The Impact of Nutrition on Rare Disease
In this episode, Lisa Jones interviews Elizabeth L. Wright, MS, RD, CSP, LDN, FAND, CLC, and Michele Shuker, MS, RD, CSP, LDN, on the impact of nutrition on rare disease, including eosinophilic disorders and postural orthostatic tachycardia syndrome in children.
- Postural orthostatic tachycardia syndrome (POTS). Cleveland Clinic. Updated October 12, 2022. Accessed July 13, 2022. https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
- Postural orthostatic tachycardia syndrome. Dysautonomia International. Accessed July 13, 2022. https://dysautonomiainternational.org/page.php?ID=30
For more eosinophilic disease content, visit the Resource Center.
Elizabeth L. Wright, MS, RD, CSP, LDN, FAND, CLC, is a clinical dietitian and lactation consultant at Middleman Family Pavilion of Children's Hospital of Philadelphia, King of Prussia (King of Prussia, PA).
Michele Shuker, MS, RD, CSP, LDN, is a nutritionist and the Clinical Program Manager at the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia (Philadelphia, PA).
Lisa Jones, MA, RDN, LDN, FAND, is a registered dietitian nutritionist, speaker, and author (Philadelphia, PA).
Moderator: Hello, and welcome to Nutrition411: The Podcast. A special podcast series led by registered dietician and nutritionist Lisa Jones. The views of the speakers are their own and do not reflect the views of their respective institutions or Consultant360.
Lisa Jones: Hello and welcome to Nutrition411: The Podcast where we communicate the information you need to know now about the science, psychology, and strategies behind the practice of dietetics. Today's episode is on the impact of rare disease on nutrition. Today my guest is Beth Wright and Michelle Shuker. I want to introduce Beth first. Welcome, Beth.
Elizabeth Wright: Hi. Thank you, Lisa.
Lisa Jones: Beth Wright is a pediatric clinician, certified lactation consultant, fellow of the academy, speaker, author, website designer, and camp counselor, who currently works at the new Middletown Family Pavilion of CHOP in King of Prussia, Pennsylvania, CHOP's new community-based hospital. Along with the clinical nutrition supervisor, Beth is the first dietician to work at this brand-new facility, which opened its doors at the end of January, 2022. Overall Beth has been an employee at CHOP for 18 years and has been called the “jack of all trades” being the first dietician to be able to cross-cover and provide staff relief in multiple inpatient and outpatient pediatric settings. So it sounds like you don't sleep, Beth.
Elizabeth Wright: Yes, no, I don't never sleep.
Lisa Jones: So, welcome. I'm looking forward to hearing all your experiences at CHOP.
Elizabeth Wright: Thank you.
Lisa Jones: And we also have Michele Shuker. Hi Michele.
Michele Shuker: Hello, Lisa. Thanks for having me.
Lisa Jones: Yes. I'm glad you're here. And Michele, who has many, many credentials, which you can refer to on the website, as well as Beth, is a clinical program coordinator nutritionist in the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia. Welcome, Michele.
Michele Shuker: Thank you so much.
Lisa Jones: All right. So I will begin by asking you four questions, and let's start with Michele. So Michele, if you can tell us about the rare disease that use most in your specialty area.
Michele Shuker: So, all I do all day every day is see patients with eosinophilic disorders, primarily eosinophilic esophagitis. That is the most common of the allergic GI disorders. And essentially, obviously we have a center dedicated to it, but that's what I do. I used to see some general food allergy patients over the years. And there certainly are many of our patients who have IgE-mediated allergies and allergies people are used to hearing about, but those are the patients I see. And I'm also the coordinator of the program, the program manager and the go-between essentially between allergy and GI and communication with families and developing treatment plans. And I run the second opinion program for us too. So it's EOE, which is the abbreviation for eosinophilic esophagitis. Feel free to use that all day every day.
Lisa Jones: Thank you, Michele. It sounds like you're extremely busy as well. And I like the abbreviation EOE because a follow-up question, which wasn't on my list but I do have to ask, how much time do you think you spend trying to help people pronounce it correctly? Because it's not an easy word.
Michele Shuker: And the specific answer to that question is a lot. Yes, it is. I always tell families that once you get, it's going to roll off your tongue, but it is a hard one to get. I always tell this story about when I shifted into this role because for my first six years at CHOP, I was in the nutrition department, it was outpatient clinical manager, blah, blah, blah, and was doing part of this role, the clinical part of this role in just a different capacity. But before patients would get diagnosed, they'd see the allergy they'd come see me. And then we had the ability to start this program where we were all together for the same clinic. But anyway, once I shifted into my role in allergy, which required me to defect essentially from nutrition into allergy, one of my sisters had called me at work one day and got my voicemail. And so she hardly say Center for Pediatric Eosinophilic Disorders. And the first line of her message to me was, "What is this Snuffleupagus thing you're doing?"
Lisa Jones: That's so funny.
Michele Shuker: So, there you go. Yeah.
Lisa Jones: Oh, I like that. That's a good one. Snuffleupagus. EOE. And then you said, "Just say EOE." Well, thank you.
Michele Shuker: Yeah, just say it. Because that's what we all think.
Lisa Jones: I like this story, Michele. Thank you, Beth. How about you? How about you tell us, and I know it's not the same one, but tell us about a rare disease you see the most in your particular specialty area.
Elizabeth Wright: When I was covering outpatient cardiology and I was there for about 10 years, I wouldn't see it was a lot, but it was just definitely like you said, rare. So there would be these teenagers presenting with something called postural orthostatic tachycardia syndrome. And you can say that 10 times fast without stumbling, right? POTS, for sure.
Lisa Jones: Let's just go with the abbreviation for today.
Elizabeth Wright: We’ll just go with the abbreviation class. And so when they came in, it was more even how to get any type of nutrition in them because it’s hard with all the symptoms they’re having and all the medication they were on. Usually, the cardiologist would refer them or sometimes the neurologist. They would see so many different specialists and it’s a type of rare syndrome where it might not take until about five or even 10 years to diagnose.
Lisa Jones: Wow.
Elizabeth Wright: Until you finally say, "Oh, this is what it is. You're having GI symptoms. You're having bad headaches. You're having the circulation problem." And so by the time it's diagnosed, then you can treat. You just treat the symptoms, you can't cure it. And so by the time they would come to me, they're either at their wits end on trying to prevent more weight loss if that's happening or just the nourish their bodies, just to get through this time period. Because all of a sudden, sometimes this can just show up during puberty and it can just go away by the time they're in college or a little bit after. So it was an interesting group of individuals and they all presented differently while I was in cardiology.
Lisa Jones: Well, that really interesting because the thing that I would think that would happen is once they get to you Beth, after trying to figure out for that long period of time, five to 10 years, didn't you see them have some relief at the same time? Like, "I finally found out what it was now I can treat the symptoms even though there's [inaudible 00:07:09]."
Elizabeth Wright: Yes and no. Either, "Yes, we finally have an answer." Or, "No, we're so frustrated right now can anyone help us." Type deal. So yeah, it was a mixture. It was a mixture and not only did each patient present differently... Each parent presented differently. So yeah, it was just like that. Either relief or continued frustration. Mainly most often the continued frustration.
Lisa Jones: Well, that is a long, I can imagine. And many people don't have patience and five to 10 years, for sure. Especially if you're trying to figure out what's wrong with you. Five to 10 years is a really long time.
Elizabeth Wright: It is.
Lisa Jones: I can see how that would be. And then by that point, you're not only treating the actual patient, which is the pediatric patient, but then the parent too, because you've to deal with the parents.
Elizabeth Wright: Parents. It's frustrating. I always felt very bad for them.
Lisa Jones: That's very interesting though. So then let me ask you this, Beth, what are some common nutrition interventions that you can share with other clinicians, like other dieticians that may be encountering the same thing in their practices?
Elizabeth Wright: So most of these kids, so number one thing that you do, you have them drink a lot of fluids. So, if you calculate their fluid needs, it'll come out to about 1.5 about two times maintenance or even higher than that. And that's very challenging to have a teenager just constantly drink all day. Keep drinking, have this beverage next to you, have anything next to you. Water, beverages that have salt in them. So that's the second one. First one is a lot of fluid to help circulate the blood and everything. And then the second one is a lot of salt. So instead of dumping salt on food, because the other challenge is having them try to eat the amount of calories they need, period. Because they might have issues with constipation. So they're not able to eat so much or they have gastroparesis where you have delayed emptying of your stomach.
So they can only tolerate smaller amounts, every so often. So you can't really shove in so much salt, right? So you can encourage salty beverages such as Gatorade, vegetable juice, tomato juice, broth. That's not easy. A kid doesn't really want to drink tomato juice or vegetable juice and adult might... They might say, "Oh, can I have that with vodka?" Oh sure. A little bit. Yes. But eating a lot of deli foods, deli meats, and cheese, anything you can think of, that's so high in salt, you should avoid for hypertension. This is the opposite. Those are the different things. And then when it comes to the other stuff, let's say the gastroparesis is part of it that can or cannot happen with some of them. But like I said, not everyone presents with the exact same symptoms. That's why it takes a while for it to even be diagnosed.
Then they have to have smaller volumes of food every so often, because you don't want to fill a stomach up that has problems emptying, right gastroparesis. And then if they have constipation, you do want to encourage some fiber, but not a high amount of fiber, just a moderate amount. Because you also don't want to aggravate it to develop gastroparesis or anything like that. And a lot of these kids also are very nauseous. So even just having them try to eat is hard. It's a very difficult thing to treat, but those are the main things for nutrition intervention.
Lisa Jones: Well thank you for sharing that. It sounds to me like as a dietician or a clinician with trying to feed them, you're walking on a tightrope. There was a lot of-
Elizabeth Wright: Right.
Lisa Jones: Like that's not easy.
Elizabeth Wright: Right. One girl I had on a fluid pump just to get enough fluids into her, it was interesting. I think Penn placed it, not CHOP. There were some back and forth between some of the specialists and CHOP specialists. Doesn't really affect boys. It's mainly in females, but I did have a young boy and he was on NJ feedings. Nasojejunal feedings. So they might have to have some tube feedings sometimes to get them through it. That's not easy.
Lisa Jones: No, it's definitely not easy. Very challenging. Thank you for sharing that. And Michelle, just going over back to you with the EOE, what type of some common nutrition interventions can you share that would help other clinicians in the same situation?
Michele Shuker: So the main cause of EOE is food allergy. And not the traditional food allergy we're used to hearing about, it's a different mechanism of the immune system that's driving this cell-mediated response. That's what we're dealing with in EOE. So traditionally, and still to this day, the majority of kids are treated with diet restrictions. So the same as you would do with any other food allergy, you're talking about complete elimination of that food. Now there are varying ways to do this. There's just a lot of variations on that theme and there is no one-size-fits-all with that treatment, mainly because although we know what the most common foods to cause this are, and if those foods are in the diet, we'll act accordingly, there is no perfect way to identify those foods that are causing the trouble ahead of time.
So that with, let's say an IgE-mediated allergy, someone needs to [inaudible 00:12:55] you have this clinical response that tells you what's happening. And almost always that clinical response is going to be backed up by let's say a positive skin test. If they go to the allergist and they get skin testing done that is positive. But that type of testing is really only useful for that type of allergy. Even though in the EOE world, a lot of allergy testing has been done over the years and we at CHOP used to do a whole lot of that too. But what we and other large centers learned over the years is that they've been with the general EOE population because allergy testing is fraught with false positive results, false negative results. Chief among them, so milk or dairy products is the most common food to cause EOE.
And yet very often you'd see a negative allergy test to milk. Even if we were doing, let's say patch testing, which looks for the risk of a delayed reaction to a food. So we used to do a lot of that too, but again, in the end there was no real advantage to putting everybody through that. So there are varying schools of thought to how to go about restricting the diet, how restrictive to be. But, and perhaps I'll get into that later, because that's a big part of this, but to answer your question specifically, it all comes down to the diet restriction and how many foods are removed. So if we are talking about... At CHOP, we tend to not remove large groups of foods at one time. We used to end up doing that when we did a lot of testing and kids would test positive to lots of foods, and then he yanked all these foods out of the diet and we really weren't asking like, "Oh, what's the degree of exposure to these foods? Are you really eating bananas a lot?"
Something like that, where... So anyway, point is that we tried to scale it down so that we try to take as focused in an approach as possible. And typically that means if someone has dairy products in their diet on a regular basis, that's the first food to come out. Or perhaps we do milk and wheat, which is the next most common food. But so as with IgE-mediated food allergies, we have to make sure that removing those food or foods doesn't... We have to be careful about not creating a deficit for calories for protein, for specific micronutrients. So all of those things can be at risk depending upon the food that's removed or the number of foods that are removed.
So that's the biggest clinical issue at the outset, but because we have to keep in mind as we all do, no matter what we do, quality of life, it's easier nowadays because there's so many allergen-free foods available versus years ago that, on paper, you could remove 10, 12, 13 foods from someone's diet and be able to put something into food processor that looks great, but you make that person miserable.
And years ago, we didn't have that many options. So the diets were more restrictive and the resulting foods for the patients, it was no fun. So a lot of times we would end up putting, especially our younger patients on elemental diets, where they get all or just about all of their nutrition from elemental formula and probably need go into off less. Along with that, there are times when it is the most appropriate therapy, but these days not when we look at first line treatment for nearly all of our patients. So that carries with it, of course all.
Lisa Jones: So while Beth is walking on a tightrope, it sounds like you're trying to solve a puzzle?
Michele Shuker: Yes. That's a challenge.
Lisa Jones: A challenging puzzle, I should say.
Michele Shuker: Yeah, that's exactly what it is. That's how we refer to it. There's all this... You speak in crime show metaphors. It's like you're trying to figure out which food caused it. And I'm such a dinosaur that I'll keep repeating the same thing. Like, "Well, we have to find out who committed the crime and all that stuff." But what that speaks to, what I try to get at when I'm talking to families and especially when you're talking to the physicians, especially these younger fellows, is we starting to wanting to make sure that they are approaching this in the right way, our way, because of course our way is always right, is what all that speaks to is the need to get an accurate history.
And if I drive home one thing about treating EOE, and if you're going to treat with diet, because you don't always have to, if you are, you must get an accurate diet history. It doesn't make any sense to say, "Oh, remove either six food elimination diet or an eight-food elimination diet." Makes zero sense to remove foods that aren't in the diet or aren't in a diet on a regular basis. Which is why you always say, "What are the most common foods to cause this? And what's a degree of exposure and work from there."
Lisa Jones: And each case is different. So it's like you're doing a new... Like you're not following a specific protocol each time. Right? Because everybody's different. You can't standardize it.
Michele Shuker: Exactly. Right. Yep. Exactly right.
Lisa Jones: I find that so fascinating, which brings me to my next question, Michele, would've been some of your successes that will help other colleagues working with this particular population? And it sounds like one of the things I heard you say loud and clear was getting that accurate diet history because without it, how are you going to be successful?
Michele Shuker: Exactly right. And it's something that seems so... Even when we used to do lots of allergy testing, you would get so caught up in trying to just devise a plan that often... It's like, "Okay, all these are positive. These allergy tests are positive." But over time you realize, "All right, well they're positive, that's it?" It doesn't mean anything else other than that. That's what a positive allergy test means in this particular setting. It's only positive. It does not mean you're allergic. It does not. With this type of food allergy, the only test, the truest test, actually it's the only test that's going to tell you what's happening or pinpoint that causative food is the endoscopy and biopsies. That is the only way to know what is happening and the only way to be able to definitively assess the treatment.
So I would say that a lot of the successes because we do see a lot of second opinions, very often come from just that is backtracking asking families, we'll get all the records, I'll go through everything, look at their history with their biopsy results and the diets they were on. And to this day there are a lot of centers. No shade, but there are lot centers that will still follow this very commonly used six food elimination diet or eight food elimination diet. And one of the first things I always ask every family is, "Okay. So you took out all these foods, which of these were you really eating? You were eating dairy. Okay. You were eating wheat like most people do unless they're avoiding it for some other reason. Were you really getting soy in your diet?"
On purpose, soy, not worrying about incidental exposure. I mean some centers do, but we have not had reason to do that. "How often were you really eating shellfish?" "I never eat shell." "Okay. How often were you eating eggs?" "I hate eggs and sometimes I get eggs baked into the..." "Oh, okay." That's where some of our biggest successes have come from where you have to start over again with many of these families, but you at least whittle down the list of potential conferences and yeah, we see a lot of success with that.
Lisa Jones: Oh wow.
Michele Shuker: Just restarting.
Lisa Jones: Yeah. Go back to the beginning.
Michele Shuker: Yep. Yep.
Lisa Jones: That's a great tip though. I think that's helpful. Thank you. So Beth, in terms of thoughts, what would you say if you can share some of your successes that will help other colleagues, other dieticians working with this population?
Elizabeth Wright: Instead of what Michelle was talking about, getting a diet history, this is different. This is getting more of a symptom history. Obviously, I'm not a doctor. Not going to diagnose, but you also are there. They're frustrated. So they want to also just talk to somebody and get their frustration out. I did see two girls, one time that were in another hospital setting for... They assumed these girls had eating disorders, treated them like anorexia nervosa because right, the girls were afraid to eat because it was very uncomfortable, but they weren't deliberately doing it and they weren't deliberately trying to lose weight. And they were telling me about what happened at this facility till when they came out of the facility. And then I'm seeing them at outpatient and I'm like, "Oh, okay. So now does this happen when you stand up, do you get very faint? Do you feel like you're going to pass out?"
"Do I? Yeah." And I know that can go hand-in-hand with eating disorders so you can get your blood pressure can drop at times from not being nourished enough. But then I went into all the other symptoms. I'd like, "Oh, do you feel? You have a foggy brain? How do your feet feel? Do they sometimes get bluish or do they feel numb?" Now that's not something you dance someone with anorexia, you're getting a diet history. Right. And these girls were like, "Yeah." You're like, "What are you getting at?" And then I was getting into some of the other shakiness exercise intolerance. Just because of the shifts and blood pressure, they just have a hard time. This is a...
POPS affects the... I didn't explain this earlier and I'm sorry. The endomorphic system of us. So it affects your blood pressure. And what else? Is in your nervous system. Is part of your GI system. So it affects a number of things that you can't really-
Lisa Jones: Control.
Elizabeth Wright: That right. You can't control, but your brain is controlling. Right. And so I did say... Honestly, I'm sorry. It sounds like you want to eat. And they're like, "Yes." And I'm like, "Well, that's not common in anorexia." They don't want to eat. So I said, "Hey." At this time I referred him. I reached out to the cardiologist who specialized this. And at the time it was Dr. Boris with CHOP, but he's not with CHOP any longer. There are other specialists now that see them. And I reached out to him about my concerns about these girls.
And I said, "Can you have them be scheduled for a cardiology appointment?" That was the number one. You can also send them to GI too, to be looked at for any gastro dysmotility going on also. So those are the first two people. And I think they already had neurology on board for headaches, but that was one of the success stories that I felt really good about. Because I honestly did not feel they had anorexia at all. I was just like, "This isn't adding up to an eating disorder. This is disordered eating from feeling uncomfortable with eating."
Lisa Jones: Thanks, Beth. That's incredibly helpful because I think it's-
Elizabeth Wright: Oh, thank you.
Lisa Jones: ...One of the things is, especially if dieticians aren't used to it, like you're giving them a roadmap to follow. If something like this pops up, what can they check off? And then who can they refer to? Because one of those things-
Elizabeth Wright: True.
Lisa Jones:... Is you never know like, "Where do I send this? Who can help me to solve this problem?" And I look at it as problems we're all solving. So let me ask you Beth, what is on the horizon for POTS and what impact does it have in terms of the nutrition field?
Elizabeth Wright: Since I last saw these individuals separately in my cardiology clinic is now there's an innovative program. They call it ORA multidisciplinary program and clinic that the kids can see. It's amazing. There is a team of about 10 people. So there's, I think, neurology is in there. There's GI cardiology, physical therapy, and psychology, and I might be missing another discipline and the patient will now come to this clinic for the whole day, pretty much hours. Right? They'll see half of the providers in a morning and then they'll see the other half in the afternoon. And what the team does is in the middle of the day. And at the end of the day, they'll regroup and talk about each patient for the other providers who haven't seen them.
And so that has been the most amazing thing for this population ever. Is to have all of the services under one roof and saying, "Oh, next week I have neurology. Next week I have my cardiologist appointment. Oh, in two weeks from now, instead of seeing so many different people, different times and the parents taking off from work, taking their children, right. And the children taking off from school, you can just see them in one day and have one whole disciplinary team see them. So that's what is on the horizon for them and a multidisciplinary team approach and an innovative program.
Lisa Jones: I love that. That is such a great idea. It's like a one-stop shop for all your medical appointments. They should have that for everything. Not just POTS.
Elizabeth Wright: Pretty much.
Lisa Jones: Thanks Beth. Michele, how about for EOE? What are you seeing on the horizon and the impact on nutrition?
Michele Shuker: For now, and just to mention, we do see. Not that I have numbers on this, but over the years there isn't. Even now we've seen a fair number of kids who do have POTS. And I don't want to take up time with this question, but when Beth was talking about the misdiagnosis or confusing these symptoms for indicative of a different diagnosis, we'll see that too. And POTS patients is a really good example because a lot of these kids will come to us. Of course, they probably do have symptoms of EOE, but one of the chief symptoms of EES is discomfort when eating or an unwillingness to eat, no matter what your age is. Not for everybody, but it happens very often and we will see kids come in. They're just not eating well at all.
They feel horrible. We're like, "Oh, so we treat their EOE and their biases would be totally normal. And yet they might still feel vulnerable." And it's interesting where I think that it'll be very interesting looking forward, having people be aware, the fact that it could be that. Obviously, if someone's not feeling better when you expect them to, you're thinking about what else it might be.
Lisa Jones: Right.
Michele Shuker: But I think historically not many of us had thought of POTS as being, "This thing could be responsible for all of these other symptoms." You often think like, "Oh, they're just depressed. Or, "Oh, they're [inaudible 00:27:35]" or, "Oh, they're tone extra fatigue." They just exercise. They feel better. And while that might be true in some regard, it really is confounding. But on the horizon for EOE is, our profession, unfortunately, has nothing to do with us.
But in terms of the disease itself, we are now able to use biologic therapy because Dupixent Dupilumab has just been approved by the FDA for use in eosinophilic esophagitis. So darkly it's been used to treat eosinophilic asthma. You've probably seen the commercials for Dupilumab for that. It's also been used to treat eczema. And many of our patients have all these other atopic conditions. So many of them will have asthma. Many of them have eczema, not necessarily eosinophilic asthma, but you're regular asthma. But so many of our kids will have that. We had gotten Dupixent approved for some of our patients who did have severe eczema, but now it is approved for use in kids over the age of 12 and over I think, 40.5 kilos to be used. And it could be used as a first line if the family so choose. We actually just had a meeting about it, all of us on our multidisciplinary team discussing the role of biologics and where we maybe see this going and whether or not, how likely we may be to use it as first-line treatment.
Or I think for us, we've historically wanted to use diet as often as we could to treat, but there are circumstances where it is just not the best thing at that time. So our alternative to that medically speaking has been to use swallowed or topical steroids. So asthma medications that are used off-label to treat EOE. So instead of using an inhaler and inhaling medication in there, you actually swallow it. Or instead of using a nebulizer with Budesonide and inhaling that you actually swallow it. And they're very effective. And we, for years, used them for kids who instead of diet as first-line or if we've not gotten anywhere with rounds and rounds of diet restrictions, we've used that successfully. But now there is this monoclonal antibody that we can use to treat. I know that there are plenty of families who would prefer to use that versus steroids. So.
Lisa Jones: It sounds very promising. Oh, that's good news.
Michele Shuker: Yeah.
Lisa Jones: It's not going to solve it. Right. You're still going to have to be the puzzle solver there, Michele. How about sharing one story or analogy showcasing your work? So we'll start with you Michele, for that.
Michele Shuker: I hate to go back to the previous story, but honestly, yes, we're restricting a diet. So yes, we have to figure out a way to make up for whatever deficits we're creating. So of course, you're going to up calories one period, you're going to add protein a different way. You're good. And obviously, there's a skill to that, of course. And that primarily comes with experience. And I don't want to say anybody can do that because I don't think anybody can, but honestly, I think that absolutely because I've been doing this for so long, it was early on, luckily that I was able to...
Just you're able to develop that skill of really going, "What are we doing with this yanking foods out of the day when no one's eating them to begin with. What are we doing and why? And even if they're eating five, why are we taking away five?" Yes, odds are, it's more than one food. There are some, there's one school of thought cast as wide and net as possible with the foods. And that's true. The more foods you remove, the greater the odds of cheating remission. But how many fish do you want to catch?
Lisa Jones: I like that cast a wide net.
Michele Shuker: So it's quality of life that factors into that. So that remains to this day, like one of... I think it's one of the best skills I develop and certainly that others have too, but it has never not been valuable. Never not one time.
Lisa Jones: Your contribution's in such great work you've done over the years. So on behalf of all of us dieticians out there, we thank you.
Michele Shuker: Oh my God.
Elizabeth Wright: Helping others, leading the way.
Lisa Jones: Beth, how about for you? You've already shared a bunch of different stories with us, which I appreciate.
Elizabeth Wright: Yes.
Lisa Jones: I'm trying to think.
Elizabeth Wright: Thanks.
Lisa Jones: Is there anyone that stands out for you that you haven't mentioned yet that you like specifically in relation to POTS?
Elizabeth Wright: I got one girl. I just felt... So she was on a fluid pump. I can't even explain where the fluid pump was going. It was into her stomach and she was just so debilitated. This was a mom that was very, very frustrated. She came and saw me a couple of times and the patient too. And the patient just looked so weak and she was in a wheelchair and you just felt so bad. You didn't know what more to do. And she was trying to eat. She just felt so nauseous that she couldn't get everything in. I think I'm at the time when there wasn't a disciplinary clinic, I sent her to the GI for motility. I sent her to her. I'm like, "Oh, you're like my friend, Andrea, who deals with kids with motility issues. Because I just felt like, "Oh my goodness, I really..." She was a challenging patient.
Another girl didn't present so badly. She more had like some nausea in the morning and wouldn't eat. She was the one I had on like a moderate amount of fiber to help she had the constipation issue. So I felt like I was more of a success with her because she wasn't so affected by how that other girl was. But when I'm challenged or when I'm faced with challenging situations, what I want to say, I will deep dive and I would write. So I am published with the Nutrition Intervention for POT. So, yes, it's about five years old. It was published in 2017. But because this was an area that was so foggy that I just delved deeper into it and put it all together and just like an article. So if that's what was successful for me and helpful for me.
Lisa Jones: Thank you. That's helpful.
Elizabeth Wright: Thanks.
Lisa Jones: We're going to put that in the show link. So it'll be a resource if anybody's looking to read more about it. Because just listening to both you and Michele, I was like, "I feel like I need to go educate myself. I don't know enough." So I'm not practicing in this area. But for those that are, I think just learning. We never stop learning. So always learning more and the helpful tips that you both shared. So I thank you for that, but if you can boil it down into one key takeaway, what would you say? So what would you say, Michele? Those that are out there practicing EOE, besides being able to pronounce it. What would be your number one key takeaway?
Michele Shuker: There is no one-size-fits-all for this. No one-size-fits-all and every plan has to be individualized. It just has to be.
Lisa Jones: Yes, personalized. That goes back to the personalized nutrition. We can't hear enough about it lately. They're acting like it's a trend. Hear Michelle was doing it the entire time. So it's not a trend Michele's been doing that.
Michele Shuker: No please. So good.
Lisa Jones: How about you Beth? How about your one key takeaway for POTS? If you can just-
Elizabeth Wright: Okay. I did two. The one is to piggyback on Michele. It's the same thing. Not one size fits all plan. Everyone's different. Just like I said, how each individual were dealing with different types of side effects and everything and symptoms. Another one is to get the right people together to help with this child or family. So yeah, you may need psychology. You may need cardiology. You may need neurology. You may need GI. You may need physical therapy and exercise physiologist. If there isn't a multidisciplinary program in your area, it's getting the right team members involved to work together with this one patient.
Lisa Jones: Collaboration. I love it.
Elizabeth Wright: Collaboration.
Lisa Jones: That's so good. Thank you.
Elizabeth Wright: That you have to reach out from different areas and different clinics. Because they're not all under one roof, like inpatient. They're all over the place. So knowing who's in that area, what cardiologist would you refer to? What... All different disciplines that you would want, that you have a good rapport with too, and say, "Hey, I've got someone coming to you and I'm concerned this is going on."
Lisa Jones: That's going to be so helpful. I'm sure the parents are going to love that.
Elizabeth Wright: Yeah. Hey, by the way, you got five different appointments this month.
Lisa Jones: Well, if they're all in one day, they just need to take off one instead of their [inaudible 00:36:15]
Elizabeth Wright: Oh, the program. Yes.
Lisa Jones: Yeah. The program.
Elizabeth Wright: But before the program, it was harder. A lot harder, right?
Lisa Jones: Yes. Thank you. I learned so much from both of you as I'm sure our listeners will as well. Now is the fun time. Just a couple more questions. We're going to have some fun. You don't know these in advance. So, the first thing that pops into your mind is your answer. Are you guys ready to play? Okay. My first question, I'll go with Beth first. Beth, what is your favorite summer food?
Elizabeth Wright: Lobster roll.
Lisa Jones: Lobster. Thank you. How about you, Michele?
Michele Shuker: I have to go with that. I agree. And not because I couldn't think of something else. That is... Yeah.
Elizabeth Wright: We're one and the same, Michele.
Michele Shuker: Yes. I'm like you.
Lisa Jones: A round of lobster rolls. Okay. If I invited you to a picnic, what would you bring to the picnic? Beth
Elizabeth Wright: Buffalo, chicken dip.
Lisa Jones: Buffalo chicken dip. Okay. How about you, Michele?
Michele Shuker: Tequila.
Lisa Jones: Tequila. That works.
Michele Shuker: Always need to bring what you drink.
Lisa Jones: There you go. It's good. It's good. Bring what you drink. Okay.
Michele Shuker: Yeah.
Lisa Jones: And then how about the last question, Michele, I'm going to ask you first. What is your favorite activity to do in the summer?
Michele Shuker: In the summer, I would say... So I live at the Jersey shore now.
Elizabeth Wright: Lucky you.
Michele Shuker: Yeah. We moved down here full time. I know. So of course, going to the beach and stuff. But really what I love best about the summer is gardening. I get to spend all day outside if I want to wear some floppy old lady hat and getting covered in dirt and I don't care what anyone thinks about it or... It's just...
Oh, that is great. I love that. How about you Beth?
Elizabeth Wright: ... Jealous of Michelle living at the beach. Because the beach is number one. I was just there, took my kids for two nights just because I like to go, even though it's chaotic with the little ones. And yeah, we were on the beach. I love the bay. I got married at a yacht club on the bay and I love the bay. Love anywhere near water.
Lisa Jones: Nice.
Elizabeth Wright: Mainly the beach and the bay.
Lisa Jones: Thank you. That was fun. I learned more about you both. So thank you for being on the show and sharing your insights with us. We will share all the resources and links as we discussed here. And great to the audience. Thanks for listening. And please tune in again and share your comments and feedback on our site. Have a great day and enjoy a healthier lifestyle with a Nutrition411 in mind.
Michele Shuker: Thanks Lisa.
Elizabeth Wright: Thanks Lisa.
Elizabeth Wright: Thanks audience.
Moderator: For more nutrition content visit consultant360.com.