Introduction

Joshua Schechtel: Hello and welcome to the Clinical Care Options Medical Specialties podcast. I am your host, Joshua Schechtel. Today's episode features a conversation between Yvette Whaley, who is a parent of children with atopic dermatitis, and Katie Smiley, a physician associate at Rady Children's Hospital in San Diego, California. They are talking about how we can better address the care of children with atopic dermatitis. For more information on Katie Smiley and Yvette Whaley, along with a link to more resources, please visit the show notes for this episode. Now, let us get started and hear what the experts have to say about this important topic.

Yvette Whaley: Before my son received his diagnosis for atopic dermatitis, we noticed a change in his skin. Just so you know, his diagnosis was received around six months. We noticed his skin as much as we moisturized it, he was still visibly irritated. He would sit in his infant seat, I remember, and he would just move his back from left to right, just swaying as if he was trying to scratch his back. At the time, we did not know it.

He also was very irritable. He cried a lot. We would take him to the doctor to see if he had some form of acid reflux or if there was something we were missing. The pediatrician said, everything checked out, all of his functions at six months seemed to be where they needed to be, and he was an exclusively breastfed child.

In that time, the doctor noticed that there was definitely something going on with him because he had this red hue under his skin. We are an African American family, but his skin was very brightly irritated. The best way for me to describe is almost like somebody took a red lamp and place it under his skin, but you could tell something was very irritable to him. Typically, the doctor said she would not run allergy tests at that age, but she did. She also said he had some irritants from foods in addition to the eczema. We could tell he was highly irritated by the eczema.

Katie Smiley (Rady Children's Hospital): When I am speaking to patients, how I explain the diagnosis of atopic dermatitis, I often will use eczema just because that is typically a more common phrase that people know. I explain it as, it is a chronic inflammatory skin condition that causes red, itchy patches on the skin, typically in some characteristic areas. It is a result of two main processes. One is a skin barrier dysfunction, and two, there is some immune dysregulation.

The reason that we have eczema, the cause of eczema, is a little confusing even to providers, but it is a combination of both genetic and environmental factors. Genetically, we see eczema oftentimes in families that have other similar allergic conditions. Eczema typically exists in patients and in families with food allergy, allergic rhinitis, and asthma.

We call that the atopic triad or atopic march. Not every patient reads a textbook. It is not a life sentence that if your child has eczema, that they are absolutely going to develop food allergy, allergic rhinitis, or seasonal allergies, or asthma. We just tend to see eczema develop in patients that also have those conditions, and they might potentially go on to develop those too, or if mom, dad siblings also have that.

Genetically, it is actually pretty funny why we have eczema. Eczema is an immune dysregulation in part of our immune system that we call a type 2 immune system. Ancestrally, in the caveman days, our type 2 immune system was important for parasites. We, in America, live in a first-world country, so we really do not encounter parasites very often, but some patients have this really highly functional type 2 immune system. If we were in a third-world country and there was lots of parasites around and dirty drinking water, things like that, that immune system would be very active. Except we live in America, where we do not really encounter those parasites, and so these patients have a really highly effective type 2 immune system that just sits there and says, okay, I do not see parasites, but what else can I do? Then we would go on to develop allergies, eczema, food allergy and so on and so forth.

Eczema is a chronic condition, as I mentioned, and we do not have a cure, but we do have lots of treatments. We are becoming and developing more and more treatments as the years progress, which is exciting, but there is no cure, so it is important to be able to recognize what flares, things that trigger eczema. Sometimes we cannot necessarily pinpoint it, but eczema can flare. Then we also have medications and treatments that we have when eczema is good or how we maintain clear skin.

When I am evaluating patients, especially the first visit, when they come and see me, how do I evaluate their impact of the disease on both the patient and the caregiver is a twofold approach. One, obviously, you need to get the objective assessment. Entirely looking at all of the skin, evaluating that. In our clinics, we will oftentimes do EASI score, the Eczema Area and Severity Index.

It takes a little bit of time, like five to 10 minutes, but it is a really good, comprehensive score that tells us how bad and how diffuse their eczema is. In every single eczema patient, if I have a little bit less time, I will always do a body surface area evaluation, or a BSA, and I always do investigator global assessment, or IGA score. Those are both very quickly done, and you can do it in a couple of minutes. As you see them at follow-up visits, you can really track how well they are doing with treatment success and treatment failure and things like that.

Then, honestly, the more important part of eczema is assessing how it affects the patient subjectively. Most of these patients are kids. We ask the patient as well as the caregiver questions because, as we know, eczema has an impressive impact on their quality of life. I always ask about how was their sleep? How are they doing emotionally? Oftentimes, I ask them how they feel about their skin because, depending on the patient's age, a lot of times they spend an enormous amount of time thinking about their skin. Asking those open-ended questions invites them in and to get a sense of how much this actually does affect them.

Then lastly, I always ask them how their eczema impacts the activities they love to do. For instance, are they not able to play the sport that they really want to play because they know if they jump in the pool that their eczema is going to get worse? It is a nice question to ask at the very beginning, when you first meet them, and use that as a goal for treatment success. Okay, if we can get your eczema so well controlled that you can get back in the pool and swim or play the sport you want to play, or join the debate team because you are no longer self-conscious of your skin, that is, I think, really true success.

Yvette Whaley: This is going to sound strange, but I felt relief because it had a name going those number of weeks knowing that my child, something was irritating him and not knowing what it was. To me and my husband, once we found out that it had a name, we figured that was a way to care for it and a way to help him, knowing that there are things that we could do to help him was a relief to me as a parent.

From that point, we were able to start applying the methods and the techniques, and the medications that the healthcare team was giving us to provide him some relief. I was relieved to find out that it had a name and that it was treatable. It was not something that was uncurable or something that could not be treated at all.

The best way for me to communicate with my healthcare team, to let them know how bad my child's symptoms are, is I like to take pictures and videos. They say pictures are worth a thousand words, and I think they are. I feel like videos are worth even more. I like to show them this was on Monday and this is the following Monday, or this is the following Monday, to show them the timeline of how that area may be progressing or not progressing.

Also, I think the videos are powerful because it helps show the healthcare team, they can see the problem as well as how it is impacting my child. They can see how the child is responding. How the child, emotionally how they feel, how bad, are they irritated by it?

Sometimes I would just video my child sitting there for two or three minutes doing their regular kid thing, and just to see how many times they may attack that particular area, that itchy spot, or that skin area that is very dry. I feel like pictures and videos are the most effective way for me to communicate with my healthcare provider. Also, using the portal that is provided by the healthcare team.

Katie Smiley: When speaking to patients and caregivers about eczema treatments and the path forward, it is really important to focus on informed, shared decision-making. Shared decision-making is obviously a very popular key word, but I really emphasize the informed aspect of it. Knowing and educating patients about what causes their eczema, what we know causes eczema and also things that we do not know, that does not necessarily cause their eczema, as well as treatment options that we have available to us, both topical and systemic options.

We spend a lot of time in our clinics just educating. Oftentimes, the first visit I spend like 20, 30 minutes, as long as I have time, really just educating the patients about what eczema is, what treatments are available, even if it is not necessarily treatments that I am going to be choosing or recommending to them just yet. It is always, I think, important for them to know the landscape of the options that we do have. I talk a lot about toolkits, having medications that we can use for when things are flaring and when things are in maintenance.

I think letting the patients have that education behind why we choose and recommend medications and why we choose and recommend non-therapeutic options as well, really helps have the ability to choose what is best for their lifestyle. I oftentimes will emphasize that it is a chronic disease. A lot of times, patients will settle, like, oh, I am a little bit better. I think setting realistic expectations, but also pushing them as well as pushing us, as providers, to be better and have a clearer skin.

Then asking open-ended questions and discussing all the treatment options, just leaving that eventual final decision to the patient and caregiver, really puts them in the driver's seat. I always say, I am here to recommend treatments and eventually prescribe, of course, but at the end of the day, we want to pick treatments that is going to work best for that patient and that family.

Yvette Whaley: I like the fact that some of the treatments provided relief for my child. I love it when things work as planned, based on the research or what the doctor has been told about this particular medication. What I do not like is when the medications do not work, or if the medication I feel is being overprescribed, I have had times where my son's skin I say it melted away. The whole topical layer of the skin just pretty much disappeared, and you could just tell it was just irritated, whatever the layer is below the dermatitis. The layer of the skin, it was just very sensitive it was sensitive to even just cool water touching it. I do not like it when I feel like they were overprescribed.

About the treatments, what I do like about the treatments for my child's eczema is when they provide relief when my child looks forward to it. My oldest is 10. He knows what to expect; the long baths, getting out immediately, being moisturized, and he wants to be part of the process. The areas that are not affected at that time by the eczema, he enjoys putting the emollient on his skin to help lock in that moisture. We talk through it. He loves science. He loves math. We can go to a more scientific level of why your skin needs X, Y, and Z.

Katie Smiley: Oftentimes, I see patients who come into my office, and they will be on a fairly complicated regimen. I appreciate how much time it does take to take care of kids with eczema. My job is to hopefully try to make it as simple as it can be.

In my instructions when they go home, I will try to simplify their routine. I will designate, okay, these medications are topical steroids. These are what we are going to use for our acute flares. Then we have these medications that I am going to recommend that are non-steroidal options. This is what we use for maintenance. I lay out why we use medications for what reason.

Then I try to keep it to just - I always say, hopefully a max of three topical medications because I think anything past that is way too difficult. It is something for the face, something for the body, and ideally something that we are using as maintenance that we can use on both areas.

Trying to be as clear, I like bold medications, bold how frequent I can use it, and things like that just to make it as clear and legible as I can. Also, I think there is a really important use of just frequent check-ins. We have access with patient messages with our electronic medical record. I always encourage patients to send me pictures, send me messages if things are not going well. I also always ask if there really are going well, I would love to see those photos too.

I oftentimes will get the oh my gosh, we are flaring, what do I do? I will tell patients that eczema is a journey. Like I mentioned, it is a chronic disease. There is no cure. I am on this journey with the patient and with the caregiver. If they ever need assistance or help, they do not necessarily need to make an appointment to ask me, okay, do I put on this medication or that medication for this area of the skin?

I always just encourage them to reach out because I just want to have an open communication with them. Then we will do frequent actual visits to see how things are going. The first time I see a patient, I will typically see them in a month to see how things are going, and hopefully as things get better and improve, we spread that out.

Then of course, if there is situations where this patients need referrals, I work in allergy, so I do see eczema kids, and we will do food allergy testing and seasonal allergy testing, and things like that. I previously worked in dermatology, and so I always would have a very low threshold to refer to my allergy colleagues when I was in dermatology, just so we can get that more comprehensive evaluation. I will follow that up when you do refer, trying to simplify the routine, and have a cohesive routine between two specialties is also very important as well.

Yvette Whaley: We would stopped using the injectable medication due to the amount of trauma it was causing my child. He is 10 now. He started the injectable when he was around six. He would receive the injectable every 28 days. That was after the first dose, which was two doses. We did that consistently for at least three years. As we entered the third year, our 28 days, to be honest, they start stretching out further and further.

Each time we gave my son the injectable, it was a household event. He knew that the day was coming because he knew 28 days, that was exactly four weeks. Wednesday was the day. He knew in four more Wednesdays he would have to go through this again, so he would be like, okay, it is not this week, it is next week. He would cry and cry.

We tried other techniques, such as the topical, I think it was lidocaine. We would put on the area and hopefully that it would numb him following the instructions that we were given, and he would still have the same trauma. We started out with the pen. Then, after the pen, we moved to the syringe. Both were very painful for him. The idea of moving from the pen when you do the injectable, the pen, it is that waiting period, he would watch that little yellow window expire, and it was just painful for him. He would just scream and scream. His older and his younger sibling both want to come running to the room and like, what is wrong? It was a lot of emotions, and he would be traumatized. He would cry for at least 30 minutes after the injectable.

Katie Smiley: For patients and caregivers, the recommendations they have to address their atopic dermatitis is one, I always say moisturizer is medicine. Regardless of what medications we are on or what non-therapeutic medication treatments that we are on, moisturizer is medicine. All of the topical medications do not moisturize the skin. All of the biologic medications or systemic medications also do not moisturize the skin. Really paramount is moisturizing the skin with those thick moisturizing creams and emollients to help protect that skin barrier.

I also recommend avoiding triggers if we know what triggers cause or tend to have flares. Obviously, sometimes we can pinpoint what caused that flare. I would say most time, and I will tell caregivers this, most of the time we have no idea what caused the flare, but if we do know if it is an allergen or if it is a detergent or a perfume or something like that, trying to avoid that as best as we can.

We talked a lot about gentle skincare, of course, so no fragrances. Fragrance-free things often refer to the little lowercase e from the National Eczema Association that is printed on a lot of products, because a lot of times we will get questions about, well, what do I use? I tend to not refer to specific brands, but I will just say look for the little e, and that will be that will be safe.

Then as I mentioned, eczema is a really is a chronic disease. I think a lot of times caregivers get disappointed, but just reminding them that this is a long-term journey we are on. We have a lot of medications that we can use, and also some non-therapeutic options as well. We will eventually get there. Sometimes it is a little bit of trial and error, but we will get there.

Like I mentioned earlier, we have a toolkit and we have medications that we use when things are flaring. We have medications that you can use when things are in maintenance. My goal is to hopefully help patients use more medications for maintenance when their skin is clear and less medications because we are flaring less.

In that same hand, a lot of times with chronic diseases, people will settle and say, oh, I am using this treatment, and I am better, but they are still having flares, they are still having sleep disturbances, they are still having an effect on their quality of life. I also take onus on myself as like the provider, but also turning it back to the patient and - together, I am like, we can do better.

My goal for you is to have clear skin and not have to think about your skin. There might be a few flares that come and go, but I do not want frequent flares. If things are not working well, even though they are better, that is not what I consider treatment success.

Obviously, if a patient's like, no, I am good, I am happy, I am not going to push it. If there is still some room for improvement, I always say, let us talk about other options, we can try other things.

Yvette Whaley: The advice I have for other people caring for children with eczema is talk to your child. See how they are feeling. I would definitely say in my opinion, the emotional health of the child is just as important as their skin health. I talk to my children, even my youngest, who is four, who also suffers from eczema. She will say, mommy, I am itchy. I try to tell her, let us not scratch. Let us apply the - we do cool patches here or frozen green beans, sweet peas we place on the area to cool the skin down. She understands that cooling sensation does help stop the eczema from being so active. Also, she understands the baths. I keep the constant communication based on their age. Talking to the child.

I would say, also have a good relationship with your care team. Make your doctor a part of your family. Make the doctor part of your friend. Do not make them an outsider. Embrace the situation with the doctor. The doctor and the care provider has definitely seen other people with eczema. Explain your story to them. Yes, make the best of those, whatever 10 or 20 minutes you get with their care provider, and keep constant communication.

Do not let it just be a once a year or once every six month check in. Send them a message every other month, or send them pictures, or say, hey, I noticed this is working for my child. Can we note this in their file? I know as a parent, I know I keep medical notebooks for each one of my kids, and maybe by year, whatever they experienced that year, something that we could go back and reference.

In my case, it came in handy after I had - my kids are - my two with the eczema are six years apart. I said, okay, I remember when he was this age, this is what we did, and it has helped me with some of the processing with my youngest. Keeping that document will help you. It will also help when you are not around. You may have another care provider available who is caring for that child. That way it is like an instruction book for that child.

Also, find out other resources in your area with people who may have eczema. You may be able to be a support for them, or you can find more support for yourself. Maybe speak to your care team to see if there are any eczema studies or eczema research programs, if you are interested in, that you could be a part of to help. Hopefully, one day there will be a cure for all things eczema, and our children will not have to go through some of the things that they are going for.

One last piece of advice that I have for people caring for children with eczema is also make sure you take care of yourself. It can be very taxing, heavy burden to lift and taking care of your children and seeing the impacts of what eczema is doing to them, caring for them emotionally as well as physically.

Joshua Schechtel: Thank you, Katie and Yvette. Many thanks to you, our listeners, for joining us. As a reminder, to view additional resources, please check the link in the show notes and be sure to check back regularly for more episodes on important medical specialty topics.