Transcription:
Ins and Outs of Pediatric EoE

Tricia Williams: Welcome to the Advanced Practice Perspectives. I'm Tricia Williams.

Tobie O'Brien: And I'm Tobie O'Brien. This is a podcast created by advanced practice providers for advanced practice providers. We will be highlighting our amazing APPs here at Children's Mercy and do some education along the way.

Tricia Williams: We are so glad that you're joining us. So sit back, tune-in and let's get started.

Tobie O'Brien: We are so excited to introduce to you all Ashley Ruegsegger. She is a family nurse practitioner in the GI clinic. Thank you so much, Ashley, for joining us today. I will share with you I had asked two of my friends from GI clinic, Tiffany and Christina. I said, "Who should I get to talk about EoE?" And they said, "Ashley." They both wrote me back "Ashley." So we are so excited to talk with you today. Thank you for being on.

Ashley Ruegsegger: Oh, thank you so much for inviting me to be on the podcast. I've been looking forward to it. And I do enjoy talking about EoE, so I think this'll be really fun.

Tricia Williams: Yeah, we are so excited to have you. So welcome onto the podcast, Ashley. I have to tell you Tobie and I both have a love for EoE. We work in otolaryngology and sometimes we see these EoE patients. It's a weird obsession I have with it for not working in GI and working in otolaryngology, I had this obsession with EoE and I think Tobie shared this. She does too. So we're excited about this.

Tobie O'Brien: Same.

Ashley Ruegsegger: That's cool. I think that's great.

Tobie O'Brien: I think it was my little bit of time in aerodigestive, Tricia, that did it for me.

Tricia Williams: Maybe me too. Yeah.

Tobie O'Brien: And then I'm like, "Okay, I got to know more. I got to know more." So anyway. All right. Ashley, tell everyone about yourself.

Ashley Ruegsegger: I'm originally from Arizona and I moved to Kansas in college and I went to a nursing school at MidAmerica Nazarene in Olathe. I really enjoyed my experience there. I got my BSN. And during my final year of nursing school, I realized that I really wanted to work in pediatrics. And I was really blessed to get my final clinical rotation internship at Children's Mercy. And I love that experience and, ultimately, led to me getting a position as a new-grad nurse here at Children's Mercy. And I was on what was originally 3 Henson and became 5 Henson Hall. I really enjoyed working there taking care of med-surg patients and just a variety of conditions that we had on that floor.

And then I went back to school at UMKC and I got my MSN as a family nurse practitioner. And at that time, I truly didn't know where I was going to go with that degree. There was a need in the GI department, particularly a need for a nurse practitioner to work with the EoE program. And at that time, to be honest, I didn't know a lot about EoE, a lot of people don't. But I'm really thankful that I was led in that direction because I've just really come to love these patients. I love my patient population and really love the team of people in GI, the providers. It's been a great career for me so far.

So, outside of work, I have three little ones at home, that definitely keep me busy. We have a four-year-old, a three-year-old and an 11-month-old. Lots of activity, lots of noise at our house, but they're truly such a blessing and so much fun at this age. So that's what's going on outside of work.

Tricia Williams: Wow. Tell us more about the GI clinic. I know that that was your first role as an advanced practice provider. So like give us a low down about GI, which is gastrointestinal for those that don't know the lingo, like how many APPs are there, do you guys each function in different clinics kind of tell us the low down.

Ashley Ruegsegger: GI is GI and liver care altogether. We have I think a really fantastic group of nurse practitioners. We have three APRNs that work on the inpatient side, taking care of kiddos in the hospital. And we have 14 APRNs that work in the clinic.

And we do have subspecialty roles within our department. For example, there is the liver team. There is what we call the BRICK Clinic, which is our functional constipation program. We have the feeding team, which is a wonderful, you know, multidisciplinary team. We have EoE, motility, IBD, and then we have intestinal rehab.

So it's a pretty big group. And the advanced practice providers are a wonderful team. There's lots of communication between the nurse practitioners and just lots of support, which I really appreciate.

Tobie O'Brien: Absolutely. It is nice to work with a large group and have everyone support each other. That is how we are in the ENT clinic as well. So tell us more about your specific role within GI.

Ashley Ruegsegger: I primarily work with our EoE patients, together with my physician partner. We take care of the majority of the patients with EoE within GI. I see patients when they're newly diagnosed with EoE. And at those types of visits, I'll sit down with the family in clinic and we'll discuss the diagnosis, what it means, what are the treatment options, coming up with a plan of care for them. And then following patients up in clinic because EoE is a lifelong condition. They do need long-term care and follow up and adjusting of their treatment plans. So I enjoy that aspect of being able to see my patients back over time and kind of help them through this.

I'm also part of the BRICK clinic. So seeing kiddos with functional constipation and encopresis, that’s a really terrific program because that's a really difficult problem for those kiddos and just again, having time to sit down with them and talk about what's going on and, you know, really take the time to work with them through that. And I also just see a variety of general GI conditions in the clinic, which I really enjoy. So my role is just primarily outpatient clinic.

Tricia Williams: Sounds like you do a lot of different things. But since Tobie and I have this infatuation for EoE, which stands for, I'm going to try to say it correctly, eosinophilic esophagitis. That has such a fun name.

Ashley Ruegsegger: There's a reason we shorten it to EoE.

Tricia Williams: But it makes us sound very smart, right? Eosinophilic esophagitis. Can you give us a better understanding on kind of what's going on with children with EoE, some educational tidbits for our learners, those types of things?

Ashley Ruegsegger: EOE is a chronic condition. It's an inflammatory/allergic disease, that is characterized by esophageal dysfunction and that can present in a variety of different ways. It is related to a reaction to food proteins, which causes increased eosinophils in the esophagus. The eosinophils release their inflammatory chemicals, and then you get ongoing inflammation.

And with time as that inflammation goes on, you can get fibrosis in the esophagus, which is sort of like a thickening of the tissue in the lining of the esophagus, or kind of like you think of scar tissue, which can lead to narrowing and eventually strictures. These kids can end up with pretty severe trouble swallowing their food and even food getting stuck in their esophagus.

So like I said, it can present in a variety of different ways, particularly depending on the age of the kiddo. In the younger kids like toddlers, even in infants, we'll often see failure to thrive, feeding refusal, oral aversions. In a little bit bigger kids, you can see chronic vomiting, even chronic abdominal pain. And then the older kids and teenagers, it often presents more as like acid reflux-type symptoms, heartburn, regurgitation, definitely dysphagia or feeling of their food getting stuck or true food impactions.

Tricia Williams: That's where I think we kind of share those patients, right? Like we get referrals for globus, which is the feeling of something is stuck in their throat or dysphagia, if you're fancy. And they're teenagers, right? So it's like, "Why are they having this dysphagia? Why do they have reflux?" And then I'm thinking, "Oh my gosh, do they have EOE?"

And I also heard a theory that it's like white males are more statistically, I don't know, susceptible to this, is that correct? So if it's like a white teenage male and I'm like, "Ooh, I bet you have EoE." So then I forget to follow up and find that they ever do, but I always refer them for that.

Ashley Ruegsegger: Yeah. That would definitely be a good suspicion for seeing a patient like that. And it's interesting also to see just what a wide variety of symptoms these patients can present with. But definitely in those teenagers and older kids, a lot of them have, you know, pretty significant trouble swallowing and sometimes it can be years before they seek an evaluation for it.

Tobie O'Brien: Sure. That makes sense. Those are a lot of presenting symptoms, because that could be multiple things going on, not just EoE. So how do you guys come up with the final diagnosis? How is it confirmed, through biopsy?

Ashley Ruegsegger: Yes. Truly the gold standard for diagnosis is getting an upper endoscopy and getting those biopsies of the esophagus. It's important to do that so the pathologist can look at the tissue and look for eosinophils, see if they're present and then, you know, how many are there? That's important because the diagnostic criteria does discuss a certain number, which is greater than 15 eosinophils per high-power field in the esophagus to be diagnosed with EoE, although not everybody falls in this textbook guidelines, but it is very helpful to see that.

Also getting those biopsies and knowing the eosinophil counts is important because that's how we follow your treatment. To know how effective is your current treatment, we can compare your eosinophil counts on whatever your diet or medication that you're on compared to your previous scope.

There are visual changes that you can see with EoE when you get an upper endoscopy such as rings in the esophagus or lines, which we call linear furrowing or even white plaques. Other things you can see are something like on upper GI x-ray, you can see a small caliber to the esophagus or an area of narrowing in the esophagus. But truly, you do need those biopsies of the esophagus to know for sure that it's EoE.

Tobie O'Brien: Do we know why teenagers would be diagnosed later. I always am curious about this, even with food allergies. Like why now? Why are they all of a sudden starting to have issues? Do they think it is probably just a particular food that set them off? Or do we know why it would be diagnosed at different times or presenting at different times in life?

Ashley Ruegsegger: That's a good question. And we don't truly know why this disease can pop up at a variety of ages. Some people are even diagnosed later in adulthood. There's definitely a lot of research being done on the genetics behind EoE, a person's genetic potential for it and what might trigger it to develop at different points. But as for right now, we don't truly know why it may pop up later for one child compared to another who's presenting with it at only 12 months old, for example.

Tricia Williams: Interesting. I didn't even think about a genetic component that could play a part in it, but that makes total sense. That's fascinating.

Ashley Ruegsegger: Yeah, there definitely is a genetic component to it. There's often a family history. Very often I'll hear patients say, "Well, I have a grandparent or a parent who's always had trouble swallowing and has had to go to the emergency room a couple of times because they were eating steak and developed a food impaction, but they've never gotten a diagnosis." Very frequently our patients will have a positive family history, not always, but...

Tricia Williams: You know how we heard about like the allergic march when we were in school and about how you have reactive airway as an infant, and then you have allergies and you have asthma. Do you think that allergic march plays a part if you're going to get diagnosed with EOE in the future?

Ashley Ruegsegger: We do think that can definitely be a part of it. That's come up more discussion recently as well, because more recently we're seeing patients who have developed EoE after they have started oral immunotherapy, say for a food allergy, like peanuts or tree nuts. And that's been a really interesting thing to think about, you know, was this caused by this oral immunotherapy? Or was this just part of the atopic march that they have food allergies they've developed and naturally their next step was going to be that they were going to develop EoE. And a lot of that we can't really say for sure,

Tobie O'Brien: What is the treatment options for these kiddos?

Ashley Ruegsegger: When we see a child who's been diagnosed with EoE, really the first decision is are they going to be treated with diet or are they going to be treated with medications? And this is a conversation that we need to have with the patient and with the parents, because there's a lot of factors that play into this.

I really believe in shared decision-making. So I like to see my role as providing information to the families and options and discussing pros and cons. And I really want the patient and the family to decide what treatment option is going to work best for them. And also what's going to work best for them at their current stage in life.

So starting with elimination diets, that's usually what people think of when they think of EoE. There's several benefits to using elimination diets. If you can successfully figure out what your trigger food or foods are, you can keep your EoE in remission going forward in life and you potentially might not need medications long-term, which is great, and can potentially avoid medication side effects.

But there are difficulties with elimination diets. We currently don't have a very accurate test to help patients identify what foods they're reacting to. So we have to use some educated guesswork based on studies that have been done for EoE showing what the most common foods are. And we use that information to help the patients start their elimination diet, because we feel like it will give them the best odds of figuring out their trigger foods.

It does require frequent endoscopies upfront because we do need to repeat an EGD after eliminating foods and then after re-introducing foods to evaluate what's working and what isn't. Another barrier with diets is they can be expensive. As a lot of us see, when you're grocery shopping, specialty foods like gluten-free, dairy-free, egg-free are a lot more expensive than what you would say the standard product would be. So that can be a barrier to care for some families.

Tricia Williams: It makes me think about what we're going through now in this pandemic in the current times, and there's a ton of food insecurities and things like that. Have you seen an increased number of like acute exacerbation of symptoms? Or this time due to food insecurities, kiddos not being able to stay away from their trigger foods?

Ashley Ruegsegger: I have seen some kids who have developed some I would say worsening anxiety. Kids who have EoE are on a very extensive elimination diet. During the pandemic, it's been harder for their family to obtain all those specialty foods and those children are feeling more concerned about how much access they're going to have to their safe foods.

And I've also seen some families opt to change their child's EoE treatment during the pandemic, because of that same reason, it's harder for them to be able to afford or get access to all their specialty foods. So during that time, they've opted to change their child to utilizing medications as their primary treatment. So it definitely has affected these families.

Tricia Williams: Because insurance would pay for the medication, but not the diet.

Ashley Ruegsegger: Yep.

Tricia Williams: Wow.

Ashley Ruegsegger: And we do often refer our patients to the Food Equality Initiative. They are really wonderful local organization that helps families specifically with the financial burden of having food allergies. If you look them up, they have wonderful resources on their website.

And then another thing to take into mind with the elimination diets are just the social and emotional concerns for kids. Food is a very social thing and it can be really difficult depending on the age and the personality of the child to not be able to eat the same thing that their peers are eating or not be able to have a slice of the cake at the birthday party that they're going to. So all these factors we have to keep in mind when deciding on a treatment plan for the kiddo.

Tricia Williams: I do have I think one additional question because, you know, my infatuation with this, I think every patient that I have that comes in with dysphagia has EoE. However, with saying that, what is the actual prevalence of EoE?

Tobie O'Brien: Great question.

Tricia Williams: I mean, just a ballpark, if you don't have the exact numbers if don't have the exact numbers off the top of your head. Because like, we have a couple of diagnoses in ENT that everybody's like, "Oh, it's this. And we're like, "Man, that's really like 0.3% of the population or 3% of the population." Is EoE common, uncommon?

Ashley Ruegsegger: What we've learned -- again this is not super recent -- that the prevalence is approximately one in 10,000. But again, that number was given in papers that were published about EoE in 2003, again in 2007 and 2011. They do feel like it's increasing in the population, but again, is it truly increasing or is it just becoming more recognized? Is there better awareness of the disease and we're better able to give it a name rather than, you know, "My parents always had trouble swallowing" or not truly identifying it in the past?

It's truly sort of a newer disease and wasn't really completely identified until the 1990s. And then as I said, a lot of the diagnostic papers were published in the early 2000s and then in 2011. And then, even fairly recently in 2018, our diagnostic guidelines changed pretty significantly. The way we diagnose EoE is evolving and the treatment options are also evolving. There's a lot of research being done on better ways that we can diagnose and monitor EoE rather than having kids go through an EGD with sedation three, four times a year. There's a lot of cost and some risk associated with that.

So again, there's a lot of research being done and I'm hoping that there's going to be more cost-effective and less risk associated with different tests and ways to monitor this in the future and also more treatment options.

Tricia Williams: That's fantastic. So it sounds like it is uncommon, but maybe not. We don't know. Stay tuned for the research.

Tobie O'Brien: Thank you so much for sharing your expertise on all of this EoE topic. We really appreciate it and it has filled that sort of need to know for Tricia and I, so thanks for doing that. We like to end each podcast, especially in 2021, on the same question. So we want to know if you could go back to when you graduated as a nurse practitioner, so one year after that, what advice would you give yourself now that you're so many years out? What would you go back and tell your young self?

Ashley Ruegsegger: I feel like maybe other people have had a similar response, but the more I thought about this question, I think the best advice I could give to myself is just to continue to ask a lot of questions. I feel like the physicians and the nurse practitioners in our department all come from a variety of backgrounds and trainings and experiences with all these different types of patients. And it's so wonderful to be able to ask questions and just kind of gather all these pearls of knowledge from people who have so much experience to share. And that's one of the things I really enjoyed starting out as a new nurse practitioner in GI, was just being able to learn from all these different providers and the different things that they've learned throughout their career so far.

Tricia Williams: It's a great piece of advice. Thank you so much for that, Ashley. And thank you so much for joining us today. It's been an enlightening experience and you've kind of itched my curiosity on EoE that I find fascinating. And listeners, thanks for tuning in today. It's been a great episode. Our next episode will feature Kelly Trowbridge, a social worker, and Dr. Jennifer Bickel. Well, we will be chatting with them on about professional well-being. So stay tuned for that episode.

Tobie O'Brien: Yes. And if you have a topic that you would like to hear about, or if you would be interested in joining us to be a guest, we would love to have you. So email us at tdobrien@cmh.edu or twilliams@cmh.edu. And once again, thank you so much to Ashley and thank you to the listeners for listening to Advanced Practice Perspectives podcast.