Episode 42: How to get smiles while applying moisturizer, sleep strategies and other eczema care advice
Are you feeling lost and don’t know where to find trusted advice on managing eczema? Introducing ECZHALE, your one-stop-shop for reliable information and resources on eczema care. Join Dr. Jennifer LeBovidge, psychologist and Assistant Professor at the Atopic Dermatitis Center at Boston Children’s Hospital, and GPER’s Christine Pham Cutaran as they discuss the challenges of being an eczema caregiver and where you can turn for help. (And if you like our podcast, consider supporting it with a tax deductible donation). Read the transcript.
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Lynita: Hello, and welcome to the podcast. September 14 is World Atopic Eczema day, and this year's campaign will focus on revealing the true unfiltered reality of those living with eczema. Highlighting their daily challenges and the need for comprehensive care. As part of this, our focus today is on supporting families through the eczema journey and to share with you a fantastic new resource for eczema families.
I'm here with Christine Pham Cutaran from Global Parents for Eczema Research, and our guest today is Dr. Jennifer LeBovidge. Dr. LeBovidge is an Assistant Professor at Harvard Medical School and Psychologist at the Atopic Dermatitis Centre at Boston Children's Hospital. She helps patients and families manage eczema by providing psychological support and facilitating educational groups. Dr. LeBovidge and Christine, welcome to the podcast.
Christine: Thank you for having us.
Dr. LeBovidge: Thank you. Very excited to be here.
Lynita: Dr. LeBovidge, you talk about the psychosocial impact that eczema can have on families. What sort of impact is that?
Dr. LeBovidge: We know that there is a lot of stress with the intense itch associated with eczema. But it's more than just itch because it affects sleep for patients and caregivers. And we know that sleep disruption is particularly challenging for families. We see this impacting daily mood activities. We also know that some kids may experience feeling self-conscious about their skin, or it may impact social relationships, or sometimes even impact the very things that typically help promote positive mood, like sports or activities with friends. So we know it can have a real impact on daily life.
We know, also, there can be an impact on caregiver child relationships. So if we think about the fact that caregivers are having to help kids manage the itch scratch cycle that can become a big challenge or a point of conflict, And for caregivers, we know too, there is that intense stress that can come with feeling like I want to be able to help my child and make them feel better, but I just don't know how. And so the, impact can be really broad and, we know that anxiety and depression can be actually known comorbidities of eczema. And this goes both ways. The burden of the disease and anxiety and stress can trigger more itch. So these can all be things that are difficult for families to manage.
Lynita: Sure. I don't think I was aware of it at the time, but much later I was like, ooh... I should have paid more attention to my mental health.
How do you feel, Christine?
Christine: I was diagnosed with postpartum depression and it wasn't recognized until after months of dealing with my son's severe eczema because that wasn't at the top of my mind. I didn't think about it and it explained so much. And I was still dealing with, with it throughout my second pregnancy even a year and a half later. So it was crazy.
Dr. LeBovidge: I think both of your comments really speak to the fact that I didn't mention, but it's so important: that because the impact of eczema on patient and caregiver mental health isn't often discussed. I think that a lot of families feel alone in this, and that further contributes to the sense of isolation.
Lynita: When we are dealing with eczema, is there anything specific that parents should look out for with their mental health?
Dr. LeBovidge: Yeah, when we think about supporting caregivers, we often use that same analogy of putting on your own oxygen mask before helping someone else. Things we want to think about are: do caregivers have ways to refuel and manage their own stress. And I think so often parents feel like they shouldn't be doing that. Putting themselves first or thinking of their own well being when their child is suffering feels somehow like not the right thing to do, but when you're feeling that your own stress level is high when you're energy level is low, mood is down, stress, worry are ongoing… Those are times to think about what are the small things I can do for myself, whether it's a little time out to read a book, to go for a walk, to recharge with a friend. These things are so important and to really have some self compassion too, because parents often feel like they're not doing enough and sometimes even just thinking about, well, what would I say to a friend? This is hard. This is me being in a difficult situation and doing the best I can.
Christine: There's so much stigma surrounding the thought of caring for myself before my child. And I know that while my son was at his worst, we would get very critical comments directed at us, like, “he looks terrible”. And at that time, my mental state was so horrible. I felt very lost and judged. And oftentimes I was criticizing myself and putting that guilt on me. But it's weird, how do you navigate around that whole stigma as an eczema caregiver then put yourself first, because you do need to have some sort of oxygen mask?
Dr. LeBovidge: That is really, really, really hard. So first of all, reminding yourself what you can control, what are the things that you're doing for your child, for yourself? That we can't control other people and giving yourself that pat on the back to know that you are again in a difficult situation and doing the best you can and certainly finding those people in your support circle that you can talk to at those times and including a provider letting them know some of these things have happened is perfectly okay.
And I think also that makes me think of the way we handle those situations as also being important in thinking about our children and the coping that we're giving them. So, for example, if they see someone make a comment about eczema, being able to say we've got it under control or to politely extricate yourself from the situation. These are things that give the message to the child that there's nothing wrong with them, that this is a medical condition we've got it. So that comes up a lot too is, what are we modeling for our kids in these very difficult moments to navigate?
Christine: Where were you when I was going through all this?
Lynita: I have to admit when my kids were toddlers, I wasn't good at looking after myself, but now on a lot more reflection, I know that the best thing I can do for them is look after me.
Lynita: Caring for kids with eczema requires a multidisciplinary approach. What is a multidisciplinary approach? And what should we be focusing on?
Dr. LeBovidge: Yeah, so essentially we're bringing to the table professionals from different disciplines who are collaborating to provide an integrated care plan for children with eczema that sort of recognizes the multifaceted needs that they have and the areas where family education is so important.
So in our team, we have a pediatric allergist, we have a dermatologist. a dietitian, a nurse practitioner, which speaks to the enormous need for patient education about eczema: why we're doing what we're doing. It's hard to stay consistent with a routine, right? When you don't understand why do we need to do all these things. And then certainly my role as a psychologist is that psychosocial piece.
Often when we talk about that approach, we will sort of talk about all our roles on the outside of a circle. And the inside circle, that's the patient in the family. So they really need to be at the center of this treatment team when we think about good multidisciplinary care.
Lynita: Wow. That's fantastic.
Dr. LeBovidge: I do want to say, too, that we recognize that, specialty Clinics like this are sometimes few and far between and so we've also thought about ways to increase access to some of the information that we think is really important for patients and caregivers in navigating management of and creating a guide for patients and families that speaks to disease management, as well as coping with things like itch and sleep and the treatment routine. Because we've been thinking about how can we increase access to that.
Lynita: absolutely. You're on such a huge learning curve when you first get that diagnosis. You're also learning to be a new mom usually, and it's just so much all at once.
So now might be a good time to ask you about Eczhale, the new wellness hub that you've been working on in conjunction with GPER, because I know you've created it for people that can't access a specialty clinic like that at Boston Children's Hospital.
Dr. LeBovidge: Absolutely. I'm hoping Christine will jump in here too as a key partner. I was a member of a panel for a conference on mental health on eczema and GPER's own Korey Capozza was the organizer of this panel and it was really inspiring. And I found myself feeling like, how do we get this information and these resources out to families? Because families, we know, are seeking information on all the issues we've been talking about. But we want to also be able to give them evidence based information. And I may turn it over to Christine here to share her perspectives on Eczhale.
Christine: Yeah, definitely. So you explained it very well. Your Eczema Handbook was such a robust handbook that we felt it needed to be shared. But how do we do this in a way, like you had mentioned, with evidence based research for anyone in any aspect of their journey dealing with eczema? Um, and have the reliable resources in one place. And from that came the birth of Eczhale, which is our new wellness hub! We've built a robust online platform with parent centered materials. It provides an online toolkit to support patients and families. The toolkit is tailored for pediatric patients to include children, adolescents and caregivers. It features demonstrations of mind, body relaxation from our very own Dr LeBovidge here.
Another key takeaway from the development of this website is, where do you go from the doctor's office to then also acknowledging the mental health burden of eczema? Because oftentimes when we went in, it was never addressed. So hopefully also being a resource for health care providers.
Dr. LeBovidge: I'm glad you brought up that piece around further support because another critical piece to Eczhale will be some resources on understanding what you might be looking for when additional mental health support might be beneficial and how to access that.
We hope that exhale will give families a lot of practical tips that they can use on their own, but also some normalizing that mental health support for eczema can be a really useful thing. And how do you find that?
Lynita: I've had a look at the website and I wish that had existed when my son was newly diagnosed.
Christine: Agree. I wish this existed as well, because it's such a wealth of knowledge even for myself. I consider myself a veteran eczema caregiver, but I'm excited for this to come out because this is going to be so useful to so many all over the world.
Dr. LeBovidge: One of the strengths of Eczhale is really this partnership that we have and input from caregivers on what will be most helpful. So I'm hoping, and I think we will, find ways to have that be an ongoing part of Eczhale as well.
Christine: Absolutely. that been very key in the development of this project. And we will continue to reach out to caregivers and ask for their feedback. Being a caregiver myself, and Iona, who's the project associate, she suffers from eczema as well. So, both of us having the caregiver perspective as well as a patient perspective, we've really put our hearts into this. And of course, having the resources from Boston Children's Handbook, as well as the expertise of Dr. LeBovidge and Dr. Scheider has been very crucial.
Lynita: I love that it's created by people with the experience in conjunction with experts like you, Dr. LeBovidge. Thank you for all the time that you've put into this and I love that it's going to be a free resource for anyone all over the world.
Dr. LeBovidge: I'm very excited about it and it improves the resources I can give to the families that I work with as well. So it's the collaboration, I think it's been a very positive one.
Lynita: Sure. I'd like to, if you don't mind, ask some questions about specific parts of treatment that we might find answered on Eczhale. For example, if you're having an argument every night with a kid to put cream on, that's no fun for anyone in the family. So um, I'd like to know, have you got any specific advice about how to overcome these treatment hurdles?
Dr. LeBovidge: Yeah, this is really a common challenge and I think for various reasons, right? So for some children, it might be they don't like the feeling of the cream, it may be, ‘I am just sick of doing this every day, same thing every night’. So some of what we work on may depend in part on what is causing the challenge, but certainly with young children, I'll think about things like medical play. Like having children draw on their skin with moisturizer or apply some to a parent. Turn it into a fun game, like maybe we're going to play red light, green light with putting on cream, or for young kids, we're going to name a body part. So for young children, sometimes finding ways to make it fun or silly or engage them, or even have choices like, getting your creams on is not a choice, but which arm you want to start with first, that can be a choice.
And thinking about understanding how things help us. This is true for children too. So if a child understands that this cream is going to help make my itchies go away, that may be something that they can do.
And, then certainly for some kids, we're going to think about things like reward or incentive programs. And this can be something really simple, like a sticker after they get their moisturizer on.
Another piece that can come out for younger and older children is around sometimes anxiety about the treatment. So that might be using relaxation strategies or distraction strategies during skincare. It also might be, thinking about the supportive statements that we make, like, I know this is hard for you and I know we can come up with a plan to get through it. Or helping kids build those statements themselves like, this is hard, but I've got it. Sort of acknowledging that these things can be difficult. So sometimes that team approach can be helpful. And then also, as kids get older, we think about the logistics. So, helping a teenager plan, when are they going to fit this skin care into their routine, so it doesn't get in the way of other things, for example.
Lynita: Wow. There's some really good advice there. Thank you.
Dr. LeBovidge: And a lot of these strategies, I'll say, are also, taken from families. Like, so much is people's lived experience and what works for them.
Lynita: Yeah. I mean, a lot of it is really logical, but you just don't think about it when you need it. What about needles?
Dr. LeBovidge: Yeah, a lot of the principles are similar, typically starting with why do I need this treatment? And really trying to frame it as something that's going to help the child. So if our brain is treating something as dangerous it's going to increase the pain perception. And this can actually make it feel more uncomfortable for the child. So we really want to think ‘this is my medicine to really help my itch’, so that they understand that this is something that's going to help.
There's a lot of practical strategies we can actually use, for example, numb an area with ice or use a numbing cream prior to a needle to help with some of the pain. Then similarly, there are things like vibrating devices during the injection of the medication itself. And I often talk with kids about what we're doing here is we're sort of blocking or confusing some of the pain messages to the brain. So for example the child is worried about feeling that needle message that goes to the brain, but if we can block some of it with a cool ice message or confuse it with a vibrating message, less of those messages are going to the brain. And often we'll practice in session not with an actual injection, but something maybe I'll use a pen cap on their skin so they can actually see the difference.
And we may also talk about things like distraction strategies that they can use during the injection, whether that is watching a video or playing a thinking game with a parent. Those are all things that can be helpful. And then afterwards, thinking about what worked well, so we can change the narrative from ‘this is something scary’ to ‘I am feeling in control’.
A lot of families talk about afterwards they always do something special. And the child knows that. And certainly I'd say. Most kids, most adults don't love needles so some anxiety is normal. But if you're finding that it's at a point where it's feeling traumatic and you're wondering, is this worth it? That's a time to talk to your child's primary care provider to really think about might my child benefit from meeting with someone like a mental health professional for support to be able to then access those treatments that might be really helpful for their eczema.
Lynita: That's really good advice. One thing I always struggle with whenever we have immunizations is I don't want them to see that I'm feeling nervous because I don't want them to feed off my energy. But then I think you can almost be too blasé and be like, don't be such a fuss. So there's this really fine balance between giving your kid your nervous energy, and just writing off the experience that they're actually having, which is a little bit traumatic for them.
Dr. LeBovidge: Yeah, that is so important in thinking about your role as a caregiver. So kids are really going to take their cues from a parent on how they respond to the situation. So, so some of the advice we often give is thinking about being calm, and sometimes this is fake it till you make it, but being calm and pretty matter of fact. And we don't want to seem blasé about the child's anxiety or the discomfort they may experience. And that's where I think that piece of really acknowledging. “Yeah, I get that this is scary for you, and we're going to use our tools so we feel more in control and comfortable”. Or really giving them a lot of praise afterwards for the coping strategies that worked, so that we're, we're acknowledging it's hard and also our belief in them that they can handle that hard thing and we can get through it.
Lynita: Yes. I like that belief in them…
Dr. LeBovidge: And parents can also find videos of families being interviewed on the wellness hub about how they cope with needles.
Lynita: What about sleep? Does exhale have any advice for parents or kids?
Dr. LeBovidge: Absolutely. Um, Often parents feel a little bit guilty because they feel like they might be doing things with their child in terms of sleep that they wouldn't necessarily do with a child without eczema. And I want to start with saying throw the guilt out the window because you are doing whatever you can do to get your child to sleep when they have eczema. And that's the reality of the situation. And so when I'm working with families on sleep it feels very unrealistic for me to think about let's do sleep training with a child who's itchy and uncomfortable. Um, and so typically we start supporting them in the treatment routine. But the other thing that we can start with from day one is thinking about just building good positive sleep routines. So going to bed and waking up around the same time each night, having a routine that's relaxing and calming. So that might be their bath and skin care, I recognize that may not always be calming, but then time for things like reading a book, singing songs, listening to an audio book or a podcast for an older child, something that is relaxing and those routines start to signal our brain that it's time for sleep and help with that transition from wake time to sleep time.
And so what I often tell families is, if right now you need to be with your child to help them fall asleep, you can still do this routine so that when skin is better, then we can work on strategies if a child's been used to having a parent present to fall asleep or during the night. They may need some help learning to fall asleep independently when their skin is doing better. But starting with positive routines is really important.
And then also things that are good for sleep hygiene generally, but particularly for kids with eczema, thinking about things like having a cool room. About the importance of really good evening skin care.
Christine: So I had a question around the sleep because when my son did get better I then found myself still not getting enough sleep because I was constantly up wondering, Oh my gosh, when is he going to wake up? And all this concern around when the next flare or, or trigger of itch was going to happen. How do you overcome that as a caregiver?
Dr. LeBovidge: I feel like you hit on that key aspect of the uncertainty families often described where skin is under good control, but that there could be a flare around the corner. I think it can be really traumatic to think about those early years, particularly for kids with eczema. And one of the things that I talk with with families is often thinking about the tools and a plan that they have for managing flares. Reality is having to focus on what we can control because there's so much that's not controllable with eczema unfortunately.
Christine: That's a very, very good point. So just having that reassurance that you have the tools to remedy the problems that arise when they do arise.
Lynita: And I should add that these tips and more are all available on the new exhale website. I'm so pleased to share this resource because that's what I desperately wanted when my son was newly diagnosed. I just needed someone to sit down with me and explain how to manage your skin, and what not to do.
Dr. LeBovidge: It's interesting because the piece that's often missing is the time for good education around how things work and the time to really understand where are families struggling, you know? What areas are most impacted by eczema? So that the treatment plans can really address those.
You know if we think about the term shared decision making, ideally what we're thinking about is a partnership between caregivers, and the child too, depending on the child's age, and the medical provider. The medical provider has certain expertise in treatments, outcomes, risks, benefits, and families have certain expertise in their own values, their preferences for treatments, their goals, also just what are they concerned about or what have they tried. What has worked? What hasn't? So often shared decision making is this opportunity to talk through those things so that together you're coming up with a treatment plan that will actually work for your child and your family.
Lynita: And it's so wonderful that parents now have a one-stop shop. To help them play an informed role in shared decision-making. To our listeners, the website is www.gper.org/eczhale, spelled. E C Z H A L E. But thank you very much Dr. LeBovidge and Christine for your time today. And for your time in creating this wonderful resource for families.
Christine: Thank you, Lynita.
Dr. LeBovidge: Thank you so much for having me. This has been a pleasure.
