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Link to Show: Episode 3: Parenting Kids With Chronic Illness
Guest: Dr. Katie Fleischman
Link of interest: Dr. Fleischman talks about The Virtual Hope Box, a terrific stress management app available free for iOS and Android.
SAUL ROSENTHAL: Welcome to episode three of Life in the Time of Corona, a podcast exploring the many ways to stay healthy and sane in the strange times. I’m Dr. Saul Rosenthal, a developmental and clinical health psychologist. In the last episode we talked with Dr. Roseann Capanna-Hodge about parenting when everybody is stressed out due to the restrictions we’re all living with. But what if your child has a chronic medical condition like pain or diabetes. Dr. Katie Fleischman works currently in the Department of Otolaryngology and Communication Enhancement in the role psychologist for the Balance and Vestibular Program at Boston Children’s Hospital. Katie is a pediatric pain psychologist that specializes in the assessment, management, and study of chronic pain and vestibular conditions in children and adolescents using a combination of cognitive behavior therapy and biofeedback techniques. She is an instructor in the Department of Psychiatry and Psychology at Harvard Medical School and has presented extensively on the topics of pediatric pain, migraines, postconcussion syndrome and chronic dizziness as well as other medical and co-occurring mental health conditions at numerous institutions and conferences. She was previously with the Headache Clinic in the Department of Neurology here at Boston Children’s Hospital. Katie, welcome, and thanks so much for joining us today.
KATIE FLEISCHMAN: Thank you for having me.
SAUL ROSENTHAL: So one of the things I’m wondering with everyone I’ve talked with, is how… or what are some of the biggest changes that are going on with your work or in your life?
KATIE FLEISCHMAN: Yeah, I think there’s been a lot of changes. I think that we’re really pushed now, head-front into the virtual world… the virtual health world… where we never fully maybe adapted before like other institutions have… being able to deliver virtual health visits to rural communities and just seeing patients as they come in to our multidisciplinary clinics, and now it’s full-fledged… how are we going to deliver and care for these treatments… or for these children… while giving them these treatments virtually? And how do we get the buy-in as well is a big part of it.
SAUL ROSENTHAL: So what are you hearing from your families that you work with, about the biggest challenges they’re facing?
KATIE FLEISCHMAN: I would say the biggest challenge that families are facing at this time is how to adapt being home… how to, on the one hand, what I’m hearing from families is that the kiddoes that I treat which are with a particular vestibular disorder with headaches or migraines, chronic dizziness, visual phenomenon, are doing quite fine because they’re not in school. Now, it may be because their school is not providing them with the best modifications or accommodations of use of a 504, so they’re getting the extra breaks and being able to tailor their homework with a reduced amount, not having so much stress on their plate which exacerbates their symptoms at this time… and on the other hand, it’s… well, we’re hearing that, okay, they’re doing pretty well, it’s a fear of, “Boy, that’s not something that we teach and support of not having them continuing to function by being active in physical activities in school.”
So it’s how to continue with the same routine as you would have in school, just modified… so you know, same sleep schedule, eating schedule, trying to eat as healthy as we can, I know groceries are limited out there… you know, continuing with doing some physical activity, applying their skills at home and relaxation and stress management and learning how to live in tight quarters.
SAUL ROSENTHAL: So not surprisingly, these families are facing a lot of the same challenges as any family regardless of medical status. I’m also wondering if there’s anything unique about children with chronic health issues… anything that they and their families really need to pay attention to?
KATIE FLEISCHMAN: Yeah, and I think you got it exactly right as these are very, very common issues that we’re hearing… that everybody is reporting, and not just in particular to children with chronic conditions. I would say in particular the fears that the kiddos are explaining is, “Is this going to be a big barrier or is this a big pause, so to speak, in my treatment of getting better? Like, am I going to be able to go to college now this fall? Or is that going to be delayed?” So it’s almost like a stall in treatment and having them understand and again, I think it’s all about the buy-in, is that we can deliver quality care through telehealth, it won’t exactly look the same, and again, the specific delivery of medical care can be seen by urgent basis, and we’ll deal with those virtually that aren’t so urgent but that we’re still there and highly involved, as needed, in their care.
SAUL ROSENTHAL: So the kids are worrying not just about things like, “Am I missing so much school that I won’t be able to move on,” but in addition to that, “Because I’m not getting the typical treatment I get, is that actually going to also have an impact on my ability to move on?”
KATIE FLEISCHMAN: Correct, correct. Or, you know, is this a stall and delay of those that have been looking for a more definitive explanation of their illness… having those tests, you know, and delay and maybe interventions that are usually needed as physical therapy or if they get trigger-point injections like a fully-tailored program… is very difficult, but we’re learning, and our physical therapists that we work with that are wonderful, are adapting how to do PT now, virtually. So how do they get all their treatments at once and, again, continue to find out if there is something else going on with why they have the symptom presentation if that’s either the family’s main question which it usually is, or it may be the medical team’s… or it should be you know, in fact, always on our minds and reassessing it at any point when the complaints are still high.
SAUL ROSENTHAL: So there may be delays in testing and diagnosis as well as treatment, and many of the providers are obviously adopting to telehealth. I know that some of the PTs I’ve heard about are still seeing some face-to-face but most of them are also trying to figure out how to do the telehealth treatment. I know for the work that you do, you do a certain amount biofeedback as well as cognitive behavior therapy and things like that, so what are some of the issues you’re running into as you try to adapt to a telehealth model?
KATIE FLEISCHMAN: Yeah, I think that traditional talk therapy supportive services, CBT, can be fairly easily done through telehealth. The challenges that I face is those that I have not treated previously or they were very early in their treatment, I did not complete their biofeedback assessments or train them yet in their residency frequency breathing or other special breathing to help abort their symptoms, is a little bit harder because I’m not going to be able to assess as well how they’re breathing, at what rate they need to breathe… it’s basically a trial and error and figuring out what can they use at home to also kind of help us use devices that will give us some feedback such as more use with sports watches. You know, does the breathing then bring them down or lower their heart rate down as it did in clinic? Or continuation and using the apps… or giving them a standardized number to start the breathing and using the videos to be able to model some of the techniques, although that we can’t have them see that live interaction and the very specific tailoring of the treatment at this time.
SAUL ROSENTHAL: So, for example, you may teach a child how to do the self-regulated breathing, low and slow, if it’s someone you worked with in clinic you would’ve seen… you may have measured, say, the change in heart rate, the change in respiration, and they would have reported changes perhaps, in their migraine or other pain disorder… but that’s obviously a lot harder when we’re doing it by telehealth.
KATIE FLEISCHMAN: Correct, correct. And I use the same application, the Virtual Hope Box, whether I did start with um… at the first initial appointment and just introduced diaphragmatic breathing to get them used to more slow and low-paced breathing before we do the resonance frequency breathing to abort their pain and their vestibular chronic dizziness or visual phenomenon symptoms that they most commonly deal with, and that way I can at least get them to have a number, let’s say, which a lot of people fall into is four seconds inhale, six seconds exhale, and then modeling how we do it really relaxed and slow and low as you said with pursing your lips for that slower exhale, and really focusing on that more than the inhale of oxygen. So trying to tailor these techniques, but not getting, again, a very clear picture, like, are they doing it correctly. When they’re having problems, how can we help them by visually just seeing them do it and adapting without seeing the results right there, and furthermore to get the children’s buy-in, I think, which is hard without the use of biofeedback in front of them… seeing the live data as you will… and the results.
SAUL ROSENTHAL: You had mentioned Virtual Hope Box which is a terrific resource and I’ll link to it in the episode notes. I was wondering if you could describe it, though, for our listeners?
KATIE FLEISCHMAN: Sure, so the Virtual Hope Box is an application developed by the Department of Defense and they used to have… and I got this from a colleague… it was called Breathe2Relax and that was the first initial app to work on breathing. That one still exists. Sometimes I have patients and families download that one too, in case there’s any glitches with one of the apps. Virtual Hope Box delivers more coping skills to the individuals. For instance, under… it has four major categories… one, Distract Me, gives, like, different puzzles to distract themselves from their symptoms because we want to focus again, you know, before or now during the virus, it doesn’t matter when, you know, routines and schedules and the things that we do aren’t going to change, they’re going to be modified.
So we’re still trying to promote, you’re still going to do the same things that you’ve done in the past whenever you feel a negative symptom or negative mood, you’re going to apply your coping skills either to distract them from the pain, having the family not focus on the pain and talk about it, and they can go to Relax Me if they’ve already started to learn their breathing skills. They can… under the Relax Me, will show three different imagery types of relaxation exercises and progressive muscle relaxation that they can also do passively, and so I’ll have them explore that application and to see what works for them. So not only doing the abortive breathing treatments but also inducing those times of relaxation that I believe that we need now more than anything these days, and staying calm while normalizing these fears and ambiguous nature of this time.
And they also have Inspire Me which is major quotes, and you know, to put your mind in perspective of hard times or maybe if you’re having a bad day, to put… using your CBT and cognitively framing thoughts. And then have a section also on coping tools and schedules. A lot of my patients use different ways you know, whether they like paper format or writing things down or using applications or you know, how they like to schedule it in, but it does give that section as well. So I always start out with that, and that way too, with the breathing section, I’m able to help them put in the exact numbers if I get their breathing rates, if we’re far along enough in treatment or for them to put in the standardized four-second inhale, six-second exhale, and start showing them how to follow and engage with the application just like we would with the live equipment in session.
SAUL ROSENTHAL: These applications are really terrific in helping clients keep their treatments going, at least the behavioral and cognitive parts of it, things like Virtual Hope Box, the Breathe2Relax… it’s interesting a number of them were developed by the Department of Defense and the VA. What other things are you finding that parents are doing to try to help their children keep to their treatment or help their children thrive as much as possible given their medical condition?
KATIE FLEISCHMAN: That’s a good question. I think that I always go back to parents… down to the basics… and I say this with… in regards to behavioral modification, rewards and operant conditioning, and I always let patients know I do the same thing. If I do X, Y, and Z in and especially those hard ones like sitting down and writing a manuscript, I get to have my nails done. Maybe I don’t get to do my nails right now and actually get them done, but I just bought myself a nail kit online from Amazon because I finally got my dissertation accomplished with publication, so I need to reward myself. So I bring that back and reinforce, like, get the headspace back to okay, let’s have this on the fridge, let’s put that schedule, and you know, I find that teenagers still like to put that schedule and that sticker on the fridge when they’re reinforcing themselves… you know, find that daily reward. And it doesn’t have to be monetary, it can be just playing a game with the family or having more TV or video game time. And I think that those times, again, should be what they were before. The routine shouldn’t have to change entirely.
And then… so we’re focusing on the positive and then, you know, helping them stay accessed and forward to then you know, smaller goals and then larger goals and that they still can accomplish these goals, and to take a step back and remembering to accept the way that they feel now and the times that we’re in now but it’s not going to be like that in the future. Kind of going back to the basics and I think another big one that families are having a lot of problems with and just like any family, is communication.
I think a big thing is how do we live with each other in such tight quarters and how do we not get on each other’s nerves when we sure know those that we love, were to really poke them and get them upset. And how do parents, where they may have taken a walk or went out with their friends, how do they do that at home. You know, how do they manage the stress and communication as a parent of the child and how does the child cope within that family and also keeping the family dynamics to be, again, like any normal routine and not so that person is identified as the sick person, and getting different treatment than possibly the other kids, and changing that dynamic completely.
SAUL ROSENTHAL: As I’ve had conversations during the last few episodes of the show, a theme that does seem to be coming out is the same things that worked before the pandemic can certainly work during the pandemic and we should, as you say, stick to the routine. Part of that theme, though, is it seems sticking to the routine might require some more deliberate thought about how we stick to that routine, so as you’re saying put that schedule be sure to put that schedule up on the refrigerator and be sure they know it’s there.
KATIE FLEISCHMAN: Yeah, and the same thing I think with… really is now a good time to… especially as I… I treat a lot of preteens and teenagers so at this time developmentally anyway, we want to really focus on clear expectations and clear norms, so getting those down, knowing what to expect, what are the family expectations, continuing to, maybe, make new rituals and routines that they weren’t doing before… I think this is a really good time for families to reconnect. I think it’s a really good time for kids to reconnect with their friends and share things that they’re learning and how to cope with each other.
One of the things, one family had such a great idea that I was treating, had two little twins that were real young, two years of age and pre-teenager and mom who worked at home and the father worked outside. Well, that’s kind of… it could be going on right now with one of our healthcare, firefighters or anybody that’s outside working right now, and how do you learn when someone’s working or when they need their own time or when they’re opening for questions or for help if the teenager is doing homework or something? They came up with a great idea about using different hats, like mom will wear one hat while she’s working so that means mom does not have the time to talk right now and the child I was working with… when she is busy, she doesn’t have the time to help out with the child-rearing or helping mom out with something. And they also came up with different badges. So we like, discover different ways of how to communicate that without communicating, and to know each other’s signals when we’re in each other’s space all the time.
SAUL ROSENTHAL: So it’s a really nice example of deliberate communication trying to keep our roles clear, trying to keep communication open. Now you’ve worked with kids who have all sorts of chronic health conditions. Are there any unique issues around specific conditions that parents should be aware of or should be thinking about? For example, kids who might have diabetes, kids who might have migraines, kids who might have some of these vestibular issues?
KATIE FLEISCHMAN: Yeah, I think that it’s the same thing, for instance, keeping the routines and the schedules and, of course, the adherence to their medication, their medical team’s recommendations, and trying to integrate the best and find ways how we can integrate the other care that’s now nonessential/non-urgent that they do need in their care, let’s say, for muscle tension. A lot of the physical therapists aren’t seeing… as we talked about… some are face-to-face, but a massage therapist… those physiatrists that deliver or anesthesiologists, may not be delivering those type of treatments at this time, so trying to find other ways in how to help them manage their pain or manage the dizziness, making sure that they’re seeking out questions that they have to their medical team.
When to know is something urgent, do they need to come in or do they not? What is there, I mean for all kids with all different diagnoses and, you know, dependent on their histories, are they considered high risk? What extra precautions does the family have to consider, and really reinforcing that during this time. And again, I think that the biggest thing is communicating back with the healthcare team. We’re still here, we’re still providing services, it just may look a bit different in how the delivery is implemented.
SAUL ROSENTHAL: What you just said reminded me of something I’ve been thinking about, which is about us as providers. Now, you’re part of a multidisciplinary team… there’s physicians, there’s nurses, other providers on the team itself… how are you finding that they are responding and what role do you find yourself playing in helping them adapt to the pandemic?
KATIE FLEISCHMAN: Yeah, that’s a very good question, and one I thought a lot about actually last week when I was modeling some of the ways in which to help our ad-men get the buy-in for virtual health visits, whether for myself or from the medical team and as, “Hey, we’re here and we can help you this way. Again, it may look differently but we can help with the stress, we can help apply the skills, we can teach you new skills, you know, the medical team can adapt what they know and deliver their specific treatments or assessments”, and when I was modeling some the things that I say to patients, the team brought, “Well, can’t we have therapy with you?” You know, laughing, and that’s where I thought of after the meeting, I think, “Well yeah, that is part of my role”, and that’s part of a pediatric psychologist when I was working in oncology and working, you know, in the NICU and PICU and really supporting the nurses and the staff through really hard cases, it’s not just being there always for the patient, it’s being there for the team. And so how do I support my teammates and how do I help them with their own stress? Because we all have stress. And I always tell kids when they come meet me for the first time, if they didn’t say they had stress or some anxiety, I would be more afraid. I would be very concerned, because it’s very normal, and I would be normalizing this, you know, also to the staff… that, “Hey, we’re here in a stressful time, we’re all trying to adapt to these new models and a lot of technology”, that I will, you know, speak for myself that I’m not the best at learning and adapting that way initially, but I will catch on. And just their own stressful times that they have in dealing with it in their own way or what’s going on in their own life.
So what I did and I brought to their attention yesterday, as I said, “Well, here’s one way that I can help support you guys and please give me feedback”, and I’ll send out weekly or biweekly whatever works the best on some helpful resources that I provide to my patients that I particularly practice, because a lot of us, I believe, we should practice what we preach. I do my own CBT, I do my own mindfulness, so here are some resources that will not only be helpful for you to learn for stress reduction but to share with your family members and so they really understand what our role as psychologists within the team… what we do with our patients and that we can all understand and use the same terminology and really understand everybody’s role in the system and how important overall stress reduction and different ways of doing it, is important. And also, I did a section on just, you know, good news. You know, we’re hearing so much bad news, we turn the TV on and what are the good different videos people are sharing and finding what are, like, some funny ones? Then lastly, I have a section of Ask Dr. K. and ask me any question of you know, non-sensitive information. Let’s say, my kids are driving me nuts – what I do, or what’s a strategy that you use to help them cope at this time… I’m having trouble sleeping – what are some effective ways that I can help with my sleep? So any kind of thing that they come up with they can send me and hopefully I can help them during this time and give them some advice to reduce their stress.
SAUL ROSENTHAL: I think it’s good that our patients know that we’re both human, and going through some of the same stresses and challenges that they are…
KATIE FLEISCHMAN: Correct.
SAUL ROSENTHAL: As I think about what you’ve been talking about today, a number of themes really do seem to come up… the idea of getting back to basics, sticking with routine, communicating clearly, coming up with new ideas about how to communicate, the idea of the family who used different hats and different badges… I wonder if you have other examples of innovations that families are using to help keep themselves and their children going and even thriving… or if you have any advice for the families that are listening?
KATIE FLEISCHMAN: Yeah, one of the things that has been used by many of my patients… a couple different things actually… I say better knowing who each other are gives us better knowledge acceptance and understanding so maybe that looks like at the dinner table, taking turns and talking about your day, and practicing again those essential listening skills… just listening… and I think we’re all, especially at this time too, we want to give and give and give advice and sometimes we have too much expectations of having people follow through with it. Now is the time to listen and just reflect, you know, hearing what is going on within each other’s emotions and our feelings and normalizing that.
I think now is the time to again, do something different, reconnect with the family, focus on resiliency, focus on what we have right now, or how can we help… or another technique that I do with families to really understand each other and a good creative or crafty way is making… or using a box… a shoebox… and different magazines, words, I mean you can be as crafty as you can be, but each person then puts inside the box how they see themselves and outside the box… and you can tape it, you can paste it, glue it, or whatever… how they perceive people perceive them… and so really getting to understand where their child’s at… you know, their perception of illness, their perception of being an adolescent, what are their identities, knowing that they have identities besides their condition, I think, is really important – knowing about each other if they have siblings – or knowing unique or new things about their parents, and a time of just sharing and hearing and listening without all the daily hassles and distractions in the fast-paced westernized society that we typically live in. It’s a time where we have to stay calm and learn how to be accepting of living in this way at this time.
SAUL ROSENTHAL: It certainly is an opportunity to live at a slower pace as you’re suggesting to stay calm, to be deliberate, to be mindful of each other. This is certainly a topic that I can talk about for hours but unfortunately our time is a bit limited. I do like to end the discussions with a few “one thing” questions if that’s okay?
KATIE FLEISCHMAN: Sure.
SAUL ROSENTHAL: So what is one thing that people should take away from our discussion?
KATIE FLEISCHMAN: I think that the biggest thing is that whatever type of illness that you’re dealing with, whether or not you have an illness as a child or young adult, that we’re all facing the same thing, we’re all facing the same feelings and fears and trying to manage our lives in a different way and modifying and really normalizing that situation.
SAUL ROSENTHAL: And what is one thing that you are doing to take care of yourself?
KATIE FLEISCHMAN: What I’m doing is trying to pick up all the old lists that I’ve had of things that I wanted to do that I probably haven’t done since probably high school, so I’m actually going back and reading books which… I’m not just reading journals… I am implementing more techniques and discovering and looking at the applications that I give and trying out some of these applications myself in different ways, to use mindfulness meditation using my visual imagery a lot more. I hear my trip in my mind, I can see the beach, I can hear the waves and I can’t wait and I know that I am going to have this wonderful vacation at some point in time and just being in the moment and remembering what that feels like.
SAUL ROSENTHAL: And finally, what is one thing that you think this coronavirus experience has changed about us forever?
KATIE FLEISCHMAN: That’s an interesting question. My hope is that there will be more unification and acceptance in the world. I’m hoping that people will see and learn, which they are doing, on how to help one another… that how our individualistic society can be collective at the same time.
SAUL ROSENTHAL: Dr. Katie Fleischman works at Boston Children’s Hospital in the Department of Otolaryngology and Communication Enhancement for the Balance and Vestibular Program. Katie specializes in the study and treatment of pediatric chronic pain and vestibular conditions. She is an instructor in the Department of Psychiatry and Psychology at Harvard Medical School and has presented extensively at numerous institutions and conferences. Katie, thanks so much for joining us.
KATIE FLEISCHMAN: Thank you so much for having me, Saul. It was my pleasure.
SAUL ROSENTHAL: And thank you listeners. I look forward to continuing the conversation on Life in the Time of Corona
Saul Rosenthal, PhD April 27th, 2020