WEBVTT - Raising Kids with EoE 0:00:04.370 --> 0:00:04.790 Ruby. 0:00:06.820 --> 0:00:09.799 She was sick. She felt fragile. You know, she's this 0:00:09.860 --> 0:00:13.760 tiny little human. She's one years old and she can't 0:00:13.840 --> 0:00:17.590 eat comfortably. It just felt deflating is maybe the best 0:00:17.640 --> 0:00:18.580 way I could describe it. 0:00:21.550 --> 0:00:24.870 This is Eating Interrupted, where we dig into the real 0:00:24.930 --> 0:00:28.590 stories in science behind how the simple act of swallowing 0:00:28.730 --> 0:00:32.670 food can impact you. From the very first bite, to 0:00:32.710 --> 0:00:36.550 the complex journey that follows. I'm your host, Cynthia McFadden. 0:00:37.040 --> 0:00:43.150 This episode is brought to you by Sanofi and Regeneron, Dupixent, Dupilumab, 0:00:43.670 --> 0:00:46.809 is a prescription medicine used to treat adults and children 0:00:46.990 --> 0:00:52.530 one year of age and older with eosinophilic esophagitis, EOE, 0:00:53.020 --> 0:00:57.340 who weigh at least 33 pounds or 15 kilograms. It 0:00:57.440 --> 0:01:00.180 is not known if dupixin is safe and effective in 0:01:00.220 --> 0:01:03.160 children with EOE under one year of age or who 0:01:03.220 --> 0:01:07.860 weigh less than 33 pounds, 15 kilograms. Do not use 0:01:07.920 --> 0:01:11.039 if you're allergic to dupilumab or to any of the 0:01:11.080 --> 0:01:16.070 ingredients in dupixin. Please stay tuned for full Dupixent important 0:01:16.150 --> 0:01:21.290 safety information and go to full prescribing information, including patient information, 0:01:21.650 --> 0:01:36.130 at bit.ly slash dupixentpi or visit dupixent.com slash eoe. Hi, everyone. 0:01:36.170 --> 0:01:40.480 Welcome back to another episode of Eating Interrupted. If you 0:01:40.500 --> 0:01:43.620 tuned in before, you'll know we learned all about EOE, 0:01:44.170 --> 0:01:47.190 what it is, how it can affect mealtimes, and just 0:01:47.290 --> 0:01:50.490 how important it is to find the appropriate care and 0:01:50.530 --> 0:01:53.430 treatment options so mealtime doesn't have to be a source 0:01:53.450 --> 0:01:57.470 of uncertainty. And for this episode, we're continuing our deep 0:01:57.550 --> 0:02:00.490 dive into this condition by focusing on a topic that's 0:02:00.590 --> 0:02:05.420 incredibly important for so many families, raising kids with EOE. 0:02:06.140 --> 0:02:09.280 Because when it comes to children, the challenges can look 0:02:09.340 --> 0:02:12.590 a little different, and sometimes they can be even harder 0:02:12.620 --> 0:02:16.109 to recognize. Today, I'm joined by two guests who bring 0:02:16.150 --> 0:02:21.030 both personal and clinical perspectives to this conversation. But before 0:02:21.070 --> 0:02:24.210 we get started, just one quick note. Our guest's position 0:02:24.250 --> 0:02:28.180 today is a paid partner of Regeneron and Sanofi, and 0:02:28.250 --> 0:02:32.040 our main guest is a paid caregiver ambassador, also with 0:02:32.120 --> 0:02:33.780 Regeneron and Sanofi. 0:02:34.600 --> 0:02:34.859 All right. 0:02:35.290 --> 0:02:41.410 Let's dive in. First up, I'm joined by Dr. Josh 0:02:41.570 --> 0:02:46.480 Wexler of Northwestern University's Feinberg School of Medicine. He's a 0:02:46.620 --> 0:02:52.320 recognized leader in the care and research of eosinophilic gastrointestinal disorders, 0:02:52.480 --> 0:02:57.820 including pediatric EOE. Well, let me start by saying thanks 0:02:57.880 --> 0:02:59.959 for joining us on the podcast today, Dr. 0:03:00.000 --> 0:03:00.380 Wexler. 0:03:00.400 --> 0:03:01.280 Great to talk to you. 0:03:01.700 --> 0:03:03.540 Yeah, truly an honor to be here and get to 0:03:03.580 --> 0:03:04.440 discuss this with you. 0:03:05.550 --> 0:03:07.630 So tell us a little bit about the work you 0:03:07.650 --> 0:03:11.170 do with EOE with pediatric patients. Yeah. 0:03:11.270 --> 0:03:14.350 So I'm a pediatric gastroenterologist. I take care of kids 0:03:14.410 --> 0:03:17.690 of all ages from age one, you know, even young 0:03:17.730 --> 0:03:20.549 adults as old as in their early 20s. And that's 0:03:20.590 --> 0:03:23.960 because eosinophilic esophagitis really impacts all ages. 0:03:24.639 --> 0:03:26.940 And I'm truly passionate about what I do. 0:03:27.220 --> 0:03:30.180 And having the ability to work with kids and really 0:03:30.240 --> 0:03:33.230 have a deep understanding of this disease is how it 0:03:33.290 --> 0:03:35.750 impacts them and how I can really help them. It's 0:03:35.770 --> 0:03:38.180 just so motivating for me. And I really, really love 0:03:38.190 --> 0:03:38.570 what I do. 0:03:39.160 --> 0:03:42.600 So how does EOE present differently in children as young 0:03:42.640 --> 0:03:45.560 as a year old versus adults? And how do those 0:03:45.680 --> 0:03:49.340 early symptoms vary in the early ages? 0:03:50.120 --> 0:03:50.480 Yeah. 0:03:50.760 --> 0:03:54.140 And this can get very confusing. But with toddlers, it's 0:03:54.200 --> 0:03:58.620 oftentimes very nonspecific. You can have things like refusing to eat. 0:03:58.720 --> 0:04:03.320 You can have irritability, choking. Or even just vomiting. And 0:04:03.340 --> 0:04:05.520 it's not always vomiting every single day. It can be 0:04:05.560 --> 0:04:08.600 vomiting maybe every few days or even a couple times 0:04:08.660 --> 0:04:09.060 a month. 0:04:09.460 --> 0:04:10.559 You can have poor growth. 0:04:10.750 --> 0:04:13.369 Maybe the major thing is the parent notices the kid's 0:04:13.430 --> 0:04:16.370 really just not gaining weight or even maintaining their weight. 0:04:16.910 --> 0:04:19.930 When it comes to school-age children, a lot of times 0:04:20.010 --> 0:04:22.930 that vomiting and gagging now starts to show up where 0:04:22.970 --> 0:04:25.610 maybe it's a little bit more obvious. But you also 0:04:25.670 --> 0:04:28.640 see symptoms like reflux, or sometimes they just say their 0:04:28.680 --> 0:04:31.360 stomach hurts, and that may be actually some of the 0:04:31.400 --> 0:04:32.260 heartburn they're having. 0:04:32.580 --> 0:04:35.660 With adolescents, it tends to be more adult-like symptoms. 0:04:35.700 --> 0:04:38.960 So things like difficulty swallowing, feeling like the food's going 0:04:39.000 --> 0:04:41.890 down slowly, feeling like it gets stuck. You know, or 0:04:42.010 --> 0:04:45.670 even just sometimes a non-typical presentation, more of that heartburn 0:04:45.710 --> 0:04:49.039 acid reflux type thing. One of the challenges is that 0:04:49.180 --> 0:04:52.159 EOE symptoms can look like other conditions, such as food 0:04:52.240 --> 0:04:56.160 allergies or GERD. This makes diagnosis challenging and can lead 0:04:56.200 --> 0:04:57.110 to treatment delays. 0:04:58.010 --> 0:05:02.330 So why is EOE sometimes missed in children? 0:05:03.170 --> 0:05:05.570 I think picky eating is the easiest one for me 0:05:05.610 --> 0:05:07.800 to really hone in on. And where pickiness has a 0:05:07.820 --> 0:05:11.500 clear pattern, let's say that it's focused on specific textures, 0:05:11.970 --> 0:05:15.820 chewier textures. or drier textures like rice or breads, and 0:05:15.900 --> 0:05:18.560 really these are the foods that the patient's averse to, 0:05:18.860 --> 0:05:20.900 that's a sign that they may actually be having trouble 0:05:20.940 --> 0:05:23.700 getting that food down. And that's because the esophagus, it's 0:05:23.750 --> 0:05:26.350 a muscle that propels the food down to the stomach, 0:05:26.870 --> 0:05:29.770 and it's going to have more challenges with those specific textures. 0:05:29.830 --> 0:05:32.589 So that's one of the big ones, and that really 0:05:32.650 --> 0:05:36.260 dovetails nicely with those feeding preferences. So When you see 0:05:36.350 --> 0:05:39.270 specific feeding behaviors, it can be very confusing. 0:05:39.589 --> 0:05:43.110 For sure. So what are some of the behavioral reactions 0:05:43.130 --> 0:05:44.210 that come as a result? 0:05:44.490 --> 0:05:47.370 Yeah, so I think what you tend to see is 0:05:47.410 --> 0:05:50.130 that the kids will sometimes pocket the food in their mouth. 0:05:50.240 --> 0:05:52.900 So they may kind of look like a chipmunk. Sometimes 0:05:52.920 --> 0:05:55.280 they're a super talkative kid. They're not really going to 0:05:55.320 --> 0:05:58.000 take bites. They're just sitting and chit-chatting at the table 0:05:58.260 --> 0:06:01.320 while the other kids are actually eating. Sometimes they might 0:06:01.339 --> 0:06:04.540 be spitting food out. or they might have avoidance behaviors. 0:06:04.560 --> 0:06:07.960 They're just constantly getting up from the table. They're pushing 0:06:08.000 --> 0:06:10.960 certain things away. They're preferring other things. They really want 0:06:11.000 --> 0:06:14.760 their drink, but they really don't really want that steak 0:06:14.779 --> 0:06:16.420 that you put in front of them or the chicken. 0:06:16.900 --> 0:06:20.820 But developmental behavioral things, they really improve over time. 0:06:21.560 --> 0:06:24.060 EOE doesn't. It's a progressive disease. It gets worse over time. 0:06:24.920 --> 0:06:28.300 And again, these are really challenging things because this really 0:06:28.400 --> 0:06:31.980 overlaps quite significantly with what we commonly see in And 0:06:32.180 --> 0:06:34.390 picky eaters, especially early in life. 0:06:34.750 --> 0:06:37.830 Yeah, I mean, it's really a challenge for the parent, right? 0:06:37.890 --> 0:06:40.830 Because in so many ways, like, you're not going to 0:06:40.850 --> 0:06:43.770 bring the kid to the gastroenterologist every time they say, no, 0:06:44.210 --> 0:06:46.909 I'm not going to eat the broccoli. Right. But on 0:06:46.930 --> 0:06:49.979 the other hand, there's something else going on. Very complicated. 0:06:50.000 --> 0:06:50.740 Yeah. 0:06:51.750 --> 0:06:55.070 What does the typical diagnostic path look like for kids 0:06:55.130 --> 0:06:59.860 with EOE, and why does early diagnosis matter so much? 0:07:00.560 --> 0:07:05.560 So to get a diagnosis with eosinophilic esophagitis, you have 0:07:05.600 --> 0:07:09.760 to have an endoscopy with biopsies. This is the absolute 0:07:09.900 --> 0:07:13.600 vital component of this process. And this typically means you're 0:07:13.620 --> 0:07:15.620 going to have to see a gastroenterologist. You may be 0:07:15.700 --> 0:07:19.190 referred by your pediatrician, you may be referred by an allergist, 0:07:19.510 --> 0:07:22.210 or you may even be referred by another type of 0:07:22.270 --> 0:07:25.130 specialist who's just happened to screen for it. But ultimately, 0:07:25.150 --> 0:07:27.890 you're going to see a pediatric gastroenterologist. who's going to 0:07:27.930 --> 0:07:31.730 decide based on a set of symptoms that endoscopy is necessary. 0:07:31.970 --> 0:07:34.110 When they do that endoscopy, they're going to take a 0:07:34.270 --> 0:07:37.690 slew of biopsies, again, at least three biopsies from at 0:07:37.730 --> 0:07:40.290 least two different areas, so at least six total biopsies 0:07:40.330 --> 0:07:43.650 from the esophagus. They're going to take those biopsies, have 0:07:43.670 --> 0:07:46.420 them examined by a pathologist, and they're going to specifically 0:07:46.500 --> 0:07:50.220 count the number of eosinophils. This is absolutely vital towards 0:07:50.320 --> 0:07:53.980 making that diagnosis of eosinophilic sovgitis. So this is the 0:07:54.040 --> 0:07:57.200 key part of making the diagnosis. And the reason that 0:07:57.240 --> 0:08:00.620 we have to make that diagnosis is that the complication 0:08:00.660 --> 0:08:05.420 of the disease is scarring. So you get chronic inflammation. 0:08:05.440 --> 0:08:08.760 This is EOE, the disease, when you find it. But 0:08:08.850 --> 0:08:12.270 over time, if the disease is not treated effectively, some 0:08:12.310 --> 0:08:15.510 of the healthy tissue is replaced by scar tissue. We 0:08:15.570 --> 0:08:20.340 call that fibrosis. But that scarring process that occurs, what 0:08:20.360 --> 0:08:23.120 it does to the esophagus is it leads to narrowing. 0:08:23.460 --> 0:08:26.740 So again, the esophagus is like a long muscle. And 0:08:26.780 --> 0:08:30.440 when that muscle gets narrowed and rigid in a specific spot, 0:08:30.490 --> 0:08:32.910 you can imagine a piece of meat trying to make 0:08:32.950 --> 0:08:33.670 it past there. 0:08:34.070 --> 0:08:35.490 It's just going to get stuck now. 0:08:36.210 --> 0:08:39.250 And the esophagus itself is not that wide, especially in 0:08:39.290 --> 0:08:42.050 young children. We're talking about somewhere between one and a 0:08:42.090 --> 0:08:45.240 half and two centimeters that the food's got to get through. 0:08:45.559 --> 0:08:50.870 And when that gets compromised... It's very challenging. Oftentimes, as 0:08:50.910 --> 0:08:53.110 the fibrosis has gone on for a long time, the 0:08:53.150 --> 0:08:56.730 inflammation's lasted for a while. You're going to develop narrowing 0:08:56.750 --> 0:08:58.630 in a way that the food gets stuck. We call 0:08:58.670 --> 0:09:01.700 that a food impaction. So even though patients will sometimes 0:09:01.820 --> 0:09:04.500 feel like food gets stuck, they might vomit it out. 0:09:04.900 --> 0:09:06.760 They might drink something, help it get down. 0:09:07.080 --> 0:09:09.319 If it gets stuck, they're going to end up in 0:09:09.340 --> 0:09:12.699 the emergency room. So when this happens, this is a 0:09:12.800 --> 0:09:15.179 serious problem for the patients. That's the reason we got 0:09:15.200 --> 0:09:16.040 to treat the disease. 0:09:17.330 --> 0:09:19.460 And that's the reason you want to have as early 0:09:19.480 --> 0:09:24.660 a diagnosis as possible. You talk about endoscopy, but just 0:09:24.700 --> 0:09:27.540 for listeners who may not be familiar with that term, 0:09:27.620 --> 0:09:30.380 what is an endoscopy? What does that mean? Yeah. 0:09:30.600 --> 0:09:33.559 So an endoscopy, it's like a flexible tube with a 0:09:33.620 --> 0:09:36.160 camera and a light. It's got a little port where 0:09:36.220 --> 0:09:39.180 I can put the forceps through and actually take tiny 0:09:39.220 --> 0:09:42.520 little biopsies from the tissue. Now, these biopsies, they're the 0:09:42.610 --> 0:09:44.890 size of the tip of a pen. They're super tiny 0:09:44.910 --> 0:09:48.080 and but they're super informative for us. So in order 0:09:48.120 --> 0:09:50.620 to have an endoscopy, you and your child are going 0:09:50.640 --> 0:09:52.920 to come to the hospital. You might go to a 0:09:52.980 --> 0:09:56.589 surgery center. An anesthesiologist is going to help your child 0:09:56.630 --> 0:09:59.250 go to sleep. And while they're sleeping, I'm going to 0:09:59.270 --> 0:10:01.670 put the camera down their throat and into the esophagus 0:10:01.830 --> 0:10:03.730 where I'm going to look to see what it looks like. 0:10:04.370 --> 0:10:06.010 That's actually going to give me a chance to see, 0:10:06.270 --> 0:10:09.170 does it look inflamed? Does it look scarred and narrowed? 0:10:09.240 --> 0:10:11.240 I'm going to get a sense of what's going on. 0:10:11.530 --> 0:10:14.720 And then I'm going to take those biopsies. Those biopsies 0:10:14.740 --> 0:10:17.480 then go to a pathologist for review. And that helps 0:10:17.520 --> 0:10:19.300 determine if there's disease present. 0:10:25.370 --> 0:10:29.270 So, while EOE can go undiagnosed for years in both 0:10:29.330 --> 0:10:32.690 adults and children, the way it shows up in kids 0:10:32.770 --> 0:10:36.500 can sometimes make it harder to recognize in real time. 0:10:37.120 --> 0:10:42.240 And for families, that often means a long stretch of confusion, worry, 0:10:42.360 --> 0:10:46.780 and unanswered questions as they try to understand what's going on. 0:10:47.630 --> 0:10:50.650 My name is Allie. Prior to Paisley being born, I 0:10:50.690 --> 0:10:52.970 worked a full-time career in law enforcement. 0:10:53.370 --> 0:10:56.689 Allie is the proud parent of her seven-year-old daughter with 0:10:57.010 --> 0:10:58.729 EOE named Paisley. 0:10:59.230 --> 0:11:02.070 I switched to a different capacity within the criminal justice 0:11:02.090 --> 0:11:06.130 field in 2021 to be a full-time caregiver. Outside of work, 0:11:06.470 --> 0:11:09.350 I enjoy photography, and that kind of led me to 0:11:09.390 --> 0:11:13.880 documenting Paisley's health journey online. I love networking with other caregivers, 0:11:13.960 --> 0:11:16.380 sharing videos of her story, and it just allows me 0:11:16.400 --> 0:11:18.760 to connect with others going through a similar situation. 0:11:19.700 --> 0:11:23.400 Well, Allie, before we get into details about what's happening 0:11:23.420 --> 0:11:26.170 with your daughter, can you start by telling us a 0:11:26.190 --> 0:11:27.990 little bit about Paisley? What's she like? 0:11:28.770 --> 0:11:33.900 Paisley is in the second grade. She is bubbly, charismatic, 0:11:34.210 --> 0:11:36.810 and also very witty and has a great sense of humor. 0:11:37.550 --> 0:11:41.829 She loves baseball, swimming, and she has a vast collection 0:11:41.910 --> 0:11:42.750 of stuffed animals. 0:11:44.130 --> 0:11:44.969 Does she have a favorite? 0:11:45.370 --> 0:11:48.290 Currently, she's on to jelly cats, and she collects all 0:11:48.309 --> 0:11:49.730 the different colors of the bunnies. 0:11:51.350 --> 0:11:52.590 So you have a full household. 0:11:53.410 --> 0:11:53.860 We do, yes. 0:11:56.530 --> 0:11:59.760 Take us through your journey. What were the early days 0:11:59.860 --> 0:12:02.120 when you realized that Paisley was struggling? 0:12:03.020 --> 0:12:06.940 Yeah, it was December of 2020 when Paisley just caught 0:12:07.059 --> 0:12:11.360 some sort of common virus. She was feverish and sick, 0:12:11.570 --> 0:12:13.230 and so we were just paying a little bit closer 0:12:13.290 --> 0:12:17.569 attention to her than normal. As time went on, we 0:12:17.610 --> 0:12:21.230 were reassured that symptoms would resolve, but we noticed things 0:12:21.309 --> 0:12:26.130 kind of evolving or presenting differently. She was gagging, refusing 0:12:26.190 --> 0:12:29.530 to eat, and coughing and vomiting in her sleep. So 0:12:29.570 --> 0:12:32.229 of course that was very concerning and we were very 0:12:32.290 --> 0:12:34.010 confused by this presentation. 0:12:34.980 --> 0:12:39.000 So it sounds like a really challenging and confusing time. 0:12:39.440 --> 0:12:42.439 What was this period of uncertainty like for you. 0:12:42.360 --> 0:12:43.060 As a parent? 0:12:44.400 --> 0:12:46.540 The best way I could describe it is just a 0:12:46.660 --> 0:12:51.810 feeling of helplessness, um, I felt like I was doing 0:12:51.850 --> 0:12:55.590 my due diligence to communicate with medical professionals, and we 0:12:55.630 --> 0:12:59.470 still didn't have answers. And then simultaneously, myself and my 0:12:59.510 --> 0:13:04.370 husband are still working full time. So the balancing act 0:13:04.410 --> 0:13:07.929 of trying to juggle it all just felt impossible. 0:13:09.580 --> 0:13:12.360 And what was Paisley like during this time? 0:13:12.679 --> 0:13:16.520 She was sick. She felt fragile. You know, she's this 0:13:16.600 --> 0:13:20.650 tiny little human. She's one years old. and she can't 0:13:21.350 --> 0:13:25.470 eat comfortably. It just felt deflating is maybe the best 0:13:25.550 --> 0:13:28.309 way I could describe it. I think the symptoms that 0:13:28.370 --> 0:13:32.350 she presented with could be commonly attributed to basic things. 0:13:32.550 --> 0:13:35.740 Maybe her immune system's a little bit behind. So I 0:13:35.770 --> 0:13:39.540 think they meant well, but I think they also don't 0:13:39.600 --> 0:13:41.460 spend every day with her like we do, and we 0:13:41.480 --> 0:13:42.620 knew something wasn't right. 0:13:43.800 --> 0:13:47.740 So when did you decide to see a GI specialist 0:13:47.800 --> 0:13:48.300 about this? 0:13:49.559 --> 0:13:52.780 Yeah, it was about January of 2021 when I continued 0:13:52.800 --> 0:13:57.620 to press her provider. So he referred us to a gastroenterologist. 0:13:57.860 --> 0:14:01.830 So this was just prior to Paisley's second birthday. We 0:14:02.020 --> 0:14:05.190 consulted in his office, reviewed her medical history and the 0:14:05.230 --> 0:14:09.090 symptoms that were presenting. And he ultimately decided to perform 0:14:09.130 --> 0:14:13.090 an endoscopy and collect several biopsies from her esophagus. And 0:14:13.150 --> 0:14:15.710 based on the results of those biopsies, he was able 0:14:15.770 --> 0:14:19.330 to diagnose Paisley with eosinophilic esophagitis or EOE. 0:14:21.080 --> 0:14:22.300 Do you feel you had to be a little bit 0:14:22.420 --> 0:14:24.800 fierce as a mother to get any answers? 0:14:25.610 --> 0:14:30.430 I did, yes. It was lots of being firm with 0:14:30.470 --> 0:14:34.830 my words, pushing, not accepting no for an answer. 0:14:34.850 --> 0:14:39.730 And your instinct just kicked in. So what did finally 0:14:39.770 --> 0:14:43.119 having an answer bring to you? And what questions or 0:14:43.180 --> 0:14:46.580 concerns did you still have even after you had this diagnosis? 0:14:48.040 --> 0:14:51.620 It was shocking at first because I had never heard 0:14:51.730 --> 0:14:55.330 of eosinophilic esophagitis or EOE. And just the way the 0:14:55.370 --> 0:14:58.130 word sounds, it's a little bit intimidating. I'm like, what 0:14:58.190 --> 0:15:02.410 is an eosinophil? But after learning more about it, the 0:15:02.450 --> 0:15:04.770 doctor explaining it to us, it made a lot of 0:15:04.820 --> 0:15:08.740 sense to us. Even prior to December 2020, Paisley had 0:15:08.780 --> 0:15:12.680 always been a difficult baby to feed, often rejecting food 0:15:12.760 --> 0:15:16.190 or vomiting after meals. So I think finally having a 0:15:16.610 --> 0:15:20.560 label and a diagnosis felt hopeful. I was optimistic that 0:15:20.840 --> 0:15:25.440 we would have improvement. The gastroenterologist also reassured us that 0:15:25.480 --> 0:15:28.310 there was treatment options. So I just really trusted him 0:15:28.390 --> 0:15:30.650 that we would find something that could help her EOE 0:15:30.710 --> 0:15:32.790 symptoms and help manage her EOE. 0:15:41.800 --> 0:15:44.280 So let's talk about some treatment options. What are some 0:15:44.320 --> 0:15:47.420 of the ways that you treat EOE in children? 0:15:47.920 --> 0:15:49.500 Yeah, so there's a number of treatments. 0:15:49.700 --> 0:15:50.180 That's Dr. 0:15:50.220 --> 0:15:54.100 Wexler again. And this includes things like oral steroids, proton 0:15:54.120 --> 0:15:58.920 pump inhibitors, biologics, as well as elimination diets, which dairy 0:15:58.970 --> 0:16:00.020 is the most common trigger. 0:16:01.000 --> 0:16:04.150 Why is it so critical to stick to a treatment 0:16:04.230 --> 0:16:06.010 plan for the full course? 0:16:06.890 --> 0:16:10.970 Yeah, so you have to be very careful with these 0:16:11.030 --> 0:16:13.450 various therapies in the sense that a lot of times 0:16:13.470 --> 0:16:16.370 when you start a therapy, you're going to feel better. 0:16:16.950 --> 0:16:19.190 And I think for many patients, when they feel better, 0:16:19.230 --> 0:16:22.370 that means maybe they get to stop their therapy. But 0:16:22.390 --> 0:16:25.070 the thing about EOE is that it's a chronic disease, 0:16:25.190 --> 0:16:27.450 and when you're diagnosed with it, you're going to have 0:16:27.510 --> 0:16:30.350 it for your whole life. And a lot of times, 0:16:30.510 --> 0:16:34.210 even though you don't feel symptomatic, you can have inflammation, 0:16:34.630 --> 0:16:37.690 and the narrowing process can still develop. And so what's 0:16:37.810 --> 0:16:41.050 really important is that once a therapy is started, that 0:16:41.080 --> 0:16:42.180 you stick to it. 0:16:42.580 --> 0:16:46.400 And more importantly, that the doctor that's treating you, your gastroenterologist, 0:16:46.540 --> 0:16:50.020 assesses whether it works. It's important to remember that symptom 0:16:50.060 --> 0:16:54.360 improvement alone doesn't always tell the whole story. Follow-up evaluation, 0:16:54.420 --> 0:16:58.330 including endoscopy and biopsies, helps determine whether inflammation is improving. 0:16:58.970 --> 0:17:02.890 Because treatments aren't always straightforward, as Allie would soon find out. 0:17:05.380 --> 0:17:17.010 Eating Interrupted will be right back after this. As a reminder, 0:17:17.050 --> 0:17:20.830 this episode and our guests, Dr. Wexler and Allie, are 0:17:20.890 --> 0:17:26.790 sponsored by Sanofi and Regeneron. So, Allie, talk to me 0:17:26.830 --> 0:17:29.770 about the treatment options you tried when Paisley was first 0:17:29.790 --> 0:17:31.790 diagnosed and what the outcome was. 0:17:32.430 --> 0:17:35.470 So over the course of several years, we tried different 0:17:35.590 --> 0:17:40.990 treatment options. We trialed an oral steroid slurry, a proton 0:17:41.040 --> 0:17:45.460 pump inhibitor, otherwise known as a PPI, the food elimination diet, 0:17:45.640 --> 0:17:47.260 and systemic oral steroids. 0:17:48.100 --> 0:17:48.500 Wow. 0:17:50.080 --> 0:17:50.940 Did any of it help? 0:17:51.740 --> 0:17:56.670 It helped. However, we were still dealing with unmanaged EOE symptoms, 0:17:57.230 --> 0:17:59.689 or maybe a better way to phrase it is the 0:17:59.730 --> 0:18:02.469 symptoms were still frequent enough that we were looking for 0:18:02.510 --> 0:18:04.010 an alternative option to try. 0:18:05.150 --> 0:18:08.170 What did you personally decide to do when she had 0:18:08.270 --> 0:18:11.350 symptoms despite trying other options? 0:18:12.650 --> 0:18:16.790 I would describe myself as kind of a go-getter a 0:18:16.810 --> 0:18:21.590 little bit. I didn't necessarily have an abundance of extra 0:18:21.630 --> 0:18:25.330 time in my day. However, I got great at time 0:18:25.369 --> 0:18:28.090 management and I would, in the pockets of my day, 0:18:28.550 --> 0:18:34.250 between a call, look up medical journals, research. I was 0:18:34.330 --> 0:18:43.520 finding online communities, other families, essentially any information that seemed credible, 0:18:44.080 --> 0:18:48.280 I was absorbing so that I felt informed moving forward 0:18:48.300 --> 0:18:52.680 when I was having these conversations with her healthcare providers. Eventually, 0:18:52.700 --> 0:18:56.179 I was able to find a nonprofit organization supporting EOE, 0:18:56.660 --> 0:18:58.740 and it was through that organization that I was able 0:18:58.810 --> 0:19:03.030 to find Dr. Wexler, who specializes in EOE, and we 0:19:03.310 --> 0:19:05.830 decided to transition care to him. 0:19:06.450 --> 0:19:08.450 Can you take me back to the moment you first 0:19:08.490 --> 0:19:12.100 came across Dupixent as a possible treatment? I mean, had 0:19:12.140 --> 0:19:16.220 it come up at all in conversations with your doctors before? 0:19:17.180 --> 0:19:19.530 Prior to me reading about it and learning about it, 0:19:19.680 --> 0:19:22.740 it had not come up in discussion. Through my research, 0:19:22.980 --> 0:19:25.680 I learned that Dupixent was an option for patients with 0:19:25.810 --> 0:19:31.150 eosinophilic esophagitis. So at one of Paisley's follow-ups with Dr. Wexler, 0:19:31.170 --> 0:19:34.369 we had a conversation and discussed if this was a 0:19:34.430 --> 0:19:35.770 potential option with her. 0:19:36.190 --> 0:19:36.430 Dr. 0:19:36.450 --> 0:19:39.869 Wexler reviewed Dupixent's safety profile with us and discussed the 0:19:39.930 --> 0:19:43.510 potential risks. And ultimately, we were able to make that 0:19:43.550 --> 0:19:45.889 decision moving forward that it would be a good option 0:19:45.950 --> 0:19:46.649 for her to trial. 0:19:54.160 --> 0:19:56.639 So, Dr. Wexler, for listeners who may have missed it 0:19:56.700 --> 0:20:00.530 in our previous episode, can you tell us about Dupixent? 0:20:01.070 --> 0:20:02.310 Yeah, absolutely. 0:20:02.650 --> 0:20:06.890 So, Dupixent proactively treats EOE in appropriate children as young 0:20:06.930 --> 0:20:10.010 as one year old and helps block two of the 0:20:10.070 --> 0:20:13.490 key sources of inflammation inside the body that can cause EOE. 0:20:14.130 --> 0:20:17.399 And really, ultimately, is a unique treatment approach that targets 0:20:17.440 --> 0:20:20.240 an underlying source of inflammation that can lead to EOE. 0:20:21.359 --> 0:20:25.220 Well, and from your perspective, what makes Dupixent an effective 0:20:25.260 --> 0:20:29.590 treatment option for pediatric EOE? What does it offer children, 0:20:29.720 --> 0:20:31.129 and what are the potential risks? 0:20:31.790 --> 0:20:35.950 So Dupixent is proven to reduce inflammation in the esophagus, 0:20:36.450 --> 0:20:40.350 and caregivers observe that Dupixent helps relieve EOE symptoms that 0:20:41.150 --> 0:20:44.669 give kids trouble with food. Based on clinical results at 0:20:44.710 --> 0:20:48.120 four months from 61 patients age 1 to 11 years 0:20:48.260 --> 0:20:51.429 old that weighed at least 33 pounds with EOE, This 0:20:51.470 --> 0:20:55.070 was observed in a two-part study. The most common side 0:20:55.090 --> 0:20:59.530 effects in patients with EOE include injection site reactions, upper 0:20:59.550 --> 0:21:03.450 respiratory tract infections, cold sores in your mouth or on 0:21:03.470 --> 0:21:07.100 your lips, and joint pain or arthralgia. These are not 0:21:07.300 --> 0:21:08.619 all the possible side effects. 0:21:09.820 --> 0:21:13.500 Please listen to additional important safety information at the end 0:21:13.540 --> 0:21:19.000 of this podcast. But for now, back to Allie. So 0:21:19.020 --> 0:21:22.109 when you started Dupixent, Did it feel like a big step? 0:21:22.770 --> 0:21:27.640 To say the least, yes. I never imagined my child 0:21:27.720 --> 0:21:33.659 receiving injections for treatment. It felt a little intimidating at first, 0:21:33.859 --> 0:21:37.600 knowing that it's generally an at-home injection after proper training 0:21:37.640 --> 0:21:41.530 from your healthcare provider. But we always have remained optimistic 0:21:41.710 --> 0:21:44.730 about her doing better and helping treat her EOE symptoms. 0:21:46.000 --> 0:21:48.419 So how did you go about learning how to administer 0:21:48.460 --> 0:21:51.240 the injections? What was that experience like for you and 0:21:51.280 --> 0:21:51.900 your family? 0:21:53.160 --> 0:21:58.889 We received injection training at Paisley's allergist office. So the 0:21:58.910 --> 0:22:02.070 first injection was done at the office by the doctor, 0:22:02.290 --> 0:22:05.250 and we received training on how to properly administer it. 0:22:05.490 --> 0:22:08.669 And from there, we transitioned to injections at home, in 0:22:08.710 --> 0:22:09.649 which I administer. 0:22:10.950 --> 0:22:11.879 Have you gotten used to it? 0:22:13.450 --> 0:22:18.020 I think for... We're used to it. We've really allowed 0:22:18.060 --> 0:22:21.970 Paisley to be a part of the process. So yes, 0:22:22.150 --> 0:22:26.090 she's now seven and at the time she was much younger. However, 0:22:26.130 --> 0:22:28.830 I think when you can increase your child's autonomy in 0:22:28.869 --> 0:22:31.270 a situation, it makes it a lot more comfortable for 0:22:31.330 --> 0:22:33.710 them and in turn makes it more comfortable for me. 0:22:33.730 --> 0:22:37.790 I let her pick her injection sites. There's several approved 0:22:37.830 --> 0:22:40.310 injection sites and she gets to pick the one for 0:22:40.350 --> 0:22:43.720 that day. We allow her to pick the environment in 0:22:43.790 --> 0:22:47.990 which she receives her injection. So sometimes it's the three-season porch. 0:22:48.410 --> 0:22:52.050 Sometimes it's the toy room. Paisley likes to sit on 0:22:52.330 --> 0:22:56.590 my husband's or dad's lap. And Paisley loves music. So 0:22:56.650 --> 0:23:00.350 we find that allowing her to have her iPad with 0:23:00.390 --> 0:23:04.990 a music video on really kind of acts as a distraction. 0:23:05.450 --> 0:23:10.450 And then immediately following, we always introduce some sort of positive. 0:23:10.490 --> 0:23:13.010 So it gives her something to look forward to and 0:23:13.030 --> 0:23:15.990 really minimizes the time that she's focused on that injection. 0:23:16.450 --> 0:23:19.210