The Therapy TriFecta

Raylene Lewis: 0:02

Hi there, and thank you for joining us on AVM Alliance, a pediatric podcast for families and friends whose lives have been affected by traumatic brain injury, rare disease, brain disorders, or stroke. The purpose of this podcast is to focus on the kids side of brain injury with honest talk, news, information, and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. Hello to all and happy spring. I don't know about you, but I was very excited to hear that Punxsutawney Phil, the infamous groundhog, said that we are moving full steam ahead into spring. Personally, being a Texas girl, I am not a fan of cold weather. I am, however, all about April showers and hope they bring beautiful May flowers. April brings an extra celebration this year for our family. Currently, it means the clock is still going and Kyler has made it three months seizure free. Here's hoping this trend continues. Please! There are a couple things that I'm excited to talk to you about today. First of all, I'm back from the International Pediatric Stroke Organization 2024 Congress, and that took place in Toronto, Canada. Wow. It was an overwhelming amount of super important information. And if you'd like, you too can see what was discussed with photos and videos. If you'll just look in our private Facebook group, AVM Alliance, a pediatric. AVM aneurysm stroke group. This is a private group. So you'll have to answer some questions to join. We also received some really special shout outs from doctors at various centers for excellence. And these are folks who specialize in treating pediatric stroke and brain vessel disease across the United States. We'll be posting these on Facebook and Instagram throughout the month of April. And I just want to say it was so heartwarming to see how much these doctors care about our kiddos and community. I want to give a huge shout out to, to the VOGM network, which is the vein of Galen Malformation Network, as well as the Moyamoya Foundation and the International Alliance for Pediatric Stroke. We are all advocates on the same team. And I know we're all friends too. Now I look forward to collaborating and working with these groups even more in the future. I think it makes our community stronger. Now when it comes to our community, we've rolled out a few special things for our kiddos. First of all, April 8th will be our solar eclipse extravaganza event. The last couple of weeks we've been snail mailing books and solar eclipse glasses to our community kiddos. This is all thanks to Mindi Kavanaugh with Greene Eyes Optometrists in Bryan, Texas, who was the generous sponsor of this event. If you have a chance, look her up on Google and give this office a five star review. Seriously guys, we have such a huge need for sponsors like Mindi to be able to offer events like these. And it means so much to our AVM Alliance kiddos, their siblings, and really to all of our community. Additionally, we have opened our AVM Alliance Minecraft Realm to our Pediatric Stroke and Brain Vessel Disease Warriors and their siblings, and it has been such a pleasure to witness them interacting, playing, and building things together. Now, for our older teens and young adults, we have just opened an AVM Alliance Discord Realm, and that's so our kids can play video games, listen to music, talk, or text, and the goal is for them to develop strong relationships with each other. Sometimes this disease can really include a loneliness factor, and that's something that AVM Alliance is working very hard to try to combat. I also want to mention that we had a great meeting with Cephable last week, and their technology is readily available for free for our kiddos who have issues that might make it difficult for them to use a gaming controller, mouse, or keyboard. Thank you, Cephable. Now, if any parents need help setting up this software, all they need to do is just reach out to us. Info at avmalliance. org and we are happy to help. And just a quick reminder to everyone that if you follow our page, avmalliance, a pediatric stroke page on Facebook, or avmalliance on Instagram, you can really see the results of what our nonprofit is doing. We would love your help to make sure our families have the support they need and deserve. When you hear it takes a village, let me tell you. This is a hundred percent true. Now, moving on with me today is Anna Harding Clearman, occupational therapist in the pediatric stroke program at UTHealth. Anna, thank you for joining us today.

Anna Haertling Clearman: 5:17

Absolutely, Raylene. Thank you so much for having me. I'm super excited to be here and chat with you.

Raylene Lewis: 5:23

Well, let's start off with just like the basic general question. What is occupational therapy?

Anna Haertling Clearman: 5:28

That is a question I have gotten multiple times over my 10 year career as an OT and even before then when I was in school and telling people what I was wanting to do with my life, everybody hears occupational therapy and thinks occupation job, you know, only applicable to people who are working. And that's not that's not the case. If you frame your mind around the fact that the word occupation is anything in your daily life that you need to do or you want to do or maybe are expected to do, that opens up a whole new world of understanding what OT is. So in the context of pediatric stroke occupational therapists are going to be the individuals working with you or your child to get back to doing those daily occupations. What do they need to do every day? You know, everything from getting up in the morning and getting dressed, feeding themselves a meal, doing their schoolwork. That is their job as a child or as a teen. You know, and it goes all the way up to things like driving but really anything that you need to do in your day to day life, those functional activities, occupational therapy can help with, and obviously we are working with people who are having difficulty doing those things either learning how to do them or as they develop or learning how to do them in a different way if they're not able to do them as they were before. So really our, our big thing is helping people live their life to the fullest.

Raylene Lewis: 6:52

Well, I have to say, you know, I've spent quite a few hours with Kyler in the different therapies and occupational therapy is always my favorite. So Kyler's sister said she wants to be an occupational therapist. So that's what she's written in all of her essays that she, you know, is trying to get into college this year. And I think what's really neat, at least for me, is when you look at See how your kid is doing at therapy. You know, occupational therapy is something where you can see, in my opinion, rather quickly, you know, how much of a difference they can make and and how fast that they can advance on certain things. And for me, Kyler was like, Oh, you know I don't need this. I can do this. And. One of the occupational therapists showed him so he he's right handed, right? So that should be his fast faster hand for doing seven It was a simple task of moving blocks from one side to the other and how fast can you do that? right and she had him do it with the left hand and they timed him and then she had him do it with the right hand and He was absolutely stunned that he was so much slower than In the right hand, which is his, his dominant hand than the left. Right? And, and it, for him it was this huge eyeopener that was like, wow, maybe I do need therapy. So tell me, you know, what are the other types of therapies that someone might

Anna Haertling Clearman: 8:11

receive? After experiencing a stroke, I usually call it like the big three or the trifecta of what you're going to get as far as rehabilitation therapy. So there's occupational therapy, physical therapy, and speech therapy. After a stroke, someone might need one, two, or all of those therapies at some point. And that might change over time as they, as they recover and what their needs are. I already explained occupational therapy. We do often get compared to physical therapy. The biggest thing I say when people ask what the difference is between OT and PT, is that occupational therapy focuses on function and PT focuses on mobility. So any movement of the body from you know, just learning how to go from laying down to sitting up, from sitting to standing, from standing to walking. If you're not at the point of walking, maybe just moving from a bed or a couch to a wheelchair. Those transitional movements, getting from point A to point B. PT is going to help you get there, and then OT is going to help you do whatever you need to do once you get there. So,

Raylene Lewis: 9:14

And then the trifecta, the third for the trifecta is speech, right?

Anna Haertling Clearman: 9:17

Yes, speech therapy or speech language pathology as you may hear it sometimes. Speech therapy covers a broad array of Interventions after stroke, so they can help with everything from speech production. That's, you know, inherent in the name being able to talk. A lot of people may have difficulty forming words, either the motor movements of their mouth or getting what's in their brain to come to their mouth and making that connection. They can also work with swallowing and feeding. So if anybody has trouble Yeah. with their intake of food, whether it be the chewing part or the swallowing part speech language pathologists can help with that as well. They also work a lot with cognition. So memory processing those higher level executive functioning things, planning, problem solving which does overlap with O. T. sometimes as well but speech therapists are very specialized in those sorts of things.

Raylene Lewis: 10:13

Yeah, that's one thing I really had a question on because for Kyler, I thought that he needed more O. T. and they told me no, it's really the cognitive function side, so he needs more of the executive function part. Can you explain that a little bit more? The difference. Yeah.

Anna Haertling Clearman: 10:30

So the way that I've seen it in practice is we really sort of tag team on some of those things. The speech therapists are maybe going to really lay the groundwork for learning new strategies or helping a patient. realize, you know, what they need to do and how they need to approach a cognitive task. You might see speech therapists do more what we call paper pencil tasks. So things at a table, worksheets, those sorts of things. And then OT is going to help. them then apply that to their everyday life.

Raylene Lewis: 11:01

That makes so much sense to me. I kind of see the connection there. So one of Kyler's biggest things that he lost with his stroke was he would get, he would actually get lost. And so they worked on, okay, and we wrote it all down. What would happen if you didn't know where you were? How, what do you do in terms of looking around so that you don't get lost? Like, for example, when you go to park at a. Commercial place, you know, they have pink and green and blue and your P7 or D4 or whatever. And and so he would, he was really bad about getting lost in there, in that situation, but also in hotels, because all the hotel rooms look the same. And, and so it's very, very confusing. And I remember the OT person saying, okay, now let's do this. Do it. And so they got up and he was like, now show me where you parked your car today. You know, and things like that. And they put him in a, I guess where hospital rooms are kind of the same idea as as hotels. And so they put him in one place and was like, okay, now you have to get back

Anna Haertling Clearman: 12:00

So, yep. And all the strategies that he learned from the speech therapist, he was applying probably during that task with the ot. So again, I call it, you know, the big three or the trifecta'cause we all work so closely together. There's a little bit of overlap. between what we all do, because you can't compartmentalize a person. You can't just say, you know, you need to work on your mobility or you need to work on this functional activity or you need to work on your cognition. They all affect each other. And so that's why we really talk a lot about an interdisciplinary team being such an integral part to a patient's recovery, not only with the therapist, then, you know, also with the nurses and the doctors and everything else. But we, we all work closely together because, you know, it's all about one person and

Raylene Lewis: 12:46

we've all heard it takes a village, right? It's so true.

Anna Haertling Clearman: 12:49

Sure. Yeah. That's it. And it's, you know, that sounds like such a stereotypical phrase but it's, it, it describes it perfectly, I think.

Raylene Lewis: 12:56

Yeah, I agree 100%. So for a lot of our parents stroke is like something they'd never even anticipated, especially with a kid. Right. And so the first thing is the medical hurdle of, okay, let's get stable. Let's get okay. And then it's like, and we're releasing you to therapy. And part of you is like, Yay, I get to, you know, move to the next step. And then other parts, it's like, it's really scary. What do you typically see for recovery after stroke? Okay.

Anna Haertling Clearman: 13:23

So every patient's recovery trajectory is going to look different because every person is different. You start in the hospital, maybe in the ICU, you go to the floor, you may go to inpatient rehab after that, transition to outpatient rehab.

Raylene Lewis: 13:39

People say, Oh, you flatline after. A certain number of years. I don't think that's true.

Anna Haertling Clearman: 13:44

Yeah, I don't think that's true either. There has been there have been research that shows that you can still continue to recover, recover after a certain amount of time. You might make a faster, you know, recovery initially, and then maybe slow down a little bit, but that doesn't mean you're plateauing. Putting on a shirt is an example I always use. You know, I could sit here and work with you in inpatient rehab or, you know, at the very beginning of your recovery stage, and we can work all day long on your arm, but you, you may at that point, you know, only recover some shoulder movement or maybe a little bit of elbow movement. You might not get to the point of moving your hand. And I'm not going to send you home from the inpatient hospital without knowing how to put on your shirt. There's compensatory and adaptive strategies for our daily activities that maybe don't necessarily use the movement of the arm but get you back to doing that activity a little quicker and getting you to be independent. At some stages, we need to work on recovery. We need to work on the, you know, rehabilitation of the movement but we also need to consider compensation and adaptation to increase independence along the way.

Raylene Lewis: 14:55

Compensation and adaptation. I love that. So just because you lose function of something doesn't mean that you lose the ability to do something else. You just have to learn to do it a different way.

Anna Haertling Clearman: 15:07

Absolutely. And that's why I reassure people parents and patients when they say, well, you know, I, I've been working so hard. I still can't move my hand. And it's like, okay, well, we're still going to work on that. But in the meantime, look at all these things you can do. Recovery never, never ends. It just looks different at different stages.

Raylene Lewis: 15:26

A hundred percent. I couldn't agree more. Okay, so what is new in the world of therapy for pediatric stroke?

Anna Haertling Clearman: 15:33

With technology, just like we were talking earlier. There's

Raylene Lewis: 15:35

like this bio thing, right? I don't mean to interrupt, but like

Anna Haertling Clearman: 15:39

Yeah, there's, there's biofeedback, there's devices coming out. People are using, there's companies adapting, you know, video games and video game systems and computer software that allows you to do things in different ways. So I don't, certainly don't know everything, but what I do have some knowledge about is some of the research that's being done specifically for pediatric for perinatal and pediatric stroke. So. Specifically studies that I'm currently working on two studies here at UT Health constraint therapy for anyone who may not be aware that you might see it called C. I. or C. I. M. T. constraint induced movement therapy. Essentially the premise behind it is you know, recovering movement in the affected or weaker arm. So we put a a lightweight cast on the strong arm for a period of time that forces movement of the weaker arm. It's called acquire therapy and it's other studies have shown that CIMT is effective. It's just a matter of figuring out kind of that, you know, how much. Is needed. How intense does it need to be? And that's kind of what we're looking at with that study right now.

Raylene Lewis: 16:49

And the other study that you're doing. So the, the, I acquire or the CIMT that's for the babies, the, the younger ones.

Anna Haertling Clearman: 16:57

Yeah, yeah, it goes up to three years old, but it's for people that for kids that have had a stroke, you know, in that early stage of life before they're one month old.

Raylene Lewis: 17:06

All right. And the other one is the T. O. P. S. program, right?

Anna Haertling Clearman: 17:09

Tolerability. That's the T. O. So it's Tolerability of Transcranial Direct Current Stimulation for Pediatric Stroke Survivors. And so that's the P. S. S. Pediatric Stroke Survivors.

Raylene Lewis: 17:21

And this one is for kids, I think, what, age 5 to 8 to 20 or something like that? Yeah,

Anna Haertling Clearman: 17:27

it's for anybody who's had a stroke from the age of one month up until Okay,

Raylene Lewis: 17:34

and that one is really interesting because the, the transcranial stimulation, it doesn't hurt, but basically it's a combination of using electrodes, right? A little a little electricity therapy getting those muscles to move along with rehabilitation, physical movement at the same time, right?

Anna Haertling Clearman: 17:52

I'm the treating therapist for that study as well. And again, we're focusing on increasing movement of the arm, the affected arm. So yeah, it's transcranial direct current stimulation or TDCS sounds really intimidating. And it, but it's not. It's basically putting electrodes on the scalp. A lot of patients don't even feel it. Some describe it as kind of a tickling or tingling sensation. But we put the positive electrode over the motor cortex that was affected during the stroke. We start with some stimulation, about 20 minutes of stimulation while they start doing the therapy for their arm. And then once the stimulation is removed after 20 minutes, we continue working on the arm with the OT with me for the next couple of hours to maximize the potential benefit that that stimulation over the motor cortex has.

Raylene Lewis: 18:44

And you see positive results with that as well, I think.

Anna Haertling Clearman: 18:47

Again, I can't necessarily say you know, because we haven't published the results of that first study yet. But it, it's been a really positive experience, I think for, for myself as the therapist and for all the patients that were enrolled in the first part of the, the program, you know, your life changes completely after an event like this. And what I want people to know and, and think about is that. It's It's very easy for recovery from stroke to take over your life and become your full time job. But it's also okay to have what we in the OT world call occupational balance, which is a balance of the things you have to do and the things that you can't do. Want to do or that you enjoy doing and how you devote your time to balance those things out in order to make your physical and emotional health optimized. Just the big thing is, you know, especially as parents, you know, go easy on yourself. Don't, don't let this overwhelm you to the point where it takes over your life. And, you know, communicate with your care team about what is needed and we can work with you to, to make that fit in your life. As best as possible. You know, a lot of families have other kids and all of a sudden you know, the stroke recovery takes over and the other kids like, well, what about me? You know, make, you know, make time for them to make time for things as a family that aren't about them. Recovery from the stroke. It's just about being your family. Like, like you were before, like you still are.

Raylene Lewis: 20:20

And as parents, we have to find that balance and find the balance that works for our kids and also for our family and our sanity.

Anna Haertling Clearman: 20:28

Exactly. Absolutely.

Raylene Lewis: 20:31

Well, thank you so much for coming today and if somebody wanted more information on the therapy programs that we talked about, you can absolutely go to avmalliance. org. I'll also have the link in the comments below. If

Anna Haertling Clearman: 20:44

you are interested in learning more about UTHealth's Pediatric Stroke Program or any research going on within our program you can look that up UTHealth Pediatric Stroke Program. Our director is Dr. Stuart Fraser. There aren't many pediatric stroke programs in the country, so it would be pretty easy to find us via Google instead of me spelling out our whole website and things of that nature.

Raylene Lewis: 21:06

Dr. Frazier has been amazing for Kyler and helping him with his recovery. And so I just thank you guys all for everything that you do for our kiddos.

Anna Haertling Clearman: 21:16

Absolutely. It's, it's always a pleasure. You know, you don't get into this field unless you love people and love making a difference. And it's been an absolute pleasure to work with every single patient that has come across us.

Raylene Lewis: 21:27

Well, thank you so much for all you do. And thank you for joining me today.

Anna Haertling Clearman: 21:31

Thank you, Raylene. I appreciate it.

Raylene Lewis: 21:35

And as always, if you have questions, have a topic you would like to hear about, don't be shy, share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone. Take care, y'all.