done in conjunction with that because you brought up a really good point before is that none of these are ever standalone treatments, that there is always a lot more other things going on as well.

Mauricio R. Delgado:

Yeah. I would like to emphasize the fact that when we look at the child impairment, so we are assessing not only the spasticity, we're assessing, what is the strength, what is the strength of the muscles that flex the foot, what is the strength of the muscles that bring the foot up, is there a contracture, as Dr. Wimberly was saying. That means a shortening of the muscle or the tendon that is not allowing that joint to have the range of motion that is required to accomplish that activity. But we need to put that in the context of what is important for the family and the child.

Mauricio R. Delgado:

So what is the effect of this impairment, this physical impairment has on the overall function, activity, and participation of the patient? The patient is tripping, the patient is falling, the patient cannot play the soccer or whatever. So we need to keep that in mind. So whatever we do here at the impairment level, hopefully, will have an effect on participation level. So that's the way we think. We think about goals that are meaningful to the patient and the family and everything that we do has to be in alignment with that. So, yes, we are going to use botulinum toxin perhaps to treat that calf muscle group in combination with stretching by a brace or maybe will require some casting, and eventually, you may need some surgery. So it's not one simple answer. It's an evolving type of treatment if you want a strategy to help the patient accomplish those goals are important to them.

Rachel Byrne:

Yeah, absolutely. And now I apologize before that the video didn't keep playing, but this is sort of the video after an intervention. So after, I would guess, botulinum toxin injections potentially. So now what are you seeing, Dr. Wimberly? If you are seeing there's sort of before and after. I apologize, it was a very quick video for the before, obviously. Are you seeing sort of better heel strike? And what is the reason? I suppose, we've touched on it a little bit thinking about participation in an activity, but is there even a bigger purpose as to why you would want to do these interventions?

Lane Wimberly:

Sure. So just looking at this video, and I apologize, it's pretty small on my screen. It appears that though he has more plantigrade, meaning the foot is more flat to the ground, and therefore, the knee is less flexed, and having a foot flatter to the ground implies greater stability. Stability when that foot is on the ground. And so one of the prerequisites for normal walking is what we consider stability and stance. So when your foot is on the ground, do you feel comfortable that it will accept your body weight as you move forward? And obviously, a foot that you're walking on the toes is much less stable than a foot that's flat to the ground. And that can result in reduced tripping, reduced falling, better brace tolerance, and overall just a better gait pattern, that's more efficient and more likely to keep up with your friends.

Lane Wimberly:

So even though, prior to this intervention, this child was getting around probably on the playground with his peers without much difficulty. Once the foot is plantigrade that should translate into some improvements in their overall stability and overall gait pattern. And that's our goal is to ensure that the child is able to take advantage of their abilities and maintain or if not, improve some of their functional abilities by an intervention. And if the intervention doesn't provide a benefit that is functional, then you question whether that needs to be done.

Rachel Byrne:

Yeah. I think you bring up a wonderful point. This isn't about "looking better while you're walking." It's actually to improve all these other components so that you can do more. And so these children can do more. And now, Dr. Delgado, this next video shows this child now after, and with this sort of second piece of actually having, what we would call, an ankle-foot orthosis or a brace on as well. Can you just elaborate a little bit more as to what this would now be doing after something like botulinum toxin injection and why this is sort of important or why sometimes it wouldn't be used?

Mauricio R. Delgado:

So the use of a brace, it has a different type of objectives or goals. One is obviously to maintain a joint in a particular position. So we can accomplish more stability as Dr. Wimberly was saying, clearing the ground easier, and so on. But also it has a purpose of keeping that muscle stretched. And so we can hopefully, prolong the effect of the botulinum toxin injections that we gave to that muscle group. So we believe that when we are maintaining those muscles stretch for a particular of period time, then we are able to prolong that effect of the treatment.

Mauricio R. Delgado:

So it has multiple reasons why to use a brace. And that will depend obviously on the child. We certainly want to be sure that brace makes things better, not worse. And sometimes we use the braces at night when the patient is asleep because during the day we don't think it helps that much. We just want it to be there to stretch the muscle some way and so on. So this is just one aspect of the treatment of the patient with a motor disorder like cerebral palsy and it's important that we have a good orthotist that works with us as another member of the team, by the way, that is going to allow us to produce the best brace possible for that particular child, with that particular type of challenge.

Rachel Byrne:

Yeah. I've got a question that's come in as well, and it's actually regarding sort of these, I suppose, pre-surgical interventions. Are they always done before surgery? And I suppose, I already know the answer to this because we've already answered, no, there isn't a specific recipe that people follow. But are these used to help prevent surgery or what's... Dr. Wimberly, can you just discuss that a little bit further?

Lane Wimberly:

Sure. So first of all, there's never a requirement for some intervention prior to a surgery if the child meets a surgical criteria. So for instance, occasionally a child will show up with a 40-degree contracture of their ankle, where their foot just points down to the ground with no hope of getting it flat. In my opinion, there's no non-surgical intervention that will improve that range of motion to an acceptable extent, regardless of age or presentation. And so that may be a time where you just say the best way to improve your gait impairment is with the surgery now. And then move forward after that as the child continues to grow and see what you can do to help them over time.

Lane Wimberly:

To the second part of your question, or do any of these interventions delay or prevent surgery? We certainly see children whose tone is managed well at a lower rate perhaps of needing orthopedic intervention in the sense that they don't necessarily have as higher risk of developing contracture, which is one of the primary things that orthopedic surgeon can assist with. I don't know that we can always say a child who has Botox throughout their childhood, regardless of the program, will never benefit from surgery. And we are certainly a lot less liberal with botulinum toxin injections than perhaps historically we have been. I think we find that it's useful for specific goals, but not necessarily a lifelong tone management strategy for these children. So I do believe that there are children that benefit from surgery regardless of age. And I do believe that the pre-surgical strategies are beneficial.

Rachel Byrne:

Yeah. Thank you so much. And I think, again, what I'm hearing and what I hope, obviously, the audience is hearing as well, is that really it is an individualized plan is going to be the best plan, no matter what you do, and not necessarily comparing your child or your experience to somebody else's. And just because something worked for somebody doesn't mean it's going to work for you. And that really having this multidisciplinary team is going to be the biggest priority to working out what this pathway looks like moving forward. So before we sort of wrap up and actually move on to the Spanish version, I just wanted to ask the audience if there are any other questions that are coming in... Oh, actually, we do have one, and it's in regards to spasticity affecting the respiratory system. Dr. Meneses, could you just describe that a little bit? I know we sort of spoke about the digestive system a lot, but what about the respiratory system? And you seem to be on mute.

Veronica Meneses:

Thank you. Yes. Children, individuals with CP who have more of the spasticity will have more of the dysphasia and the feeding problems that we talked about, which can affect the lungs through that route. So you can of the food particles going into the lungs and the airways and causing infection and inflammation, but also with more spasticity with the orthopedic complications that can come with that, you can get a restrictive type of lung disease, which really means that because of the posture and the tone, the lungs are not able to expand to the full extent that they need to aerate the lungs and bring your oxygen in and throw out your waste product. So that would be sort of that connection of why when you're more physically involved with a spasticity, your lung function may be compromised as well.

Rachel Byrne:

Is that a common piece? I suppose, lot of people there's concerns right now with everything that's happened with COVID and the pandemic. Is it sort of a common piece that you see or is it... Yeah.

Veronica Meneses:

I think that it is fairly common. I don't have an actual number for you. I think when they're scoliosis, as you know Dr. Wimberly was talking about, certain types of scoliosis will tend to put more pressure on what the lungs are able to do in terms of expanding, and so that would be a consideration. I think with COVID, individuals with CP and other neurodevelopmental disabilities are definitely in the high-risk group, as I think that they could be more seriously affected by having an infection with COVID.

Rachel Byrne:

And so I think... I just wanted to say a big thank you actually, to everyone. If there's any other questions, put them in the chatbox but really thank you all for taking the time to be on the panel. And obviously, it's not over yet, but really thinking about... Oh, I'm hoping, I don't know if there's actually an audio, I'm getting a cue saying there's an audio issue. So I apologize if that's happening to anyone. We will try to fix that on our end. But I really just wanted to say a huge thank you to all of you for taking the time and obviously everybody in the chat function. And actually, I want to hand it over to Dr. Delgado who's now going to be moderating for all our Spanish seeking audience and I will be leaving you, and I just also wanted to say a big thank you to Ipsen Biopharmaceuticals, who have really supported this town hall series, and we wouldn't be able to do these without their support. So I will now hand it over to Dr. Delgado to continue with the Spanish-speaking component.