Jen Lyman (00:00:04):
Welcome everybody to the CP Connect event. This is the second of our CP Connect series, orthotic management best practice across the lifespan. And we've got some amazing guests today. I am Jen Lyman. I'm the director of clinical recruitment and community resources for the Cerebral Palsy Foundation. And I will let each guest introduce yourselves. I'm going to try my best during this to moderate and also make sure that the questions are getting answered as we kind of go along. And also if I know that questions might be coming up in the discussion, I will certainly let you guys know as well. Why don't we move and do some introductions here. I'll do the CPF folks who ... Oh, I guess a little bit more about me. I'm also a mom of a 21 year old. He is a GMFCS4. So he's non-ambulatory and he wears orthotics, he wears custom AFOs.
(00:01:16):
And I'll be honest with everybody that's watching this. Our experiences with orthotics have not been the best. We've not found that our goals have matched the customization. And so I'm really excited to learn from you all about how to actually set goals and get orthotics that are appropriate for what your purposes may be and also that have the right fit so that people will actually wear them and use them appropriately. So that's a little bit about me as well. Nicola, I know I'll move to the other mom on this panel.
Nicola Welford (00:02:01):
I am the community communications officer here in Ireland. So I am a base that some of you might know in Ireland already. And I'm also a mom of an 11-year-old girl with quadriplegic cerebral palsy. G of FCS level four. She is non-ambulant as well. She drives a power chair and we have used AFOs all our lives since she was born pretty much. We're probably about age nine months onwards. We've had a reasonably okay journey with them, but I think it's become ambulance as well. So we haven't had the same issues that other families might have when you're trying to get moving with them. But our journey has been reasonably okay.
Jen Lyman (00:02:40):
Katy.
Katy Gaastra (00:02:42):
Hi everyone. My name is Katie Gaastra. I'm coming here today representing CPF but also the patient community. So I have left hemiplegic cerebral palsy. I've worn AFOs on and off throughout my life. I've worn a specific device called the XOSIM, which I'll be happy to share more about today for the last 10 years. And that's just really been the way that I've managed my CP over my adulthood really.
Jen Lyman (00:03:16):
All right. Declan, let's go to you next.
Declan Sweeney (00:03:19):
Hey, guys. My name's Declan and I am an orthotist. I work in the lovely part of Ireland, the west of Ireland in Limerick. And I have been working and providing orthotic services for children and families who have CP for over 20 years now. And I just say I'm very passionate about what I do. My focus of my approach really is on providing client-centered interventions and family-centered interventions first and foremost.
Jen Lyman (00:03:57):
And finally, last but not least at all, Elaine,
Elaine Owen (00:04:01):
Owen. Hi. I'm a physio with training in orthotics and gait analysis. I've been a physio for 50 years running services for childhood onset disability for children and adults in Northwest Wales. And also I have lived experience of caring for a child with disability now adult.
Jen Lyman (00:04:25):
So we're going to get started. The first part of this, we want to talk a little bit about orthotics and how they fit and some of the kind of considerations across GMFCS levels, or how the needs might differ according to GMFCS levels, maybe some misconceptions or who needs orthotics and for what, and then kind of how you support or what the balance is between support, alignment and function. So I want to start with Declan. If you could kind of walk us through how you approach orthotic recommendations differently, I guess. For somebody who might be a GMFCS 2 and also maybe we should step back a little bit and for those who might not be familiar with the GMFCS, somebody who is a one is ambulatory and it moves all the way up to a five. Someone who is non-ambulatory, completely dependent. Orthotics are usually prescribed for people who are GMFCS 2s, threes, fours, and fives.
(00:05:34):
I think there are GMFCS one. Y'all correct me if I'm wrong, but more typically you'll see people two through five wearing orthotics. And so if you aren't familiar with the GMFCS, let me know. I can add a link in the text box. But yeah, Declan-
Declan Sweeney (00:05:54):
Yeah. So I mean, I suppose we're looking at mode of function of two versus motor function of four. Let me just outline really before considering the orthotic approach. Let's look at the presentation of each of these groups. So a child with a motor function of two can usually walk with limits. They can walk indoors and outdoors, climb stairs using a railing. They may experience some difficulty walking in uneven surfaces or inclines, reclines or in crowds. They may fatigue. They may present with gait deviations such as an increased forward or backward bend in their knees, or they may walk on their toes. So I suppose for these children, we start with function. What can they do? What is limiting activity? The orthotic design really needs to promote function through assisting with stability, improving how the foot, knee and hip moving gait or walking. Are we trying to reduce toe walking?
(00:06:51):
Are we trying to improve how the knee passes over the foot? Are we trying to stop the knee from bending backwards or hyperextending or stop the knees from bending forwards or crouching? I try to keep the orthotic devices as lightweight as I can and as stiff or rigid or as flexible as needed to promote a good walking pattern. But another important point is really is identifying these functional activities also. So for example, I have a child who uses grapples, which are splints that extend above the knees and these are designed to keep the knee straight when he walks, but he loves sports and he plays in goals. So really there's no way that these orthotic devices are going to be useful for him for playing sports. They're not really going to help him and they actually might impede his ability. So in this situation, I made a small pair of orthotics that just extend above his ankles to give some support to his feet, but not overly restrictive and impact his ability to playing goals in this situation.
(00:07:56):
So function is important, but so is activity. A child at GM4's walking ability is really limited even with assistive devices. They may use a wheelchair most of the time and may propel their own para wheelchair. They may participate in standing activities. They have assisted transfers, greater tone involvement, more proximal or higher weakness in the trunk and upper limbs and they may have increased risk of hip displacement in the tractor. So the key questions we might ask are, can the child tolerate an upright posture? What is the foot position? What is the knee position? What are the ranges like? Can the child stand safely for bone health and stretching? We often use orthosis to stand to support standing programs, transfers, wheelchair, and sleep positioning. When we use orthotic devices, we need to consider how much tone is present, what is the risk of skin breakdown? Some of these children have very bony anatomy, which will impact the tolerance of wearing an orthotic device if used.
(00:08:59):
So ultimately really, I suppose a brace or splint that aligns a limb segment really well, but cannot be applied by a parent or a care is not useful.
(00:09:11):
And that goes to an orthotic device that aligns the limb really well, but if it can't be tolerated for meaningful periods during the day or night, it's not useful either. So in terms of mode function of four, orthotics are rarely standalone. They're coordinated with standing frames and sleeping systems and so forth. But getting back to family goals, these are going to differ. So with a motor function of two, the family goals might be, can my child walk better and keep up with their peers in school? Can we reduce falls? Can they walk for longer periods without fatigue? Whereas a motor function of four family goals might be, can Stanley be easier? Can transfers be made easier? Can we prevent deformity? Can we improve seating posture? Can we reduce pain? So the bottom line really is for a GMF-CS2. I ask how can I maximize efficient independent movement while preserving freedom?
(00:10:08):
But for a GMFCS 4, I might ask, how do I create stability, comfort, safe positioning, and sustainable function across the entire day? The diagnosis might be the same, but the orthotic philosophy would be fundamentally different.
Jen Lyman (00:10:22):
Yeah, I can absolutely see that. And I do think I've seen that there are some people in the chat that weren't familiar with the GMFCS and I will send a link as well so you can identify what GMFCS level your child may be. It's a pretty simple visual pictorial so families can easily determine what GMFCS level their child is. Elaine, I know we are going to get the next part of this is really going to be about how to set goals in the pictorial tool. As far as just overview, generally speaking, I think Declan really hit on it. Did you have anything else to add about goals that might drive orthotic decisions at different or typical goals maybe that might drive orthotic decisions for different mobility levels? Generally speaking, before we get into more specifics.
Elaine Owen (00:11:24):
Yeah. So later on we're going to look at a pictorial tool that is for goal setting and it was designed on sort of inside out approach, which I found help children and families and clinicians really trying to decide the goals. So there's goals like the inside, the bones and the joints and then the next layer is the muscles and then the next layer is the brain that makes the muscles work and then there's the activities and the participation and then there's pain and then there's tissue viability. So we'll talk about the pictorial tool later, but all those sections, all those part of the pictorial tool are relevant to all mobility levels. So we'll talk about that later. Yeah.
Jen Lyman (00:12:25):
Thank you. And Katie, I know you've got some pretty, I think, bionic braces that are pretty cool. Can you talk a little bit about your setup and what level of support it provides and maybe just for a moment a little bit about what you had as a girl versus what you have now?
Katy Gaastra (00:12:49):
Sure. Yeah. I'd be happy to, Jen. So I actually, I'm not wearing it right now because I wanted to bring it in for a litle bit of show and tell. I know it's not really fitting into my whole screen here, but it's a carbon fiber ankle for orthoses with a kind of second section that goes above from the calf cuff to my thigh. So kind of manages my knee stability as well. So I can wear those in either like one or two parts and it's called the XOSIM. By definition, it's considered actually a hybrid prosthetic orthotic device. It's meant to be like people who don't have neurological conditions, but maybe a severe limb injury, they actually wear it as what's called a limb salvage device and I wear it mainly to manage my pain and alignment as well because of my cerebral palsy.
(00:13:50):
And so my prosthetist would say it does much more than the typical ankle foot orthosis and I would have to agree with them. It provides like the way I experience it, it really absorbs the impact of my body weight, which I think was key for me in getting it because it takes away essentially all of my bone pain. So I'm not feeling a lot of the impact when I'm moving. And then as far as just what I used before the XOSIM, I really haven't worn a traditional AFO since I was a young child, probably as young as eight years old. So I went from like eight to 10 years old to early adulthood to not really wearing any support while being extremely active. So I know that you had mentioned someone, one of your patients playing soccer, I actually grew up playing community soccer and could have benefited from probably that smaller ankle portion.
(00:14:49):
And so what I appreciate at least about the exosym is that while it is rigid, like most ankle foot orthosis, it does provide my body that kind of like functional support to enable my body to like essentially have the momentum and the power that my limb otherwise wouldn't have. So I think that's what kind of separates it from a traditional orthosis. We've got some-
Jen Lyman (00:15:14):
Can
Declan Sweeney (00:15:14):
I just come in there?
Jen Lyman (00:15:15):
Say that again.
Declan Sweeney (00:15:17):
Can I just come in there?
Jen Lyman (00:15:18):
Yeah, absolutely.
Declan Sweeney (00:15:19):
I think that's amazing. And I think as well, I'm a prosthetist as well. I don't practice prosthetics, but back in the day I did. And like typically there was always a lot of innovation in prosthetics and investment in prosthetics and we can see as well with the design of some prosthetic knee joints for people who are like above knee amputees, like that technology is quite phenomenal and we are seeing some of that technology being brought into the role of orthotics, particularly with orthotic knee joints. So it's quite exciting really. Some of the technology is quite sophisticated.
Jen Lyman (00:16:02):
Could you guys define for me the difference or describe what the difference is between orthotics and prosthetics?
Declan Sweeney (00:16:09):
Yeah. So if I can come in there again, so orthotics we design braces or supports to fit over a limb segment to provide structural support and improve function. Prosthetics are for people who have an amputation, so they might have a below knee amputation and then you'd fit a prosthetic device that would fulfill that part of the limb segment if you like then as well. So it's an artificial limb really.
Jen Lyman (00:16:35):
Okay. Okay. Thank you. I just wanted to make sure that everyone was on the same-
Katy Gaastra (00:16:41):
But yeah, to respond to your point, just I think to me, this is the most innovative orthoses I've seen and I feel really fortunate to have access to it because most people don't.
Jen Lyman (00:16:52):
And I've got some great pictures. I'll have you comment later a little bit more about your journey with this, Katie, and share some of the pictures of you walking with and without it as well. And yeah, it's pretty cool. Nicola, as far as your experience with your daughter and when you were told that she would need AFOs and what you were told about her needing AFOs, did that match the reality of her AFOs and how she's functioning with them now?
Nicola Welford (00:17:35):
I suppose at that stage, Jen, we were so naive and quite informed in the early journey that we were trying to still gather things out with CP and navigate the journey. So we just did everything we were told to do as you do. But I suppose what we saw in the early days when she got them was to keep her put in good position to prevent any deformities, to help with tone, to avoid surgery and weight bearing was a big one. So she wouldn't have been able to use her standing crane. She wouldn't have been able to take steps because she needed AFOs to do those tasks. So for us, it was to do with tasks and function. Yes, in the early days we had hoped for mobility and we got a little bit not independent, it would have been supported, but again, she wouldn't have been able to do any of that without AFOs on in the first place.
(00:18:26):
So her legs and her feet, her ankles on the roll just were never enough for her, unfortunately.
Jen Lyman (00:18:33):
Yeah. I think we've had a similar experience in some ways with our family or with my son, yes, from a support perspective and ensuring to preventing deformity and for standing and transfers, I think they've been very helpful. But from a more functional using his gait trainer or riding his bike and some of the other things, I felt like they've been too restrictive and have actually not been as helpful as I would have as I expected, I think. And still kind of working through what that looks like or if that's a possibility for him. Maybe it's looking at some of the more innovative types of AFOs that would be less restrictive than what he has. Speaking of the different types, we're talking about AFOs, but there's also CAFOs and other systems. Katie's been talking about one. Can we talk a little bit about what the different types are and maybe some of the emerging technology like Katie's been mentioning.
(00:19:50):
I know that I've also been following some that are 3D printed and I feel like what we see as a family, we get this cast put on or somebody molds to my son's leg and then they make these plastic. One particular brand, it's just a custom plastic orthotic. They don't seem very high tech or anything like that. Declan, could you maybe go through kind of different, further expand on the different types that are out there?
Declan Sweeney (00:20:22):
Yeah. I suppose for me, what I use in clinical practice really, I tend to use everything from molded foot orthosis, super malleold orthosis, which are plastic splints that just extend above the ankle. I use posteriorly spring ankle foot arthrosis, ankle blocking ankle foothosis, gram reaction ankleothosis typically. Again, the type of device that I would prescribe is really relates back to the function, what am I trying to achieve in certain situations I would want to block movement if you like, or in certain situations you may want to facilitate movement, but then you need to just understand what the child's activity levels are and you might need to maybe make two different types of devices to facilitate two different types of activity.
Jen Lyman (00:21:09):
Interesting point.
Declan Sweeney (00:21:10):
And with regards to materials, most commonly I would use in orthotics, high temperature thermoplastics, such as
Elaine Owen (00:21:20):
Polypropylene
Declan Sweeney (00:21:20):
Or homopolymer and that's what perhaps 90% of the orthotics are me from. Carbon fiber is used for some custom ankle foot arthosis and off the shelf arthosis. All of these materials have advantages and disadvantages. So carbon fiber, for example, it's an excellent material. It's extremely lightweight, it's extremely rigid, but it's very difficult to adjust or heat it or molded to accommodate growth in a child's limb in the same way that you could do with cold polymer or homopolymer. But certainly for adults, the carbon fiber works well. Again, there are a number of ways we can influence how an orthotic or how ankle footathosis functions. So the material selection is one factor, but we can look at the devices trim lines, whether for an ankle foot orthosis, if they pass in front of the ankle or behind the ankle, or whether they pass in front of the big toe or the baby toe on the footplate, can add reinforcements onto the device and we can look at the soles of the footwear, how this can influence how the device functions.
(00:22:25):
I know Elaine has done some fantastic work on this. So ultimately the design of the device and the footwork combination relates back to what am I trying to achieve, what am I trying to improve in gait and what my functional goals are. Look, there's no doubt that the technology is changing with the advent of 3D printing.
(00:22:50):
I think that's exciting. I will say there's two limitations in my mind. Firstly, we need to be very mindful about the plastics that are used. There needs to be a little bit more work done on that. We are starting to print polypropylene, but again, it is something that we particularly when these high torques are being applied through these devices, we need to make sure that the materials that we use are absolutely robust and safe. Secondly, to actually scan a foot segment for a child with high tone can be quite problematic. At the moment we may use fiberglass casting tape or standard plastic paris. We have the ability to manipulate the limb segment and again, that's quite useful. So I suppose that is, like I say, a limitation that we are trying to work around.
Jen Lyman (00:23:47):
Thank you. Katie, for some of the different, I'm just thinking about you wearing different ones through your life and the different materials that have ... What has your experience been with wearing different types of orthotics and the materials that were used?
Katy Gaastra (00:24:06):
Yeah. I think like many children with CP who grew up to become adults with CPR experience has been less than positive. With AFOs, usually all I can remember is it feeling restrictive, uncomfortable. I think the discomfort and the ... I grew up in Southern California, a really warm climate at the beach. And so dealing with the heat and sand and shoes and kind of all the variables that you have to factor into wearing these devices and integrating them into your daily life. As a child, I was just opting out because not only that, but I looked different from my siblings and my friends and I didn't like the way that it made me stand out. And so there's that social factor and then you get ... By the time I'm 24 years old, I've had a few pretty serious injuries that limited my mobility more than ever before at a time when I was wanting to do more than ever before.
(00:25:13):
And I discovered the really by happenstance. My dad was reading Men's Health magazine and there was a future story about it and the typical patient was like someone ex- military recovering from a severe injury or it was a lot of like young men actually
(00:25:33):
And so I didn't see myself represented, but I read his story and he had spina bifida, this young man. So similar congenital condition and I was like, wait, I think this is kind of what I need.
Elaine Owen (00:25:46):
This
Katy Gaastra (00:25:46):
Is my ticket to just better mobility, pain-free movement. And so I kind of without really doing much I went for it and I was like, okay, this device was made similar to other AFOs. I was casted from the thigh down, but it's extremely customized to my body and the way my foot, the anatomy of my foot. And so I think that's what to me has made this device stand out is it's comfortable, number one. I kind of expected this period of like, okay, I'm bracing for the discomfort and getting used to wearing it, but I was immediately surprised by how easy it was to put on. And that's kind of the biggest factor. When I think about any assistive devices is like, can I integrate this into my life? Is it going to actually support me with the goals that I have and the needs that I have?
(00:26:55):
So it was checking all of those boxes for me
Jen Lyman (00:26:58):
There. I was thinking, I saw somebody in here mention that their AFOs have Velcro and I was like, "That's actually one of the most irritating things about the AFOs." My son has the Velcro. Does that one have Velcro as well?
Katy Gaastra (00:27:11):
Those actually has a lot of Velcro, but you just kind of learn to live with it obviously I don't know.
Jen Lyman (00:27:18):
Has anybody improved? Declan, you have any ideas or resources for those who are
Declan Sweeney (00:27:25):
Not? Orthodists love Velcro. Well,
Katy Gaastra (00:27:30):
I will show you, I have a friend who uses those kind of like Cobra, I don't know what they're called, but like they to tighten down the device.
Declan Sweeney (00:27:40):
Actually, I can't think of, there is a type of Velcro that's used that doesn't it just adheres to, you have one piece of Velcro and another piece, it's a different type of Velcro and that's actually quite good. It doesn't catch everything else, I suppose all clothes and bits of fabric that people have used. But I think the key is when the device has not been used, like close the Velcro and then the device has been used obviously. So it just prolongs the Velcro's lifespan and stops catching bits of cat hair and dog hair at home.
Jen Lyman (00:28:11):
Exactly, exactly. Nicola, have you had any experiences with one type of AFO versus another type of AFO or have you all been sticking with the same type since your daughter started wearing them?
Nicola Welford (00:28:27):
We've kind of been on the same type since my daughter started wearing them, but it has changed slightly no overtime as well. So we've had your typical plastic AFO. We had a heel, then we've had no heel, now we're back to a heel. We've had toe straps, no toe straps, now we're back to toe straps.
(00:28:47):
And other than that, the main piece that's changed was an extra insert has been used now. So it's like a separate piece that you attach to the AFO that you put on the ankle part first, which kind of gets the bend in the ankle better and then that pops into the main AFO. Now we find them really good and that needed to be introduced just because the way the tone was working and that has really helped keep the ankle in good position as well. And they're relatively easy to get on and off. They're better than when the plastic was molded in flat shape. And I think the piece that Declan mentioned about getting on and off is important because for us it's the last thing before you go out the door to put on is the AFOs and you're in such a rush to get them on.
(00:29:29):
Your child is stressed because maybe they don't want to wear them or they know we're rushing to go somewhere and then the tone sets in and once the tone kicks in, you're at nothing putting on the
Elaine Owen (00:29:39):
Eight
Nicola Welford (00:29:40):
Holes. So I find that even if we're in a moment like that, I just stop and we pause and I say, right, we'll come back to them in a few minutes because getting them into a good position when she's relaxed means I know that she's going to hopefully be comfortable for the day and not squashed or skin pinching and things like that. So I I definitely would consider that to be an important tip is that the child's relaxed when they're putting them on and that you're getting them in a good position when you're putting them on as well. And in our case, our daughter's nonverbal, so it's harder to get feedback from her if something's hard than her usual. So that's one piece. So for us, no major changes. And again, just the one set, not a different set for activities, it's just the one set.
(00:30:21):
But look, we just weren't as active as other children level four. So it was just keeping things in equal condition was really the biggest goal for us. Yeah.
Jen Lyman (00:30:33):
We're very similar. My son wears very similar AFOs it sounds like with the insert and then you put the rest on over it. And when he's not wearing his AFOs, we actually have some shoes that we really like that are, I think they're manufactured in Portugal or the UK. They're called Piedro shoes. And they provide that if we're just hanging out at home and he's sitting in his wheelchair and we don't need to worry about his ankles so much or the extra support, I found that those are a nice kind of hybrid for hanging out time and also actually when he's using his gait trainer, but we can get to that a little bit later and sticking on the same topic with comfort and proper fit. And we've got a great question here about recommendations for socks to prevent skin breakdown and sweating. Declan, are there some, let's maybe get into this a little bit about are there red flags or things that we should be watching out for that indicate a fit problem?
(00:31:43):
Especially for those folks that are nonverbal and if they can't tell us they're hurting, what do we look for?
Declan Sweeney (00:31:51):
Well, just on a general note for parents, you need to ask the question, firstly and foremostly, is the orthotic device causing any marking after you can see it after where marking that's red and stays red for 30 to 40 minutes when the device is removed is a bit of a red flag. We need to ask, does the device provide sufficient correction to the structure or does it attempt to over correct the structure? Both of these really can result in marking. If you're attempting to force a foot and ankle into a splint set at 90 degrees, a 90 degree position, but you can't get the foot into that position, this is going to cause marking and discomfort. Or if the AFO allows, say for example, a foot to move sideways when warn this is going to cause marking. If the foot's not properly controlled, we need to ask, does the device actually improve gait and can the device, and this is really important.
(00:32:51):
Can the device be independently applied by the family and can we achieve gray correction? We can achieve gray correction, but it's important that families can replicate this so that you can provide a really superbly corrective device, but ultimately if the family can't put it on, it's meaningless really. So that's an important feature. I know particularly in my clinic, obviously all clinicians should be doing this. We get the parents to put the device on and take it off. And if they can't demonstrate that they can't do that, then we can't really issue the device because obviously there's a safety concern there.
Jen Lyman (00:33:35):
And that's actually never, nobody's ever done that with me. Nobody's ever said, "Oh, demonstrate how you do this.
Elaine Owen (00:33:43):
"
Jen Lyman (00:33:45):
Are there some tips to putting them on and taking them off that you could give families? And as we are, I definitely, I know with us, we say easy body. Just take a moment, take a deep breath.
Declan Sweeney (00:33:59):
Yeah, exactly. I find sometimes some of the kids I see try not to get them talk because that can induce tongue, which can be hard to do if you're rushing out the door in the morning. Keep the knee bent, make sure that a sock is properly applied, make sure there's no creases in the sock. If you're looking at a sock, making sure it's a cotton sock, that's best to absorb and weak sweat away. Make sure the sock is a long sock so you don't have any plastic next to the skin that's important. So keep the knee bent and position the heel into the back of the splint.That's the most important characteristic. You have to get the heel at the back of the splint then and then make sure the splint is a security fastened that it's snow, but not overly tight because friction can be quite detrimental really.
Jen Lyman (00:34:51):
Yeah. And there was a question here. Somebody here was mentioning compression socks, but Katie, you had a comment.
Katy Gaastra (00:34:57):
Yeah. Socks-wise, I've actually had a really good experience with Marino wool pretty all year round. They have lightweight to heavyweight. They're typically like hiking socks is how I would describe them. So there's brands like, they're a little bit on the higher end side, but darn tough as a US-based brand that I love and Smartwool. They run upwards of 20 to $25 a pair. But if you take care of them, you can not only rewear them a few times in a row because they're really breathable if you let them air out and you can throw them on the next day and there's not going to be any odor and they last years.
(00:35:39):
So to me, it's worth the investment. And I think to echo what Declan was saying is like, and Nicola as well is take your time putting it on. I know it's extremely hard to do with CP, but to relax your body as much as possible. I will physically sit down, put pressure on my thigh to get my heel in as good of a position as I can before I strap my foot in. And then I kind of stand up and I put my shoe on and I make sure everything's feeling good before I walk out the door because if it's not, I'm going to notice it throughout the day.
Jen Lyman (00:36:17):
That's really good advice. I definitely appreciate it, especially with the ... I live in the south and you would never think that wool would be something, but I totally agree with you.
Declan Sweeney (00:36:30):
And just to say as well, ask your authors just to put little vent holes in the AFOs. That's a really easy thing to do and it's relatively effective as well.
Jen Lyman (00:36:40):
That's a really good point. Elaine-
Katy Gaastra (00:36:42):
And to the compression point. Sorry. Sorry to ... I just know that someone brought up compression socks and I really only use those for air travel if I'm going to be on a plane for a long period of time. But I do know that people in our community have had a lot of luck with specific types of compression socks. I just think you need to find the right brand and basically the weight for your body.
Jen Lyman (00:37:06):
We actually, my son wears Bombas compression socks and it's a nice brand again, a little bit on the higher end price wise, but it's a wool sock and they do just offer the lighter compression, not super compressive, but I've definitely found ... I think they help with proprioception as well. So I think for him it's been good. Elaine, did you have some advice for families as we're looking for proper fit for our orthotics and what you've seen?
Elaine Owen (00:37:43):
Well, basically I always say to families and clinicians basically get ahead. So always get an appointment for the next orthoses ahead of time. So you've always got the previous orthosis to fall back on if there are any fit issues. Of course, how it fits is all important at the assessment. Yeah. As Declan said, you've got to choose exactly the right alignment, how are you aligning the segments, how you're aligning the. And that all depends on what the goals are. Yeah. So the goals you've set with the families. So families need to understand that. They need to understand what alignment like Nicola was talking about, we've had a heel and we haven't had a heel. I think what Nicola was talking about, the ankle alignments have been different here between the shank and the foot. They've been in plantar flexion or plantar brand year. So families need to ... When you're talking about hip orthosis, any other cases, it's going to be very, very important that families understand the alignments that are being put into the orthosis.
(00:38:56):
And then I always just say to families, remember you're the customer, but you're the customer and therefore you have the rights of the customer. And I would often say to families, stay in the building or go out for walks, hang around, yeah, hang around, go do something to check it's all okay before you go, because otherwise you've got to come back, it's time off work, time off school. So hang around to make sure it's all absolutely fine before you leave. If you've got any feeling that you think it's not okay, it's not going to work. You can always refuse to take it and ask for another one, but also it's worth saying then, "Well, I'd like to book an appointment in two weeks that I can come and I can get it sorted out and get it sorted out. And if I don't need it, I'll cancel it.
(00:39:52):
" So in a way, got to be very tough because fit is one of the most important
Jen Lyman (00:39:58):
Things.One of the things that I was thinking about when you were talking just now and something that I find we've had issues with and I think we may have solved it this year, but the shoes that you wear on top of your orthotics and for years we were buying shoes that were way too big and then trying to take out the inserts and stuffing my son's feet in them and then he's got these giant feet that are too big for the shoes. And now I feel like there's brands like Billy Footwear and things like that that-
Elaine Owen (00:40:34):
Well, the important thing for shoes is that the shoes should be the correct length for the child's height.
Jen Lyman (00:40:43):
So what does that mean? How do you-
Elaine Owen (00:40:45):
Well, there's a chart I can give it to people if you want. You read off the child's height and for your height, you should have a certain length shoe. And that's a certain length foot you should have for your height, yeah. So your shoes that go with, particularly with AFOs, of course, should be the optimum length for the height. Yeah. So they shouldn't be much bigger than they would be for the height and they shouldn't be much smaller, particularly for children who have some walking difficulty because children with cerebral palsy often have a smaller foot. And so often you do need a shoe that might look a bit bigger than their foot because they've actually got a small foot for their height, but it's really, really important to have their shoe that is the correct length of height, not much bigger and not much smaller.
(00:41:37):
Yeah. So that's a good way.
Jen Lyman (00:41:39):
So it's not the size of their foot, it's their size for height.
Elaine Owen (00:41:44):
Yes, because children with cerebral palsy often have small feet. Often it's noticed maybe KT's notice or something that if you've got hemiplegia, one size, that foot is smaller than the other foot, yeah. But in diplegia and quadriplegia, often two feet are small for the height, but they're not noticed because they're both the same size. Yeah. So I've got a chart people can have if they want where you read off the child's height and you see what size foot and what shoe size you should have for your height.
Jen Lyman (00:42:18):
That's really helpful. Again, at the end of this, once we've got the webpage up, I'll make sure that that's a link on there as well or we'll include the PDF for that because that's the first I've ever heard of that and it's been 21 years. I love that.
Elaine Owen (00:42:38):
Yeah, no, it's very important.
Jen Lyman (00:42:43):
I've got a challenging question for Declan and Elaine, how do you guys handle any disagreements between these recommendations between the physio and the orthotist?
Elaine Owen (00:42:57):
Well, I have a great phrase. The parent owns the child. The parent owns the child, yeah. We don't own the child, parent owns the child and it's around really the next section, which is around the goals that are set where the parent and the child are centered. They set the goals. The physios and the autists and everyone has to work out what's the most optimum orthosis to achieve those goals. So there may be some discussion around what's the optimum orthosis to achieve the goals. But the first question is, what's the goal? What we're trying to achieve that the family and the child have decided on that, what is their goals? Yeah.
Jen Lyman (00:43:42):
Jaclyn, did you have any thoughts on that? No,
Declan Sweeney (00:43:44):
Again, I just agree the families and what we need to try and do is, and our practice needs to be evidence based. I think that's important and I'm fortunate I have very good working relationships with the physios that I work with. I've known them for a very long time and with respectful conversations, but again, it does have to go back to really listening to the families and trying to fulfill their objectives and again, trying to do what we do using an evidence-based platform as well.
Jen Lyman (00:44:21):
Yeah. Thank you. We have a few questions that are surrounding ... We've actually got a few questions in advance of this and then I'm looking in the chat and I'm seeing some, they're all sort of related, but how often should young children be getting new orthotics? And obviously there's the factor of how often your insurance is going to cover it versus growth. Declan, could you maybe answer that?
Declan Sweeney (00:44:49):
How often should a child
Jen Lyman (00:44:50):
Get- How often should a young child, like a young child who's growing-
Declan Sweeney (00:44:55):
If they grow or if their needs change.
Jen Lyman (00:44:58):
So
Declan Sweeney (00:44:59):
Can we put a timeline on that? It's very difficult to ...
Jen Lyman (00:45:04):
Yeah.
Declan Sweeney (00:45:07):
We should be seeing our younger children every six months, at least for a checkup or for view, just to monitor
Jen Lyman (00:45:12):
Them,
Declan Sweeney (00:45:14):
But really a device needs to be replaced because their needs have changed, their foot has grown, or the device itself may be worn really.
Jen Lyman (00:45:24):
Yeah. Is there growth built into AFS? There should
Declan Sweeney (00:45:28):
Be, yeah, there should be. And we have the ability, as I said, when the device is made from a thermoplastic material, we have the ability to heat model to accommodate growth to a certain extent.
(00:45:40):
We can't do significant adjustments, but as Elaine has alluded to, it's important for families to make sure that they're ahead of themselves with regards to growth to certain things that I would look for and advise parents about what to look for. If the toes come to this end towards the edge of the splint or within 10 millimeters at the end of the splinting, they need to be contacted or if there's any noticeable marking or if the actual length of the device appears shorter. But it's a case of just trying to be proactive rather than reactive, I think that's important.
Nicola Welford (00:46:16):
Can I just come in on that as well then? Yeah,
Jen Lyman (00:46:18):
Please.
Nicola Welford (00:46:19):
The Irish contact.
(00:46:21):
Yeah, because obviously myself and Declan are both based in Ireland and what Declan is saying, that's from his lens and from his perspective, which is 100% correct, but then from a parent's perspective, you're trying to keep the system. So you're trying to get in ahead of yourself with your child to make sure, because ours would be funded by the HSC. We don't normally have to use our own private health insurance funding. It is funded, but there can be delays with the funding processes, unfortunately. So I remember years ago when we were on the early journey AFOs, you literally had to leave the appointment with your new AFOs and there and then you made your next appointment for the funding to be secured by your physio and your local team so that by the time that was approved, you were ready for your next payer and the money was there waiting as well for them to be cast and your child wasn't left without your AFOs, our AFOs for too long.
(00:47:11):
So you were always trying to fight the system and leave the system not as bad, but we're not much better. And it depends where you live in Ireland as well when it comes to extra access to funding and to care as well. So parents in Ireland are trying to beat the system all the time as well as be realistic and stay ahead of their child's growth and be ... When you're seeing your child every day, you don't always see those toes creeping up and popping out as quickly and then all of a sudden there's a panic because you're like, oh, maybe I wasn't quick enough on the bar there to get ahead of the system to make sure that my child isn't going to be left without them. So sometimes you learn the hard way too with how to stay ahead really and also just because there's a lot of parents navigating that as well at the same time.
Jen Lyman (00:47:54):
And considering growth, once you become an adult, you're obviously not growing as often. Katie, have you found that you need to replace things as frequently as perhaps you did when you were younger?
Katy Gaastra (00:48:10):
I have been fortunate that my XSIM has lasted me 10 years and that's really unusual. This device, when I got it initially, I was expecting five to seven years. That's what I was told, but with the adjustments that we've made to how my foot sits in it with the foam and kind of like comfort adjustments, I would say we've been able to ... I've only had to use this one device, but I'm anticipating needing a new one soon. I can just tell ... My processes said you'll know when you need a
Elaine Owen (00:48:51):
New
Katy Gaastra (00:48:51):
One. And I think I'm getting to that point of like, "Oh yeah, we adjusted the padding a month or two ago, but I'm already like, my foot's not really feeling that great at the end of the day." And I know that that's kind of a sign that I might be needing a new one. And then with shoes, well, I do have insoles as well, those are replaced every year or so. And then my shoes just like as soon as the soles just like wear down. Fortunately, because I'm walking in a more symmetrical gait pattern with my XSIM, my shoes wear evenly, whereas for a lot of people with CP, they don't, so I don't have to replace them as often, but I do typically need two different size shoes and yeah, I think the shoes in the AFO combo are kind of the most challenging part about it, but it's something I'm kind of willing to navigate to have the mobility that this device affords me.
Jen Lyman (00:49:58):
I saw something about dress shoes in the comments and I was curious-
Katy Gaastra (00:50:05):
As a woman, I do not wear women's shoes anymore. I've given up that dream of wearing cute little high heels or even just nicer dress shoes with this device. I'm either wearing like a New Balance sneaker or like the closest I can get to a dress shoe is a Doc Martin boot.
(00:50:29):
Everyone's device and fit will look and feel different in a shoe. So it's really difficult to give brand recommendations, but I would look for like any shoe that has a wide toe box where there is room for your foot to sit comfortably and you're not putting pressure against the top of the shoe and a really like what I would say like deep heel because this device extends so much further out beyond my heel that you need room in that heel to keep the shoe in and you're walking uphill and you have like a really low heel, your foot's just going to slip out of it. I hate to say this, but it is just you're experimenting constantly and I think that's just unfortunately like a part of it
Jen Lyman (00:51:23):
Of
Katy Gaastra (00:51:24):
Having a disability. You're constantly iterating and adapting to what resources you have.
Jen Lyman (00:51:32):
Nicola, did you have anything else to add on some of the troubleshooting and ensuring comfort that from your experience with your daughter?
Nicola Welford (00:51:41):
Yeah,
Jen Lyman (00:51:44):
You're frozen.
Nicola Welford (00:51:45):
With the comment again, like we would have gone through phases to allow for air circulation. Again, keeping cut and socks on, knee high socks is what we would use so that there's no skin contact with the plastic because they're going to have sweating going on and then for after we take off AFOs in particular with washing and bedtime routines, keeping an eye on in between the toes that there's no moisture in there as well. So I suppose just general practice of keeping skin in good condition, but wearing the AFOs and taking a break, we would always take a break halfway through. We wouldn't just put them on and leave them on all day. We always would take them off halfway through, let a bit of air if we take a break, put on a different pair of shoes with no AFOs, then put the AFOs back on.
(00:52:36):
And I do feel that has definitely helped and we've
(00:52:39):
Got longer out of our day with them as well. I suppose one of the things I notice now that my daughter's getting older is that there. She's more aware that she's wearing these like Katie mentioned, she knows she looks different maybe to her friends. She's not wanting to wear them as much as she normally does. Now we're still getting away with it. The routine has been really important. So no matter what they go on at the same time in the mornings when we're getting ready for school, it's just part of the routine, same as pushing the teeth and
Elaine Owen (00:53:05):
Putting
Nicola Welford (00:53:05):
On the clothes and that definitely has helped with us getting this long out of her wearing them and I hope going forward we'll get some more time with her cooperation. As she gets older, I will have to respect her voice in the process and try and find the balance with what's good for her and what's right for her and also her having her voice at the same time too. So I can foresee challenges like that, that we've had it good for the last 11 years, things might start to get a bit harder now getting older.
Jen Lyman (00:53:33):
You're about to hit the teenage years. Well, let's move on. We've got a really important section coming up that we've been alluding to a lot, but collaborative goal setting and dosage and I'm going to switch screens here for Elaine to talk a little bit about this topic and what truly collaborative goal setting looks like in practice and how you ensure the family's priorities as you're driving this conversation. So I'm going to flip the screen Elaine and I'm hopeful that everybody can see this okay. I will also be sharing this as part of the resources, but have at it, Elaine.
Elaine Owen (00:54:27):
Okay. So there's two pages. So if you just go to the next slide as well and then go back to ... Yeah, and then go back, Jim. Yeah, okay, fine. So there's two pages basically on this pictorial tool. It's published in a journal, which is open access and also the pictural tools available free. You can download it from the journal or Jen's going to make it available. And so the tool is used for collaborative goal setting. It was written for children who stand and walk, but can be used for any mobility level and also we have been meaning to extend it into adults, et cetera. But basically it's that inside out approach here where you've got the bones and the joints in one column, the muscles in another column, the brain and how it's making everything work and the walking pattern in the next column.
(00:55:32):
In the next column you've got activities and in the fifth column you've got pain. So this is all about goals here and then if Jen goes to the next page, you've got other activities, okay? Maintaining and moving around and whatever, self-help. And in the bottom right hand corner, the child looking in the mirror, that's about how you feel about yourself and everything, which is a circle for all children. Yeah. So if you could just go back to the first screen then, Jen. So how does this work basically, collaborative goal setting. So the way I see it is you've got the child and the family in the middle, you've got the team around the child. Yeah. So the team around the child hopefully have had the same training and the same information and will be knowledgeable, but someone needs to do the goal setting and the way I tend to use it, I say to a family, "Tell me your concerns.
(00:56:33):
Tell me what you're worried about. Tell me what your goals and concerns are. " And then I'll mark it on the chart. So if they say, "We're worried about pain or we're worried about tissue, or we're worried about feet, or we're worried about walking patterns, or we're worried about how we're going to do slopes or whatever." You mark it on the chart. And then as well as that, then you add in information because families aren't always aware of everything. Not many families are aware that the bones in the feet aren't proper bon until you're about seven, yeah, that they're just bits of rubber that are very deformable before age seven. So there's lots of information that the clinician will add in. So you shape the picture from the parent and child's perspective, then you shape the picture from the professional's perspective and then you put it together to create a chart that has all the goals on.
(00:57:32):
And for me, I use it. I just use circle charts and circles coloring it in whatever. And I suggest to families if they're concerned about it, take the chart, write everything on the chart that you want to discuss and take it to your clinic appointments basically. So get the child to pray it in, color it, all the things you want to discuss with the clinician basically.
(00:57:59):
And then once you've got the goals across, it's based on the international classification, functioning, disability and health, but done in a different way. It's going in the inside out approach. Then it becomes clear which orthosis is going to achieve the goals and how much it needs to be worn to achieve those goals. So one of the things is people often feel they've got to have the orthosis on 100%. Well, it's rarely 100%. Yeah. It's going to be a certain percent. Yeah. And that depends on the goal and what you're trying to achieve and when it's on and when it's off. If it's not helpful for an activity, don't worry for an activity unless you're going to do harm in other areas. So that's how it's used basically. Yeah.
Jen Lyman (00:58:49):
Declan, have you guys used this in practice as well? No,
Declan Sweeney (00:58:53):
I haven't. I think it looks like an amazing tool. It's something that I'll definitely look at, but I think the focus is what we're trying to say is that the family are at the center of all of our decisions and I think that's crucial really to getting a good clinical outcome really. We can have an orthosis that biomechanically is extremely effective, but if it's not really fulfilling what the family's aspirations or expectations are, then compliance might be impacted.
Elaine Owen (00:59:28):
If you could just move on, Jen.
(00:59:31):
So basically you set the goals, okay? So you set the goals for the bones and joints, which bones, which joints, which muscles, the motor control, yeah, the motor control of sitting or standing and then the activities and then really important goals around pain and tissue because they indicate quality of life, of course, pain. And what we know is adults with cerebral palsy have a lot of pain. So as a child, you're trying to prevent that pain As an adult, yeah. But then what you do is you work out, so what percent do you need to wear the orthosis for the goals for the bones? What percent do you need to wear it for the muscles, for the learning, the motor control of the activity and for activities and participation. And you do that in a sort of percentage. What percent of the week basically do you need to wear them?
(01:00:30):
And then once you've worked that out, then you can work out what percent of the week do you need to wear them overall. What is priority? Is it the activity or is it the bones or both? How do you balance this? The benefits, the burdens and whatever. And then you take into account the context and do the negotiation often it's really important with children and parents do the negotiation. So where's it going to be useful to wear this orthosis? What's the timetable? Teenagers, often it's really good to do a negotiation timetable. Tell me about your Monday to Sunday week. What do you do? Well, it may not be a good idea to wear it when you're in school. If you're just sitting around all day when you're a teenager and not walking much, maybe you should wear it more in the evening or a weekend if it's a walking activity.
(01:01:20):
So then you balance that all up as to what the dosage is, what percent of the week and when it's useful to wear it to achieve the goals that everyone's agreed. Yeah. So there's the dosage tool that's published too. And then if you just go back to the pictorial tool and Jen, these are available. We're going to make these available for everyone. Yeah. So they've got them available. Yeah.
Jen Lyman (01:01:50):
And then.
Elaine Owen (01:01:52):
Yeah. So that is what's called the table tool, which is actually a list of written goals. It goes with the pictorial tool, but most people just use the pictorial tool. Yeah. So
Jen Lyman (01:02:03):
This is a very valuable resource and obviously we will also include the PDF and the articles with this. I know that I'm looking at this or thinking about it. I'm like, sometimes I feel like we probably needed two different types of AFOs with my son, one for the purpose of using his gait trainer versus the other for the purpose of just keeping his ankles stable when he's either sitting in his wheelchair or even standing in his stander. I'm curious if that's-
Elaine Owen (01:02:42):
Well, if you go back to the activity sheet on the pictorial tool,
(01:02:49):
That one. Yeah. Okay. So what you're saying is you've got AFOs, so they may be useful for helping the bones grow muscles, whatever. Yeah. But when your little boy is walking in his walker, so say this one here, see they're in the moving around when he's in his walker. Yeah. Okay. But they're not useful. So the question is, well, does he need to wear them? Maybe he's better in some footwear or a different orthosis, as you say. But that's the point is like, are they useful for that activity? Exactly. Often I say to kids, "Well, can you do the activity better with it or without it? " Some kids will say, "Well, I do the activity better with it. Okay. So we need to make it work for that activity." And other kids will say, "Well, no, I'm better without it. So unless you're actually going to do yourself terrible harm, then take it off and don't use it during that activity sort of thing." So this is the negotiation that goes on that's really important.
(01:03:56):
I mean, I think it's an old fashioned view that here's your orthosis, you must wear it 100% of the time. That doesn't work. It's not okay. And that's not how things are or should be these days really. It's about what's the goal? How do we achieve it? When are you going to wear it to achieve the goals?
Jen Lyman (01:04:15):
And I love that it's got these percentages here so that you can kind of get your head around that amount of time and when. Yeah, this is a fantastic tool. This is-
Elaine Owen (01:04:27):
Yeah, you see, so for other conditions like say spina bifida, other conditions, those percentages may be very different because those children can't feel their feet. So wearing their AFOs, if they don't wear their AFOs for certain activities, then you can do a lot of harm to skin and tissue. So that's the thing. You have to know what's the diagnosis, the history, the prognosis, et cetera, et cetera, to be able to work it out for the diagnosis and then for the individual child within that diagnosis. So what this is really is a checklist of all the things you've got to think about.
Jen Lyman (01:05:05):
Exactly.
Elaine Owen (01:05:07):
For each child it'll be different, but it's a checklist for each child or adult. Yeah.
Jen Lyman (01:05:12):
Thank you. Moving on and keeping the conversation going. I'm curious, Katie, from a goal setting perspective, what are some of the goals that have mattered to you? And I want to flip over to some of these pictures I have of you to show ... Well, it's not showing your orthotic very well there, but let's see if I can switch to a different image of you here. Here you are with your dad when you were a little girl. Your goal there looks like it was Easter egg hunting.
Katy Gaastra (01:05:46):
Exactly. Yeah. I think the conversation that we're having, I appreciate how patient centered it feels because I think growing up I wasn't asked what my goals were. I don't think I had the wherewithal to reflect on what my goals were. I don't think my parents really knew what to ask. And so the fact that we have a worksheet like this that we can bring to our providers and have these conversations is really important because now I can have my prosthetist and my physical therapist have a conversation once I do set my goals. But it has been interesting over the last 10 years to recognize how my goals have changed. When I received my exoSIM, I was recovering from a lot of bone injuries and so I had the frame of mind of like, I just need to be out of pain. And that once that box was checked, I was like, "I want to run." That was a goal of mine that had kind of been long deferred because of my injuries.
(01:07:02):
And so I worked with my prosthetist like, "Okay, how can I utilize the exosim to get my body in a position to become a runner?" I quickly learned that the device is quite rigid. It's not necessarily like at least for me having CP, maybe my body's not built to run. So my goals have really shifted from like, okay, being like the best, fastest athlete I could be to a conversation around longevity and being pain free and what does the next 10 years look like? I would encourage anyone thinking about like their motivations and goals and researching devices like mine to think of like, "Okay, is this something I can put on every day? Why do I need it in the first place? What do I want to do once I have it? " And so it shifted from running and hiking and doing kind of these really extreme things to now just maintaining my mobility, comfort, pain levels, and still being able to do things I love to do like cycling.
(01:08:18):
When I wanted to take on cycling more seriously, I had another conversation with my prosthetist. We talked about if you think about sitting on a bike and like putting your foot against the pedal to move forward, like a little bit of strategic conversation around that and I was able to find a lot of enjoyment in the activities that I'm doing and still do. So I think like that's where I now have conversations around my goals is like, am I enjoying it? Am I staying out of pain and not injuring myself? And so did that fully answer your question?
Jen Lyman (01:08:58):
Yes, I think it did. And thinking about it from the pictorial tool that Elaine just showed, I think it's really even you as an adult could take that and bring it back and just have it, I feel like this with when we go to the orthopedic surgeon or any, just kind of bringing all the different perspectives together and being able to ensure that all the different goals, it's not going to be just one goal. All the different goals are met and even thinking about the girls or just people's perceptions of wearing AFOs in the first place and does it have the right look and feel for you? Yeah. So absolutely I think it answered the question. I'm curious for Nicola, what are some of the goals that you had for your daughter when they were first prescribed and maybe how have they changed as she's grown?
(01:10:01):
And I'm going to switch back to that view. There you go.
Nicola Welford (01:10:08):
I think initially the goal was her mobility and to help her be able to support herself, to take her steps and to walk. And then I suppose as the years progressed, we realized that that in itself was a challenge even with behaviors on or off. And then one of the other main goals was that she could use her standard so that again, she wouldn't be able to get into that if she didn't have the APOs on. We did use them for cycling initially. We don't use them for cycling anymore. We find she's better without them
(01:10:39):
And again, for transfers as well. So for us it was very much more like kind of functional tasks as opposed to mobility, but we needed them for those functional tasks. They definitely made life easier for her and easier for ourselves as well. I wouldn't be without them to be honest with you, but I understand that there's a lot of challenges with them and we have a lot of families here in Ireland that are kind of undergoing all those challenges at the moment, particularly around the fit, getting the right make, getting them in the position. Like for me, the key is to get them cast properly in the first place and to get the person that knows your child and has the expertise to do that because you're at nothing if you don't have a correct set available and that's where you have all the problems and all the negative experiences of what they bring, which won't be good for the child or for yourself.
(01:11:26):
So that piece is crucial. And as Elaine said as well, the family being at the center and to be part of the different decisions that are being made and to hopefully have access to those fantastic charts that Elaine has shown as well. And for everyone to part of the process, I mean, you mentioned orthopedics there, Jen, there'll be different perspectives coming from different angles and it's just to be aware of those perspectives too and I suppose to ensure that when you go to your clinic setting as well at a combined clinic and that you at least have your physiotherapist there in the room where they understand your child and they're supporting your child. So just all those kind of practical pieces need to be in place as well to make it work.
Jen Lyman (01:12:10):
Yeah. I was curious for Declan and Elaine, how do you navigate when maybe an orthopedic surgeon prescribes, maybe doesn't know as much about types of orthotics and how do you navigate that type of situation to ensure that everybody's goals are kind of-
Declan Sweeney (01:12:34):
I think you just need to phone them and explain outline rationale, basically get on the phone.
Jen Lyman (01:12:39):
Yeah.
Declan Sweeney (01:12:40):
It's as straightforward as that, right? Yeah.
Jen Lyman (01:12:42):
Yeah.
Elaine Owen (01:12:43):
I mean, yeah, absolutely. I mean, if they're not understanding, then it has to be sort of explained really. Yeah. So basically it's about education, but I think there's a massive job really in education in orthotic science, for all professions really. And yeah, it's just like there is still a big job to do in education around it, particularly around alignments. Some of the old myths around alignments, they don't work. So you have to use more modern ideas around alignments and things. So all the time you're trying to educate everybody. And the other thing I always feel is for the parents to make an informed decision, they've got to have as much information really as the clinicians here. How do they make an informed decision if they don't have as much information as the clinicians here? And so it is about constantly sort of educating the team around the child so that everybody's on the same page.
(01:13:53):
It's no good when people are pulling in different directions. That's the worst thing for families when they're getting conflicting advice and it's not working in that way. So yeah, education I think is a really important thing. Yeah.
Jen Lyman (01:14:08):
And I guess that leads me to, and I know we're kind of going long here and I'm going to skip to, or I'm going to kind of end on all of these. But as far as building that care team, finding the orthotist and the physio who you work best with. Katie, do you have any advice for families about building those, finding the right care team for yourself?
Katy Gaastra (01:14:34):
I do think my situation's a little bit unique because my ex- sim is made at a specialty clinic and there's only one in the entire world. So that's the person I go to. And fortunately that relationship has been really well sustained over the years. And I think what I would encourage though on this point is no matter who you're seeing to Elaine and Declan's point is communicate like have your physical therapist and your orthotist or prosthetists talk to each other.
(01:15:08):
You might have to facilitate some of that communication, but I do think it's important to have that coordination of care to communicate with your orthotist if you think something's not fitting right or your life circumstances are changing. My husband and I are talking about family planning and what the experience of pregnancy will look like for me wearing my exosym. And so I already had that conversation with my prosthetists and we can, as long as that door of communication is open, I'm not really concerned about not being able to wear my device. So I guess that's all to
Elaine Owen (01:15:49):
Say
Katy Gaastra (01:15:49):
Is that the point is to not really hesitate if something's not working for you because your provider is there to help you get the most out of the support that they're providing to you.
Jen Lyman (01:16:05):
Nicola, do you have any advice parting advice for families who are just starting this journey?
Nicola Welford (01:16:12):
I think stick with it. I mean for me, I would have been too afraid to not, and I'm glad I didn't, like you might have some families thinking, "Are these going to work at all for my child and they're causing nothing but distress?" And look, that could just be addiction the journey for a variety of reasons, which don't happen unfortunately, but I think try and get through that and navigate that as best you can and advocate as well, but stick with it because for us I do feel that it has definitely kept our daughter's feet in good condition and
Elaine Owen (01:16:47):
I
Nicola Welford (01:16:47):
Think we would be facing more orthopedic surgery if we hadn't worn them and that's why we have stuck with it and that's just my, I'm not an expert, but that's just my journey and my experience of AFOs in our life. But like I can see all the questions coming in on the chat and there's lots of bits there if we have time just to hobble over some of them where
Jen Lyman (01:17:07):
Parents
Nicola Welford (01:17:08):
Are worried, you don't want your child in pain, you don't want skin bulging, you don't want to have them upset and it's just trying to ... And then you have some people tell you it's all okay and it's not okay and it's just knowing what is okay. So
Jen Lyman (01:17:22):
It's just
Nicola Welford (01:17:23):
Trying to get through all of that. But definitely I would say stick with it if it can.
Jen Lyman (01:17:28):
And yeah, I guess that Emily had a question about when my little one gets a muscle bulge over the top of the splint, it feels like it's due to not fitting, but the OT and the PT feels like it's fine. In that situation, Emily's, you're the mom and if this is something that's really concerning, I feel like I would say you need to call the orthotist, you need to stick with it because if it's hurting, that's not right.
Elaine Owen (01:18:04):
I think the really, really vital thing is around fit and comfort and stuff like that. Normally it's not okay if the muscles bulging outside the orthosis though, that's not okay. So basically the parent's instinct is likely correct. I'm not sure which muscle, which orthosis, but usually
(01:18:24):
It's not okay. But comfort is really important because the most important thing is young children with childhood onset disability, as everyone here knows, they've got a lifetime to live with that disability. You cannot have children in pain. You cannot have them in pain and asking them to tolerate things that are intolerable. It's just not okay because they have to live A through their childhood and then into adulthood with this year. It has to be acceptable. It has to be not painful and it has to be okay because it's just too much to ask children to do that and adults, of course, but it's just too much to ask child to do that. They've got enough, they've got to deal with the physiotherapy, everything that's going on, you cannot have them in uncomfortable orthosis. It's not on.
Jen Lyman (01:19:25):
I see Chris Myers, you have a question, but I'm not sure if we're understanding this properly. Katie, I think you're asking Katie the question. Do you think you can follow up with him on his-
Katy Gaastra (01:19:41):
Yeah, just really quickly, it doesn't feel extra heavy when I attach the knee portion, if that makes sense. It really offers because it's connected to the bottom piece and it's customized to like the size of my body and my thigh, it fits really well and it just offers more stability. So some people with CP might not need this knee section. I happen to have a lot of internal rotation and so at least it offers a way for my knee and my ankle and my toe to kind of stay a little bit more in alignment all the way through. But if I'm just going out to dinner with friends, sometimes I will opt not to wear the knee section just because of kind of the bulkiness of it and I can usually fit the bottom portion under like a wide leg jean. So hopefully that gets to the root of your question, Chris.
Jen Lyman (01:20:42):
I'm just going through the questions to see if there were any others in the chat that we have not answered in this
Nicola Welford (01:20:55):
Couple of questions just from Ireland, how would you handle AFOs in warm weather? Now I know in our perspective we're not as good in the summer to wear them, I'll be honest with you and in this heat I'm not putting them on my daughter because I wouldn't put them on myself and I suppose just trying to maybe live with that guilt of not wearing them, but I'd love to get the opinion of Declan and Elaine as well just on that one. Is that reasonable in your perspective to kind of take a break in the hot weather and not feel bad about it if you think
Declan Sweeney (01:21:30):
Absolutely
Jen Lyman (01:21:33):
Absolutely what? Absolutely. It's okay not to wear them when it's hot
Declan Sweeney (01:21:37):
To take a break So we're in Ireland right at the moment, but probably in the UK, 27 degrees like we're all ... Look, at the end of the day, look, we have to be practical, right? If it's a hot day outside and you're choosing not to wear the authoutic device for a couple of hours, we're not going to worry about it. We're not going to stress over.
Elaine Owen (01:22:00):
I mean, in hot countries, it's around that dosage. So if overall in the week, so often early in the morning walking, late in the afternoon walking, not in the middle of the day walking, often things they'll do in the countries that are perpetually hot, which is not the UK, but yeah.
Nicola Welford (01:22:21):
Ventilation, again, that's another one that's come up with the AFOs where you have the holes drilled and how big the hole should be and some parents have received conflicting information on the size of the hole and if it's too big, then you're kind of defeating the purpose of the AFO when it's not functioning in the ways it should and then also the other splinting as well and the benefits of that as well. So two kind of hot topics part of the one.
Declan Sweeney (01:22:46):
Can I just comment on the vent holes? Yeah,
Jen Lyman (01:22:48):
I'm curious about that.
Declan Sweeney (01:22:50):
Four or five millimeters is absolutely fine. If you're dealing a whole like a centimeter, two centimeters, then you're going to have point pressure concerns possibly, but small vent hole should be absolutely fine and particularly in the calf area with the soft tissue, that should be absolutely fine.
Elaine Owen (01:23:08):
I think there's questions about what people commonly call night splints. Did we want to talk about that? Yeah, I'd
Jen Lyman (01:23:15):
Love for you to jump into that for a minute or so.
Elaine Owen (01:23:19):
Yeah. So of course there's various night splints, but everybody getting their sleep is hugely important. So I often call them resting, although some people interpret that differently, that it may be that the child wears them just when they're getting rested before they go to sleep. So it's a non-activity sort of brace in some ways. There's different night splints, but I think the question for Rebecca is about an AFO sort of night splint. And yeah, the problem is you can't have children going through their lives being uncomfortable at night, it's not on. So they either have to be comfortable or not worn during the night. But often I often say if a child needs a resting splint as long as a daytime AFO is, well, put it on when you're going to sleep sort of thing. And if you fall asleep with it, great. And if you wake up and it's uncomfortable, take it off and throw it out of the bed.
(01:24:20):
It's fine. Yeah. It's absolutely fine. Or parents then when you go to bed a bit later, you take it off because to expect occasionally children will go a whole night and they prefer being a whole night with them. They prefer to do that, but that's quite rare. So again, it's about families and children getting their sleep, isn't it? And making it tolerable and finding out where the dosage works and when it works. But often just giving children permission to undo the Velcro, throw it out of bed. That's all they need to relax really. And they'll go a couple of hours into their sleep, then it's off, but they've done a couple of hours.
Jen Lyman (01:24:59):
For our family, my son's dystonia can be quite painful for him and wearing the splints at night as he's falling asleep can actually be helpful because he doesn't end up getting the twisting movements and the spasms from his dystonia while he's trying to fall asleep. So we've actually found that that's been a useful way for him to wear them.
Elaine Owen (01:25:26):
Yeah,
Jen Lyman (01:25:26):
Exactly.
Elaine Owen (01:25:27):
Yeah. Yeah. Some children say, "I prefer to wear them. I'm much better wearing. I prefer it. Thank you very much." So every child's different. Every family is different, isn't it? It's about working, what's the goal? How are we going to achieve it? Are we going to achieve it at night or in the day and what's going to work for you in your family? Right,
Jen Lyman (01:25:47):
Right. Yeah, go ahead, Nicola.
Nicola Welford (01:25:51):
Last one now. We have a lot of families that look to go outside the country for Ables for a variety of reasons and I'm just wondering what the opinion would be on that. Is that necessary? Is it just a matter of working more closely with what we have here in this country? Is there something better out there that we don't know about?
Jen Lyman (01:26:14):
That was Ellen's question. Yeah.
Declan Sweeney (01:26:21):
Do you want me to come in there?
Jen Lyman (01:26:22):
Yeah, Declan, I think you'd be the perfect person to answer that since you're the one providing them
Declan Sweeney (01:26:27):
There. Yeah. Look, I don't really see the need for families to travel abroad. I think the approaches that we use to say there may be some families traveling to the UK. I believe that the approaches that we are using are actually quite similar. The materials that we use are quite similar and the philosophies that we use are quite similar. So look, my opinion, the grass isn't ultimately greener elsewhere if you like. I think there may be just sort of an over commercial expectation perhaps.
Jen Lyman (01:27:09):
I think the burden to the family as well, if you have to go every time if I were an orthotist and I'm not, but if somebody else made the brace, I don't think that I would be inclined to take it and then make the adjustments. I'd be saying, "No, you need to go back to Spain or wherever and have the person who created this fix this. " So I think that's an added burden for families who we already have quite a bit going on. I think we've got time for like one more question, exactly one more question. I think since I'm staring at the chat box, John had a question about general guidance about rigid versus flexible for a GMFCS2. I know it's case by case, but are there any general guidance principles that you guys would have?
Elaine Owen (01:28:04):
It depends on the goal.
Jen Lyman (01:28:06):
I knew that was the answer.
Elaine Owen (01:28:09):
So you set the goals here, but I don't know what Declan uses, but I've got an algorithm I use, a decision making tree that you use here as to whether one would use a rigid or a flexible AFO and it particularly is relevant to young children who are growing a foot posture. So basically you take into account things like what's the length of the calf muscle, what's the stiffness of the calf muscle, what's the strength of the calf muscle and what's the foot posture? And if a device that's going to move is going to create foot deformity, that is not necessarily a good idea, but you have to go through all these points, what's it going to gain, what's it going to lose, et cetera, et cetera. So it is around the goals for bones, joints, muscles, walking pattern activities and participation and then taking quite a lot of things into account.
(01:29:12):
But yeah, I've got a published algorithm on that. What I say to people, I've got quite a lot of published algorithms, their lists of thinking. What I say to people, if you don't like my algorithms, it's absolutely fine by me, write your own. But these are the algorithms that we've written over years of experience working with children, not just with cerebral palsy with lots of conditions, but fine if you don't like my algorithms, it's absolutely fine. Write another one, but there must be a process that everyone thinks find. So there has to be a process of thinking that parents can get to grips with that process. What's in our heads, what's going on here when we're trying to work out what's the optimum orthosis for a child.
Jen Lyman (01:29:55):
For those families who might be interested in that algorithm to take to their therapist Just is that something that I'd be able to include as a resource?
Elaine Owen (01:30:05):
Yeah, I can put a pack. The algorithms are published in published paper stuff, but I can give you the algorithms for sure. Yeah.
Jen Lyman (01:30:15):
Thank you. Well, we are just about done. I feel like we've gotten to most of the questions. There were a couple questions that came in online that were a little bit more complex and specific to the children. I've brought them to Elaine and I know that she can reach out afterwards, but I just want to thank our guests today and Declan and Elaine. You guys are amazing and Katie and Nicola for sharing your experiences. I know we all have this lived experience and your professional experience is huge and hopefully this webinar or this CP Connect is going to provide all of you families who have attended and also who get to watch this on the video later. Some extra resources as you're working with your team to make the choices with your children and set goals for orthotic use. I want to thank everybody.
Katy Gaastra (01:31:28):
Thanks, Jen.
Elaine Owen (01:31:29):
Thank you. Thanks. Thank
Jen Lyman (01:31:30):
You guys. I
Elaine Owen (01:31:31):
Was going to say we didn't see everyone else.
Jen Lyman (01:31:35):
Hi everybody. Thank you both for joining us today. We really
Elaine Owen (01:31:39):
Appreciate
Jen Lyman (01:31:39):
It. Nice
Elaine Owen (01:31:40):
To meet you.