This is a transcript from our podcast episode published May 9th, 2022. The podcast episode is offered for .1 ASHA CEU (introductory level, professional area). This transcript is made available as a course accommodation for and is supplementary to this episode / course. This transcript is not intended to be used in place of the podcast episode with the exception of course accommodation. Please note: This transcript was created by robots. We do our best to proof read but there is always a chance we miss something. Find a typo? Email us anytime.
A special thanks to our Contributing Editor, Caitlin Akier, for reviewing and editing drafts of our transcripts. Her work helps keep our material accessible.
[00:01:39] Kate Grandbois: to welcome two guests onto the show today, which we're so excited about. Welcome Jennifer Leighton and Dr. Margaret Bowman. Thank you. Um, so little anecdote, all four of us had, we worked together once upon a time in the days of your many years ago, the four of us worked [00:02:00] together in this really unique outpatient hospital setting.
And this hospital setting was unique because half of the office was supported by an outpatient rehab hospital. And the other half of the office was supported by a medical was more of a, not a rehab hospital was I want to say a regular hospital, a medical hospital. None of that makes any sense. But my point is that we all share.
Um, an office, we shared a kitchen. Um, we shared interoffice space and half of us were therapeutic professionals on the other half were medical professionals. And it was this really unique, um, work experience because we got to participate in so much collaboration. There was so much collaboration between the therapeutic staff and the medical staff.
Um, and because of that collaboration, we learned so much from our medical counterparts. We learned about medications, medication, side effects. Um, we got to have all of these casual discussions about communication and pain and medical needs. Um, [00:03:00] and we are really excited to, um, dive a little bit into that today.
And discuss the relationship between complex medical needs and, uh, communication deficits. Um, we chose this topic because as speech and language pathologists, we work so closely with clients and students who do have complex medical profiles. And unfortunately in most speech and language pathology work settings, we don't get the opportunity to work closely with medical professionals and attend grand rounds, grand rounds lectures on, um, different types of medical interventions.
So, um, we're super, super excited about this before we get started, though. I wondered if, um, Jen and Dr. B, you guys would tell us a little bit about.
[00:03:45] Jen Leighton: Hi. So I'm Jen Layton and I am very excited to be here today. I have been a speech and language pathologist for over 30 years. Um, I started my career working with adults with neurological [00:04:00] difficulties on a traumatic brain injury unit.
And that. Background gave me tremendous insights into the students I have been working with for the last 20 years. Um, fortunately I had the opportunity to work with Dr. Bowman, um, for six years at the clinic and I am very grateful that I've had that background.
I feel like I bring that information to my job every day. And that was one of the reasons we thought this would be a great podcast to share with people. And, um, I currently work in a collaborative with students three to 21 with complex communication needs with a lot of AAC needs. And prior to that, I was a speech therapy consultant to the schools for AAC.
[00:04:43] Dr. Bauman: Great. All right. Hi, I'm Margaret Bowman. I'm a child neurologist by training. Uh, I began my career mostly interested in individual children, uh, who have learning disabilities or learning. Uh, somewhere along the line, I got [00:05:00] a little bored in the clinic and decided I would do some research. Uh, so I camped out and we did some research as it relates to brain function, particularly in individuals on the autism spectrum along the way, though, I've continued to do the multidisciplinary kind of approach that you've already heard about, which I think has been extremely valuable.
Um, Jen talks about how valuable it was for her. I think as a neurologist was extremely valuable for me. Uh, we don't in our training have exposure to people with other disciplines. I would at least not outside of the medical field. And so the ability to work with individuals who would come from a therapeutic side of things and to realize that people look at, uh, the same patient from a different angle is really extremely bad.
Uh, for those of us who were trying to treat individuals from a medical perspective, we don't always appreciate some of the other aspects of the child [00:06:00] or adolescent development. And so this has been a real experience for me as well, and I have to be here and I hope that we can all contribute and share information together.
That'll help everyone. So thank you very much for joining us.
[00:06:16] Kate Grandbois: Um, we're so excited to have you both. Obviously you both have a tremendous wealth of experience, um, and it's just nice to see your faces. We've both known you for years, so it's so nice to be here altogether and have this, have this really great discussion.
Um, I am going to just quickly read through our learning objectives for the episode, as well as our financial and nonfinancial disclosures. Sometimes people write in and ask me to skip this because it's boring. I can't Ash. It makes me read it. So we will try and get through this as quickly as. Learning objective, number one, discuss the importance of considering medical conditions for individuals with complex communication needs learning.
Objective number two, discuss ways to identify when individuals with complex [00:07:00] communication needs may be expressing pain learning. Objective number three, identify at least three medical conditions that could be associated with complex communicators disclosures. Jennifer Leighton's financial disclosures.
Jen is an employee of a public school system. Jen's nonfinancial disclosures. Jen is a member of Attia and Masha. Dr. Bowman's financial disclosures. Dr. Bowman is employed as a neurologist in various outpatient hospital settings. She's also a researcher through the Boston university school of medicine, Dr.
Bowman's nonfinancial disclosures. Dr. B is a member of the American academy of neurology, the American academy of pediatrics, the international society for autism research and the society for neuroscience. She also serves on various advisory. Kate that's me. I'm the owner and founder of groundwater therapy and consulting LLC, and co-founder of SLP nerd cast my nonfinancial disclosures.
I'm a member of ashes, SIG 12, and serve on the AAC advisory group for Massachusetts advocates for children. I'm also a member of the Berkshire association for [00:08:00] behavior analysis and therapy, mass ABA, the association for behavior analysis international and the corresponding speech pathology and applied behavior analysis specialists.
[00:08:09] Amy Wonkka: Amy that's me, financial disclosures. I am an employee of a public school system and co-founder of SLP nerd cast. And my non-financial disclosures are that I'm a member of Asher, SIG 12, and I serve on the AAC advisory group for Massachusetts advocates for children.
[00:08:25] Kate Grandbois: Okay. Boring stuff is over. Now we get to talk about all the fun things.
So I think it might be a good place to start to just address the obvious question. Why is it so important to consider medical conditions? When we are treating individuals who are either non-speaking minimally speaking or have complex communication needs, what is, what's so important about this relationship?
[00:08:49] Dr. Bauman: If you're asking me, I guess you are, uh, I think it's critically important. I think because. Most of us simply know that if we don't feel well, we're not going to do well. Uh, and if [00:09:00] we can't identify a child's discomfort, then how can we expect that child to, uh, give their best or put their best effort into and make the progress that they're capable of making it really is critical.
It's not, not obvious about how one does this and it's, it can be challenging to make these kinds of diagnoses. And furthermore, it's also challenging about how you convey your suspicions, uh, to a parent without having to, uh, you know, alarm them so to speak. Uh, but I think that it, it is critical that somebody at least, um, raised the suspicion to some, uh, to a parent that there could be some medical concerns and that, that it should be checked out.
And
[00:09:41] Kate Grandbois: I think, you know, it also, you know, individuals with complex communication needs and individuals who are non-speaking or minimally speaking. They have a hard time communicating. So, you know, being we as speech and language pathologists, we think so often and talk so often about communicating basic wants and needs, but [00:10:00] communicating about pain and communicating about physical wellness is so critically important.
Um, and I think for SLPs, you know, in the various, you know, different work settings that we have not only outpatient clinics where we used to work with you, but school settings, or, you know, outpatient clinics that don't have access to medical information, having a look, you know, having that as a lens and really making sure that's a focus is, is critically important for life.
It really.
[00:10:29] Dr. Bauman: Well, I, I, I totally agree. I think that they're probably just to take time here to expand on that topic a little bit. . It's extremely difficult. They have no way to verbalize or communicate to us that they're uncomfortable.
Uh, so for example, there have been circumstances and I'll just give a scenario of a young woman. This is a young adult, came into the office, hitting her head repetitively, uh, saying head hurts. Uh, and that was the one thing that she could apparently [00:11:00] say, and her parents came on and they were saying that they thought she had.
I said, well, you know, before we go that route, I think we, she, she should see a gastroenterologist. Okay. Now this is not anybody that's got any kind of gastrointestinal symptoms whatsoever.
Okay. Let's just start with that. All she's doing is hitting her head repetitive, long story short, they go to the gastroenterologist, which only they didn't think I was crazy. And they went to that person and it turns out that they did whatever the workup was. And this young woman ended up with gastroesophageal reflux disease in the soft vaginitis.
They got treated and no more head hurts or heading her head. Okay. So I think in this circumstances, what you're getting is a woman who's telling you, I don't feel well. And. She's not telling you this is her one way of saying I don't feel well. It doesn't necessarily mean my head hurts. Okay. So I think how you translate what somebody is telling you is another issue, another scenario.
And I'd like to tell stories, because I think they, I remember stories better than, [00:12:00] you know, having, uh, is to say that was a child that I saw in California. And this was a four-year-old and I was the third neurologist. And the story here was that this was a child who had seizures and everybody had been treating the seizures.
And no matter what they did, he was still having these seizures and what should they do? And so somehow I ended up being the certain neurologist. So I hear the story. And about two thirds of the way through the visit, the mother says, oh, well, by the way, I have a video on my cell phone of one of these episodes.
So she turns on her cell phone and I look at it and I. This is not seizure. This is Castro intestinal. This is a kid who's lying on the floor, all crumped over kind of doubled in pain on his stomach. Uh, and clearly looked like he had gastro and some kind of gastrointestinal problems, , a kid goes in the following week, and then DAS copy and the colonoscopy whenever she did. Anyway, I get an email. And now that I'm back on the east coast, uh, basically he says, yeah, Esophogitis good call. Okay. [00:13:00] So this is a kid that's been treated for seizure disorder that he didn't have for a year and a half, because nobody was, it's hard for where the, even the neurologist or the doctor to always understand or envision what a parent is describing, or at least it is for me.
So yeah. Coming out of a neurology background when somebody's describing something and they say, well, I think it's seizure Mir your brain automatically slips into what you've been trained to think about. Okay. And I think the message here. I hope throughout this whole, whole presentation is that all of us have to think out of the box.
We have to think beyond our own discipline. Uh, and I think that's the real advantage of working in a multidisciplinary environment. But to, to this kid who had been treated for a seizure disorder, he didn't have for a year and a half, and this is why it wasn't getting any better because it was the wrong thing.
And I, I frequently say to parents that if, you know, if your child is presenting with some kind of symptoms, [00:14:00] know if it's a behavior problem or whatever it is, please take a video on your cell phone. Everybody's got a video on their cell phone. Please take a video on your cell phone and let me see what it is that you're actually talking about, because I don't want to misinterpret what it is that you're saying.
And that's just been an enormous. Quite honestly. So I think it, it's not only that the child or the adolescent or the adult is having trouble communicating it's also, those of us in healthcare are having trouble understanding what the person is trying to communicate. Uh, and it may be that they are, they're giving us symptoms that none of us would predict would be consistent with the diagnosis that they really had.
So if it's.
[00:14:43] Kate Grandbois: You just said so many things that I want to talk like so much about gonna try and I'm gonna try and pick that apart a little bit. I think, um, one of the biggest things that you mentioned that stood out to me was this relationship between, between the behavior that you see [00:15:00] and the possibility of it being caused by physical discomfort or someone not feeling well.
Um, and Jen, I know that you, you have a lot to say about this because you and I have had this conversation a lot before, um, in terms of, you know, the ethics around making sure that medical issues are ruled out and you can't just quickly be like, oh, well, that's how they've always been. Or, you know, that's, that's just how they are and dismiss something when you, without considering that layer of, of, of, uh, Possibility that it could be physical discomfort.
I don't know if Jenny, you want to say something about that?
[00:15:36] Jen Leighton: Well, the one thing that has struck me, um, particularly listening to, um, and other people, Dr. B, who worked in our clinic was that what things look like aren't necessarily what they are. So that has been like the greatest lesson I feel. So this young gal, who's saying my head hurts, my head hurts when in fact it's [00:16:00] not anywhere near their head.
And I think it's, it's a little bit twofold, right? Like something can look like one thing and it's actually like potentially GI. But the other piece is that, um, I've learned that a lot of my students who have limited verbal means are able to learn something's wrong. Right. They can indicate some things wrong, but the abstract concepts of pain.
Become so incredibly difficult. And like you said, localizing pain, like they don't know where it is. Um, recently I've had a couple of students who have been successful saying something's wrong, something hurts. And I feel like that's a really big step and of course, giving them the communication to do so.
Um, but then again, then we it's left to us to try to figure out, okay, well, what is that? And what, what could that be? Um,
[00:16:45] Amy Wonkka: yeah, I think you raised such a good point, Jen, because we're also not inside somebody else's body. So it's very hard as the speech language pathologists, you know, we talk all the time about teachable opportunities and seizing the moment.
And if somebody hits, you know, fallen and scratched their [00:17:00] leg and they're crying and you can obviously see what just happened, you can certainly model the relevant vocabulary in that situation. But so many of these more complex medical issues, like what Dr. Bowman is talking about, we, we can't be inside their bodies with them, so we're not even able to have.
Attach the language to that, uh, because you know, we don't know how it feels. We don't know where, where the feeling is and it is, it's really challenging. And I think, you know, the idea, I agree with you in terms of teaching sort of a broader catchphrase, like something's wrong. Um, at least as an alerting phrase,
[00:17:40] Dr. Bauman: I think that's an important statement.
I had, uh, one place. I was giving a talk. And after the raising these kinds of questions that you all have discussed and a very bright young woman looked like she was in her twenties, came up to me afterwards and said something like, you know, when I get sick, it takes me three days to figure out what's wrong with [00:18:00] me.
I'm thinking to myself, here's a very bright articulate person who cannot figure out what's wrong with her. W what do we expect for a non-verbal into persons I, it really, it really brought home to me. The real struggle. I think it is in terms of, yes, we can teach people to say, okay, I'm uncomfortable, but yeah, identifying where that is or what it is.
That's a whole new ballgame. That's really a chance.
[00:18:28] Kate Grandbois: Um, I think that, you know, there it goes without saying that as SLPs, we have a really unique responsibility here to address these kinds of things. And Jen, I love the point that you made about when we go to teach communicating about pain and health and medical needs, how abstract some of that languages, um, even my own, my own children, you know, the difference between an ache or a dull pain or a sharp pain or a tingling sensation.
I mean, there are so, you know, when you really, and [00:19:00] I'm sure Dr. B you have comments on this as a, as a medical professional, you rely so much on. On patient report of describing what, you know, what the physical manifestation is. Um, and so I think that there's a, there is such a responsibility there for us to try and, um, either not use that or not teach that kind of vague and abstract language and use more of a catch all or really consider what might be the most effective way to communicate some of those things.
The
[00:19:32] Jen Leighton: other piece I think about too, is the behaviors that we see, a lot of times when there doesn't appear to be an antecedent, um, it's a question that I guess gets raised in, in our, in my mind, but, um, you know, potentially not in everyone's minds, right.
That maybe there is pain that's unseen and an unexpected and you know, is it happening right after a meal? Is it happening when the child's hungry? Is it happening after a bowel movement? Like, you know, where are we seeing it? And. [00:20:00] And even then it's really hard to determine, right? Dr. B I
[00:20:02] Dr. Bauman: mean, Yeah, it is, uh, I mean, I could go on and on about a number of scenarios, but it's all right.
If I keep talking about my little anecdotes, because I think that to me, at least anecdotes help. Uh, another, another anecdote is a young man who was 12 years old at the time. I mean, I would guess I would call him the gentle giant, uh, just as nice. Autistic young man. And, uh, Sunday night, of course, I get a phone call from his mother that she's locked herself in the bathroom that he's having these horrible, aggressive behaviors towards her and, and self-injurious behaviors.
And I mean, just totally out of character and she's, what should she do? We, her husband of course, is out of town, which is sort of typical. And so there she is by herself and I said, well, you need to get to an emergency room as soon as you can. I've been, I think, you know, maybe you can call somebody from the school to help you, blah, blah, blah.
Anyway, so, uh, so anyway, Long story short, she's able to get to the emergency room and they end [00:21:00] up in the psychiatric emergency room at one of the major hospitals . Good. And typically not to be snarky about this, but most of the time psychiatrists don't do a physical examination. They don't, they, you know, that's not their style so much.
However, it happened to be that particular night that somebody did a physical examination in the psychiatric emergency room. And long story short, the kid turned out to have an otitis media, had an ear infection. And so they shot him up with penicillin. He fell asleep in the emergency room and got up the next morning and he was perfectly white walked out the door.
So again, I mean, this is a situation where, you know, just an ordinary ear infection this kid was just going through the roof over this pain and discomfort.
You're aggressing towards everybody and it turned out it was a otitis media and, you know, just fortunately somebody found it and printed it and got taken care of. So yeah, it's, as Jen said, the behaviors, you see [00:22:00] these odd behaviors, you're sort of like Sherlock Holmes. You're going to have to say, okay, is it, this is it, this is it.
This isn't that's because lots of times. There aren't a lot of localized clues, unfortunately. Uh, one other scenario, and then I'll, I'll be quiet. Uh, was another, uh, the other child who was having sleep problems, uh, he couldn't, he'd get not, you know, he's snoring, he's waking up and blah, blah, blah. And I said, you know, maybe he's got big tonsils and adenoids.
So I said, I think you need to see an ear nose and throat specialist. So I'd send them to that. They come back the next time. And I said, well, did you see the ear nose and throat specialist? Yes, we did. I said, well, what did he say? He says, he's got a big tonsils and adenoids. And I said, well, is he going to take them out?
And then she said, and the mother says no. And I said, well, why not? And the answer was well, because he's autistic. I said, what? I said, I don't care what his diagnosis is. The kid needs to have his tonsils and adenoids so we can breathe so we can sleep. So it [00:23:00] gives, it goes back to this, this, I think something that Jen already alluded to There still that sense that some of these behaviors are just part of, well, you know, after all he's autistic or she's autistic, so that's why they do what they do. No, there, I don't care what the diagnosis is. If there's an odd behavior or there's a new behavior, we it's on us to try to figure out what's going on.
[00:23:21] Kate Grandbois: And I love, I love that you state that because I think, you know, we could just repeat it over and over and over again, to make sure that it hits home, um, that, you know, with when, when you're looking, when you are familiar with a student or client or patient, um, and, and this is something that I learned from you through our, like, even more recent conversations, any new behavior is concerning and should, you know, trigger your question of, is there something medical going on?
Is there, um, you know, is there something happening? And I, I think that that is something that often gets ordered not often, but can get lost in [00:24:00] the. Educational model or treatment model when you're starting, when you start talking about modifying behavior. Um, and I think it's critically important. And another thing that I wanted to bring up that is related to something that you said earlier was, you know, this idea of behavior as communication.
And if someone doesn't have communication skills or they're have emergent communication skills, or they're minimally speaking non-speaking and they aren't able to communicate about pain, how long are they going to have to go without medical intervention? How long will something go untreated? How long will they go without effective treatment and how, you know, we really need to consider that as a backdrop when we see these changes in behaviors, because they could be not just in a little bit of an earache, but they could be an excruciating pain because it's been there for however long, just thinking about your example with the ear infection.
[00:24:56] Dr. Bauman: Well, I think your point's well taken. And I guess one other example I would [00:25:00] have with that is that, uh, as was mentioned early on, I do research and we are research that relates to looking at post-mortem brain . And one of the cases that we got along the way was a young man who died of a ruptured dependence.
And he I'm sure he had terrible abdominal pain. Nobody picked up that he had a pending appendicitis and a rector pending and he died. So, I mean, it's not just only, you know, let's take care of so-and-so's behaviors or whatever, but I mean, is this going to be a disorder that's going to potentially be life-threatening for the patient in question?
I mean, that's overly dramatic perhaps, but it's. It w we can't afford to just sort of slide by some of these things. I think that we really do need to take a lot of it. Seriously. I think there's a huge tendency to say, okay, we'll use behavior management and I'm a big proponent of behavior management. I think that's great.
Uh, there's a tendency to say, well, we'll put him or her on XYZ medication. Uh, um, not so [00:26:00] enthusiastic about that. Although I know it has its place, but if you're, you want to just cover it up with some medication, pardon me, medical band-aid then that's not going to get you anywhere. It's not going to help the child unless we figure out what the underlying problem is and can treat that problem.
Well,
[00:26:17] Amy Wonkka: not only can it be, it can be a matter of life and death, but it's also, even if it's not a matter of life and death, it's a matter of quality of life and all of our clients should be entitled to the highest, possible quality of life. So, I mean, I think whether it's an ear infection, that's going for an extended period of time without treatment that's causing somebody's pain, like that's also something that we need to be aware of and on the lookout for.
Um,
[00:26:45] Kate Grandbois: so all of those are important. I
[00:26:48] Jen Leighton: have a question, Dr. B, have you ever, um, like, I dunno if there were children or families who have a little bit more difficulty accessing, you know, this type of [00:27:00] diagnostic, um, that would be required for GI, like. Or if a parent's afraid to have their child put out and they can't do an endoscopy on them or, you know, whatever it would be like, have you ever treated GI issues, prophylactically?
Is that ever done or is that not really done in the.
[00:27:18] Dr. Bauman: I think most of, most of the gastroenterologists that I work with, typically what they typically do is get the story and then they, they start off with some kind of medical management. So, okay. Well, this sounds like it's reflux. So I'm going to try to, um, I'm going to give X medication and we'll try that for a couple of weeks and then we'll have a conversation.
And do you think it's any better than sober? So I think most of the time they do try to do something without having to do a procedure, uh, many times, however that doesn't work or they, you know, they try a second medication and that doesn't work so that they end up having to go in and do a procedure in any case, uh, and to try to confirm the diagnosis and then, you know, do something that's a little more specific.
So yeah, I think [00:28:00] people do do that. It's not something I would do because I'm not a gastroenterologist. Uh, so, you know, I'm not sure I'd be the right choice, but I think some of my colleagues certainly do that and do it well. Sure. And
[00:28:12] Kate Grandbois: I wanted to go back to something that. That one of you said earlier about just how sort of jumping off from the sensory processing difference and how some of that I think regardless of diagnosis can also just be respecting that you don't know how someone else's body is experiencing pain.
So, you know, I, I think that w that's part of that autonomy of, uh, respect of, um, what's the word I'm looking for? Integrity, like respecting someone else's autonomy and integrity, to be able to, um, you know, experience things that are that's different than the way we experience them. Um, and before we sort of jump into our third learning objective, I wanted to ask you Dr.
B about, you know, we've talked a lot about [00:29:00] behavioral, uh, communicating pain through behavioral means. Engaging in aggressive behavior or any other, you know, any change in behavior. And I didn't know if you had any anecdotes about something that was very subtle, um, you know, any sort of, you know, instead of the gentle giant, who was all of a sudden engaging in aggression, um, you know, are there any in your experience, any changes in routine or behavior that also have indicated pain that weren't, you know, huge changes from from day and night?
[00:29:32] Dr. Bauman: Hmm. I have to think about that, I guess. Uh, you know, sometimes I guess kids who have sleep problems, uh, I I've seen some changes in behavior that have come from dental. Uh, so somebody has a dental point pain of some kind. So they're. Eating habits have changed somehow that they got there, they used to eat whatever it is they used to, but now they're not, are they not chewing anymore?
Or, uh, they w [00:30:00] they won't take what they used to your favorite food, or what have you ever seen seen something like that? And so one thinks about, you know, when say a cavity is this some kind of dental abscess or something of that sort, and I've seen that happen. So I'm sure that that can happen. I'd have to think a bit of that a little bit more, the more, the more circumstances that seem to stand out in my mind are the ones with the real dramatic.
Yeah, sure. I
[00:30:25] Kate Grandbois: just, I think what I, the point I was trying to make, um, was, or making that connection between, it's not always just a huge swing of a change. Um, you know, it's really taking the time to ask the family or ask the parent, are they having. Has anything else been off? Has anything else been to skew, um, and making sure that considering pain or considering medical issues is sort of a backdrop in your thought process was more my, my
[00:30:49] Dr. Bauman: thinking, well, I think that, yes, I, one of the other topics I think that you have on your list is, is the issue of mitochondrial disorders.
And [00:31:00] I think this is one of those scenarios. Uh, it's it's kids who, kids who, well, first of all, kids who go through regression , they had been talking now they're not talking anymore.
And they go through this development aggression, but there are a subset of kids who go through multiple episodes of regression over a period of time. So you have a seven year old who's regressed. I mean, that's, what is that? That's not something that we're used to hearing about and we've discovered that this is one of our clinical flags to start looking at.
Yeah, one of the mitochondrial disorders and whether there's something we should be able to do about that, there are kids who have been okay, physically, I guess, um, maybe a little bit low tone, but then start having periods of sort of what I would call low, low endurance or easy fatigability. And so somebody could say, well, that's a behavioral problem, but you know, you have to actually take that seriously again, is this a signal that this is some kind of a mitochondrial problem?
You know, although we believe that many of the [00:32:00] mitochondrial disorders have a genetic, some of them having a genetic basis, it's not something that you necessarily see upfront. You may see it years later, or, you know, you can show up at someone unpredictable time. So I think, you know, any, any, I think your point is well taken any kind of changing behavior.
That's kind of odd needs, need to investigate. Can you
[00:32:23] Kate Grandbois: describe what it might look like for people who don't know what a mitochondrial disorder is? I mean, just like giving us a general overview of mitochondrial
[00:32:31] Dr. Bauman: disorders. Okay. Well, he'll get about three hours in a nutshell,
[00:32:37] Kate Grandbois: 10 sentences or less
[00:32:38] Dr. Bauman: go. There are a whole host of different mitochondrial disorders.
Uh, so, and there, some of which I have to confess that I'm not skilled at that. Basically might've mitochondria are the inner engines for every cell in your body. So it can involve multiple organ systems. Uh, it's not just brain, it's not just behavior. It could [00:33:00] be GI. It could be some of these other things we've already talked about, but that's one of the same was as if somebody has multiple organ systems involved.
Some of the other signals are the ones that I've already talked about with the easy fatigability for physical endurance, uh, episodes of regression. Uh, I had one other night, I've just lost it in my brain. But, uh, so th those would be the ones that we'd started thinking about. And yeah, generally speaking, we try to, to work those, those kids up, um, mitochondria are sort of the, uh, well, I guess I said the inner engine, rarely cell in your body, but they're what they call organelles that, that live in, in the cells.
And so they are a real entity and they do require a certain substances sort of like gasoline for the engine. And so one of the things that we do is to try to identify, you know, somebody. Falls, it falls on the mitochondrial spectrum, so to speak and that we've tried. It there's really no hardcore [00:34:00] treatment for mitochondrial disorder.
However, the, uh, mitochondrial society put out a consensus paper probably in 2014. Uh, and one of the recommendations they make is for what we call a mitochondrial cocktail, which is a group of vitamins that the mitochondria rely on for its guests and the engine. And we have those, those substances compounded, which is preferable, is certainly for kids, because otherwise they're going to be taking a handful of pills twice a day, but have them compound it into something that the child will actually take and take it twice a day.
I would tell you that we've got many kids who've responded very nicely to the. I had one young man, for example, who, uh, wasn't speaking, uh, we, we put him on the cocktail. He language began to emerge. Uh, then the insurance company refused to pay for the cocktail. So they was off the cocktail and his language skills regressed.
So then we were finally able to do a [00:35:00] medical necessity letter and they are insurance company went back and paid for it again. And fortunately he was able to recover the language that he lost. He uses a device pretty effectively for communicating and does, does use some verbalization, but mostly it says device, but, uh, anyway, he's.
Uh, great guy. He's now a young adult. He works in a nursing home where they think he's the best thing since sliced bread and works in the mail room and the cafeteria in the laundry and blah, blah, blah. So, I mean, I th I think it, it gets back to changing somebody's quality of life, too.
I mean, it changes.
[00:35:34] Kate Grandbois: Sure. I mean, and I think we're sort of getting into that third learning objective, reviewing different medical issues that can sometimes overlap with people who have complex communication needs. And another one that we'd sort of touched on earlier a little bit in one of your anecdotes is seizures.
Um, and I think that, you know, I, I know speaking personally, I've had several of my students and clients more than several, [00:36:00] many of my students and clients over the years, um, also have, um, a seizure disorder. And I wonder if you could tell us a little bit of what kinds of things as if a speech pathologist listening has a student or client or patient on their caseload and they are assessed, they suspect a seizure disorder.
What are some of the things that you would recommend that they look at?
[00:36:23] Dr. Bauman: Well, first of all, I think mostly what I've gotten from the speech pathologist who I've worked with is basically somebody says, well, he, when, when I'm working with him or her, uh, they often have these staring spells where they look like they're kind of out of it.
And I called the name and they're not responding. And then, you know, a few minutes later they come back, uh, occasionally they'll, they'll describe some kind of twitching or unusual behaviors, uh, some little shaking things that the kids do, but most ones that I've heard from other. Maybe just the one that heard I've been this business of staring spells, which are, you know, I, I'm not like we used to see a lot of what we call used to [00:37:00] call Petit mal seizures were just both staring.
So I can't remember the last time I saw petty mouse danger. They, most of them are now what we call complex partial seizures. Um, and so, you know, if somebody is reporting that usually the speech pathologist or the occupational therapist, whoever, uh, reports that they're seeing some funny staring spells, and they've raised the question as to whether it might be seizure.
And usually they translate that to the mother, you know, transmitted to the mother who then transmits it to the doctor who then decides whether they want to work it up or not. And unfortunately I think most people. Uh, the trick is getting the EEG. Trying to get electrodes to go stick on somebody's head for any length of time is not easy. Um, furthermore, if you get it's it's, it's tricky. Okay. Uh, I don't know if you want to go through the whole scenario here, but, uh, we can get it turns out that you can do an EEG on somebody and they can have a perfectly normal EG and still have seizures.
And the reason for that is that EGS are, are picking up [00:38:00] electrodes are picking up electrical activity on the surface of the brain. If they focus of the seizure is down deep, you're going to miss it. Okay. So it's perfectly possible to have still have a seizure disorder and have a perfectly normal EG.
It's also perfectly possible to have a funny looking AEG and not have seizures at all. So you're still having to try to figure out how does the clinical piece. That you with what, what we're going to see on the, on the EEG? I think, um, again, it gets back to if, if somebody is reporting funny episodes that they think might be seizure, please, please turn on your cell phone and please give me a video of what it is that you're talking about.
Because if I can see it, then I have a better idea of what you're actually talking about. Uh, and I realize that's not always easy to do when you're working with somebody and suddenly they start doing whatever it is. Do you have time to haul out your cell phone then and grasp a little video? Uh, some people are able to do that.
Some, sometimes they did the event doesn't last long [00:39:00] enough, but if they, you know, honestly, a picture's worth a thousand words, whatever behavior is being described about, please, if it's ever possible to get a video of what these behaviors are. And I tell the parents the same thing, by the way, not, not just.
But if you're a parent, can you just get me a video? So for example, the other day, some mother sent me, she was saying that he, her son has now got tremors in his hands. Uh, and I said, well, you know, what does that really mean to me? I mean, how is it central tremor weather what's going on here? And so I said, can you get a video?
And she was, she was able to send me a video. So I had a better idea of what, what this was about. I think it's probably secondary to a medication when we just put him on, as it turns out, but okay. At least now I know what we're talking about here. Uh, so I think it all, it, it, it, any kind of video that anybody can get is really going to be useful, no matter what,
[00:39:52] Jen Leighton: I think those could be helpful for really anything that we're seeing, right?
Like if we think we're seeing something that looks [00:40:00] seizure ish and you might see it and say, gosh, that could be GI or, you know, so if parents are, you know, bringing students, children to medical professionals, videos of what the concerns are. Therapists staff people working with them, as well as what the family seeing.
That's actually a really good point,
[00:40:18] Kate Grandbois: Dr. B and I think, you know, as long as, you know, I think that's a really, really great point. And obviously there's that conversation that you have to have about like permission. And I know, you know, every workplace has their own, has their own, you know, sets of equipment and using personal cell phones to record students and patients and that kind of thing.
But, um, I love the idea of, you know, maximizing our modern technology to, to translate more better quality information, because I think it facilitates that collaboration between medical professionals and therapeutic professionals. That's so critically important. Um, I, there are, uh, there's at least one other big disorder that I would love to talk about [00:41:00] called pandas, um, which I know all of us have had a little bit of experience with, but before we get onto that, there was one other question I wanted to ask about.
And that's the fatigue. So I know from personal experience, um, in the handful of students and patients that I've worked with who have had seizures after a seizure episode, their level of fatigue is, is so significant. Um, and I, I didn't know if you wanted to talk about that a little bit and how that might obviously impact someone's learning or be a red flag for further referral, et cetera.
[00:41:34] Dr. Bauman: Yeah. Well, I, I think it's just a see to me, it's a signal that this was really a seizure, uh, that the, if in fact they they're that fatigued afterwards that they fall asleep for a few hours afterwards. Yeah. I mean, um, can't think of too many of things that would do that. So, uh, yeah, I think it just helps with that is if the fatigue gonna interfere with their learning.
Um, maybe for the immediate future, but probably not, you [00:42:00] know, in between seizures, I wouldn't expect them to have such a degree of fi of fatigue that they were able to participate. But yeah, again, if you have frequent subtle seizures, I suppose that's possible, do you have people who have, you know, they can have 20 little events a day, I guess, and now not that I've actually documented that, but you know, it's, it's in the literature that you could do that.
Uh, so I suppose that after that, that yes, we could have some intermittent fatigue and that could interfere. I think that, you know, if they're tuning out though and having so having a seat, I guess if, if in fact somebody is having some subtle seizures, suppose you're in class and this child tunes out because he or she had a seizure, but it's not possibly pretty obvious to anybody. They just blanked out. So to speak that they're not getting the information that the teacher is teaching or whoever's working with them, was working with them.
So they can, then you have to say, well, you know, they can look like they've got an attention deficit [00:43:00] disorder because they just tuned out. But it's not an attention deficit disorder. It's because they tuned out because they had a seizure and then whatever was being talked about.
[00:43:08] Kate Grandbois: Is the neurology behind?
And I don't know if this is a stupid question or not. So you can just judge me in private later on after this comes out of my mouth. But if someone, is there a relationship between. Seizure activity or high rates of seizure activity and loss of skill. I know in the past, you know, I've in charts I've seen, um, you know, quote change in medical status, right.
So they had a seizure or had a certain level of seizure and have lost some sort of skill. Is that, is that a thing? Is that a real
[00:43:40] Dr. Bauman: thing? Yeah, I think it is a real thing. It's not common, but I think it is a real thing and it's usually not permanent. It's usually the it'll come it'll come back if you work on it again.
Um, but yeah, I think it is a real thing. It certainly has been reported. So in
[00:43:55] Jen Leighton: students or children or patients who are having difficulty, um, [00:44:00] like retaining or learning new information and they have a history of a seizure disorder, would you like in multiple seizures to like, like multiple small traumatic brain injuries?
Like, is that how it's impacting the brain? I'm just curious, neurologically what's happening. I mean, we're seeing
[00:44:18] Dr. Bauman: that sort of multiple I've had no, I don't think I see that as multiple brain injuries. I think that, that the nerve cells are just overexcited and are not transmitting information the way they should, but I don't see that as brain brain injury, per se.
I think it's, um, I wouldn't them to describe it as atypical disordered neural communication, I guess, uh, hyperexcitability of nerve cells and nerve transmission of this causing this, the seizure activity. Uh, but I don't see it as brain injury per se. Thank you.
[00:44:54] Jen Leighton: Because I do think that's a misunderstanding in some of the circles that I've been [00:45:00] in.
So it's helpful to have that clarification. And then, um, I did have a question I wanted to go back about mitochondrial. So does mitochondrial disorder occur in the general population?
[00:45:11] Kate Grandbois: Where do we see
[00:45:12] Dr. Bauman: that? Actually it concur in the general population.
And again, I have a set of non. twins girls. The mother took her down to Atlanta, which is one of the places that we were at a time using two for diagnosis, and she got a muscle biopsy and this young woman. With turned out to have a complex one mitochondrial disorder.
I mean, I mean, I think our mother said that she tended to fatigue a lot, but I mean, other than that, I mean, cognitively find it turns out now she's graduated. She got a master's degree in special education and is teaching. Uh, but she still has a lot of trouble with fatigue. We've got her on a Mito cocktail and she's tasked to kind of pace herself in terms of the kind of things that she does during the day.
So she doesn't overextend yourself in this sort of thing, but she's, she's definitely got it. No [00:46:00] question. And there's cognitively nothing, nothing wrong with this lady at all. She was just very nice pleasant, young woman, but she's got this excessive fatigue. Yeah. You're going to do not have to be autistic or have a special need in order to have a mitochondria.
Very interesting. Thank you.
[00:46:17] Kate Grandbois: So in our last 10 minutes, um, I wanted to review pandas. Um, I'm just going to ask you what it is because I have a very vague definition of what it is, but I'm, I would bet my house that my definition is
[00:46:30] Dr. Bauman: wrong. Probably not. What's your definition. Don't
put
[00:46:34] Kate Grandbois: me on the spot like that.
I'm not going to tell you I'll be
[00:46:36] Dr. Bauman: wrong. You're telling me you're the doctor. I want to hear what your impression is. Okay. Okay. I'm going to
[00:46:43] Kate Grandbois: guess. Ready? I'm going to put my vulnerable position here. My understanding is that pandas don't know what it stands for. I believe it's an acronym and it is strep that has
[00:46:57] Dr. Bauman: gone.[00:47:00]
That's very good. Actually, that's not bad. Okay,
[00:47:04] Kate Grandbois: good. That's my medical degree that I
[00:47:05] Dr. Bauman: got into cracker Jack box. Okay. Sounds good. So the right it's an acronym. It, and I wouldn't have to write it down. So, uh, it stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal. That's what pat does Stanford.
So yes, you're absolutely right. It's related to stress and it's generally people who have had one or more strep infections, uh, why some people get it and some of the people don't get it. They have not clear it's an audit, considered an auto immune disorder. Uh, sometimes it can be fairly brief. Uh, usually it presents with, uh, behaviors such as aggression, OCD, behaviors, anxiety, depression, uh, again, uh, frankly probably any change in behavior.
We're back to that story. Again, would be something that you would probably want to check it out about. Uh, there are ways of [00:48:00] diagnosing it. Uh, you're trying to diagnose it. Some of which has to do with, um, blood tests. Uh, there are also other, you know, some people would get other studies to try to move.
Other possibilities of why this person is kind of falling apart, but usually the blood test will be something like Andy, any step to strep the licensed titers to show who that he or she has had a recent episode of, of strep. Uh, and then they're treated with Amie triple play. The first line of defense is, is antibiotics.
And, uh, you know, sort of, it's not a quick 10 day antibiotic story. It's usually can be weeks worth of antibiotics. If that doesn't work, then there are people who go to more extensive treatment. So one of which is what's called IVI G so InterMune as a gamma globulin kind of therapies. Uh, sometimes the, uh, pandas can be.
So it can last months. Uh, so that probably had kids. That is why I added as long as a year, uh, just, and you have [00:49:00] to keep trying to treat it and nail it down. So it's, it's, it's pretty variable. Uh, but, um, it's kind of a contract in some ways, in some places it's controversial, there's some places where they don't believe that pandas is real, uh, that they think it's, you know, something that, you know, somebody gets out of bed dream about or something.
Uh, but I think I, I'm pretty convinced it's real. And I I've certainly seen kids respond to the antibiotics are seen them treated mostly with amoxicillin, but I think people are treating other ways. Um, I think that there is a lady by the name of Sue Sweden, who was at the NIH and who was really sort of the lead dog in pursuing this particular disorder for many, many years.
I think she sort of semi retired at the most. Um, but I think has done some very nice research, which has been pretty convincing that this is a real disorder and it's a it's re is response response to strep infection. And I
[00:49:56] Kate Grandbois: think it's worth mentioning that it's relevant to the speech and language [00:50:00] pathologists, because I've seen firsthand what it does from a communication standpoint, in terms of very persistent, repetitive communication in an individual who maybe didn't have that intensity of repetitive communication.
And, you know, it sort of, again, that change in behavior that, that this is a change in status. And all of a sudden, all you will talk about all you are interested in saying is red truck, red truck, persistent, persistent. Um, and it was in my experience, it was, it was because of pandas. Um, Jen, I know that you've also had some experience.
Um, and, and I don't know if you want to take a minute to describe how it can be related to communication.
[00:50:42] Dr. Bauman: Um,
[00:50:44] Jen Leighton: You know, I've seen it in two students. Um, and in, I guess, one of my questions related, and then I'll try to answer your question, Katie is what if it's not caught at the time that the strep [00:51:00] infection is active?
And what if, you know, you see some of these, you know, these new OCD behaviors and they are going on for a period of time, and then let's say six months, eight months later, people start, you know, a physician or somebody decides to look into this, you know, like at what point is it always treatable? And I'm just
[00:51:19] Kate Grandbois: kind of curious about that
[00:51:20] Dr. Bauman: piece.
I see. Well, that's a good question. And I don't know that I can answer it. Uh, oftentimes I will recommend. Families seek out a specialist who, uh, works with pandas because that's not, I mean, I'm aware of it. I know, sort of, you know, kind of at the surface superficial view of it, but I think, you know, really it's one of those deals where you really need somebody who's been around the block a few times and has seen a lot of kids with a lot of complicating factors.
So, but, um, I, I think that they do get treated long-term I, but I not sure that I can pick them really answer that question. Actually. [00:52:00] It's a good question.
[00:52:00] Jen Leighton: No, thank you. Um, and then just in terms of how it impacts communication, the two students I had were both AAC users. One had minimal verbal output, but he used his device to repair communication breakdowns.
And what happened was the OCD was so intense about things, unrelated to communication, that it was difficult to get both of them in fact, to focus on communication and they weren't able to access. There basic wants and needs, um, what was going on for them. It was just because they, they kind of had these OCD completely unrelated.
And in fact, in one case the OCD continued to change. So like one day it would be, you know, something and then the next day it'd be something, you know, a little more concerning and another day. And it had to, like, it had to get completed before then, then the OCD would change again. And, um, to be honest, he never came, you know, came around to being like, I really want to communicate, you know, sadly, um, that was a big
[00:52:59] Dr. Bauman: issue [00:53:00] and this change of good and bad days, I guess it's pretty typical.
I mean, it's not like it's always the same thing. So your.
[00:53:10] Kate Grandbois: Before we sort of, um, wrap up for, for the day. Well, for this episode, anyway, it's not the, it's not the end of the day. It's the middle it's, it's the thing. Um, I wonder if we could just take a couple of minutes just to emphasize and recap, um, how, you know, we've covered a lot of different major medical issues, you know, this is so relevant to anyone with a complex body.
There are so many different, um, intersections between communication disorders and medical issues. Um, and I think it's one of the we've, we've talked about a lot of really intense, uh, medical issues, seizures, pandas, mitochondrial disorders. But you've, we've mentioned that mentioned a couple of very, you know, every day aches and pains too, like ear infections, we mentioned [00:54:00] mentioned dental issues and vision.
Vision is another, um, as another issue that I think is, is so important to, you know, to address,
[00:54:11] Amy Wonkka: I totally want to echo that point. Kate, I think vision and hearing, you know, don't forget that we're
[00:54:18] Kate Grandbois: looking at the, I mean the
[00:54:21] Amy Wonkka: auditory system and the visual system are both super important, particularly when we're thinking about maybe somebody who might be using an aided communication system, you know, I mean, being sure that we're mindful, not only of, you know, kind of medical needs related to.
Health issues, but just the reality that we need to make sure that everybody's getting the same access to hearing and vision screenings that are meaningful, um, is really important too. I say this is a, is a full glasses wearing person. Um, you know, but it makes a huge difference. It makes a huge [00:55:00] difference.
Again, back to that quality of life piece. If you have sensory system, um, sensory systems that aren't working optimally and there's things that we could do to help make sure that you're better able to access auditory and visual information from your environment again, that's, that's really, really powerful.
And
[00:55:19] Kate Grandbois: I, I think, you know, we are this whole episode, we're talking about people who have complex communication needs and are either, you know, minimally speaking or non-speaking. So in these instances you were more likely more often than not probably dealing with some sort of augmentative alternative communication system.
Um, and to Amy's point, you know, the hearing and vision systems are critical ax, sensory access points for communication, um, in a variety of different ways. So, um, so I think, you know, these are just really such tremendous points before we wrap up Dr. B and Jen, is there any, do you have any parting words of wisdom for, for our audience?
[00:55:58] Dr. Bauman: Well, can I, [00:56:00] instead of a party word of winter, I like to follow up on, uh, she shoot me down if you want. I would still think about. Because that can cause you vision problems as well. And I can only relate that because, uh, as an eighth grader, I beget, uh, this, uh, personal, uh, I remember failing an algebra test because I couldn't see the board and there's something happened to my vision and I couldn't see the board.
And so I remember explaining that to somebody, uh, and I got a vision test and there was nothing wrong with my vision. It wasn't until I was a medical, actually I was a resident in ma kind of left medical school. And I was a resident in neurology at the university of Maryland. I might have one of these episodes and the guy behind me who was one of the faculty, people said, I think you have my Curry.
Okay. Well, this has been going on all these years. Nobody just, you know, oh, well, blah, blah, blah. So. I know it's not just people who have disabilities, [00:57:00] you can have these problems. It can be people who, who don't have disabilities are having trouble explaining, or at least having interpreting so that people understand what it is that they have.
So again, I think the speech pathology component of this is really important. How do you help people to verbalize what's really going on? I could have helped him. Probably a speech pathologist could have helped me at a time to help explain he described me because obviously he took probably about 10 plus years and more before I finally, I found out what the diagnosis really was.
That's
[00:57:30] Jen Leighton: such a good point though. And it is a little bit of like the chicken, egg phenomenon, you know, is, is someone having headaches because they have vision issues or they're having vision issues because they have headaches. Like, I think a lot of it is, um, like you said, like detective work, trying to figure out what's going on for students.
One, one thought I have in terms of just sort of the summary piece is. Just how important it is for us to collaborate on all of the issues. You know, being in a [00:58:00] school, getting input from medical professionals, being medical professional, getting input from the school. I, um, I'm very fortunate to work in a program.
Uh, we have a large number of nurses in our program, so we seem to be very medically based. And, but when we have students going for medical appointments, we do a Google doc and we write from every discipline's perspective and share it with the physician and the family prior to a student going. Um, and that just seems to have really taken off in the last couple of years, because, and now the physicians seek out that information from us, those who know us.
So, um, you know, just, I do think the collaboration piece is just so key for our students and
[00:58:40] Kate Grandbois: patients. I totally agree you. This was so great. I learned so much from both of you. Um, I feel like I can speak for Amy. She did too. I did. Thank you so much.
[00:58:51] Dr. Bauman: Thank you so much. This was fun. It was good to talk to.
[00:58:56] Kate Grandbois: Yeah, thank you. So you guys, I mean, just giving us [00:59:00] your time, this was really awesome. So thank you so much. If anybody has any questions about this episode, uh, you can reach out to us@infoatslpnerdcast.com. Um, as I mentioned, you can earn Ashesi use for listening to this episode, if you would like to earn ashes, to use cruise on over to our website to find the episode, uh, and where you can purchase access to the quiz.
We love hearing from our listeners. And we're so glad that you joined us today. And thank you guys for coming. Thank you
[00:59:25] Jen Leighton: for having. [01:00:00]