Jason Benetti: Welcome to Let's Talk CP, the new podcast series about all things cerebral palsy, presented by the Cerebral Palsy Foundation. Each episode features different clinicians, parents, people with CP and other experts talking about ways to help you better navigate your journey with CP. I'm Jason Benetti, play-by-play announcer of the Chicago White Sox and ESPN, and I have CP.
Cynthia Frisina: Good morning. This is Cynthia Frisina with the Cerebral Palsy Foundation, welcoming you to a new year and a new season of Let's Talk CP 2022. I'm super excited to be able to kick off our new season and our new year with amazing two guests from Gillette Children's Specialty Healthcare in St. Paul, Minnesota.
Today I have with me, Dr. Tom Novacheck, associate medical director for the James R. Gage Center for Gait and Motion Analysis and a pediatric orthopedic surgeon, as well as Dr. Andrew Georgiadis, pediatric orthopedic surgeon and clinical manager also for the Center of Gait and Motion Analysis. Welcome doctors. We are thrilled and excited to have you here with us today, especially starting off this new year and the interest and all of the questions that we get from families around what you do about gait analysis. We're excited to have this conversation today. Welcome Dr. Novacheck and Dr. Georgiadis. I thought before we began, we could have each of you introduce yourselves individually, and then tell us a little bit about what you do. Dr. Novacheck, would you like to begin?
Dr. Tom Novacheck: Thanks so much, Cynthia. I really appreciate the opportunity to be here. As Cynthia mentioned, I'm a pediatric orthopedic surgeon. I do work at Gillette Children's in St. Paul, Minnesota. We are a private hospital, not-for-profit, but we have association with the University of Minnesota. In that role I'm a professor in orthopedics at the university. I'm also currently the president of the American Academy for Cerebral Palsy and Developmental Medicine.
Cynthia Frisina: That's wonderful. We're thrilled that you were able to make the time today to be able to join us. Dr. Georgiadis, could you tell us a little bit about yourself?
Dr. Andrew Georgiadis: Absolutely. Thanks again for having us talk to you today. I'm really excited about it. I'm Andy Georgiadis. I'm one of the managers of the motion laboratory here at Gillette Children's Hospital. I'm a pediatric orthopedic surgeon with an academic interest in cerebral palsy and difficulties in [inaudible 00:02:50] in that condition, as well as deformities and limb lengthening procedures in the lower extremity. I work at Gillette, not being from as part of the country specifically, because I identified it as a place where people like Dr. Novacheck were exceptionally thoughtful and careful when they were making decisions. I begged for a job here, and that's where I work.
Cynthia Frisina: Thank you so much. I think that's a great lead in to hearing a little bit from both of you what makes Gillette a unique place. I know personally I have a daughter with cerebral palsy who had surgery at Gillette, which was amazing. It really is a unique place, drawing patients and families, not just from the local area, but actually from all over the world. It would be wonderful to hear from you Dr. Novacheck, what makes Gillette so unique?
Dr. Tom Novacheck: Well, I will underscore what Andy said about Gillette. I'm originally from Wisconsin, wanted to come back the upper Midwest, really didn't much about Gillette at the time. Started there 30 years, I stayed there because the shoe fits and it been very good for me and my ability to take care of patients.
The interesting thing about Gillette is it's quite an old institution. It started in 1897. It was established to healthcare for individuals with children, mainly with chronic conditions, and also to be a teaching hospital to teach the next generation of care providers. It continues to be focused on individuals, again, mainly children with developmental disabilities. So thus, it's not a full service hospital, so it's relatively small, but we are multidisciplinary. As members of a multidisciplinary team, we monitor the effects of musculoskeletal growth on function. If person is having trouble, then we'll oftentimes recommend bracing and physical therapy. If it's more complex, it could be surgery, which unfortunately it's quite commonly necessary for children and young adults with cerebral palsy.
Cynthia Frisina: Thank you so much for that description. I think that's so helpful for families, because oftentimes when they're having issues with their family member who has cerebral palsy or they're somewhere along their cerebral palsy journey, they don't necessarily fully know the differences of the different institutions and what makes a place like Gillette so special. Along those lines, I really want to dive into a topic that we get so many questions about. I know that patients that come to see you, this is a really important topic, and that is the topic of gait, meaning how someone ambulates and walks and how that develops and evolves. Dr. Georgiadis, could you explain a little bit for our audience how that process works? How does gait develop and how then does cerebral palsy impact that process?
Dr. Andrew Georgiadis: Absolutely. Human gait is a super interesting field of study. I think that's what draws many people to both study it and treat it. Human beings are really unique in the animal world. A lot of animals, for evolutionary reasons, they walk on four legs or they're quadrupedal, and they need to be ambulate right away. Human beings are born with this big brain relative to their body. They don't walk, usually for at least 12 months, on average.
What has to happen in the first year or so of life is there's this complex development between different brain, like the size of your brain, your cerebral cortices, or the back of your brain that regulates coordination and balance, your cerebellum, areas of your spinal cord. All of those need to develop together to slowly give you the coordination and control to move your body independently and walk. As I said, that usually takes between nine and 18 months in human beings. You can see because there's this complex symphony of things that needs to be happening all together in typical development, if one of those or multiple of those areas is disrupted, that's where you can have a delay in that walking. Then of course your brain and your nervous system that controls your walking is actually acting on your musculoskeletal system. That can also be different in the condition of cerebral palsy as well.
Cynthia Frisina: Does cerebral palsy also impact strength for people who have it, either as children or as they get a little bit older and bone in joint development? I think many families know that it impacts gait, but aren't necessarily very clear on all of those other related issues and components.
Dr. Andrew Georgiadis: Yes, it does, very profoundly. Cerebral palsy at heart is a neurological condition where something happened to the early developing brain, and that difference really doesn't change over time, but the way it manifests in someone's body can change over time. In addition to those neurological things that I mentioned, particular the muscles themselves are very different in individuals with cerebral palsy.
There's a huge spectrum of involvement, but in general, the muscles and tendons tend to be stretched out. They're longer than typical. They also tend to be thinner, so they have less volume. If you can imagine a stretched out muscle that has less surface area, less volume, it generates less force. Then even at the cellular level, the cells that have to contract within the muscle, they tend to be less compliant. They can't force the muscle to contract as nicely. Then also the material that the muscle is made out of is much stiffer, and there's a matrix within the muscle that tends to resist contraction. For all those reasons [inaudible 00:08:49] to control their muscle, and when they do, be weaker. You have bone and joint differences.
Cynthia Frisina: Does that, what you described, because I think that is such important information for families to understand, is that across all levels of cerebral palsy in terms of more mild to more severe or does those challenges that you described with the muscles in particular, is that only for certain types of cerebral palsy?
Dr. Andrew Georgiadis: There's a huge spectrum of involvement from almost no discernible differences if a child has a very mild case, isolated to one specific part of their body, to the other end of the spectrum where almost every aspect of their body, not just their limbs, but their core and axial skeleton, their swallowing ability, all of their muscles can be affected by that. There's basically that spectrum that's almost not discernible to completely involved. As you mentioned, there are some different subtypes of movement disorders, for example, where those different are less pronounced, where it's more about the movement of the muscle than the architecture of the muscle. Every child is different and every adult [inaudible 00:10:04].
Cynthia Frisina: Thank you. That's a great transition to the next question for you, Dr. Novacheck. This is one that families are always looking for more information about, and that is the most common kind of gait patterns in cerebral palsy. We can see people with cerebral palsy often moving differently, walking differently. A lot of families don't know what that equates to in terms of the common gait patterns. Could you tell us a little bit more about that?
Dr. Tom Novacheck: Sure. Do you have about five years? I can go through it.
Cynthia Frisina: Exactly.
Dr. Tom Novacheck: Yeah. Great question. Thank you. Yeah. The gait patterns are really complicated and they vary depending upon the pattern, as Dr. Georgiadis is mentioning. For example, some people have bilateral involvement. That goes by spastic diplegia or quadriplegia, or a unilateral like hemiplegia cerebral palsy. The patterns have some similarities, but some real differences. In some ways, the unilateral involvement is a little simpler because we can actually identify very discrete patterns and because of that, we can, have more recognizable treatment indications and treatment philosophy.
Things become really quite a bit more complicated for people with bilateral involvement. One thing that is common between the unilateral and bilateral effects are the adverse effects on bone and joint development. Basically, you have to know that children, babies, are not young adults. They do not have the alignment that we have as adults.
What this means is that through the process of growth and development, our skeleton needs to grow and remodel. Things like children are born with an increased femur twist that's during typical development, by three or four years of age is nearly adult alignment. By eight or nine is fully adult alignment, those processes are off. Things like femoral anteversion, that abnormal twist of the femur or tibial torsional malalignment, the shin bone being out of alignment, twisted basically, they're very, very common.
Those things go through many of these different patterns, and because of the increased variability, particularly for people with bilateral involvement, the treatments really need to be individualized. Having said that, some of the common patterns that we deal with are crouched gait, so probably most people know what that is, but walking with an increased knee flexion, and again, the causes of crouch gait are really myriad. It could be strength or motor control, could be balance, could be knee flexion contractures and things like that.
As Dr. Georgiadis mentioned before, if you're walking in crouch for an extended period of time, some of the muscles could be short, but some of the muscles could actually be excessively long. Trying to identify those things and making sure that you use the right treatment is really, really important.
In addition to crouch gait, one of the common patterns is toe walking. A lot of times children, when they're young, they're just starting to walk with cerebral quality, toe walking is really, really frequent. That's a very, very common pattern. Another common pattern that's quite visual is called a scissoring gait, where as you're watching a person walk towards you, it looks like their needs are crossing over one another in kind of a scissoring pattern. These are some of the more common patterns that we see.
The challenge with all of them, every one of those three that I mentioned, crouch, toe walking, and scissoring, is that the causes for them for individuals is very, very different. That's where having a multidisciplinary team, which means that you've got colleagues and friends that you work with, who each have different skill sets and different perspectives can weigh in and communicate to help to the best ability.
Cynthia Frisina: Thank you for that really thorough explanation. You did boil down five years in about just a couple of minutes for our audience. That is helpful. We will actually also be posting more information about this on cpresource.org, as well as this episode and the transcript so our audience can actually read your words later and refer back to them, because I think that will be really helpful for everyone.
You talked about the different gait patterns, and now I would like Dr. Georgiadis, if you wouldn't mind telling the audience a little bit about the challenges that can develop as a result of these three different main gait patterns at both in childhood with children, and then as they become teens, and then as adults? We get a lot of questions about that topic where adults feel that their cerebral palsy is getting worse when we know the brain injury itself is not getting worse, but they may be experiencing other sorts of impact and decline in their function. Could you just talk as through the lifespan, some of the challenges that come up with these different gait patterns?
Dr. Andrew Georgiadis: Absolutely. It's a wonderful question. One of the biggest breakthroughs in understanding the developmental trajectory of individuals with cerebral palsy came about 25 years ago, where children were studied longitudinally over time to see what happened with them and how their abilities developed, and what happened as they grew. What they discovered was that there are different categories of motor independence that individuals have, and that all children, no matter what their final function will be, all children tend to accrue skills until they're about age seven or maybe eight years of age. Then, whatever level of independence an individual has at that point, it tends to be fairly static through the remainder of childhood.
Some people who a little bit more marginally independent, people who rely on others for mobility or require walking aids, a certain percentage of those individuals in the late teenage years or young adulthood will lose some mobility more often or have increased reliance on others. One of the things that we try to think about is who are going to be the older children or teens who might be more susceptible to losing skills or declining, and who might be in danger of losing their independence?
What Dr. Novacheck mentioned, these different walking patterns like crouch gait, for example, if those shapes of the bones do not remodel and change as they would in typical development, and they're leading you to walk in a very exhausting, energy inefficient pattern, what we've noticed over time is that that particular gait pattern, for example, tends to be progressive, tends to get worse time. If that's happening while you're are getting older and heavier, it may put you at risk. In particular, in older children, and in teenage years, we try to be very sensitive to how things are changing. That there's an orthopedic procedure that might maintain independence or maintain skills or prevent decline, that we offer that.
Cynthia Frisina: That is really good information. I think that leads us right into our next question and topic. That is the topic of gait analysis. A lot of families in our audience don't necessarily know what that even is or how that can help their family member or themselves. I would love Dr. Novacheck, if you could explain a little bit about what gait analysis is and why it's so important.
Dr. Andrew Georgiadis: Well, good. This one won't take me nearly as long. I think we've been talking about the fact that you can look at a person and you can say, "Oh, I think their gait is normal, or their gait isn't normal." Beyond that, you might not be able understand why it's not normal. There are many different contributors to why people can have difficulty with gait. It's highly variable. All these things that we've been talking about can be contributors.
Of course, you know, ultimately the question is, if you're going to treat this difficulty with gait, what is the best treatment? Those best treatments do depend upon what those underlying causes or etiologies are. Beyond the visual observation of gait is what we can do with gait analysis. In a gait lab, there's a lot of pretty sophisticated equipment, including video cameras, motion capture markers are applied to the body. Then we monitor the way that those markers move in the gait lab space. Then we can understand how the hips are moving, how the trunk is moving, what the knee pattern looks like and the ankle pattern, and also gives us measures of these twisting bone and joint problems as well as, kind of alluded to before, with scissoring, for example.
The biggest that you can get out of a gait analysis is this analysis of the movement. Technically, that's called kinematics, that's the study of movement and currently it takes going to a gait lab to be able to do that. In addition, there are force plates in the floor, and that to help us understand the joint stresses. I think one of the things that we haven't really quite talked about yet is maybe some of the, so whats. It's not just okay, an abnormal gait pattern, which can be important to people, but it can also lead to excessive stresses through the course of a person's lifetime so that in adulthood it's possible that feet could become painful. Knee pain is fairly common with crouch gait, because we know that the joint stresses are markedly increased compared to normal.
These are things that we can actually measure in the gait lab by combining the motion capture with the force plates. Dr. Georgiadis mentioned about energy expenses. We could also measure the amount of oxygen usage that a person does during a six minute walk test. Then, there's a couple of other things, but of the other things that's important, because Cynthia, you brought it up a couple of oftentimes is about the muscle activity. Dr. Georgiadis mentioned that cerebral palsy is a neurological condition, but it has these profound effects on the muscle function. Measuring the electrical activity, using dynamic electromyography, or EFG, is also part of it and helps us to have an insight into abnormal tone patterns and abnormal muscle activation.
Cynthia Frisina: Wow. That is great. I can already sense all of the questions that we're going to be getting on this topic coming in, because it's one that a lot of families just aren't familiar with. That is really the next question is how does the family know when they should be considering gait analysis either for their child or their family member, or if they're adult is that something that's open to them as well? Dr. Georgiadis, could you talk a little bit about how a family or a person with cerebral palsy would begin to think about whether this is something they should consider?
Dr. Andrew Georgiadis: That's a wonderful question. The short answer is that a family may not know, it may not be able to figure out themselves if their child would benefit from this analysis. Really easy answer would be to say, you have to find a specialist who's familiar with the technology enough to know if it would be worthwhile or beneficial for you. If there's something that's different about someone walking, a child or an adult, it stands to reason that analyzing that gait pattern might beneficial and collecting more objective information would be beneficial.
An important thing to know is that the test does take time and resources, and it's fairly labor intensive for everyone involved, not just the treating team or the analyzing team, but for the family as well, who might have to travel a distance to do it. We should be really good stewards of resources and only employ it when you really think it'd be helpful. The short answer is basically you have to ask your doctor and your doctor, if you're not familiar with it, may have to refer you. If you lived in this part of the country and you were far away, and it wasn't practical for you to come to the twin cities to find out, that's the reason that medicine is changing and you have virtual visits now where I can talk to you three states away and watch your child walk and try to direct you in one way or another. I think that medicine is changing so fast that you'll be able to get an easier answer to this question very soon, if it's not before you right now.
Cynthia Frisina: Oh, that's really helpful. Of course the key question that families then are wondering, of course, is gait analysis usually covered by insurance? Dr. Georgiadis, what you just mentioned about the telehealth option, is that something that families could actually access and make that kind of appointment at Gillette right now? That would be really great for people to know.
Dr. Andrew Georgiadis: The telehealth option is available. There are state regulations about where you can do telehealth. For example, if you lived in the upper Midwest and you lived in any one of eight states in which I have a medical license, I could talk virtually to you. It varies a little bit by what state you're in and what rules there are. We also do things at our hospital, like talk to you on the phone and can get a sense from that without a formal visit, to try and direct you and be good stewards of your care. Dr. Novacheck and I do that routinely, and we're admittedly in a unique situation where there isn't as much pressure on us to do otherwise, where we're basically just told to do the right thing at all times. That's how we comport ourselves. For us specifically, that would be available to almost anyone. I'll let Dr. Novacheck supplement that answer. The short answer is yes.
Cynthia Frisina: That's very refreshing to hear. We love it. That's great. Dr. Novacheck, could you talk about gait analysis? I know it must vary by insurance plan, but in general, is gait analysis usually covered by insurance?
Dr. Tom Novacheck: It's a big question, a very important question. As Dr. Georgiadis mentioned, it's relatively time intensive, and thus it's relatively expensive. It's actually pretty comparable to getting an MRI scan, which would in the range of several thousand dollars. In the scheme of things, if you're talking about using it to help you make the right decisions for a big decision, like a surgery, the surgery and the hospital stay, rehabilitation, much more expensive than that. It's relatively inexpensive in our opinion, to be able to make more informed decisions, to make the "right" decision, and most in particular, to avoid making the wrong decision, which can lead to [inaudible 00:26:15] complications.
The difficulty that, unlike an MRI scan, where you can have a radiologist who can it, and most of us can look at pictures and we can understand the pictures pretty well, the gait graphs are different. Andy did kind of talk about the fact that having somebody trained in the expertise of being able to interpret the gait analysis graphs, to make those right decisions is really, really important. Along with that, though, over the course of the past 30 years or so, since gait analysis has been more broadly available, there is an increasing body of evidence that shows its value.
As such, it's becoming more commonly covered without as many challengers by insurance. In the past it was experimental or for research purposes and things like that. As the quality has improved and the evidence of its value has increased more insurances are covering it. Our insurance companies and the contracts that our hospital has with them work pretty well. Medical assistance in general, which most kids and people with disabilities qualify for, also we don't get big challenges from. As Cynthia mentioned early on, it does depend upon the insurance company. It's variable. What we do is we have a commitment to our patients. Dr. Georgiadis mentioned this a couple times already. Our commitment is to our patients and to doing the right thing. If we think the right thing is a gait analysis, we're going to fight with you for it.
Cynthia Frisina: That is so wonderful to hear. Now that leads right into the next question, Dr. Novacheck, because we know right now people listening are going to want to know how to locate a gait lab, because they're not everywhere. Most people wouldn't know how to begin looking for one or where to go. Could you make some suggestions on how a family might locate a gait lab?
Dr. Tom Novacheck: Absolutely. There are actually some good resources available that you don't have to be members of the societies in order to access. I'm going to mention two websites that you can go to that have maps that show the gait labs. The first is GCMAS.org. That's Gait and Clinical Movement Analysis Society dot ORG. That has, again, a map of all the gait labs that are members of that society. Basically, that's our North American professional society for gait analysis. We share research, we have meetings every year and have collaborative projects.
The other one is the accrediting body for gait labs. That's Commission Promotion Lab Analysis, CMLA, and their website is cm, as in Mary, cmlaimc.org. Again, that site has the accredited labs. Over the course of the past 15 to 20 years, there's been the board of the Commission of Motion Lab Accreditation that has created this pretty rigorous process to make sure and assure the quality of gait labs. There are now about, I just looked at it the other day, I think about 15 or 16 labs across the country that have gone through that accreditation process. Across the country overall, the total number of gait labs is 30 or 40.
Cynthia Frisina: That's fantastic information. For our audience, we will include those links and that information on cpresource.org associated with this podcast episode, so that you will easily be able to find that information as well. Now, I want to change the topic just slightly to talk about something that is really on the minds of many families with family member with cerebral palsy. That is the more common evidence based orthopedic surgical interventions. There is a lot of uncertainty among families. They hear a lot of different things. It's hard to find information or consistent opinions about what evidence based surgical interventions might be for someone with cerebral palsy. It would really be helpful for our audience to hear a little bit about that and what the common surgical interventions that are evidence based are. Dr. Georgiadis, could you talk a little bit about some of those interventions?
Dr. Andrew Georgiadis: Yeah, it's very interesting. I mean, we should always emphasize that many children with cerebral palsy may not need a surgical intervention, but since we have a focus on this, we're going to talk about orthopedic procedures in particular. I think that when you're talking to a medical provider, you have to be very clear as a family or a patient about what your goals are and what's important to you and what's difficult to you. Getting at that and what you want to improve is really important so that the care team can make a treatment plan that addresses what you see in addition to what they see and what they think should be a goal for you.
In general, when we talk about orthopedic surgery in patients with cerebral palsy, what we try to do is support these differences in walking and the shape of the legs for the first six, seven, eight years of life with bracing or therapies or other interventions. Then, if there are differences in the shapes of the bones or there's an abnormal gait pattern that's leading to difficulty, we treat it with something called multi-level surgery. If there are many things to be treated, we do it all at once so that the child only has one recovery or one rehabilitation, and they're not having multiple episodes of surgery and recovery throughout their childhood.
That's the paradigm that we have in our minds to minimize the impact on quality of life and burden for everyone. If we adhere to that, that means that there's less likely that the issues in the legs will recur, because that was done at a later point in childhood and the child's a little bit older and more developed, and we're convinced the differences in the leg shape weren't going to get better. If you look for evidence for something like multilevel surgery and cerebral palsy, there are actually clinical trials that were performed.
One of the things that is really interesting is that we're really good at changing the structure of the body. We can do that with very high success, but what we care about even more, and what families care about even more is did we change the gait of that child? What's interesting is that the gait, if you have multilevel surgery, does change significantly. In particular, there's been a randomized trial in Australia with some of our colleagues that's shown this. Even more important than that, if you have multilevel surgery and you have cerebral palsy, what you care about the most is how does your function change? Not just what does the lines on the graph do, or what does the shape of the bone look like? How does that affect your quality of life and your ability [inaudible 00:33:30].
That also improves after multilevel surgery, but it also takes quite a long time. This big commitment, multilevel surgery, if it happens to you or your loved one, it's important to know that the recovery from that is quite significant. Continue to see improvements for 12 to 24 months after. There's a lot of layers to that, but it's important for everyone to be clear about what are the goals of the intervention? We can reliably change the shape of the body if we need to, or the shape of the muscle if we need to, and then the improvements in walking and then the improvements in your function are pretty predictable, but they take longer to occur.
Cynthia Frisina: That's so helpful. That actually leads right to the next question. If you could talk a little bit about once a person would have, for example, multiple procedures at once or really any orthopedic surgery, can you talk about the importance of rehabilitation after the fact and physical therapy after an orthopedic surgery? Once the surgery is done, is that not that important? It seems certainly like it is very important, but I know families would love to hear from you on that topic.
Dr. Andrew Georgiadis: Rehabilitation is critically important, and depending on the type of cerebral palsy or someone's level of independence, even without surgery, a regular exercise program and strength training, progressive strength training in particular, has been shown to improve function in individuals which are both life involved in the condition. That comes from the surgical studies as well. They noticed that patients who had instead of surgery, progressive strength training had modest improvements in their function with therapy as well.
Even if you're not in your consideration for surgery or surgeries in the future, prehabilitation is very important. Then, if we do a surgery and we don't have the right regimen after [inaudible 00:35:23]. The therapy has to be directed specifically at the ... For example, at our hospital, if you have a certain procedure around the knee, there's a protocol for exactly what should happen in your rehabilitation based on experience. If there's a slight variation in the surgery based principles, the rehabilitation's different. We try to control that as much as we can, not only for the benefit of the patient and the family, but also so that we can be objective. If something isn't going well, or we're not adhering to that [inaudible 00:35:54]. There's lots of reasons that the rehabilitation before surgery, without surgery, and definitely after surgery.
Cynthia Frisina: I love that topic of prehabilitation. We hadn't really discussed that a lot in terms of just information to share with families. Is it normal or common that at Gillette, when there might be a recommendation for surgery, do you often give the patients a regimen or recommendation of what to do ahead of time, in that respect?
Dr. Andrew Georgiadis: I will routinely refer a patient to physical therapy before a major intervention that's upcoming. I particularly do that if the child has not been having an exercise program, or as we know in the last two years, services at school or daily life has been really disrupted so people have not been in the exercise or the PT that they need. Particularly now that's important.
Also, I want the patient and the family to try and establish a relationship with the person that's to be helping them rehabilitate after surgery. I think that's really important because you have to [inaudible 00:37:02] with your physical therapists and your occupational. I think that's really important. There are all kinds of other things that we could talk about. For example, we also do a lot of inpatient rehabilitation. If we have taken a child off of their legs for a number of weeks to recover, that initial few weeks is very important. Rehabilitation team before a major intervention in anticipation of coming after surgery into the hospital to do intensive [inaudible 00:37:28].
Cynthia Frisina: Great. Thank you so much for that information. Now, Dr. Novacheck, I think the good segue there is how can families learn more about interventions, the various interventions that might benefit their child or their family member? I think that is a quest that many families are on and have been on of finding the right sources. That's one of the reasons we created cpresource.org is to pull information together, but when it comes to specific interventions or procedures or things along those lines, what do you recommend in terms of how families can learn more?
Dr. Tom Novacheck: I think I can help answer that in that one of the ways that you can get oriented to the landscape of possible care models or places that you can receive care is going online. I think that that's the first place that many of us go for information these days. That can take the form of things like the CP Foundation and other websites where caregivers and public figures and families are brought together. I think it's oriented like where are people for care? What are the centers that are most experienced and respected? You can get into discussions with other families, find out where they have felt really well cared for.
I think the important thing to emphasize is if you Google cerebral palsy, you're going to find lots of hospitals, sites, and information, but if we're making a commitment to linking up with a particular place, if it were me or my family member, I would try to talk to those who've been cared for at that facility if I could, and get a sense if they really felt cared for, if they thought a thoughtful approach had been employed. I think that is the thing that would make me proceed.
Cynthia Frisina: I know that-
Dr. Andrew Georgiadis: I'll chime into that.
Cynthia Frisina: Oh, good. There. Okay. Great. Good.
Dr. Andrew Georgiadis: Yeah. Sorry, Cynthia. I'll chime in as well. I think the work that you are doing with CP Foundation and the resources that you have is really critical. It's a big advancement. I know that many of my patients, perspective patients, have found value there. I would also just point to people to two other resources. I've already mentioned the American Academy of Cerebral Palsy Developmental Medicine. It is the largest professional society in North America for providers of care for children with disabilities. You can look for resources. As an organization, we are trying to make sure that we're involving stakeholders in all the committee work and the strategic plan. Patients and families are involved.
Cynthia Frisina: There's a physician finder feature on that website. We will include all of that information as well on the show notes for this podcast episode. One other question about resources and information, would families find it helpful to visit the Gillette Children's Specialty Healthcare website for other information as well? Would that be a useful resource for information?
Dr. Tom Novacheck: Well, we do, on our website has some detailed information about our rehabilitation protocols that Andy mentioned before, and also about some of the technical aspects of the surgeries. Then, some of the work that we're doing with you, Cynthia, there with the CP Foundation, we'll be adding some more information over time.
Cynthia Frisina: Yes. We're very excited about being able to build out that information. We know families are really eager to learn more. Thank you for that. Now I want to turn to a more personal question that our families would really like to hear your insight on. That is, I'll start with you, Dr. Georgiadis, on this. What is some of the best advice you can give families who might be at the beginning of their cerebral palsy journey or early in the process? They have a child who's just recently been diagnosed or is young and they're just not exactly sure how to think about it and to proceed.
Dr. Andrew Georgiadis: If you're in that situation where you're just establishing care or you're looking for the first care for your loved one, I would try to find, in your city or state or region, the center that's made a commitment to the treatment of those patients. While there certainly can be biases from any hospital or any particular mode of thought, if there are providers who are seeing patients with cerebral palsy every day, every week, thinking about it all the time, for example, Gillette has had this commitment for over a century, it tends to mean that they are more available to you, that they have resources, that they have more expertise, if you value their personal experience.
It means that you'd be going to a place that use you as another ... I shouldn't say routine, but as the kind of patients they see on a regular basis, as opposed to a place where you are unfamiliar with your condition or how you might respond to treatment. I think experience does matter because the institution or the hospital or the system will have resources, and then the individual providers will be used to taking care of you and will have a frame of mind.
At the same time, if you're not medically conversed in advancing online, so I would have a healthy skepticism for anything that sounds too good to be true. I think, as physicians, one of the first commitments is to not do harm. While we know that there are lots of things we can do to help, it's probably even more important to not do harm. I would read about, stay away from things that bill themselves as miraculous or immediately effective and ... Doesn't want you to know about. It's unlikely that those things are ... Conversation with experienced doctors is the way that you sort that out.
Cynthia Frisina: Yeah. We try to-
Dr. Andrew Georgiadis: You asked about adults.
Cynthia Frisina: Oh, sorry. Yes, no, go ahead.
Dr. Andrew Georgiadis: Oh no. Adults, transition to adult care, is this difficult thing that you just have to navigate in your own environment. The best advice is to try and think about that for an older child or a teen before a rehabilitation physicians can be your point [inaudible 00:43:48].
Cynthia Frisina: Yes. That great information. One thing we encourage families not to do is to rely on Dr. Google. I know often when you just Google, for example, cerebral palsy, what you mostly get first is personal injury lawsuit websites, and all sorts of things that are not exactly helpful. We really want to encourage you how to find reliable resources that will provide very good information to families. Thank you for those suggestions. Dr. Novacheck, this is really our wrap up question for today's amazing episode, but I just would like to have you sort of share with the audience, any other last words of advice, encouragement, and any other thoughts you have about how families can learn more.
Dr. Tom Novacheck: Thank you, Cynthia. It has been a pleasure today. I really enjoyed this, and I hope people find it helpful. We've mentioned along the course of the way that you need to educate yourself to be able to advocate. If you're a parent and you've got a young child who's been diagnosed with cerebral palsy, that can be just overwhelming. The variability of condition can lead to a lot of misinformation. In order to be able to advocate for your child, you need to educate yourself. You also need to understand that there are many unproven treatments that are out there that are widely advertised. To be able to avoid those things and really find a center where you've got a team that can provide coordinated and comprehensive care, again, because this condition of CP is such a mixed bag, varying in complexity, variable nature of the condition and manifestation.
Finding that team that has a quarterback in it, because you will need as the family member, or if you're an adult, you need to be the quarterback of your own care. It's really hard to do that when you don't know the whole playing field. Having a center where we could partner with you to be that quarterback so that you can get your orthopedic care, your physiatry care, your rehabilitation needs, your tone management all in one place, along with bracing so that you don't have ... What I hear a lot from families is that, "Well, I go to see this person and they recommend this. Then I go to talk to my orthopedic surgeon and they say that, and then I get a different recommendation," and so on and so forth. It's really, really very difficult.
I think maybe the other thing that I would like to finish with that makes sense is that treatment is evolving. What we're doing today is not what was done 30 or 40 years ago. The traditional treatments were what was done at the time. We've learned that we can do much better than that. My predecessor, Dr. Gage, saw that when he went to Connecticut to practice in the 1970s, and it's nothing unique to Connecticut. It was the state of the art at the time. He was seeing people come back in adulthood who'd had these traditional treatments, and he saw that we needed to do better.
He helped to usher in the current stage of modern day gait analysis with multidisciplinary care, including tone reduction. Many of those treatments are now available that just were not 30, 40 years ago. Finding a center that's academic, that's up to date and use a data-driven approach is really, really so important. We need to be able to have thoughtful treatments that don't cause harm, and that can help a person do better by treating the manifestations of the condition. Cynthia, thank you. Thank you so much.
Cynthia Frisina: Oh, I just really love those words, what you just described, because it is exciting to see that there are advances being made, and that the treatment today, and the options today have advanced from what they were 30 years ago. Many families aren't sure that that was happening. It's really wonderful to hear you explain that that actually is the case. I just want to thank you both for your time today, taking time out of your busy schedules. We so appreciate it. Dr. Novacheck, Dr. Georgiadis, thank you so much for joining us and being our guests on Let's Talk CP. We also want to thank all of you for listening today. This episode is made possible with the support of Gillette Children's Specialty Healthcare, and we look forward to next time.
Jason Benetti: Thanks for joining us for this episode of Let's Talk CP. I'm Jason Benetti, CPF ambassador and sports television announcer. If you like our show and want to know more, please visit our new CP resource page at cpresource.org, where you can listen to all of our episodes and subscribe so you'll never miss a show. While you're at it, if you found value and Let's Talk CP, we'd appreciate a rating. Please tell a friend or another family member about the show to help others and increase cerebral palsy awareness and education. Be sure to tune in to Let's Talk CP for our next episode.
Speaker 5: This podcast represents the opinions our guests, and the content should not be taken as medical advice. Each person and situation is unique. Please consult your healthcare professional for any medical questions.