Jen (00:00:06):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing are controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life for those with cerebral palsy. Welcome to Cerebral Palsy Health Conversations that count with experts who care. Today's episode on cerebral palsy Health is so important and we're talking about dental health and oral health. A topic that frequently comes up with my conversations with parents as well as my adult friends who have cerebral palsy. I'm speaking today with not one, but two extremely accomplished dental professors who specialize in dental care and oral health for individuals with disabilities. These ladies are unicorns and I am thrilled to have them both. I've managed to find two unicorns and have them both on this podcast so that we can all learn from their expertise. So I'd like to welcome Dr. Erica CRE and Dr. Sydney Chavis to the podcast Cerebral Palsy Health. Thank you both for being here.
Erica (00:01:35):
Thank you. It's an honor to be here.
Jen (00:01:38):
Thank you. And thank you. Absolutely.
Sydnee (00:01:40):
Thank you so much for having us.
Jen (00:01:41):
Yeah. Well, I'm going to quickly read your bios because you guys, and I'll tell the audience this, I did shorten them because their educational backgrounds are incredibly extensive. So if you really want to learn more about their educational backgrounds, you can look them up after this podcast. But I'll read the short form that I've created here. Dr. Erica Kare is a pediatric dentistry faculty at University of Maryland Dental School where her areas of clinical research interest include pediatric oral medicine in oral pathology, social determinants of oral health and dental care for medically complex children. Dr. Kare is a diplomat of the American Board of Pediatric Dentistry and currently serves on the board's examination committee. She's a consultant for the American Academy of Pediatric Dentistry's Council for Clinical Affairs and has been the lead author on multiple A A PD policy statements. Dr. Kare aims to foster interdisciplinary care to promote optimal oral health for children in the Baltimore community. Thank you, Dr. Kare,
(00:02:44):
And then Sidney Chavis. Dr. Sidney Chavis is a clinical assistant professor in special care and geriatrics clinic at the University of Maryland School of Dentistry. Her clinical interests include providing accessible dental care for patients with intellectual and developmental disabilities, as well as medically necessary dental treatment for patients with medical complexities such as organ transplantation and cancer. She's engaged with teaching dental students, residents, and practicing dentists how to provide comprehensive dental care for complex patients, as well as methods of empowering and enabling dentists to provide dental treatments for patients with special needs and medical complexities. She's actively engaged in clinical and translational research to improve methods of dental care, access to care and oral health outcomes for patients with disabilities and medical complexities. That's a lot. That's a mouthful. Thank you, Dr. Chavis. Thank you, Sydney. And also you're a comedian. I hope you're going to
Sydnee (00:03:49):
Make us laugh. Laugh today. I hope so. If nothing else, I make myself laugh, but I make the joke that I am just a dentist until I make it as a comedian. So that's all there is to say. I think that's fantastic. I
Jen (00:04:03):
Think that's wonderful. Well, I have so many questions. I really know so little about dental, health, oral health, other than what I've learned from going to my own dentist, but when it comes to caring for my son and his oral health, this is always something that is at the forefront of my mind and I'm really, really excited to learn from you both about this. And I'd like to get started with asking you guys a personal question. Erica, I'll go first with you. Why did you decide to go into this specialty and focus on dentistry for those with cerebral palsy and other disabilities?
Erica (00:04:41):
Sure. So I came to the decision to go to dental school a little bit later than the average student. I had studied music in college and was a classically trained flutist bist, and it was in the years after college graduation that I had some basic exposure to dentistry simply because I went to a dentist on my own insurance with my own employer for the first time. I mean, I had been to the dentist before as a kid, but now I'm a grownup going to the dentist. And it was all just very straightforward. It was not complicated. So I can't say that I was particularly inspired by some childhood story. However, I did develop an interest in healthcare and as a musician had spent a lot of time with children actually, whether it was teaching private flute lessons or I had a one job as a sort of an arts programmer for a community center, and I was very interested in just the performance aspect of it and engaging with children.
(00:05:54):
So as soon as I started dental school, I knew I was going to pursue pediatric healthcare. And so my interest in pediatric healthcare really expanded during dental school with the few children who were allowed to be seen in the pre doctorate dental clinic, a few unlucky souls rather that made their way through there. And then I was lucky enough to match for a pediatric dental residency at Children's National Hospital in Washington dc, which is a major children's hospital in the United States and really gives its residents exposure to every medical condition under the sun and has such an extremely diverse patient pool. People fly in to that hospital for care from all over the world. And so it was just such a great way to introduce me to both the medical aspects of care and certainly the oral aspects of pediatric healthcare, but also the variety of needs out there.
(00:07:02):
And residency in general is such a transformative time for any healthcare practitioner. It's really where you make that transition from student to doctor. And learning about patient stories just really moved me right away. I will admit to you, I had very limited exposure to any individual with special healthcare needs in my childhood and in my adult life. Up until residency, I really didn't know how to interact with families other than put on my usual child-friendly performance for them. I didn't really know what questions to ask, and I didn't yet possess the perspective of a parent to be able to communicate to families very well. And it's really, even now, I graduated in 2015 from residency, so I now I am 10 years out and my perspective continues to grow. Both I've become a parent since then. I've certainly seen such a variety of children with medical complexities and I'm always learning. And on the daily I am inspired by the families. I see.
Jen (00:08:17):
Wow, that's amazing. And it's wonderful to see that this is something that inspired this passion in you. It just came organically and you're spreading the word and what I've learned about you and trying to educate people, parents and other professionals. So it's wonderful that this has become a passion and I'm so excited to learn from you today. And Sydney, how about you? What inspired you to get into this?
Sydnee (00:08:52):
Yeah, so I will say and Erica and help people like Erica come to work with patients with disabilities, I think tends to not be the norm. And that's just so
Speaker 4 (00:09:03):
Special
Sydnee (00:09:04):
Because my trajectory is a little bit different because I have an older sister who has cerebral palsy and that has colored my life since I was born. She's the oldest of the four of us, of the four children in my family. And I always knew growing up I wanted to do something kind of medically based. I was just very interested in healthcare from as long as I can remember. I do make the joke that I never minded dental care when I was a kid. So I would just sit there and not cry and not fight back. And my dentist told me I was his favorite patient and that was all it took for me to want to be a dentist. That little bit of positive feedback, but that really underscores the never underestimate the power of positive feedback. That being said, my older sister is just incredible. She is a pretty significantly disabled woman, but I never saw her that way. And I always saw what she was capable of and having her as a sister really colored my perspective on life and people's abilities. And my parents really stressed this, that
(00:10:13):
How capable she is and what she is able to do as opposed to what she is not able to do. But growing up with her as a sister, I did witness how difficult it was for my parents to find healthcare providers for her, especially dentists. And as I did go to dental school, I knew that I was actually not going to be a pediatric dentist. I knew that I wanted to focus on care for adult patients because that is an area where especially patients with disabilities get so lost to follow up. So some of my friends from dental school actually still have bets out that I would pursue pediatrics and I've held strong, but I made the very intentional decision to remain a general dentist and not specialize in pediatrics for that reason, to really focus on care for adults because it does tend to be pediatric providers who are the best trained in caring for patients with disabilities. So I chose to focus on healthcare for adults.
Jen (00:11:14):
And again, it's tremendous that you're doing this and training people to do this and hopefully get the word out and get your trainees out there so that we have more adult providers. And I think you're right. I do find that when I'm talking to people, it is the pediatric providers that are getting more education and medical complexity and special needs, and the adult providers are definitely don't. So thank you for what you're doing, and I'll add a plugin for a talk that's on YouTube that I will be adding to CP resource as part after this podcast that you did that it had me in tears about your sister and just about growing up with her and how she is included and how she was included in your family and in your life, and how you didn't see those differences. And it was just, it's a very meaningful talk and I highly encourage folks to watch it and even just Google Sidney Chavis name and you'll find the talk pretty easily. So it'll be up on CP resource after this podcast though for sure. And thank you. And so let's just start at the very beginning. And why is dental health important? I mean basics.
(00:12:37):
Why do we need to go to the dentist in the first place?
Erica (00:12:41):
I've heard that is a basic question, but it is probably the most important one that, and it's a common question. I mean, I will say I state the obvious, which is you need teeth to function. You need teeth to smile and eat. And for children, that means getting proper nutrition, avoiding pain and infection, and sometimes life-threatening complications. And you need your teeth for aesthetics, certainly to help with self-esteem. There are a multitude of reasons why baby teeth matter because among the most common questions is, well, they just fall out.
(00:13:23):
But there among other things, they hold the space for the adult teeth to come in. So if they're lost prematurely, we make our kids more prone to dental crowding and space loss and not enough room for their adult teeth to come in. And so where we work, university of Maryland, we tend to see many of these sort extreme examples of poor oral health. And so I can elaborate on those poor oral health outcomes and the scarier consequences. But overall, we set the foundation as pediatric dentists for a lifetime of good oral health. And that applies across the board regardless of your medical status,
Jen (00:14:03):
What happens when you become an adult after you've lost your baby teeth and your adult teeth are in as far as that oral hygiene, oral health, why is that important for adults?
Sydnee (00:14:18):
Absolutely. So I'll take over for that and just for the same reasons that baby's important for kids, they're important for adults of course. And the way I like to describe it for patients is that your mouth is the primary mode of intake to anything in your body.
(00:14:35):
So health kind of begins where everything else enters your body, your mouth. It's kind of naturally, we'll call it a dirty place. You have millions of bacteria that live in your mouth that is totally normal. But if you're not taking care of your mouth and your teeth, it can lead to certainly issues with self-esteem, with discomfort, with pain. Toothaches are a very cause of disability from a standpoint of people missing work or missing out on activities. It can more severe dental infection. So cavities are certainly a form of dental infection, but the deeper a cavity gets, it can lead to an infection of your mouth more broadly. That could lead to swelling or in the worst case scenarios, kind of systemic infection or full body affection. So that's kind of how I describe it. And then of course there are all the functional reasons, the ability to speak, to smile, to chew. Interestingly enough, if you think about what begins in your mouth, if you have tooth pain, it makes it difficult to eat. If you can't eat well, it makes it difficult to get appropriate nutrition. If you can't get appropriate nutrition, that leads to other illnesses and diseases that kind of cause more issues for people. So it has this snowball effect that if you don't have a healthy mouth, it's very difficult to have a healthy rest of your body.
Jen (00:16:03):
Which I guess leads me to, it leads me to a lot of other questions and I think we can get to 'em, but what about the people that actually are adults or are children that can't chew in general, that are G-tube fed and what happens in those scenarios? I know it's a little bit down the line in my line of questioning, but it just got me thinking about that while you were talking about it.
Erica (00:16:35):
Yeah. Well, Sydney, I'll write if I start.
(00:16:39):
So even for our kids who are G two Fed, when we tend to look at oral health, certainly we look from a functional perspective, we look at the things I mentioned, eating, speech, aesthetics and pain and ability to concentrate, sleep, et cetera. But there's also sort of the categories of dental diagnoses that start in childhood and extend into adulthood. So much of our conversation in pediatric dentistry is focused on dental decay, and there are kids who are G-tube fed who might still be at risk for dental decay. There are kids with swallowing disorders and feeding disorders who might be at risk for dental decay. And I can briefly tell you what those risk factors are. And so why don't I start there? Just for those of you who are listening and are maybe unaware of what we describe as dental decay risk or dental caries risk, we're talking about the exposure that the teeth have to sugars, essentially sugars in various forms, not just even the sweet foods or drinks, but also the sweet carbohydrates and the various textures that those include. So there's syrupy things, right? There's softened foods or pureed foods, and then there's the crunchy stuff and there's the stuff that gets stuck in your teeth. And certainly the gummy bears and the stickier things are probably the most problematic, the hardest to clean off, right?
(00:18:12):So over time, bacteria in our mouth can ingest those sugars, and the more frequently they ingest those sugars, the more acidic the mouth can become. The more acidic the mouth becomes, the more likely the dental enamel that sort of outer shell of our teeth can disintegrate. And that is what leads to holes in the teeth that we refer to as cavities. Cavities might not start out hurting too much, but over time, the larger they get, the more food gets stuck in there, the more the gums get irritated and eventually the tooth can die and lose its ability to fight off bacteria. And that's when that leads to a dental abscess or dental infection.
(00:18:52):So dental decay is that one category of risk factors we look at. Another non-functional category is the health of the gums and the health of the pink stuff in the mouth. So the gums, the cheeks, the tongue, and often that becomes like a hygiene issue, right? It's a matter of cleaning the tongue, of getting plaque off the teeth, of wiping the cheeks off from debris, which is really important for kids who can't swallow or even clear their food very well. And so brushing is absolutely important even for kids who are not exposed to any sugars by mouth, because over time that plaque often hardens on the teeth. We call that tartar buildup or calculus. And at that point it can irritate the gums even more. It can in the later years of childhood and into adolescence, start to cause bone reactivity around the teeth. We refer to that as periodontal disease.
(00:19:52):
And over time, we may end up losing teeth if they get so wiggly because the bone has receded so much. So those are two main categories we look at when we look at risk factors, and even for our G-tube fed kids, they can end up with dental caries and they can end up with periodontal disease, particularly if they're partially fed by mouth. And so maybe having some soft foods or nutritional shakes by mouth, or if perhaps they receive some even licks of a lollipop just for the taste, that's a lot of sugar in the mouth or even sweetened medications. So these things can put kids in a higher risk category if they're unable to clear that bacteria from their mouth over time.
Jen (00:20:35):
Yeah. Well, that leads me to the question of do people, do these kids, do these adults need specialized dentists like you all to help with the cleaning process? And then I guess secondary to that question is I know how hard it is to brush my son's teeth. It is really, really tough and I do the very best I can, but it is really hard. I know we try to go to the dentist quite frequently, but it's not always covered by insurance. So we actually have to pay out of pocket extra because we go extra. But I guess that's two questions, but talking about that, you've got, you do have to be able to brush, you have to get a good cleaning, and that's hard. And then do you need special dentists for that? Or as you guys are training people, is this something, how do you do this at home, I guess is the first part? And then is there, how do you get the best help outside of home to make sure that it's getting cleaned the way it needs to get cleaned?
Sydnee (00:21:45):
So a few things. First of all, again, as somebody who takes care of somebody else's teeth, it is tremendously difficult. And I just want to start off with that. Brushing somebody else's teeth, taking care of somebody else's teeth on a daily and regular basis is very difficult. People have difficulty taken care of their own teeth and doing what they should do for their own teeth. So I always like to tell patients and parents and families and caregivers and guardians, you want to make sure you're doing it every day. So the ideal kind of rep is brushing your teeth twice a day, I'll say at least twice a day in the morning and at night right before bedtime, ideally flossing as well. However, when there are realistic kind of hindrances, flossing does kind of go to the wayside. And there are some alternatives to flossing, such as either using floss picks or a water pick.
(00:22:34):
But the other thing is that you do the best you can, right? It is tremendously difficult. Sometimes patients are very cooperative for it, sometimes they're much more resistant. You always want to try to do it every day as part of that routine. But what I tell my patients and caregivers is that doing it as the first step, and you can only do what you can do, and that progress is really the success there. And again, I have this personal experience that I am a guest, I help to care for my sister, and when I try to brush her teeth, it is not always successful. Sometimes she allows me to and sometimes she bites my finger. So it's from that standpoint, do the best you can. But understanding why it's important is the first step, just like Erica said, the cleaner your mouth is, the better you're set up for systemic health.
(00:23:28):
That's number one. Number two is that ideally, and in an ideal world, you don't necessarily have to see a special dentist. A cleaning for a patient with a G-tube or a disability or cerebral palsy is not necessarily different from a cleaning for anybody else. The issue and concern that often comes up is the dentist's comfort and awareness of the iterations for the patient. So having training a dentist who has additional training or additional exposure to patients with disabilities or different abilities is very helpful because they know what to expect or what to look for. But the process itself is not necessarily any different. One thing to keep in mind is if a patient does have a G-tube, it's important to know why they do have that alternative method of receiving nutrition.
(00:24:16):
And very often it's because patients might have difficulty swallowing, which is known as dysphasia, right? So when you swallow, there's kind of a muscle in the back of your throat that protects your airway so that food goes into your stomach and doesn't go into your lungs. For patients who don't have complete control over that musculature, weakness of that, if you can't swallow and protect your airway when you're swallowing, you can things into your lungs, which causes things like what's called aspiration pneumonia, which is effectively an infection of your lungs, which can be very dangerous. So that's very often why people have G-tubes From that perspective. It's very important for dentists to be aware of that because when we do cleanings, there tends to be debris. Sometimes we use water, sometimes we have to suction out saliva, et cetera. So it's important for dentists to be aware of that from that perspective to make sure that they're not using excessive water or they are suctioning the debris out, but the inherent process of a cleaning is not necessarily different.
(00:25:18):
So I think in Erica's, in my ideal world, every dentist would have this awareness. Every dentist would know that a cleaning is the same and just what to be aware of from a patient who has these disabilities. But that is something that's very helpful for patients themselves and families to be engaged with, to make sure that you're proactive about letting dentists know about those considerations, but also finding somebody who is comfortable with treating somebody with those differences. The other thing that I do want to mention is that, and I'll go back, this is just about kind of home care and home routine. So I often encounter patients where it's just so difficult to brush somebody's teeth or take care of somebody else's teeth that they're only brushing once per day. If that's the case, then I always like to recommend that you brush teeth at night instead of in the morning.
(00:26:08):
And the reason for that is that you kind of ingest food or have things going into your mouth throughout the day. And when you go to sleep overnight, your mouth tends to be more dry. There's less that's going on to either remove the plaque or wash that debris away from your teeth. So when your mouth is more dry, those bacteria tend to have more, we'll call it, access to those remaining sugars and have more of an impact because you don't have the kind of cleansing effect of your saliva. So if you are only able to brush somebody else's teeth or take care of your teeth once a day, then you should do it at night right before bedtime. And that's just again, from a standpoint of you do the best you can. If it's a big to do or a big concern or fight to brush somebody's teeth multiple times per day, right before bed is probably the best time to make sure you're getting as thorough of a cleaning in it can.
Erica (00:27:06):
Yeah, I think I just want to say in terms of providers and comfort, Sydney is a unicorn in the field of adult dental care for individuals with special healthcare needs. It's hard to find dentists who are comfortable, especially I think general dentists have training during dental school, but then often it's harder to find providers who are comfortable. Pediatric dentists, as you alluded to, are required to see a lot of kids with special healthcare needs as part of their training. And so I think if I was to advise a parent of a child with cerebral palsy, I might suggest starting out with a specialist like a pediatric dentist. And the challenge certainly becomes during the transitional years of adolescence, then it's hard to transition out. And I'm sure we'll get to that topic, but that can start things off in the right direction sometimes. I also would just say a lot of the strategies we have to brush teeth, and by the way, I have a 9-year-old and brushing his lower front teeth is truly impossible.
(00:28:22):
I still, I'm trying to teach him some independent hygiene habits, but I still make him get down on the floor and brushing. I mean, it's so hard, so strong. This applies across the board. And if anyone listening wants to write to me with their strategies for getting those lower front toothbrush, please, I say a lot of what we learn are just tips and tricks that are passed down passed from dentist to dentist. And some of dentists may have specialized products to suggest, and Sydney may have one to suggest now, but things to help keep the mouth open, for example, useful suction tools and just even specialized brushes, they vary by just how you were trained in what you learned and what I use in my dental office might be different than what I advise a parent to use at home. Just nothing is without harm, but some things can help. And in terms of do you need, I think the other question was about do you need a professional cleaning? Right?
Jen (00:29:28):
And the frequency, I know, like I said, we go more frequently because I'm just paranoid and I prefer
Erica (00:29:36):
To, I think it's a really important question. And parents often I think seek out more frequent visits because I would not call them paranoid, but they have heightened awareness about the importance of these visits. And that's great. But I generally say that nothing I do in the office is as valuable as what can be done at home. So working with caretakers and families to create a daily oral hygiene plan is really the highest priority.
Jen (00:30:10):
It makes me think. And I know one of the things that always freaks me out a little bit is the amount of toothpaste I use. And I do brush my son's teeth twice a day, and now it's been in the news a lot lately with the fluoride and everything. And of course, I'm reading all the stuff online. I'm like, oh my gosh, am I using too much toothpaste? He can't spit. So I try to do the best I can to get it, brush his teeth and get the toothpaste out of his mouth. But he's still swallowing a lot of it. It doesn't seem to bother him, but I would think that that would be a concern that parents are now seeing in the media. And is this something that we need to be worried about?
Sydnee (00:30:56):
So first of all, fluoride works by actually remaining on the teeth. So it has a topical effect, so it doesn't take very much, you don't have to load it on, but ideally it would stay on the teeth. So just from a, most people are not aware, most people will brush their teeth and then kind of rinse and try to spit it out. You do want to let the toothpaste stick your teeth. So that's number one. Number two, it's very what are called dose dependent. If someone has an oral habit where they're eating a whole tube of toothpaste, something along those lines, then that's kind of an unsafe amount. But the very small amount. So the general recommendation is for I think children, was it three and older or it's certainly adults. It's like a pea size toothpaste. And for children, it's like the size, a small smear, the size of the grain of rice, and that amount of toothpaste is generally not going to cause an issue from a systemic standpoint, even if it is ingested. But Erica, if you have more to add,
Erica (00:32:03):
So this has been a really big week for news coverage of fluoride. And so because I am sure your listeners are curious and are probably more attuned to health risks and ingestion questions in general, I think this is an important topic just to face, right? Yeah, I would just say that when you see a headline, nothing will scare you. If it sounds at all scary, it's going to scare you. And I understand that, and I'm parent, and any time you see concerns regarding toxicity in any format, you're going to avoid whatever it's telling you. Exactly right. It's really hard to win against that. So here's what I would say at this stage about what we know about fluoride is that there are over 75 years worth of studies about the efficacy or effectiveness of fluoride in helping to prevent dental decay. And that is really important for children and adults who are at high risk for dental decay.
(00:33:11):
So anyone who has airway issues, swallowing issues, feeding issues, motor issues, socioeconomic issues, that puts you into higher risk categories for having cavities. And for all the reasons we mentioned at the beginning of this interview, cavities can be really problematic. In addition to those functional and sort of systemic health issues we mentioned, it also creates a lot of stress for families, missed work days, missed school days, inability to concentrate in school, sleepless, et cetera. So it's really, I can't harp on the risks of poor oral health enough. So what we do know is that in those small amounts for a kid up until age three, we just recommend that smear or rice grain sized amount of toothpaste. Once you reach age three, a pea sized amount is okay on a soft bristle toothbrush brushing right in the morning and then right before bed. I agree with Sydney, if you have to choose a time right before bed is going to be the most important.
(00:34:12):
And to be frank about it, I don't make my kids swish and spit. If your kid can't swish and spit, that's okay. It sort of acts like an active fluoride tray for you, and that is a very small amount and it's very safe. And because I'm sure your listeners are also just curious about water supplies certain, certainly reassure you that the evidence we have indicates that at the levels that fluoride is regulated to in the United States, it is very effective, again for prevention and there's no evidence of its neurotoxicity toxic effects on infants and children. So I'll leave it there, but I would be remiss if I didn't mention it. And yeah, I would say using fluoride toothpaste is really, it's really from what we know is the most effective way to prevent yourself from getting cavities
Jen (00:35:07):
And the side effects of getting cavities and all of the issues that happen once you do develop cavities and infections in your mouth are much worse than the risks of the pea size amount of fluoride on your toothbrush, it sounds like. Exactly. Exactly.
Erica (00:35:26):
I don't want to send the message that getting cavities is an unbearable crisis and tragedy that can't be dealt with. That's why dentists exist. We can deal with cavities, but the ramifications of untreated dental decay can be really significant.
Jen (00:35:44):
Yeah. And what are some of, I think that was a huge point.
Sydnee (00:35:51):
I was just going to mention also that nothing exists in a vacuum. I mean, the world we live in, there are risks and benefits to everything. We like to say that an ounce of prevention is worth a pound of treatment. So things like fluoride are preventative. It's in such a small amount that, and again, the amount of research and literature that exists that demonstrates the safety of fluoride, we cannot stress that enough. This is something that is so deeply ingrained in dentistry and with media these days and people's differing opinions, of course, everybody's entitled to their thoughts and their opinions, but the science speaks for itself. So inherently to everything, there are risks and benefits, but fluoride is such a positive preventive option that is so easily accessible. And especially I do just want to add in, especially very often we see our patients get rewards by way of food or by way of sweets. So fluoride is a very low hanging fruit and kind of easy way to help mitigate that. But a focus on prevention, especially for patients who have more challenges obtaining healthcare or dental healthcare is so important. And fluoride is probably the primary means of prevention that we have.
Jen (00:37:12):
That's an excellent point, excellent point. Well, let's move on to some of the other issues surrounding cerebral palsy and dental health. And we've talked about cavities and fluoride and brushing and are, I know one of the concerns that we have as a family is tooth grinding and I think it's called bruxism, and that was one of the things, I know there's probably a long list. I'd be curious, what are some of the issues that you all see besides cavities that families need to be aware of with their child and adults who have complex needs, complex cerebral palsy?
Sydnee (00:37:57):
Sure. So bruxism is unfortunately an involuntary habit that is often kind of, we'll call it regulated by anxiety or stress subconsciously. So it's a very difficult habit to intervene upon. There are some strategies by occupational therapists that could implement something that helps to interrupt that pattern of grinding. So whatever somebody notices it. And it's very difficult for the person who is doing the grinding to notice it on themselves. So for caregivers to kind of provide some sort of implement to interrupt that pattern. I've seen patients who have chewy straws that when they're grinding, that will be introduced or something like that. So that's one kind of method or strategy. A mouth guard is a potential strategy. There are some concerns for that, whether it's a choking risk or whether a patient will tolerate wearing a mouth guard. And then even for my sister, my sister does grind quite a lot.
(00:39:05):
What I tend to do for her is just kind of take my two fingers and put it on her cheeks, kind of like about an inch in front of her ears where you can kind of feel the hinge of your TMJ joints on each side. And if I just put some gentle pressure that's actually putting a little bit of pressure on the primary muscle, that kind of instigates grinding and just that little bit of pressure at least tends to interrupt her from grinding and have her stop it in the moment. So grinding, of course, can wear away your teeth. It can cause teeth to be kind of flattened and worn down. It can cause some looseness of teeth. It can cause some inflammation of the gums. So the biggest recommendation that I have for patients who do experience grinding is just trying to find some way to interrupt the pattern, because again, it's not something that's necessarily consciously guided. One other option, which people may have different opinions about, but you can actually use Botox to inject into that muscle as well. That contracts, it is something that has to be repeated, and so it's about every three months you'd have to get injections, but basically Botox just weakens the muscle
(00:40:16):
And it can help to reduce the effects of grinding or reduce people from grinding their teeth.
Jen (00:40:23):
I was wondering if that could be combined with when people have Botox for SLU Rhea and if that's something that's done.
Sydnee (00:40:32):
Yeah, absolutely. 100% for people with cerebral palsy. I mean, I don't think I've met a patient who has cerebral palsy who does not grind their teeth, and it's just something that does tend to be relatively constant. So there's nothing that I am aware of that is a full stop to get people to stop grinding their teeth. It's a matter of a combinations of interrupting the habit when you do notice somebody's grinding and then finding ways to protect their teeth or stop them from clenching and grinding
Erica (00:41:08):
About up to 75. So like Sydnee said, typically most patients we see with CP have some bruxism habits. It's close to 75% of individuals with cerebral palsy have bruxism. And so for kids, most pediatric dentists are not providing Botox in their practices. From what I've gathered, I've started to inquire, I would be interested to learn myself. And there are some dentists who do, and there are some pediatric dentists who do, what I would suggest to parents is if they have their kids undergoing Botox injections for other reasons, whether if there are for example, then they may be discuss that option with their provider. And as a pediatric dentist, one of my strategies would be to talk to their neurology team about both bruxism and drooling andshe and discuss if there's any pharmacologic management that would be helpful. I've also heard of biofeedback as a possible, I cannot claim to be an expert on that topic. And sometimes we talk about prophylactically or sort of preventatively crowning teeth. So in kids, we sometimes do stainless steel crowns. There's silver caps on baby teeth to protect what's underneath from further wear. But the reality is often those will wear down too
(00:42:44):
Little hole in the biting surface of the silver cap, but they can be either replaced or just filled in with white filling material over time and maybe help maintain a more substantial height of individual's. Bite.
Sydnee (00:43:02):
The biofeedback is the most prominent strategy I tend to use. And again, like I mentioned, just pressing on my sister's cheeks, kind of putting that pressure on the muscles helps interrupt the contraction habit. But then that interruption of the habit as well, basically grinding your teeth, this is a habit of habit, them pressed together and rubbing against each other. So if you can put something between the teeth, and again, this is where the balance comes in, that everything has a trade off. So if you have a child with CP where you teach them to bite on a chewy straw instead of grinding their teeth, and then that becomes a habit, it's just understanding what's the risk of one habit versus the risk of another versus the benefits. And there are trade-offs to everything. And tooth grinding, we'll call it, it's not something that's what I'll call dangerous, right? Something, but it can be problematic because of the impact that it has on your teeth. So it can cause issues. It in itself is not necessarily inherently dangerous. I know that very often families find the sound very greeting, right? It's difficult to tolerate listening to somebody grind their teeth, but it's also, again, a manifestation potentially of anxiety or stress
(00:44:24):
In the person who's grinding. So some mitigation strategies could also be finding ways to alleviate that or that stress, whether it's interrupting it besides with something like a chewy straw listening to music or doing some sort of calming activity. So these are all kind of strategies to think about or ways to mitigate the habit or at least lessen the habit.
Jen (00:44:47):
Those are all great ideas and interventions, I guess is maybe a better way to say it. I certainly will implement them at home, especially what you're talking about with the cheeks. That's something I've never tried before and I will for sure. Yeah. Other, we've addressed this too. Are there other common concerns that people with complex needs and or cerebral palsy should be aware of when it comes to their dental health and dental care?
Erica (00:45:23):
I'm sure Sydney and I can both rattle off a list. I would put trauma risk. So any lack of motor coordination, whether you're a toddler or a teenager, can put you at high risk for trauma. It's really hard to prevent trauma. I have to give these lectures on trauma prevention, and it's really easy to talk about it in the context of contact sports. But otherwise, I mean, all of the ways to prevent a fall for your child would be the typical ones that I would recommend. And it sort of, in kids with cerebral palsy, it may play into the way their teeth align or sort of form. So if have trouble with, there's a motor issue and you tend to be a mouth breather, your mouth hangs open more when you're young, that affects the pattern of your jaw growth.
(00:46:20):
So yeah, if your mouth is hanging open, often you sort of may develop, we have a fancy word for it called cephalic, but that essentially means longface. Your face will elongate. And that's just due to sort the way our bones and our soft tissues communicate to each other to grow as they serve a function. So this can lead to, as your teeth grow in, they might appear more protruded. For example, your front teeth. So we describe that as overjet, how far your teeth, your front upper teeth stick out essentially. And so it's common to have sort of that excessive over dead. And so then when you fall, the first thing to hit the floor, if you face plan, it's your nose and your teeth. So that's a risk factor. If you are vulnerable to having seizures, that's risk factor for dental trauma and just a reduction in your defensive reflexes,
Erica (00:47:24):
Can't catch your fall. So dental trauma is a whole other topic, and I won't go all of the sequelae dental trauma, but I would hope that dental providers, when they look at your child's teeth, they know to look for and recognize signs of dental trauma, whether it just happened and they know how to manage it as an acute situation, or if they notice, for example, a discolored tooth or a displaced tooth or an excessively mobile tooth, those would be signs that that tooth might not be doing well and needs further dental treatment. And so you'll have to discuss all the options at that point. But we often, even myself, I often skip immediately to the posterior back teeth to look for signs of dental decay and the front teeth because either they're on their way out or they're newly erupted in the mouth. For pediatric patients, we sort of often assume they are in good status, but we have to be mindful of trauma susceptibility there.
Jen (00:48:23):
Well, that actually makes me think about one of the questions I had about communicating in my son's case. And a lot of people with cerebral palsy, your sister Sydney, they can't tell you if something's wrong and they can't tell you that they're in pain or that a tooth is bothering them. And so as parents, as dentists, how do you address that? How do we know if somebody's hurting?
Sydnee (00:48:56):
Absolutely. So this is a huge issue for disability communities in general. Real quick, I do just want to go back also to trauma because this is a huge thing. My sister has actually fallen and knocked out her front two teeth twice in the case that somebody does incur trauma, the best thing to do, and I am not sure how many parents are aware of this, if possible, go ahead and stick the tooth right back in what? And then go to the dentist and call the dentist. But it seems a little counterintuitive and freaky, for lack of a better word.
Jen (00:49:35):
But
Sydnee (00:49:35):
If you notice that if your son, God forbid, hopefully this never happens, but if he falls and knocks out a tooth and you can see the tooth and where it came from, try to orient it so you can see that it's oriented correctly. And the best thing to do is put it back in right where it fell out when it's possible. If it falls in dirt or something, Erica, you don't want to rinse it out in water, right? What's the best thing to rinse it off with? If it falls in dirt, you do want to rinse it off,
Erica (00:50:01):
You have to gently clean, you have to gently clean it off. A little bit of sterile water will be necessary just to get that. And also make sure you've had a tetanus booster.
Jen (00:50:14):
If you shove it back into the right spot, how does it stay?
Sydnee (00:50:19):
That's when you do have to follow up with the dentist. Generally speaking, if you put it back in, it will stay in well enough and it will be held in place by kind of a blood clot that starts to form. Then what you do is when you get to the dentist, they'll splint it in place if possible. But that's the best way to save a tooth and mitigate it from being lost forever or mitigate any kind of secondary issues. And again, that's a very long-winded topic that I don't want to necessarily take the time to go all the way into. It's just, I will say the first time my sister fell was when I was in dental school, and my mom somehow knew to put her teeth back in and she was able to get root canals, and those teeth were able to be maintained.
(00:51:01):
Now, the second time she fell and knocked them out, they were not able to be saved because they had already had root canals and the nerves were already removed, et cetera. But best thing to do in the case of trauma, rinse off the tooth if there's kind of evidence of debris and put it right back in the orientation that it came out to the best of your ability. So I do just like to put that out there because not a lot of people know that. And that's a great way to be able to save teeth as opposed to lose them from being in the mouth forever.
Erica (00:51:29):
I would add to that Sydnee, that if you are not brave enough to do that, or it is not realistic to do that because for example, your child is recovering from a seizure, I don't know, whatever it is, by the way, if they're baby teeth, don't put them back in the mouth. That's one you important caveat. Yes, yes. Permanent teeth and you may not know is the truth. If you have multiple children, for example, it's hard to keep track of who has lost what. But if you are pretty sure they are permanent teeth and you can't put them back in, go ahead and put them in milk.
Erica (00:52:07):
Yeah. And yourself, whether regardless of age, there are hospitals that have emergency dental services, and so dentists should be called and the dentist can help. What we do is splint the teeth with a light wire essentially to stabilize them for a couple weeks. And the tooth in that time hopefully will firm up and at least maintain their place in the mouth.
Sydnee (00:52:34):
I just like to make sure people are generally aware of that because it is very overwhelming. First of all, there's the trauma. Second of all, there's presumably bleeding and crying and people are upset. So often the last thing we'll think about is where's this tooth? How does it go back in? But it can mitigate a lot of other issues from a standpoint of having a missing tooth, how does it get replaced, how does it get treated, et cetera. So again, from a very just kind of broad overarching concept, I like people to just be aware of that. And I forgot what was the other
Jen (00:53:09):
Question? The other question was communicating pain.
Sydnee (00:53:11):
Communicating pain. Yes. So communicating pain, what I tell people to look out for is changes in behaviors. Changes in behaviors are the primary way that people who are not excellent at communicating communicate that they have something that's going on. There is a term that I really like all of my patients and their families and caregivers to be aware of, and that term is diagnostic overshadowing. And what that means is that when people who have a diagnosis of a disability have some sort of change in behavior, it's often attributed to their disability diagnosis. So your son has cerebral palsy. If he, let's say, starts acting out or starts with a new physical habit, people will say, oh, it's due to his cerebral palsy.
(00:54:01):
But what often is happening is when there is a new habit or a new behavior that is not part of your child's normal routine, it's very often a communication that something is going on. And when parents or caregivers or patients themselves notice that they have either a change in that feeling or a change in their behaviors, that's when it's good to start investigating what could be causing pain or discomfort. It is very, very infrequent that a patient or person will change their behaviors and their habits kind of spontaneously without something else instigating it. And in the healthcare community, unfortunately very often, again, because not all providers are so well versed, taking care of patients with disabilities and not all providers know the baseline of your child,
(00:54:56):
They'll often say, oh, they're probably doing that because of their diagnosis. And especially as a parent, if you notice that they are comfortable or not sleeping well or not eating well, and especially avoiding things that they usually like, that's a good time to start investigating what could be going on. And it's not always easy to discern what it is, but especially if people, let's say somebody really likes ice cream and they stop eating ice cream, that's a good indication that there might be something going on in their mouth or that cold sensitivity is bothering them.
(00:55:33):
Anything that might be having to do with indications to their face or mouth, especially I will encourage patients or parents to bring children to the dentist to investigate and see if there might be a cavity or if there might be some inflammation or source of trauma, et cetera that might be bothering them. So that's one thing. And then the other thing is to really just pay attention for, so besides change in behaviors, and this goes along with changes in behaviors, but let's say someone does grinding more or starts drooling more or something of that nature, then that would be a good way to kind of hone it in to something that might be going on in their mouth or their teeth that might be causing some pain.
Jen (00:56:15):
That's very, very helpful. Is there a way from a parent perspective to communicate that change to your provider so that you don't get that diagnostic overshadowing is there like, Hey, this isn't my kid's baseline. I know you don't know his baseline, but this is not it. Or is there an easy way to kind of alert them to that so that they don't go down that, oh, it's all CP thing?
Sydnee (00:56:42):
I think the biggest thing is really just that advocacy. Again, if it's a provider who knows you or knows your child and knows the patient, that's wonderful and very helpful. If it is something like where you're going to the emergency room, it is the kind of staunch advocacy. I think unfortunately, it's easier to diagnose something as being inherent to a disability diagnosis versus not taking the time and effort, but having the understanding or ability to do diagnostic assessments to see what else might be going on. Especially for someone who communicates a little differently or can't communicate clearly what is bothering them. So as much information as you can provide to a provider or give to a provider as context or background as to how long something has been lasting, what are those changes? What are the kind of side effects or what have you noticed that has changed as well as the time trajectory and frequency is very helpful.
(00:57:54):
So what I always like to recommend to families as well is if you do notice that something starts to change as soon as it starts to change, start documenting that. And that way you have a very clear, salient time of when it started. You can track the frequency of when it happens, you can start to track any patterns. And that provides a lot of diagnostic context for providers when you do have to see somebody for something that might be an issue or a source of pain or discomfort. And again, by having that clear, salient timeline as well as frequency, it's helpful and easier to demonstrate this, my child, this is when it started, this is what it coincided with. And that helps alleviate some of that guesswork from finding an appropriate diagnosis and being able to track it to what could be contributing factors and what could be causing it.
Jen (00:58:49):
Thank you. Erica. I know you had a point here.
Erica (00:58:51):
Sure. Well, I think Sydnee has covered beautifully, and I've learned so much from each of her responses. I would say from a pediatric perspective, it's challenging for all of our patients when it comes to pain, right? Like toddler, well, we give you a very inconsistent message, particularly if they're all happy and smiles when they get to the doctor's office, but they've been a monster at
Jen (00:59:15):
Home, a monster at home, right? Exactly.
Erica (00:59:18):
So their challenge is always with pain questions, unless it's super obvious. And the challenge in pediatric dentistry and in adult dentistry is sometimes it takes a while for signs of tooth problems to become evident in the mouth. The tooth looks entirely normal or it's covered with a beautifully smooth filling. It's not wiggly yet. The gums look normal, there's no signs of inflammation. So it is, from a dental perspective, it's really hard to give a diagnosis and it leads to a lot of frustration among parents, patients, and the providers. So I think that's a really great suggestion to document the ways in which the pain has presented. And also, so from my perspective, a lot of it is ruling out all these other possibilities. Is it an ear infection? Is it strep throat patient having a bad day?
(01:00:15):
Did they watch a movie they didn't like? It can be really hard to tell. And it's hard because often the answer to that dental visit is we just need to give it more time. And that's really hard for anyone to hear. I know. And I try to convey to parents of children and to the child themselves that I have the most empathy for what they're going through. Because it must be impossible to feel that your child is having discomfort and not be able to do anything about it. And yet, sometimes there's just no actual procedural intervention that will accomplish anything. So the example that's come up a lot, I just will share with you recently, is teeth that are wiggly, supposed to be teeth are falling out. And as teeth grow in, if you have a child with any sensory issues, that can become an enormous amount of discomfort for them.
(01:01:25):
None of us want to take out healthy erupting teeth. So sort of doing that, there's really, I can't control the growth process of the teeth into the mouth. And so often we just recommend some pain medication like over the counter Tylenol or ibuprofen just to see if we can help get them through a couple of days. And again, I have families that have driven for hours just for me to say that to them. And it's a a really tough one. And so pain is a really complicated question. And for our kids who can't communicate or can't take x-rays to determine sort of a bony diagnosis of the tooth and for whom we have challenges in getting a full diagnostic exam while they're in the dental chair, these are really challenging times.
Jen (01:02:19):
I had that exact question about X-rays, and one of the things that always frustrated me, it was a combination of things. One was that nobody took x-rays of my son's mouth, and I felt like he was perfectly capable of having X-rays taken. And it seemed like people were just afraid to try. And it wasn't until recently that it was by happenstance. We went to an oral surgeon when one of his wisdom teeth was erupting, and the oral surgeon didn't know him from Adam. We had never been there before, and they didn't think twice about it. They just welcomed him in and said, well, we need to do panoramics. He followed all the instructions, he did a great job, and we got great, it had been 18 years. I had never gotten an x-ray of my son's mouth and it was sort of heartbreaking to me. I was like, gosh, I keep on asking and people are like, oh, we can't do it. And I was like, gosh, that really wasn't that hard.
(01:03:22):
And it wasn't even like this office was particularly accessible. It was a very tiny little room and we squeezed the wheelchair in there and we did. We made it work, but it was like they just didn't have a fear. And so yeah, for 18 years he had never had panoramic x-rays. And recently we did his bite wings and he did a great job. So I kind of wanted to get your thoughts and advice on, I know that everybody's different, but my son does have complex cerebral palsy. He can't sit up independently. He has a hard time with head control. It's not easy, but he can do it. And is there a recommendation or a frequency or what should parents advocate for? What is the best way to do this
Erica (01:04:12):
From a pediatric perspective? We should be taking x-rays when there is an indication, right? If you see perfectly healthy teeth and you can see all sides of the teeth, there's not really a reason to take an x-ray. And so some children have enough space between their teeth into their pre-adolescent ears where an x-ray might actually not be necessary. But once those contacts close, and for many children, they start to close in between age four and age six. Taking a set of what we call diagnostic bitings, like one per side to check for cavities in between on the sides of the teeth would be a reasonable approach. But everything in pediatrics is done with a mind toward what the child can tolerate and is there a reason for it? So all dentists follow this principle of as little radiation as reasonably allowable or achievable. We don't want to overdose kids with radiation. We just want to do what is necessary by way. These are very small amounts of radiation.
(01:05:20):
I didn't mean to present that in an even slightly concerning way, but we want to take x-rays for a reason and not just to have a baseline and not just to verify that there's nothing there. I don't think that's a good strategy. So if a child does get a set of x-rays and it turns out they're low risk, then they might not need one for another couple of years. We don't want insurance to dictate how often we take x-rays and we really, so taking a set might be reasonable and it might be reassuring to a parent who's concerned. And so certainly all dental providers should try, right? You don't know if you don't try. So we want to see what our patients can tolerate and if maybe we try again at the next visit, we don't give up for 18 years, that's for sure.
Sydnee (01:06:18):
Thank you. I just want to go back because I say this a little bit facetiously, but I don't know if you could hear me rolling my eyes. You were saying that nobody had tried to take x-rays for your son for 18 years. That is one of my biggest pet peeves, right? As a provider, as a dentist or physician, you know what the standard of care is. And for adults, the standard of care is having a full set of radiographs at least every three to five years and bite wings about every one year again, as needed based on a patient's need. So if a patient has a higher cavity risk, if they have cavities that you can see, then your threshold is a little bit lower to take X-rays more frequently. And if they look like perfectly healthy teeth, then it can be deferred to every two years, potentially every three years based on risk and that general assessment.
(01:07:07):
That being said, a panoramic x-ray is a very, I won't say very, a relatively straightforward way of getting a picture of old teeth as well as the bone so that you can see either how things look developmentally for a child or what is the status of a patient's teeth from a standpoint of kind of gross health or gross pathology as an adult. Because a panoramic x-ray does broadly show you all of the teeth as well as the bone in one go. Now intraoral x-rays, which are the one where they put the center of the film inside your mouth, do tend to be a little bit more challenging to tolerate. It necessitates that you can open your mouth and close down and tolerate having that sensor in your mouth for even a short period of time, which is sometimes a little bit more sensorially difficult for patients to tolerate. That being said, it should never be that a provider doesn't try because those xs in your mouth for adult teeth are what are diagnostic for cavities between your teeth. And that does tend to be where cavities start and can progress without being able to see them by just looking at the teeth. I describe dental x-rays the way or as an analog to getting labs from your physician. Once you get to be built the kind of standard of cares that you get labs, you get your blood drawn and they look at your blood cells and your labs on a regular basis to make sure that you're healthy in ways that you can't just visualize from a physical exam.
Sydnee (01:08:40):
That's kind of the analog that I use for dental x-rays. We take x-rays so we can see what we can't just see with our bare eyes in your mouth. And from that perspective, and it's interesting, I so appreciate that you're saying that I asked doctors to take x-rays and they never did and we finally got them. Because very often what I see with some caregivers or families or parents even is that they'll say, oh, you won't be able to take x-rays. So whether it's the provider or whether it's the caregiver or the parent, never underestimate what somebody is capable of until you try and from a parent perspective, always want to advocate, do for my child what you would do for me, right? If I were the patient sitting in your chair exactly, or at least attempt exactly what you would do for me for my child. Don't try to make any shortcuts. Don't assume that they won't be able to tolerate it. Don't explain to them, I mean, I'm sorry, don't skip out on getting to them what you're doing and why treat them exactly as you would treat me. And the reason is because I'm sure just like my sister, your son understands what somebody explained to him
(01:09:51):
When you say take x-rays, he was perfectly capable of doing it. So I think that is one of the, certainly one of the biggest issues I see with students and with dentists that I teach, but with patients, the story that I hear from patients about providers is they wouldn't even look at my son. They wouldn't even attempt to do an exam. And I think from an advocacy perspective, the best thing that you can do is that no, treat them just like you would treat me to do or do exactly what you would do for me for them. And then if they put in the effort and they're not able to accomplish what they set out to do, then maybe that's where it's appropriate to make a referral, go see a specialist who is more comfortable or willing to treat patients with disabilities. But certainly from an adult perspective, that is thing that we see very, very frequently. And what I really want to work to try to change, because again, just because a patient has a diagnosis of a disability does not mean that they're not capable of understanding or cooperating and participating in their dental care. And in order to treat anything you need the diagnostic information that you would expect to need for any patient.
Jen (01:11:16):
Yeah. So presume competence would be
Sydnee (01:11:20):
100% presume, competence, presume, intelligence presume and understand as the provider, right? Providers need to understand that they need the information they need in order to greatly treat. You can't treat something that you can't see or that you can't diagnose though it goes for everybody.
Jen (01:11:37):
The next thing that I was interested in asking you all about is sedation and treating patients with sedation, what the different types are. I do know that with my son, it did help some to use nitrous when he's, or laughing gas I think is what it can be called. I never needed anything like this and I have so little experience except for my own personal experience going to the dentist. So all of these things were really new to me. So nitrous helped, but then we found that he doesn't need it anymore. So I'm kind of curious what your recommendations and your experiences are for families and how you choose to use types of different types of sedation and go down, I guess go down that route. Erica, how about you go first since your pediatrics?
Erica (01:12:30):
So nitro oxide is a very safe way to relieve some anxiety in our pediatric patients. Again, very safe, we deliver it with supplemental oxygen. So you actually end up receiving more oxygen than you would receive just in a normal room environment. And it has a lot of benefits. It increases the pain threshold, so it decreases your sensitivity to pain in that moment. It potentiates imagination. So if you've got to create dentist who's telling you a good story, you're more likely to believe it. And among its physical powers is it can reduce the gag reflex, which can be very helpful for some kids. So we use nitrous all the time. I have no reservations about its safe use. We have a maximum percentage we use it at along with delivery of oxygen. So I can give my blessing that cerebral palsy is not a contraindication to the use of nitrous. The sedation question is a lot more complicated. And there are dental anesthesiologists, there are medical anesthesiologists and allied healthcare professionals who provide advanced medications for what we describe as advanced behavior guidance. So whether or not your child needs sedation depends on a lot of factors, but it's something I take very seriously when making that recommendation. All with safety in mind.
Jen (01:14:11):
So let me interrupt you for a second. Sedation is not the same as nitrous. So I think that's where I was confused in my head. I always thought that that was a form of sedation, but it's not.
Erica (01:14:22):
Well, there are different levels of sedation from minimal to deep general anesthesia essentially.
Okay,
Erica (01:14:30):
Can you put someone under general anesthesia unconsciousness with nitrous? You can anesthesiologists use it in the ORs, but at the levels we use it. In a typical dental setting, it's actually minimal sedation. But if you end up with other oral medications or IV medications on board, that's what we consider sedation for dental purposes,
Jen (01:14:55):
Let's say nitrous isn't enough, you're still having difficulties then you would consider doing. I know that in our experience, we've talked to our dentist about, okay, well he's going to go in for this other procedure, maybe the dentist can pair up. And
Erica (01:15:17):
So first I would say is when I get a referral for a patient to treat, sometimes the referral is very general. It says, please treat under sedation. First of all, you as the newly assigned dentist to this patient should determine treatment needs yourself and determine whether or not this is a child who can tolerate a dental exam, a cleaning x-rays, and any restorative needs that is treatment needs while awake in the clinic or if nitrous oxide will be available or beneficial rather. But the need for sedation or general anesthesia is more complicated and a lot of it frankly depends on the availability of those services in the setting where you work. It depends on the training of the provider, the credentialing of that provider and their office. And so in general, when we look for sedation, whether it's an oral medication or an IV medication, we are looking at the risks involved. Often that means the respiratory risks. So
(01:16:26):
Airway risks, these medications often depress the respiratory system and so decrease the brain's drive to breathe and we want to make sure that everything is done with appropriate monitoring and safety following our professional guidelines. Access to operating rooms is an ongoing need across the United States. Some facilities, particularly residency programs where we train future pediatric dentists have some access to operating room services, some more than others. So children's hospitals may have the most access to the services, but we do treat children under general anesthesia and try to treat the whole mouth at once. So it's sort of a one shot deal, no need to return. And yes, by all means, when possible to combine with other procedures, please do so. We want to save visits under general anesthesia. We don't want to treat really young children in an operating room setting for other reasons and there are limited resources for those services. So it's a complicated question. It's complicated in terms of who gets to go, who needs to go, and I put that in quote and what can we accomplish without it?
Jen (01:17:44):
Yeah, which makes me think that, and Erica, Sydney, you'll answer this I'm sure, but I would imagine that the resources in such a situation for adults are probably even more limited.
Sydnee (01:17:57):
Yes. So everything that Erica said is absolutely true for adults as well. Again, as a provider for adults, I often get referrals say, please provide care under sedation or general anesthesia. But besides everything that Erica has said, my biggest thought is that I need to make sure that general anesthesia or sedation and sedation meaning that a patient is not consciously awake and participating in the care a hundred percent because again, sedation is a spectrum, but I need to verify what the patient is or is not able to tolerate or participate in. So to the point of your son never having x-rays, you attempt everything that you need to do in order to do an exam, get appropriate diagnoses, and make an appropriate treatment plan. From a dental perspective, there are kind of several, what I'll call thresholds that I work through to determine that a patient does in fact require care under general anesthesia before just going that route. Because like Erica said, there are other considerations such as patient safety, availability of those resources. And a lot of times parents or caregivers come in and say, my son, my daughter needs to be treated under general anesthesia. And there's a perception that it's easier and it's easier from the perspective that it's one appointment, it's one and done. You can get presumably everything done in one visit. But from a perspective of establishing a dental care routine, acclimating a page two, having routine dental care, but also a consideration of a potentially traumatizing experience,
(01:19:46):
There are some considerations to take into account for general anesthesia, right? You've gone for general anesthesia, you're in a relatively cold operating room, you're getting needles or masks put on you getting undressed and wearing a gown. And there are elements to that that are very uncomfortable
(01:20:06):
And don't up a good trajectory for returning care. On top of that, we talked about how prevention is probably the most important factor in maintaining oral health and dental health. So by relying on general anesthesia, you're focusing more on treatment than prevention because you can't have a clean under general anesthesia every three months or every six months. So what I like to do is in very severe cases, if a patient really cannot tolerate care, that's kind of my threshold and it's a very high threshold for treating patients on our general anesthesia. Otherwise, I like to do everything possible to treat them in the office, and that might include nitrous oxide. For adults patients, I can prescribe a pill that they take before an appointment, and this is a little bit different in children versus adults, but for adult patients, I can prescribe something like a Xanax or a Valium that will help keep them a little bit calmer for an appointment so they can tolerate treatment a little bit better. And that has similar effects as nitrous oxide. Sometimes patients can't tolerate the mask wearing the mask that they need for nitrous oxide, and it does require that you breathe in through your nose and out through your mouth to have the most efficacy. So a pill is sometimes a little bit of more accessible route, but even just building rapport and building a relationship with a patient, sometimes that's enough to really help facilitate care.
(01:21:40):
And that's always the thing that I start with, learn who this patient is, learn what their concerns are, learn what will help them feel more comfortable. And just like any person, the more comfortable you are with your provider, the more you'll be willing to let them do or the more you'll be able to tolerate. So kind of where I start and then we'll call it a worst case scenario, and after all other options are exhausted is when we go to sedation. I think that we're general sedation or general anesthesia, and certainly it is nice to be able to get everything done in one go in one appointment, and I appreciate the efficiency of that and that perspective. But I also like to reiterate, getting everything taken care of in one appointment does not mitigate the need for follow-up from a dental care perspective, and it doesn't mitigate need for routine prevention. So as much as we can avoid general anesthesia for treatment, that's my preference.
Jen (01:22:41):
That is really helpful advice. I think from a parent perspective, I've always wondered if it's better to knock 'em out as you'd say, and have it all done in one fell swoop and that we've not. And so it's helpful to me to feel like, okay, well maybe what we've been doing is the right thing. And also knowing that routine care and making sure you go back every three months and the preventative care is better than that treatment perspective. Thank you. Those excellent points. I really appreciate that. Erica, did you have anything more to add?
Erica (01:23:24):
I think you did a really nice job. Everything I must be on repeat. Everything we do in pediatric industry is with risks and benefits in mind. We tried to employ a shared decision making model with parents to determine best treatment approach and the decision on how to treat, whether it's with an awake, potentially uncomfortable child who is very aware of what's happening versus taking on the risks of general anesthesia or some form of sedation. Those have to be discussed both from the provider perspective and the parents and if possible, the child's and they're complicated decisions. And the more I practice, the more I become aware of how complicated they are. So it's not an easy answer ever.
Jen (01:24:26):
And certainly you've got the system too. It's not just the parent, the provider, but you're also dealing with a hospital system and all of that, all the extras in insurance
Erica (01:24:38):
Family that shows up unannounced and expects for on the spot sedation. I would just put it out there is not a realistic option for most of us.
Jen (01:24:50):
Well, I've got another tough question. I feel like, and you both are dentists, and I don't know if this is a dentist question or both dentist and orthodontist question, but one of the things that is a bit distressing to me is about braces. And I've got a partner in crime on this podcast, Natalie, who has a son also that has cerebral palsy and he just got braces and he's the same age as my son, and they're both about to be 20. And it took a long time for them to get braces and get the recommendation for braces. And both of our kids' scenarios, they don't need them for any kind of purpose other than just straightening their teeth. They don't have bite issues. And so I've certainly asked our dentist about braces before and they've kind of rolled their eyes and I don't know if it's not taking me seriously, but they've been thoughtful but felt like it was just not in the cards for Bauer.
(01:26:03):
And I always look at him, I'm like, I think it'd be nice for him to have straight teeth, and is this something that I feel like it's just, yes, he's disabled, but I think it's important to have a straight teeth in your small, I've had braces twice, I once straight teeth, and I think he probably could tolerate braces, and I don't think it hurts to try. And I just wonder is that ableism and I'll expand it. One of my coworkers who also has cerebral palsy, he just finished his braces and I was telling him about this question that I had and he was like, oh my gosh, I know. And he felt like there's so many people who with disabilities that don't have straight teeth and they should. And he's like, I just had to pay $8,000 for my braces because I wanted my teeth straight and nobody ever recommended it when I was a kid. And so I'm wondering, I guess I'm wondering, is that ableism and dentistry or is it also the logistical challenges and people are afraid that it's going to be painful and it's going to be another thing that these kids have to go through that they shouldn't have to go through. And I'd love y'all's input. I'll start with you, Erica.
Erica (01:27:25):
I mean, I think it's all of the above. No child should be dismissed without consideration of their wants and parental what we describe as the chief complaint, right?
Speaker 4 (01:27:39):
Yeah.
Erica (01:27:40):
Why are they here? What's possible, right? There's no one who should be dismissed. I think when dentists, perhaps when pediatric dentists argue against orthodontics, I don't know that it's coming from a place of bias or ableism as much as we are not typically the ones putting on braces. Let's start with there.
(01:28:08):
So I'm sure there are challenges in finding orthodontists, again, like all dental providers who are confident in their ability to keep the teeth dry enough while they bond on the brackets of braces, for example. That's one challenge. Keeping kids dry is always hard, but nothing is impossible. And there are many children with all sorts of healthcare needs who get orthodontics. So definitely not an impossibility. And I think I keep saying it again, risks, benefits, straight teeth. Sure. Ability to tolerate it is an issue. Keeping the teeth clean is always a risk factor within kid who gets orthodontics or adults. It's harder to keep the teeth clean and there's many dental visits. So if your child is someone who has no trouble tolerating multiple visits where their mouth is open, maybe on a monthly basis, getting things, getting impressions taken, molds of the mouth where nothing's going to drip down the throat and be an aspiration risk, I'm sure there's a billion factors involved. So I would definitely, if it was something that I wanted for my child, I would absolutely try to find an orthodontist who was comfortable and capable of providing orthodontic care.
Jen (01:29:25):
I would suspect that there's not that many. I feel like given where we're at least with the adult, I feel like that's an even bigger unicorn that might be out there.
Erica (01:29:38):
I'm not sure about that because again, my training was at a children's hospital where we had orthodontists, there was an orthodontic training program affiliated with the hospital. And I think there are certainly many providers who are confident in their ability to treat all children.
Jen (01:29:57):
That's good to know. That's very helpful to know. Sydney, what are your thoughts?
Sydnee (01:30:02):
So again, I second everything that Erica said, that there is no one treatment that is universally contraindicated or universally acceptable for everybody, and that everybody has to be treated as the enrolled. They are. One thing that I do want to point out, that's my strategy for care is especially when working with patients with disabilities and cerebral palsy, I do like to let patients and families know that sometimes no treatment or no intervention is appropriate. And again, the best example I can give is my sister who when she fell and knocked down her two teeth, there are kind of an array of options to replace missing teeth, but they all require some level of intervention. And that intervention has tolerable both for the procedure itself as well as for the follow-up care and the maintenance of it. So when my sister fell and knocked out her front two teeth, I told both her and my parents, the best thing might be to not replace these teeth depending on what the follow-up is going to look like and what it would look like involved going through the process of replacing them.
(01:31:21):
And I use that as an example because ultimately she did wind up getting those teeth replaced, and I'm her dentist, so I am confident in my ability to follow up with her and maintain them, et cetera. But one important thing to think about with any treatment is what is the MAC look like for that treatment and what are the potential consequences or complications or repercussions? And I say that because like Erica mentioned, when you have braces, it's more difficult to clean your teeth because you have all this extra stuff that's on them. There's a lot more food that can get stuck, et cetera. So one thought I have is that if it's difficult to clean somebody's teeth, pieces are going to kind of add to that complication, make it more difficult, and that puts people at higher risk for cavities or gum disease that then could create more complications or problems than they have without having the braces to begin with.
(01:32:15):
So it's not saying that, oh no, we can't do braces because you have cerebral palsy. It's more of, okay, let's make sure that if we put on braces, you'll be able to clean them appropriately so that you don't develop cavities again around them that we then might not necessarily be able to address or treat either because you have the braces on or because you're not able to tolerate the treatment that would be necessary for those cavities. Does that make sense? Absolutely. That it's thinking through each step in the process as again, that shared decision making for, it's not just step A in a vacuum, it's what comes all the way through to Z in terms of taking care of your teeth, keeping them healthy, maintaining the braces, tolerating the treatments for the braces themselves, maintaining your straight teeth, et cetera. And the reason I bring that up is because that's something, again, that any dentist should think about for any treatment plan for any patient,
Speaker 4 (01:33:15):
But
Sydnee (01:33:15):
Very often what people stop the thought process for with disabilities or cerebral palsy is, oh, you won't be able to tolerate this procedure.
Speaker 4 (01:33:22):
And
Sydnee (01:33:23):
A, that's again, problematic because that's not necessarily true, but you also want to think about down the road, how is it going to be cared for? How's it going to be maintained? What are you going to do in the case of a complication or that it needs some revision? So that's kind of my thought process, and it's important for patients themselves and families and caregivers and dentists to all have this discussion because the worst case scenario in my mind is doing a treatment that then causes more complications because that follow-up considered at the forefront
Jen (01:33:58):
And what all it would take all the, yeah, that makes a lot of sense. And just thinking about the different types of braces now, I feel like are people doing more Invisalign and things like that that might be easier for people to tolerate?
Sydnee (01:34:17):
And so some thoughts for Invisalign are, Invisalign is not the best method of providing orthodontic care for everybody or for every dental scenario, but it is very effective and widely acceptable. It's easier from a standpoint of you don't necessarily have to do as much on the teeth, but there's still things that have to happen on the teeth in order to move the teeth, you have to put the little tabs so that there's something for the trays to grab onto. And then there's also the being able to tolerate wearing the trays and being able to put them in and keep them in for the right amount. Right. So what's great about Invisalign is it does, in my mind, make orthodontics a little bit more accessible, but there are, again, still considerations to think about for what's involved in the whole process
Speaker 4 (01:35:07):
Of it.
Sydnee (01:35:07):
Again, that being said, there should never be a situation where somebody says kind of site unseen or without that discussion, no, it's not an option.
Jen (01:35:17):
Exactly.
Sydnee (01:35:18):
So it's always important to have that discussion and talk about what are the treatment options, what are the risks, what are the benefit, and what is the best way to proceed given that threshold for those considerations.
Jen (01:35:37):
I've got a two-pronged question here. For families when they're searching for a dentist, whether it's a pediatric or an adult dentist, are there questions when they call a new dentist that they should ask as far as accessibility and making sure that if there's parking or space for the wheelchair and that kind of stuff, there's some good pointers that you guys have. And Erica, you can start first on some of the things that they should ask a new office so that they have a successful first appointment.
Erica (01:36:14):
I think that's a great question. Thanks. We think offices are required to follow. Dental offices are required to follow a guidelines as far as having accessible entrance to a dental office. And real estate is always a challenge with dental offices depending on where you practice in particular. But we have, look, I'm the chair of the American Academy of Pediatric Dentistries Council on Clinical Affairs, which is a lengthy title to say that I am heavily involved in the revision of our pediatric dental guidelines that are followed by practitioners all over the country in the world. And we had a revision of our behavior guidance document come out this past year, and there's a hefty paragraph in there regarding ways in which to establish some behavior guided strategies from the moment the appointment is scheduled. So everything from that initial phone call to schedule the appointment to the moment where the child arrives in the waiting room and goes back to the dental office.
(01:37:29):
And so yeah, it's important to ask whoever picks up that phone when you call, you may want to right off the bat say, listen, my child's never been to the dentist before. Are you able to tell me a little bit about what your office looks like so I can share with my child about what to expect when they walk in, particularly for children with sensory issues, notifying the provider ahead of time can really make a difference. So we talk a lot about something called a sensory adapted dental environment. That is a way to make our patients who have sensory triggers feel more comfortable, whether it's dim lighting, a weighted blanket, some soothing sounds in the office, or even soothing lamps or fidget toys, whatever it is, we want our patients to feel comfortable. Some will feel comfortable in an open space, others need a private room.
(01:38:26):
And talk to your dentist about your child's taste preferences, whether or not you think a regular toothbrush is a good idea versus the buzzing electronic toothbrush that we use in the dental office. Many pediatric dental office employ a hygienist, and so you'll have to make sure to have direct conversations with them as well and just make sure everyone's on the same page. So having those discussions ahead of time is really important. Pediatric dentists are encouraged to ask those questions, whether it's on a written form or just through conversation. And yeah, I think the more you have established before that visit, the easier it's going to be.
Jen (01:39:07):
We actually had a new appointment here in Pennsylvania with the Penn Special Needs Program, and their pre-appointment questionnaire and intake was extensive, and they were so well prepared for us and coming in because of this, it was probably an hour long conversation that we had prior so they could really, really understand exactly what Bower was going to need down to, whether he was going to sit in the chair, whether his wheelchair could lie all the way back, but it was incredibly impressive how extensive that was. Sydney, what are your thoughts on this?
Sydnee (01:39:55):
I second everything Erica said, but the most important thing is the making sure that the office is aware of the diagnoses or potential limitations that you might have and more just from a standpoint of not getting to an office and then being turned away. And I hate that I have to say that, but the worst case scenario is when you take the time out of your schedule, go to an appointment only to have someone say, oh, we can't do anything for you because you're in a wheelchair, or because we don't treat patients with cerebral palsy or whatever the case is. And my career goal and lifetime goal and hopes are that that changes, and that never happens to anybody. But I've heard that story far too many times from patients that I wind up seeing in my chair that they get to the office and they say, oh, you have this diagnosis, or We can't treat you in a wheelchair and you're going to have to go somewhere else. So as much information as you can gain from calling and scheduling the appointment about the accessibility, this space, can you accommodate a wheelchair? My son has X, Y, and Z. I just want to make sure you're aware of that, and really getting those responses from the office is going to be very helpful. For better, for worse, if an office says, oh, we don't treat patients with cerebral palsy, then it's probably a place you don't want to be anyway. Right, exactly.
(01:41:34):
And I hate, again that this is even a factor, but I think at this point a reality, certainly for general dentists, I think pediatric dentists, it's much less of a concern, and it is much more of a conversation of what can we do to accommodate you from a pediatric dentist perspective or pediatric office perspective versus a general dentist perspective is will they even be willing to take the effort to provide care? So that's kind of my best recommendation from making an office aware. And if you get a very positive response of, oh, great, we can't wait to see you, then that's a very positive sign versus any hesitancy. That's something you might want to bit more.
Jen (01:42:19):
Yeah, little red flag. So the last two left, two last questions here. First, are there any resources for families that you guys want to mention? And I will put them on the landing page for the podcast where if people are searching for dentists or specifically for those with disabilities, are there any specific resources that might be helpful that I could add to the website?
Sydnee (01:42:49):
So there are two organizations, the Special Care Dentistry Association, as well as the American Academy of Developmental Medicine and Dentistry, Special Care Dentistry Association is much more focused on just dentistry versus the American Academy of Developmental Medicine and Dentistry, which is A-A-D-M-D
(01:43:07):
Has a more interprofessional kind of component to it. Those are more resources for providers and clinicians, but they do have some education and kind of fact sheets about databases for providers who are willing and able to treat patients with disabilities as well as kind of oral healthcare, oral healthcare facts. The CDC has some useful information, and I can forward this along to you as well for strategies for caring for somebody else's teeth, either methods for caregivers or things to look out for caregivers, as well as just some general oral health facts about healthy diets, good care, like what we talked about, why is oral health important, et cetera. So those are some resources that might either help people google some of their own information or get some education or find providers.
Jen (01:44:01):
Thank you. Erica, did you have more to add?
Erica (01:44:04):
I would add to that list, the American Academy of Pediatric Dentistry's website, which is aapd.org, and that is for many resources for providers and parents. They also have a break off website called Mychildrensteeth.org. So between those two, you can find a lot of information. And I would, if you were to go to the ad's website and you're looking for a provider, I'm sure there's a list of, there's a link that's find a dentist, so you can find a dentist that way. And just frankly, reaching out to the training programs is often a good way to, they can maybe recommend providers in the area too. We're one big family.
Jen (01:44:54):
Yeah, that's an excellent, excellent suggestion. Yeah,
Erica (01:44:57):
Share a lot of information. So your hospital may have a connection to a dental clinic and if not, certainly reach out to the AAPD.
Jen (01:45:06):
Yeah, that's a great recommendation. All right. Final question, the big one for each of you. I'm going to start with you, Erica. What would your top two takeaways be for families with regard to dental health?
Erica (01:45:18):
Well, I would say there are things I've learned even in this conversation with you, Jennifer and Cindy, that never underestimate what your child is capable of. And on that same note, continue to advocate for your child when pursuing healthcare in all of its forms. You are the best at that. You're a kid, and as dentists and as healthcare professionals, we have a lot to learn, but I do believe we all want the best for your child. So help us learn together. I sometimes have shared this story, which I think has some relevance here because Jennifer, by virtue of hosting this podcast and Sydney, certainly you have demonstrated so much advocacy for your sister and for other individuals. One story that always comes to mind, it's almost literal in terms of what I'm about to describe, but I once had a child come in for a dental exam.
(01:46:33):
I was a resident actually at the time, and she had a trach, so she could only speak if the trach was closed, if she had the cap over it, but I didn't know that at the time. I wasn't all that familiar with all of different health equipment that children use at the time. And so anyway, she came in with her grandmother, a 4-year-old girl. She came in for a dental exam and her grandmother was a little bit frail and the child wasn't really willing to sit by herself in the dental chair, so a co-resident and I sat face to face, and we had the child sit in my co-residents lap giving her a hug, and then the child leaned back, so her head was in my lap, and I had to do a 30 second dental exam, which as you know, can be quite noisy when a child, but this girl was absolutely silent, and I just saw her waving her head from side to side.
(01:47:38):
I was still learning the physical nature of doing a quick exam, holding the head still long enough to get a good look at the teeth, which is the best skill you learn as a dental resident. Anyway, we completed the exam. I thought nothing of the experience of this child while I was doing the exam because it was so quiet. Then she sat up, she waddled over to her grandmother's purse, she took out the cap for her trach, put it on, and immediately let out a big whale, and she cried. And I think about that moment all of the time, it's 10 years later, I still think about that moment and how she needed that equipment to use her voice, and literally how while it was off, her grandmother had to be her voice and I had to be her voice, even though I didn't recognize it in that moment. And so it's a moving story for me to remember that I need to continue to use my voice for every child who walks into that room, even for the noisy ones. So I'll leave you with that. And Sydnee, if you have anything to add
Jen (01:48:51):
Your top two takeaways. Thank you. That was beautiful.
Sydnee (01:48:55):
Number one is remember that everybody deserves the respect of the humanity that they maintain because, and this is such an important point for me, just because people are different doesn't mean that they are not capable or don't deserve the respect of being a full and complete human being. And to your point, I think you mentioned this, that Bower dentist, and he's, what you said, 20 years old, he'll be 20 next week talking to him. He was okay, well, happy almost birthday, but that someone was talking to him, he was like a baby people, regardless of how they communicate what they are, are not capable of what they do or do not do or say, deserve respect of the person that they are in the stage that they're at. So that being said, it's incumbent upon providers to offer that respect, but more incumbent upon people to make sure that they demand that respect.
(01:50:07):
And it should be no different for people with different abilities and especially their loved ones, their caregivers, their advocates, and any individual in any setting where they're being cared for or working with anybody else. And that's so important to me because very often I think that that is a reason that patients are not allowed the full extent of care that they should be receiving. So that's number one. And then number two is don't be afraid to speak up. Certainly. So kind of mimicking what Erica said, and don't be afraid to try something, especially as parents, for better or for worse, I often see providers say, oh, you won't be able to do this, or We can't help you. We can't take x-rays. But I sometimes see parents and caregivers say the same thing. Oh, they won't be able to tolerate that. And as the parent or caregiver, again, never underestimate what somebody might be capable of, especially in a new experience with somebody else. Meeting a new dentist, a new provider, a new doctor is a new opportunity to show off what you can do or build a new relationship. And always try. I mean, this is all distilled down to the worst thing that you can do is not try. And the best thing that you could do is try and then succeed.
Jen (01:51:32):
Amazing. Both of you, I have learned so much, and you're four takeaways I guess, between the two of you are tremendous. I think that it's distilling it all down and truly, really all of it is, it's so meaningful and for the families if it helps families better advocate to get the care that their child needs and not be afraid to advocate for the care that their child needs. And also, like you said, not be afraid to try because it is. I mean, our kids go through so much, and I think that too is part of it for us. Moms and dads out there. We see our kids go through all of these procedures, and I can, thinking about that from a parent perspective, oh, my kid might not be able to tolerate that. It might be our own fear because of what we've seen them have to go through. And so trying to overcome that and say, okay, let's try, because in the long run, this is really important for their healthcare and for obviously their oral health over their lifetime and prevention. So thank you. This is incredible. Absolutely incredible advice, and I'm so grateful for this conversation. Yeah,
Erica (01:53:04):
It's great meeting you today. Thank
Jen (01:53:05):
You. It was so great to meet you both. Like I said, I'm grateful.
Sydnee (01:53:09):
Thank you. Thank you so much for having us. I think both Erica and I just want to share this information and again, use our voices to benefit broader populations and broader communities. Then just the people we work with face-to-face. So thank you so much for allowing us that opportunity and for having us.
Jen (01:53:29):
Yeah, and we'll have it up on cp resource.org as well as the resources you have discussed. And Sydney, we'll also have her information up there so that if families have questions, they can reach out. And yes, I'm just so grateful. Thank you both for being on the show today.
Erica (01:53:51):
Thank you. And I will just add one thing, which is that I had to pull up the podcast that I listened to earlier this week to, it's your podcast, and it was your recent, I think it was last year you did an interview with Dr. Maitre. Is that her name? Natalie,
Jen (01:54:06):
Dr. Natalie. Yeah, Natalie.
Erica (01:54:08):
Yeah. And she said something right off the bat that was so powerful, and it was regarding her experience in whatever stage she became a neonatologist, and how she came to that decision, how amazing it was to save a life. But she referred to the real power of holding someone's hand in the daily life of that child and that person. And so this is just my way of saying I'm grateful to both of you because you have done that for your own child or your own sibling, and I think that is what I try to remember and I hope my pediatric colleagues are aware of, is that your daily lived experience is what we want to honor during each visit.
Jen (01:54:58):
Wow. Thank you. Thank you. You guys have a wonderful day. Thank you so much for being part of the show. Bye bye. Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's mac.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.