[00:00:03] Speaker A: Hello and welcome to this edition of Cook Children's Doc Talk. It's a very busy day here in the Child Life Zone at Cook Children's, so you may hear a little background noise. According to the facial reanimation team here at Cook Children's, Every year approximately 10 out of 10,000 children in the US over the age of 10 experience facial nerve palsy, which can have a sizable impact on not only the child's ability to express themselves, but also their confidence.
Facial palsy and weakness can affect a person's ability to express emotions, speak clearly or safely, eat and frankly. These kids may also deal with teasing from other kids.
These statistics had tremendous influence on our team of speech language pathologists, inspiring them to research and implement a program specifically designed to better serve this population.
They're here to share how they developed this program and their goal to build little smiles into big successes.
Joining us to talk about the facial reanimation program are Lori Cochran, Sarah Adams, and Teresa Jones. So let me introduce them.
Lori Cochran is the Speech Language Clinical Coordinator at Cook Children's. She holds a Master of Science degree and Certificate of Clinical Competence in Speech Language Pathology.
Lori presents frequently at the state and national level on a variety of clinical and professional development topics and serves on the Executive Council of the Texas Speech Language Hearing association and the American Speech language hearing association SIG 5 professional development committee.
The Feeding and Dysphasia Clinical Coordinator at Cook Children's, Sarah Adams loves to help babies and young children with their feeding and swallowing skills. Sarah also holds a Master of Science degree and a Certificate of Clinical Competence in Speech Language Pathology and is a frequent presenter at state and national events on a variety of topics including feeding, swallowing, and professional development.
In addition to her Master of Science degree and Certificate of Clinical Competence in Speech Language Pathology, Teresa Jones has completed extensive education in autism, augmentative, alternative communication, complex needs, and dysphasia. She has experience presenting at the local, state and national level and enjoys working closely with families and helping them develop the skills needed to become advocates for their child. Thank you all for being here.
[00:02:33] Speaker B: Thanks for having us to get us started.
[00:02:37] Speaker A: Theresa and Lori, can you talk about the facial rehabilitation program? What it is and what inspired you to create it, and why is it important?
[00:02:47] Speaker B: It began with one of our physicians who was on a previous podcast, Dr. Bae, reaching out to us and expressing a need for this service line for his patients. And then we found that a lot more patients beyond that department really needed us as well.
[00:03:02] Speaker C: Now we have gotten referrals from Neurology, from ent, from pediatricians around the area. And so we found it's really been beneficial to serve a lot of the kids around Tarrant county and surrounding areas.
[00:03:14] Speaker A: And Sarah, what does a patient's team look like and what treatment options are available? Are there ages that cannot be treated or that have better outcomes to receive therapy?
[00:03:24] Speaker D: Yeah, so the most important members of the patient's team are going to be their family and the patients themselves. In addition to that, we have the physician or the physician team that's working with the patient and the therapist that's the core members of the team. As far as treatment goes, we really individualize what treatment strategies or treatment tools we employ that are specific to what that patient's areas of need are. Some of those options that we use in our facial animation therapy include gentle massage to the facial muscles, stretching.
We use taping, biofeedback. We even include some manual therapy techniques in working with these patients. For some patients also, we work on adaptive strategies. So if they need help with eating or communicating in the meantime, if they need a bridge to get them through the point where they return to their baseline function, we will work with them to give them some adaptive strategies for those areas as well. As far as ages and outcomes, outcomes, we find that older patients that late five years old or older really respond best to the more intensive therapy models that we offer. They can really participate and follow the instructions for the stretches in the home program and the activities in therapy. That's not to say that younger than five years old, there's not benefit. There certainly is. It just might look a little bit different for those younger patients. We will certainly do our assessment and therapy may look a little bit less frequent with a lot more home programming and being creative and teaching the parents how you can work on it in a more younger, child friendly way.
[00:04:59] Speaker A: You mentioned parental and family involvement. What role do they play in the child's therapy?
[00:05:04] Speaker C: Well, as with all therapy here at Cook Children's, the parents and caregivers play a huge role as a part of the therapy process. Like Sarah mentioned, they are an integral part of the team.
We include them in the therapy sessions. So we're teaching the family to do these ex.
These different stretches. For younger children going home to practice their home program and do all these exercises, the parents are going to be the ones that responsibility falls onto the most. But for our older patients, our teenagers, we really roll things over to them more often, Help them figure out how to work this into their own routines, Give them the responsibility to be able to do that themselves, and we all work as a team.
[00:05:46] Speaker A: So what are some of the biggest challenges that you face in getting, especially older kids or even parents sometimes to be compliant?
[00:05:54] Speaker C: Yes, that's a big challenge as well. You know, I think it comes down to really meeting the needs of that particular patient where they are. So we spend a lot of our evaluation time talking to them about how this difficulty they're having really influences their life, how it's impacting them on a daily basis, what are some of the concerns they have. And then we try to tie that into what we're working on so that they can make the connection from knowing what they want to get better at. Here are the tools we have to help you with that, and here's how you can implement it.
[00:06:23] Speaker B: And I'd just like to add to that, like an example for maybe your teenagers, who of course, want to do things on their own agenda. Why am I doing this? Things that we like to find are the things that they enjoy. I've got an example. I've got one kid who every week we print out something with a different cartoon character. And he marks them off as he does them. And it's just something fun that he can do to remember to do his home program. And it kind of motivating for him. Cause he was realizing himself, I'm forgetting to do my homework. Well, let's create something fun so you will remember how to do it.
[00:06:55] Speaker A: That's awesome. So when talking about facial reanimation, the first expectation might be that it's only for kids and teens recovering from surgery and needing to regain movement. But it's also for those with conditions like Bell's palsy. So can you take us through a broader view of the types of conditions you treat?
[00:07:14] Speaker D: Sure.
[00:07:15] Speaker B: Bell's palsy is probably the most common one that we will see. Sometimes with Bell's palsy, you'll naturally get back to baseline. But for those kids, that things are just lingering a little bit longer. And it's really impacting either their ability to communicate with their friends or what they're seeing in the mirror or family photos, and they start to come to see us. Then in addition to that, some other diagnoses that we might see are due to a surgery they might have had, brain surgery, tumor resections, even some syndromes that they're born with, such as Moebius syndrome. We'll see a lot of those patients as well.
[00:07:50] Speaker A: Many of your referrals come from pediatricians and primary physicians. What does that look like in terms of collaboration and coordinating care?
[00:07:59] Speaker D: At Cook Children's the therapy team is highly collaborative with the patient's physician or referring team. A lot of our patients come to us and they're in a very acute stage of their illness or their recovery. And so a lot can change in a short period of time. And a lot of information is oftentimes really needed, especially if we are either post surgical or pre surgical or somewhere in our surgical journey. That input, that collaboration between therapist and the physician or surgeon happens at a really high frequency. And that information, those collaborative discussions can make an impact on the timing of other interventions, of whether we need to move something earlier or give a little bit more time.
[00:08:44] Speaker A: You clearly work very closely with the craniofacial and plastic surgery teams here at Cook Children's. But what about specialists outside of the system? What benefits could they expect for their patients and for a working relationship with your team?
[00:08:59] Speaker C: We do work with a lot of physicians in the system as well as outside of it. And so just the same, you know, we are very collaborative. We will reach out to that referring physician to the team, talk about progress, share information. We also rely on the family to do some of that as well. So if they have visits upcoming with their pediatrician or whoever referred, then they can be kind of a conduit for that communication as well.
[00:09:24] Speaker A: There are other facial reanimation programs. How does this one stand out from others and what makes it unique?
[00:09:31] Speaker B: So there are very few, but there are some other ones, especially out in this area.
The biggest thing that probably separates us is that we focus on pediatrics. A lot of your other providers are more experience with that adult population, such as those that have experienced strokes. But we're specific to pediatrics, and we have an understanding and completed a lot of that education for facial reanimation at the international level. There is something that kind of overlaps, is they may see a physical therapist as opposed to us. All of us are speech language pathologists. One thing that really separates us, though, is that we have a lot of background in that communication area and that feeding development area that is often impacted by facial palsy.
[00:10:14] Speaker A: Can you elaborate on what some of those, like feeding and other challenges are like for these kids and for the parents? Really?
[00:10:21] Speaker B: Yeah. So let's start with communication. A big factor might be that they're not as understood as they were before, and that's usually because of that weakness on their lips and in their cheeks that impacts not just maybe saying a P, a B, an M sound, but also their vowels. Because you don't realize how much you need your cheeks and your lips when you're talking. And so they might notice it's harder for their kids to get a message across or they're having repeat themselves, or they're having to reword things or use gestures to be understood. But when it comes to feeding, sometimes what we're seeing is there's food left over in their cheeks, there's food or drink falling out the front of their mouth because they're not able to manage it, or they're just not able to chew as well as they were before.
Laurie, Sarah, anything to add to that?
[00:11:06] Speaker D: I would like to add that so much of communication is not only what Teresa mentioned as the sounds and the clarity, but so much of communication is your facial movements, your nonverbal communication. And when you lose a lot of that movement, that's a lot of your voice in a way that's lost. And especially with us here at Cook Children's all being solely focused on the pediatrics, we can tie into their wants and their needs and help them with engaging with their peers and being more confident with taking that picture and wanting to go to school, wanting to participate in those things that they weren't wanting to participate in before because their sounds might be affected. But also their nonverbal communication, their smile, their wink, their eye roll, their eyebrow raise, all of those things are very important to communication too.
[00:11:55] Speaker C: And then I'll add too, our face is who we are. It's how people identify us. When you look in the mirror every day, that is the person you identify as. And so when you have a change, all of a sudden, one side of your face doesn't work. You look different, you feel different, you can't smile in the same way. And so you may feel very put off by that. And that has consequences for our well being and things like that. And so helping kids get back to where they were, who they feel like they are, is really important to us.
[00:12:23] Speaker A: Well, and that kind of leads me to what about that emotional part? Because there's gotta be challenges that maybe they got made fun of or just you mentioned confidence. They don't have that confidence. They look in the mirror and they see what other people see and they immediately start with the committee in your head kind of thing for kids, that can be really rough. What about emotional support?
[00:12:45] Speaker B: So a lot of Cook Children's does have some counseling available. And so we do offer that. We do screen for that impact on their emotional well being with our screeners and just conversations with them and with the family and really try to get an understanding of how Much is this child impacted by what has happened to them.
Sometimes we talk about what bullying is, since some kids don't recognize what that could look like, and also talking about some strategies they can use to talk through it that can help them in the meantime, while we might set them up with some mental health resources as well.
[00:13:18] Speaker D: Yeah, that's another huge benefit of being a part of the Cook Children's system and this program here is that we are often the screener, like Teresa mentioned, where we start to pick up and start to have some concerns that maybe there is an emotional component that does need a bit more addressing. And we have the resources here within our system to get in contact with or refer out, whether that's our mental health providers, our child life specialists, the physician. We just have really good access here at Cook Children's to pull in other members of the team as we see they're needed.
[00:13:51] Speaker B: And there's been some cases, too, where I've also pulled in some of the school counselors and had them get involved from a school standpoint, so they can help monitor things that I'm not able to see and parents aren't able to see to.
[00:14:03] Speaker A: So the most important thing is the outcomes for the patients. What kinds of outcomes can patient families expect, and what kinds of impact can this have on their lives?
[00:14:12] Speaker D: Outcomes can depend on the patient's diagnosis or where they are in their phase of treatment or illness. And we first educate about what we think appropriate outcomes would look like. We know about how long it takes a facial nerve or a nerve to regenerate over time, and that can give us an estimate of how long until we should see some progress. In some patients, that can look like up to what, four, six months before we start to see really big changes in movement. And that can be a long time. So that's one of our first aims when they come to see us at our speech appointments, is to give them that roadmap to know what to expect along the way. We, as Lori mentioned, shoot for very functional outcomes. We want to have goals that are related to something that is important to that child. Is that playing the trombone again? Is that eating a Big Mac? Is that taking a selfie with your friends and feeling comfortable having that posted on socials? We use those goals, and then we move towards those goals in a very methodical way to help us reach the maximum outcome that that patient can achieve. Hopefully, we get to those goals and we reach a place where they're happy with their facial movements. And conversely, though, if we find that we're not making the progress that we would hope to see, or that's another conversation that we have. And that's another point where I'm going to tie it back to the collaboration that happens between our team here at Cook Children's. If Lori or Theresa or I are not seeing progress as we would expect, we're picking up the phone or we're sending a message to the surgeon or to the team to say, hey, is there something else that needs to be addressed? Is there something else that could be going on?
So it's nice to have those resources when we feel like we are unfortunately not meeting the goals or the expectations.
We've seen some really cool outcomes with our patients. I want to talk about that because it's really fun to talk about the victories. Most often we hear feedback from the patients or from their parents about they just seem more comfortable in their skin. They just seem more comfortable again, going to play games with their friends or going to Girl Scouts. They're more interactive than they were before, whereas they were maybe observing them to withdraw a little bit.
I had one patient, I mentioned the selfie on Instagram that that was when she knew she met her goal was I took a picture with my friend and I felt great about that getting posted and got excited to see the likes come in on the pictures. Theresa, you've had some really great I've.
[00:16:42] Speaker B: Had some amazing ones. The first one that pops into my brain is a girl who was entering college, pre med, in fact, who had been experiencing this for several years before she came and did treatment with us.
And her goal was just getting that symmetry in her face whenever she was smiling and in pictures. And another goal was just being able to eat in the commons area in college and being able to eat with her new friends.
And the plus side of her is she was in these pre med classes and could understand this anatomy and physiology that I was asking so quickly that she saw such really nice progress. And by the time we discharged, her sister got married. And in all the family photos she had a perfectly symmetrical smile and was so joyed by what she saw.
[00:17:27] Speaker A: That's awesome. So if a specialist pediatrician or primary care doctor wanted to consult about or refer a patient, how would they go about that?
[00:17:36] Speaker C: There's a easy referral process. They can send over a speech referral to our rehab department here at Cook Children's and easily, if they're an internal doctor, they can put that in the system.
Any diagnosis that's appropriate for that facial weakness issue. If there's a syndrome associated with it or an injury, they can add that and then usually facial weakness is the diagnosis. That would be our treating diagnosis. And so we will get those and triage them appropriately to one of our folks that do this.
[00:18:06] Speaker A: So any future plans for growing the program? What's the long term vision?
[00:18:12] Speaker B: We're growing our program to include TMJ dysfunction, so temporomandibular joint dysfunction. And so we work closely with our physical therapists for kids that might be experiencing any of that, maybe dental trauma, mandibular surgery, maybe they don't open their jaw enough for some reason. And so that's something that we're adding kind of part of the service line to also serve that population.
Also we'd like to add continual growth in making sure that our community knows that we're here and we're available to support these children and that we are seeing progress and we're happy to share what we know with them. I think a lot of the families that I work with leave these sessions being the facial reanimation therapist. I talk them through the anatomy, the physiology, why we're doing these exercises, why we won't be doing a certain type of modality. And so I want them to lead with this knowledge. And so that's kind of our goal for this, is just letting the community know that we're here when you're dealing.
[00:19:14] Speaker A: We've talked a lot about with the kids, but moving forward, like what have you learned that maybe you would take forward in dealing with families?
[00:19:22] Speaker B: I think like with all of our sessions, we're very transparent on here's what we're seeing right now, here's where we think we might go, we might exceed it, but here's where we think we might go. And being very straightforward at the get go, I think from a parent standpoint is, you know, if we're talking you through things, especially if they're an older child, we're more likely to see progress. But even if they're under that five years old is still coming to see us. So we can give you some strategies to help in the meantime until they're ready for, from a language development standpoint or a cognitive standpoint to see us for some additional therapy. There's not a timeline when we say absolutely not. We've seen kids a couple years post from their first change that they started noticing. And so then they come back to us and we address more things. So it may be longer term that we might be seeing them different chunks of time to work on certain things. And also just that readiness for that child. And so knowing that as a parent is so important of just really following your child's lead on their readiness for a lot of things.
[00:20:22] Speaker A: Sue, is there anything else before we wrap up that I haven't asked you that you feel is important to share?
[00:20:29] Speaker B: Something additional to add is if you do a Google search for anything for facial palsy, you might see something called biofeedback or semg.
Sometimes that also gets confused with neuromuscular electrostimulation, which is not something that we do because it can actually cause extra movements that we're not looking for. But the biofeedback is so unique that we can add these stickers to their faces to better understand what side is moving, what muscle is moving. And it's just kind of a fun way for kids to see, oh, my face is now resting and it's relaxed and now it's activating and it's fun. And we have these little games that they can play on the computer that makes it just even more enticing for them and helps them really see the progress too.
[00:21:14] Speaker A: That's really, really cool. So is that something that you're already doing?
[00:21:18] Speaker B: Yes.
[00:21:18] Speaker D: Okay.
[00:21:19] Speaker B: So that is one of the modalities that we'll do for some of our patients, especially those that maybe need to learn that relaxation piece. Just as important to activate those muscles and utilize those muscles. It's just as important to learn when they're relaxed.
[00:21:33] Speaker D: Yeah. Because often we are not just working on reactivating those muscles that stopped working or reduced function, but sometimes patients will have over action of other muscles that are trying to almost overcompensate for that. And so that's another layer of the onion that we have to work on. And that's one of the methods, the SEMG is one of the methods that we'll use, like Teresa said, to work on that relaxation, to try and like move away from that overuse over activation of the muscles we don't want going quite so strong anymore.
[00:22:02] Speaker B: And to kind of layer on that. And talking about parent outcomes, I think something important for parents to understand is that these muscles are tiny, very tiny. And they do small movements, but impactful movements for us to show expression, for us to eat, for us to communicate. And so give your children some grace when we're doing these therapies, because we want them to do slow, gentle movements that are correct as opposed to effortful and movements that are wrong, that are recruiting muscles that we might have to fix on the tail end. So give them a little grace. These muscles are so tiny. And they're working so, so hard to make the progress that they're aiming for.
[00:22:40] Speaker A: Awesome. Well, thank you all so much for taking out the time to share this amazing program and the work that you're doing. It's been a real pleasure and also a great learning experience.
[00:22:52] Speaker B: Thank you for having me. Thank you for having me.
[00:22:54] Speaker A: This has been great for our audience. You'll find more information about facial reanimation, speech language therapy, and rehabilitation programs on our
[email protected] you can also access Clinical Pathways on the Health Professionals section of the website. And while you're there, sign up for our Doc Talk newsletter. Want more Doc Talk? Get our latest episodes delivered directly to your inbox when you subscribe to our Cook Children's Doc Talk podcast from your favorite podcast provider. And thank you for listening.
[00:23:28] Speaker C: Sam.
