Cheryl Martin (Host): Scoliosis is an abnormal curvature of the spine. It's usually diagnosed in children. Physical therapy can make a big difference. Shannon Kelly is a physical therapist who worked with Chloe after she was diagnosed with scoliosis. Shannon, Chloe, and her mother are here, Carol, to discuss their journey and how the process can apply to a broader range of patients.

Welcome to Healing Heroes PDX, the podcast series from the specialists at Shriners Children's Portland. I'm Cheryl Martin and today we're discussing physical therapy for scoliosis patients. Shannon, let me begin with you. Tell us about your experience and what drew you to pediatric physical therapy.

Shannon Kelly, PT, PCS: Well, I was an intern at Shriners 31 years ago. I fell in love with the mission, the patients, and the rehab department, which was like one big family. As an intern, we were able to be in the clinic side by side with the physicians. We observed surgery. We attended motion analysis lab and pre op indications where the physicians discussed the patient's cases prior to surgery.

We had one on one lectures with the therapists for each specialty area and observation in each specialty clinic. So I decided at that time that Shriners was my dream job.

Host: And you've been there ever since?

Shannon Kelly, PT, PCS: Correct.

Host: Tell us about scoliosis specific exercises at Shriners Children's.

Shannon Kelly, PT, PCS: Well, we had the opportunity for two therapists to be trained in 2016 with a group of other Shriners therapists, and we began our SSE, or scoliosis specific exercise program. And since then a third therapist has been trained, so we currently have three therapists that are SSE trained through the BSPTS, which is the Barcelona Scoliosis Physical Therapy School. The patients are referred based on both their interest, their risk for progression, and other factors. There are some guidelines that are published by SOSORT, which is the International Society on Scoliosis Orthopedic and Rehab Treatment, for when the SSE is indicated. Once the patient is referred, we work up x-rays and we classify the curves so we are providing curve specific exercises.

If a brace has been ordered, we require the patients to be wearing the brace the full amount of recommended time, as SSE does not replace brace wear. The program is pretty intensive, so we recommend girls are at least age 10 and over, and boys age 12 and over, to avoid them burning out prior to their final growth spurt.

The frequency can be weekly for 12 weeks, or a variety of intensity, based on the patient's distance from the hospital. The patients are provided with one on one instruction of postural corrections and exercises in different positions, such as supine, side lying, prone, sitting, and standing. The patients learn a variety of exercises specific to their curve using specific muscles and breathing techniques.

They're expected to do a home program for 30 minutes daily and remember their postural corrections 70 percent of the time by the completion of the program.

Host: That's great. So you have seen significant progress when patients follow this exercise program.

Shannon Kelly, PT, PCS: Yeah, it's part of a comprehensive program. If they're wearing a brace, they are required to wear the brace and then the scoliosis specific exercises are complementary. So the whole idea behind the scoliosis treatment is to correct the curve and put the blocks back in place so that they're growing more symmetrically, because if they're weight bearing asymmetrically, then they're growing asymmetrically.

So the whole idea is to capture this growth and instead of allowing the curve to take off like it would growing asymmetrically; we're helping to use bracing and exercises to optimize the correction during those rapid periods of growth.

Host: Great. Chloe, so glad that you're on and you're willing to share your story. Tell us about when you received your scoliosis diagnosis and how you found Shriners Children's.

Chloe: I was diagnosed with scoliosis in July of 2024 and my doctor put in a referral for Shriners Children's.

Host: And what has it been like for you? And then I can ask your mother, Carol, what has it been like as a mom navigating getting Chloe the best care for her scoliosis?

Chloe: It's been pretty good.

Host: It's been pretty good. Okay, Carol.

Carol: It's been good. We have six kids, and Chloe's the youngest of six, and none of my other kids have had scoliosis, and so this is a new ballgame for us. But we went in for her well child check, and her pediatrician said, I think she might have a little bit of scoliosis, and so through the x-rays and looking at it, sure enough that was confirmed, and they sent in a referral to Shriners Children's here in Portland, and we came and we just feel very, very blessed with the care that we've gotten, with the timeframe that we were able to get in, with the doctors and therapists that we've had. It's just been a great experience overall.

Host: That's great. Anything else you just want to add specifically about your experience with Shannon in physical therapy?

Carol: Shannon's been fantastic. Chloe came in every week for 13 weeks, and now we're in the kind of maintenance therapy until we do another visit with her doctor. But Shannon spends an hour with her each time we come in, she looks at her x-rays and looks at the specific exercises that Chloe needs for Chloe's specific scoliosis case and works with her on those exercises and then helps her learn those exercises so when we go home and Chloe does her daily therapy, she's remembered those things to give herself the best situation for her scoliosis care.

Host: That's great. Now, Shannon, you talked about bracing and therapy a little bit before. So, Chloe receives bracing and therapy at Shriners Children's. How important is it for you to be in the same building as the team making her braces and being able to consult for the best care for her?

Shannon Kelly, PT, PCS: I think it's really important. Sometimes I feel like I'm working at Disneyland because we are under the same roof. So I have such good access to the physicians and the orthotists. So, we do have just an amazing setting here at Shriners with four physicians specializing in pediatric spine. We have our POPS department, which is our prosthetics and orthotic shop, in the same building with experienced orthotists doing incredible work. We have the ability to have open communication with all the players of the team and really easy accessibility to problem solving together. I ask Chloe about bracewear each session with a very low threshold to refer back to orthotics for adjustments. Treating in this setting, patients are always growing and changing and we are here to assist them in this process.

We also have a solid behavioral health team. So, if patients need extra support for navigating scoliosis or coping with the changes that come around or coping with their brace wear, we can make a referral to the behavioral health team.

Host: What would you say makes Chloe standout as a patient with scoliosis?

Shannon Kelly, PT, PCS: Well, she has great in-brace correction, and we capitalize on her ability to elongate within the exercises. She's my flexible girl, and so that's her secret weapon. She stood out early on, we work on a lot of breathing to open up closed spaces, and to allow the spine to correct to go basically put the blocks back in place.

And she brought in like a breathing ball that was a great visual for expanding everywhere, which is something that we were working on. And then in another session, she tells me she's working with an organization to provide these Higgy bears. And I'm like, what are Higgy bears? And they're stuffed animals that have little back braces.

So she did fundraising and provided boxes of Higgys that we can give to our patients who wear braces. And my favorite was the axolotl. I'd never heard of like what an axolotl was. I had to Google it and look it up. And my patient was asking for an axolotl for Christmas. So we ran and we got her an axolotl. Chloe, explain what an axolotl is. It's a salamander?

Chloe: It's kind of like a fish. They usually like live in lakes, I think.

Shannon Kelly, PT, PCS: Yeah, and I think they're, might be rare or extinction, and they do have some in captivity. I've looked up a little bit about it, and they're absolutely the most adorable salamanders. So there was this little axolotl stuffed animal with a little back brace, and my patient was asking for an axolotl for Christmas, and the mom's like, I looked it up, they grow, and you need this ginormous tank. And so, we gave her the axolotl stuffed animal with a brace, and she called it Axie right away, and it was just that feel good moment, and then able to circle back and tell Chloe how her efforts have made a difference in, you know, our patient's journey through having to wear a brace. 

Host: Each of you can answer this question if you like. I'll begin with you, Shannon. How is Shriners Children's a unique place to receive scoliosis care? What would you say?

Shannon Kelly, PT, PCS: I would say we have both the ability and the environment and support to create programs that will benefit our patients. So, like SSE is a perfect example. When we were first trained, we met and we designed a welcoming space for treatment. We resourced our sewing ladies to help make belts and bean bags and some of the props that we need so that none of our patients had like this barrier for beginning their program and we have a system wide SSE email so we can collaborate with other SSE trained therapists in the system and locally we meet as therapists and collaborate on program needs, tough cases.

Right now we're looking at expanding our visuals in our treatment area and just beyond like adolescent idiopathic scoliosis, we really do some hard cases at Shriners and we do it really well. We have skilled physicians that readily implement the most up to date and best practice for our patients.

We have a very robust spine program led by amazing specialists in pediatric spine conditions. And we work as a team to develop programs and protocols such as our halo traction or our pre and post op spine care. We are also growing with our international patient population and taking on challenges to meet their unique needs with a dedicated care management team and all the things it takes to make them feel at home while they're at the hospital getting their care for their difficult cases that they can't get locally for them.

Host: Those are all great answers, and it's obvious that you are passionate about what you are doing there, and thanks for sharing just about the program. And so for Carol and Chloe, from a patient's perspective, any comments on why you would say Shriners Children's is a unique place to receive scoliosis care?

Chloe: You can really just tell that they care about their patients and really want them to have a normal life as much as possible.

Host: That's great. Carol?

Carol: Yeah, I mean, for us, we were asked on her initial visit, do you want to do the brace here at Shriners? And, you know, we were like, I guess, sure. We didn't really know. But looking back, it's just been great.

If Chloe's needed an adjustment, the POPs team has been fantastic on making the adjustments to make it comfortable for her. I think her initial visit when she got it was like two hours because he just kept working at it when she'd say, this is uncomfortable and he'd just keep going at it and going at it.

And we've combined appointments where we see the POP's department for an adjustment if needed, and then we see Shannon for therapy. So to have it all in one location, in one building, has just been so great and convenient. And to Shannon's point, on our first visit with her, they gave us all the tools we needed at home, and you can, you can go above and beyond and make a wall ladder, but if you don't want to do that, they can give you the tools you need to adapt and to be able to do those exercises at home and just to have those tools ready and available to us. It's been great.

Host: Carol and Chloe, what a great endorsement. And Shannon Kelly, all of you, thanks for sharing your story and journey with us. Very informative as well as inspirational. Thank you.

Shannon Kelly, PT, PCS: Thank you.

Carol: Thank you.

Chloe: Thank you.

Host: That concludes this episode of Healing Heroes PDX with Shriners Children's Portland. To learn more, just head on over to our website, ShrinersPortland.org. If you found this podcast helpful, please share it on your social media and check out the full podcast library with other topics of interest to you.

Thanks for listening.