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#602: Avoidant/Restrictive Food Intake Disorder (ARFID) – Megan Hellner, DrPH, RD & Katherine Hill, MD
00:50:27
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- [00:00]
A
Hello and welcome to Sigma Nutrition Radio. This is episode 602 of the podcast. My name is Danny Lennon. You are very welcome to the podcast. Today we are going to be talking all about Avoidant Restrictive Food Intake Disorder or going by its acronym arfid. To go through this topic. I'm going to be talking to Dr. Megan Helner and Dr. Catherine Hill who have done extensive work in this area. See a lot of patients presenting with arfid, which is maybe one of the lesser known eating disorder diagnoses and maybe is sometimes overlooked and also has a paucity of data compared to some of the other eating disorders. And so having more awareness and more information about this particular topic will hopefully be particularly useful. Now, as the name of the disorder suggests, this is something that is characterized by persistent restriction or avoidance of specific food foods or food more broadly. But within that there's a lot of nuances that we'll get into that really give us a complete picture of its definition, its diagnosis and how it overlaps with some other conditions, as well as where it is distinct from other terms that sometimes get loosely attributed to some of these characteristics. Dr. Helner and Dr. Hill are the founders of athletemd, which provides medical and nutrition support for athletes and within that has a focus on eating disorders and both of their backgrounds speak to this. Dr. Hillner has worked as a registered dietitian and clinician in the eating disorder space for more than a couple of decades with a dual speciality in both eating disorders and sports nutrition. She also has a Master's in Public Health and a doctorate in Public health preventive care. Dr. Hill is a Board certified physician and has specialized expertise in eating disorders as well as relative energy efficiency in sport and after completing her medical training at Stanford University, she also served in the Division of Adolescent Medicine there and has extensive clinical experience with eating disorder treatment across a range of different patient populations. In the Episode page for this particular episode you will find a whole list of links to various publications and papers that are related to this topic. You'll also find some links to other resources that specifically discuss arfid. If you are working as a dietitian or a clinician or want just more information generally about this subject. If you are a Sigma Nutrition Premium subscriber of course you will get a set of detailed study notes to accompany this episode. They can be found at the link in the description box, wherever you're currently listening. And also at the end of this conversation you will hear the Key Idea segment. For those of you listening on the free public feed of the podcast and want to get more educational resources from your listening, then maybe check out Sigma Nutrition Premium. Not only is it the direct way that you can support this podcast and what allows it to keep running, but you get these additional educational resources like our study notes, edited transcripts, as well as the ability to suggest topics for some of our episodes, as well as a premium exclusive episode each month. So all of that will be linked in the description box where you're currently listening. You can check that and the other resources out there. But for now, let's dive into this conversation with Dr. Megan Helner and Dr. Catherine Hill. A very big welcome to the podcast to Dr. Megan Helner and Dr. Katherine Hill. Thank you both for taking the time to join me today.
- [03:55]
B
Thank you so much. It's an honor to be here.
- [03:58]
C
So excited.
- [03:59]
A
As I mentioned to you, this is a topic that not only am I keen for many listeners to hear more about, but personally to learn more from your work, both clinically and some of the underlying literature before we get to the topic itself. Maybe just to give people a bit of context to your background, can you maybe give people a bit of context to the work that you're doing? Any of your background that might be useful that connects to what we're going to discuss today?
- [04:23]
C
Yeah, sure. Gosh. So I'm a dietitian and a researcher by training and I've been in the eating disorder field now essentially since. Since I became a dietitian. So it's been about 20 years. Had a foot in research and or clinical nutrition at the same time throughout my professional journey, worked through all different levels of care, various eating disorder treatment programs. And then five or six years ago, I had the honor of meeting Katherine Hill, Dr. Katherine Hill, here while we were working for a very large nationwide virtual eating disorder treatment program and building out our the nutrition and medical arms and bonded over our love of treating athletes with eating disorders. It was something of like a subspecialty for both of us. So when we parted ways with our last employer a little bit over a year ago, we decided we were going to come together and treat athletes with eating issues virtually. So we've been doing that for a little less than a year.
- [05:22]
A
And Catherine, I'll go to you.
- [05:23]
B
Yeah. So I first got interested around the same time as Megan in caring for people with eating disorders when I was a collegiate athlete. I was a swimmer and got into eating disorder research at that time. And one thing led to another. It kind of became my research passion, became my clinical passion. As well as I went through my medical training and joined after my medical training, the adolescent medicine division at Stanford, but a few years there before joining large virtual eating disorder treatment program. And then Megan and I transitioned away around the same time about a year ago and founded Athlete md, which is the practice that Megan mentioned, which in which we do virtual medical and nutrition care specializing in athletes with eating disorders and other, you know, fueling needs. So it goes beyond just working with athletes. And both of us have had developed along the way a special interest in working with patients with arfid, which I know we're going to be talking a little bit more about today.
- [06:23]
A
Fantastic. Yeah. And exactly as the title that people are probably seeing as they click into this episode will suggest, we're going to be talking about ARFID. And the probably obvious place to start, Dr. Hill, is what exactly is this? And I suppose from a definition point of view, but also maybe as people start hearing a bit about what it is, what for you are the things that actually distinguish it from simply what people refer to as selective eating, let's say.
- [06:49]
B
Oh, yes, absolutely. And there's so many misconceptions about ARFID in particular. And so that's something I love to discuss and spread awareness on. ARFIT is still a fairly new diagnosis and condition. It did not exist until 2013 when the DSM 5 came out. Prior to that, it may have been known as neophobia or selective eating or pathologic selective eating, and patients may have gone to feeding clinics or GI doctors instead of eating disorder clinic. But essentially what the diagnosis is, eating or feeding disturbance is characterized by persistent restriction of intake that then leads to significant medical, nutritional and or psychosocial consequences. And unlike other eating disorders like anorexia nervosa or bulimia nervosa, we do not tend to see the body image concerns or the fear of weight gain that we see in these other conditions. So that is a distinguishing factor of arfid in contrast to some of the other eating disorders that we might take care of.
- [07:46]
A
And so you mentioned that we have this definition from the DSM 5. And I think anything that appears in the DSM, obviously, for the reasons to try and make it a really objective definition, can be really useful. But also maybe there's this gray area that sometimes happen in clinical practice where maybe that definition fits really well, or maybe in some cases it might be a bit too narrow, a bit too broad for you clinically when you're seeing this presentation, what are maybe some of those challenges of connecting that kind of quote, unquote, textbook definition that we might see to other patients that might be a candidate for something similar, if that question makes any sense.
- [08:25]
B
Absolutely. And you're absolutely right that there's often not a very neat box that patients tend to fit in. Sometimes we do see people having flavors of multiple different types of eating disorders. So we might have somebody with some flavors from this ARFID definition and then maybe chroma features from a more of an anorectia type picture and vice versa. And so, yes, an individual patient needs to be treated as an individual and may not neatly fit into any one box. But what we do commonly see is patients. And you asked about selective eating and how is it different? This is beyond selective eating. This is a lot of children in particular, and people into adulthood do have issues with eating. They may not have the broadest diet, they may be selective eaters, and that's fairly common. But we don't start to consider it to be an eating disorder until it is interfering with their medical health, their nutritional health, or their psychosocial health. And so once we start to see any bit of that happening, then we start to wonder, could this be something there really needs to be treated more like an eating disorder than just what we consider to be normal picky eating or selective eating.
- [09:37]
A
So, Dr. Helner, maybe to. To this to dive into that a bit deeper. When you have maybe people that are presenting in a nutrition consultation or maybe aren't even coming for a specific issue per se, but based on some of the things they're either reporting or you're seeing, you might start to get a suggestion that this could be something that needs to be checked or could be a potential issue. What are some of those things that come up clinically when someone is presenting in one of these nutrition consults that might suggest to you, okay, this is something we might need to take a
- [10:08]
C
look at several things. I mean, I think this happens across the spectrum of eating disorder diagnoses. But we might have a, like an adolescent come in who is struggling with some sort of GI issue, constipation, ibs, or they're just not keeping pace with their growth. Maybe they think that it's reds because they're starting to train several days per week, unlike little kids that might be active intentionally for an hour or two a week in a given sport. So when they start to train more intensively and they lose their energy and they become anemic, parents might bring them in thinking that it's just reds. Or they might need some help with sports nutrition. But when you dive into a little bit deeper and you look at their growth charts and you see that they're not keeping pace with expected weight gain, for example, their labs are a bit of a mess. They've been relying on a very select number of foods to meet their needs. And there's a lot of rigidity there. Then we start to look more ads and we're always kind of assessing for this. But like at long standing arfid, have they been picky eaters dating back to when they started on solids? And oftentimes the answer is yes. So yeah, and it can't. It's not just the age appropriate picky eating we have to think about. Like also, is this cause, is it causing problems? That's kind of a hallmark of arfid, not just for the kiddo, because sometimes the kiddo is, is doing just fine as far as they're concerned, but it's causing problems for the family, it's causing problems for the caregivers who are accommodating and making special meals for this kiddo. And so those are the kinds of things that start to lead us into assessing for arfid.
- [11:37]
A
If we think of some of those populations you mentioned where we're either talking about children or adolescents or even in athlete populations, there's maybe an assumption that we could probably make that in some of these situations where it's either selective eating going maybe into something that could be pathological, that then the things that might show up would be things like under consuming or being underweight or not being an appropriate weight for their age. But do we see situations where that can present in people who might be categorized in overweight categories, for example, and if so, what does that mean for how we might be trying to pick this out or diagnose it?
- [12:16]
C
I'm so glad that you asked that because it's so easy already to miss arfid or it gets dismissed as like a kind of an age appropriate picky eating. But the other assumption with ARFID is that these kids are emaciated and they're always falling off their growth charts. And oftentimes that's true. It seems to be that roughly two thirds of the kiddos and young adults that present with ARFID have some kind of either weight loss or weight suppression. And it's then it's a little bit easier to pick up. But then there are the rest of them that are not sin appearing or they haven't lost weight or they're meeting their caloric needs, perhaps they have five preferred foods, let's say pizza, chicken nugget, macaroni and strawberries or something like that. But they're able to get in enough calories to grow and maintain a weight at or above where they historically were meant to be. But their nutrition is still really poor and socially they're quite limited. So I think just going by weight status or weight loss is one of those things that often results in these cases being missed. And then you see these kids with ARFID become adults with arfid and it was never really treated or recognized. Yeah, that's an important caveat.
- [13:25]
B
Yeah.
- [13:26]
A
One thing that I'm sure we'll come back to towards the end, but I think is worth putting a pin in now, is that there's obviously a lot of people listening who are registered dietitians or nutritionists in the field or working in some degree of clin clinical capacity. And like you have both mentioned, we have something here that maybe isn't as well appreciated or understood as other aspects. And given that there is this kind of gray zone that can sometimes happen with even trying to identify that and diagnose it when it comes to even practitioners, is there any advice you would give? Is there typical points of confusion around when a diagnosis is warranted or for those that are in, let's say, a capacity working in dietetics or in a medical facility, et cetera, that you think would be useful to raise now and again? We can probably revisit these a bit later on as well. But is there anything that comes to mind that either of you would like to flag?
- [14:21]
C
Gosh. I guess the one thing that comes to mind if I think of a dietitian who is super skilled in other areas but may not see ARFID a lot, and even if they're working in pediatric pediatric nutrition exclusively, they may feel like they haven't seen it a lot. I kind of go back to not relying on weight loss or weight status as a, an indicator of severity of arfid. And one thing that they can do if they're concerned but aren't really ready to refer out to, let's say a dietitian who specializes in arfid, get a therapist on board or a physician on board who does specialize, who can give some insight as to whether or not dietitians we're not able to diagnose, but perhaps the physician or the therapist can do a nice job of teasing out whether or not this really is ARFID or sub threshold arfid, because it really does, then Change the treatment course.
- [15:11]
B
Thinking about patients who are presenting to a medical setting, if your medical provider has even heard the term arfid, they are ahead of the curve. Because most of us in our medical training, I'm not sure how, where you're from, but in the US we might get one slide on an eating disorder and our whole medical training and it's usually a very cachectic looking woman who has anorexia nervosa. And that's kind of the extent of eating disorder knowledge. And that's a very narrow definition of what an eating disorder is. And in fact, as Megan was discussing earlier, a lot of our patients don't look like that they are normal weight or at any, they could be at any point of the weight chart. And what's interesting about ARFID is it really can affect every age group, really starting sometimes in the early toddlerhood years, and can go on throughout adulthood. So it is unlike anorexia or bulimia or other eating disorders at 10%, a little bit later in childhood and adolescence or even adulthood, ARFID can really present at any time in that spectrum. So basically any medical provider I think, should be aware of its existence. Because unless you're a neonatologist, you're probably seeing ARFID in your clinic and making sure. I think the psychosocial piece is such an important one, both for the person who's experiencing this as well as for the family or the spouse or whoever else might be interacting with them, because it really can have such a profound impact on patients, on family, on significant others, and affect every aspect of somebody's life. So just kind of getting a sense of what the impact is is really important.
- [16:46]
A
I think, as with anything we mentioned a bit earlier, when we have a definition and you said not every patient is going to neatly fit in into a certain definition, there may be some aspects that overlap. And again, what we see commonly with anything like this is that there's going to be a variance between patients that have nominally the same diagnosis, but their actual present adaptation of that can look very different. Do we have any kind of commonalities of, not necessarily subtypes, but certain types of phenotype that would fit under this, that are relatively common characteristics that kind of clump together, but that maybe are like a subtype of arfid, for lack of a better term?
- [17:26]
C
Yeah, there are three, I guess you could call them like primary presentation types with arfid and they're not distinct there. There can be overlapping features and often there are. And I think that There are themes in terms of some of the characteristics that go along with each of them. So one of them, first one would be, like, low interest or a lack of an appetite. And this might be the kiddo or adult that just doesn't endorse having hunger. Hunger cues. They could be gaming all day, and they're just completely neglecting meals and snacks. And their body is. They're not listening for the whispers. They're waiting until the body's, like, screaming at them to go and get something to eat. The second would be sensory sensitivity. So that might be the kid that doesn't like foods touching at all or doesn't like, is very sensitive to certain textures of foods. Maybe they've gotten to the point where they're avoiding foods that are too hard or too chewy or something like that. Oftentimes with that, there's some kind of neurodevelopmental disorder like an ASD or adhd. And that's true. That's true with all the profile types, but especially sensory sensitivity. And then the third one would be fear of aversive consequences. So this might be the kid that highly anxious and goes through their adolescent life just not having any overt difficulties with eating. And then they choke on a hamburger and they become increasingly afraid of eating solid foods. They become dependent on supplements and maybe even to the point of needing enteral feeds to sustain them. And like I said, sometimes it's an overlapping of one or two or three primary presentation types.
- [18:59]
B
Yeah.
- [18:59]
A
And so just thinking about that, given that you mentioned these, just in general, we know that some of these neurodevelopment conditions, whether talking about ASD or adhd, are relatively common. And given some of those aspects, or even talking about anxiety more as well in this picture, if we think of these as potential comorbidities that can sometimes happen within a certain patient. Do we have any evidence, or what is kind of known at this point about the kind of comorbidities and the connection between them? Is there a. Is it just simply that they're coexisting, or is there some type of connection between. Not necessarily causality, but a sequencing between them? Do we actually have any evidence that speaks to this at all?
- [19:42]
B
Yes, we have really some good, solid evidence now that probably the majority of patients with ARFID are likely to have some other psychiatric comorbidity, whether it's an anxiety disorder, which is the most common. And that can be anywhere between a third of patients with ARFID all the way up through almost 3/4 of patients with ARFID mood disorders are common as well, like depression, which can lead especially to that low interest category that Megan was discussing. Adhd, autism spectrum and other neurodevelopmental disorders are also a big bucket here, especially with that sensory component. So, yes, there's often a lot of overlap and often there are multiple psychiatric comorbidities in addition to the arfid as well.
- [20:28]
A
Dr. Helner, if we're thinking on the nutrition side here and some of the nutritional patterns or some of the consequences of this, you've mentioned a couple already. Are there some that are maybe most characteristic, at least in your patient population, I. E. Do we most typically see this as the shortfall in energy intake that you mentioned earlier or situations where it just simply a low variety of foods or some type of avoidant behavior? All the things that we've mentioned so far, is there ones that typically are the most obvious or jump out or then from there have the most clinical consequences, let's say.
- [21:06]
C
Yeah, I've noticed this is. It's somewhat setting dependent because for example, with Katherine and I treating athletes with eating disorders, I think one thing that happened after we launched that we didn't maybe fully anticipate or appreciate is how many youth athletes we would get with ARFID who either didn't have a diagnosis or have had one for years, but there becomes like a renewed concern or a renewed interest in treating the arfid. And the way that this will often show up is the kid is so fatigued they're not able to get through their sport practices anymore, especially as their training volume increases. Now again, instead of training one or two days a week like little kids might, they're training five days a week for multiple hours. And they their typical kind of narrow repertoire of foods just isn't cutting it anymore. It's just not enough to sustain them. So maybe they're not able to get through practices. They're sleeping all the time. They're maybe losing weight, but more commonly not gaining weight is the issue, which is another reason it's hard to catch. A lot of these kids don't necessarily have the weight drop. They're just not keeping pace. Their height is hopefully increasing, but their weight is not increasing at a pace we would expect. So sometimes the growth charts get flagged by the pediatrician and then they end up with us. Or it's very well known that they have ARFID perhaps, but now this kiddo, there's a much better representation of males in in ARFID than there are in other eating Disorder subtypes. It seems to be roughly half and half, half male, half female. This might be the kiddo that's really wanting to get bigger, gain weight, get stronger, grow appropriately even. And they've struggled to manage the ARFID in the past, but now they're really willing to do a lot more to make sure they're getting their energy intake up. Iron deficiency is common. Having said that, a lot of our kids are needle phobic and they don't have blood work unless they're like on death's door and really in trouble and it's an emergency. So sometimes we have blood work, but for a lot of our ARFID kiddos, they are pretty opposed to going and getting blood work just for the sake of checking nutrient status and these other things. So if we're lucky enough to have it, usually they're anemic unless meats are kind of one of their safe or preferred foods. But that comes up a lot.
- [23:18]
B
Yeah.
- [23:18]
A
It strikes me that depending on the particular sport maybe they're into, there's certain ways, not necessarily to hide it, but some of the things that are common in certain sports are a way to maybe mask this or make it more difficult to detect. So if we're thinking of something like high school wrestler, if that person isn't gaining weight or staying underweight relative to other people, that can sometimes even be seen as an advantage to stay within weight classes, for example. Or if we have adolescents who get interested in bodybuilding, it's almost part of the culture to have restrictive diets of the same types of subsets of foods in some situations. And of course any weight class based sport, or if we're thinking of dance or gymnastics as well, where there's such a culture of maintaining lower body weights per se, with maybe restrictive practices. Of course, there's all other things going on there that in many of those cases aren't arfid. But for those maybe that do have arfid, it's going to be difficult to detect that in some of those contexts I'm imagining compared to other types of athletes.
- [24:19]
C
You're so right, and I'm so glad that you brought that up actually, because one thing I neglected to mention, for example, is like hormone suppression, which, with boys being more represented in the ARFID field, they often have kind of suboptimal levels of testosterone, but nobody's checking that or they just inadvertently haven't had blood work done. With females, it's a little bit more obvious that they're 15 now and haven't started to had their first period yet, or they had one when they were 13 and then it went away when they started to increase their training volume. And in the, to your point, in sport culture, they're bumping up against these kind of narratives around what their food and body and weight should look like, while simultaneously getting messages maybe from providers or family that they need to be eating more weight, needs to be going up. So it's confusing. They need to be eating these particular foods in order to thrive as an athlete. And they're just so far from that. So, yeah, all of those things can make it pretty hard, especially on like a developing kiddo, developing athlete.
- [25:16]
A
In terms of these situations, if we take that we have now a situation where a diagnosis has been made, someone has access to care. What are some of the best treatments we have right now that have some evidence behind them? Where's the typical starting point?
- [25:31]
B
What we have learned from really the eating disorder field, and a lot of this has been extrapolated from treating anarchic nervosa, which has of course been around longer and described longer. It's. We can take a lot from that field and learn what to do with our fit. And that's kind of what the early data is showing. So basically, the evidence base for treatment lies around having a multidisciplinary care team that should include a mental health professional savvy with caring for arfid, a dietitian, a medical provider for monitoring medical stability and medical complication, and then sometimes other treatment members as well. So sometimes we pull somebody in who has lived experience, either as a caregiver or a patient struggling with arfid, and that can really be helpful as well. Sometimes we need to pull in psychiatry, sometimes we need to pull in occupational therapy, depending on what's kind of the root or the flavor of the ARFID is looking like. So at the root of all the care is this multidisciplinary care team. And we know that's how we best treat these patients. From the therapeutic standpoint, the evidence points to DBT, AR and FBT, or Family Based Treatment, AR, the AR standing for ARFID being the best ways that we know of thus far to be treating these conditions. And these again, were kind of extrapolated from working with youth and adolescents with anorexia nervosa and have been applied to ARFID and, and often are successful. So I think some people think, oh, wow, my child has arfid or I have arfid, I'm never going to be able to make progress. It's in me, it's just the way I am. But what we do see is that people can broaden their diet. They, if they have a fear based arfid, they can have their fear improve over time. So they're, that they're able to get a more appropriate food, more a broader diet, more nutrients, et cetera, and be able to live a more normal, healthy lifestyle. It absolutely can be treated.
- [27:29]
A
And so, Dr. Hill, if we have a situation where that we do have these treatment options available, which is great, and given we have these maybe different clinical presentations, what is some of your decision making process around which particular interventions or which particular pathway, let's say, might suit one patient over another? What are some of those initial things you were trying to think through in determining what their care might look like?
- [27:53]
B
Yes, well, as Megan mentioned, sometimes somebody will present to me as the medical provider or a dietitian because they don't know where to start. Um, and so I think any dietitian or any provider out there listening, just having a curiosity and being able to say, oh, you know what this looks like it might be. ARFID is really the right place to start. So then you can start to pull in the other team members as needed. From my standpoint as the medical provider, I'm looking at the growth chart. I am a pediatrician. The growth charts are super important. Looking at both the height curve as well as the weight and BMI curves are really essential in determining really severity of their medical status and as well as looking at things like their vital signs. So we look at their, their resting heart rate, their resting blood pressure, we look at orthostatic vital signs where we have them lie down and stand up and compare the difference between those vital signs. We look at laboratory testing and often the EKG as kind of a bare minimum to collect some data to try to figure out is this a patient who maybe needs to be in a hospital today versus somebody who can continue on with outpatient monitoring and we need to pull in a mental health professional to help us.
- [29:02]
A
Earlier on we had mentioned how this is obviously something very distinct from the disorders that can tend to get lumped in around say anorexia itself or bulimia or even just more broadly body image disorders. And so in this situation, the, I suppose from the patient's perspective, it really is just this avoidance of the food itself or certain types of foods. And so then the challenge, I guess, in practice is if the goal is to gradually get them not only consuming more variety or certain types of Foods or not having the anxiety around that, how is that structured in a way that isn't putting almost more pressure on the patient to say, hey, you just need to eat more. And this is something that causes them anxiety already. What does that look like in terms of how we get them to increase that variety without feeling there's this pressure of someone is telling me I need to just eat more different types of foods.
- [29:56]
C
Yeah, I think this, it goes back to. You had me thinking about their trajectory, the patient's trajectory, if they were to land with maybe someone who doesn't specialize and maybe understand ARFID very well.
- [30:06]
B
Very well.
- [30:07]
C
No judgment that happens across dietetics, but we see that quite a bit. And just to clarify, when we talk about the evidence based treatments, those are behavioral treatments usually administered by a therapist, but there are no FDA approved medications for treatment of arfid and there aren't any really evidence based nutrition interventions other than nutritional restoration being kind of the cornerstone of treatment across eating disorders, whether that's weight restoration or just normalizing their eating patterns and trying to meet needs within their, within the foods that they're willing to accept. But yeah, how not to flood them. So there are a couple of techniques that are. First, we want to always consider meeting them where they're at. And it's not just as simple as telling them what to eat or how much to eat. And then it's going to happen two different courses here. If we're doing family based treatment, we're usually charging or tasking the parents with refeeding the kids. And we would recommend doing that using their preferred foods at first, at least. So the idea is, okay, you're eating seven foods, let's eat more of those seven foods in, in a way that'll allow us to catch up with the energy needs, for example, but let's say that they're meeting their energy needs just fine. And it's more so an issue of very limited variety. Again, sometimes it's both. One of the techniques that's often used, it's called food chaining. And it's essentially what you're doing is pairing a familiar or known safe food with a new food or kind of taking gradual steps toward casting a wider net so that they can experience different types of foods. So we wouldn't jump in a kid that doesn't eat fruit, for example. We wouldn't jump from zero to a banana or something like that. But perhaps they will do plantain chips, maybe they'll do banana chips or perhaps they'll do strawberry Jam, but not strawberries. So maybe we progress to a different brand. If there's a tendency to be fairly rigid around the types of brands they'll accept, maybe we try a different brand that's a little bit more chunky. Then maybe we try strawberry blended into a smoothie or blended into a yogurt, and we see how that goes. We might spend a long time on one particular food, and it feels just like these minute baby steps. Sometimes it takes multiple, multiple exposures for a kiddo to find, like, a new food acceptable, but that's usually how it starts. So we. We Definitely avoid the 0 to 100, and we try to make these kind of gradual shifts that hopefully don't feel too overwhelming for the patient.
- [32:29]
A
Dr. Hill, when we think about this in terms of what success in terms of treatment might look like, and we start to get into concepts like, what is remission, what is recovery? What would a successful treatment followed by a maintenance period, all these types of things that we might want to look at with Arafid. Specifically, how should we think about these things? What do those things mean to you and what you might be trying to achieve with a patient.
- [32:52]
B
Yes, great question. So one of the first questions that I'm looking at is, is this patient weight suppressed or growth suppressed? And we need to restore them, weight restore them. As Megan mentioned earlier, not every patient with ARFID is weight suppressed, but oftentimes they are. And oftentimes there is a sense of urgency that we need to bring in treatment, especially if we're talking about a young person or a growing person or.
- [33:16]
C
Right.
- [33:17]
B
There's often a critical period for growth, and we know that the faster we can weight restore their body and also their brain, the better chance we have of a recovery, of reaching recovery and being able to say, I am no longer struggling with this, or I'm struggling with this to a much lesser degree than previously. And again, this is sort of borrowed from the literature for interrupting nervosa. But we know that if somebody is able to make about a pound a week of weight progress in the first few weeks of treatment, first four weeks of treatment or more, then they have better outcomes. So we know that that is a really crucial outcome measure is weight gain per week. For patients that do need weight restoration, and for a lot of different reasons, when somebody's brain is malnourished, they're just not. They're more cognitively rigid. Oftentimes their mood is depressed. Oftentimes their hunger signals are suppressed, which makes it even harder to eat. For somebody who Already isn't inclined to get in enough food. When we can renourish their brain almost, it's almost like the light come back on and they're able to have more hunger, feel better, better mood and able to just get in the food they need in a better way. So sometimes that may look like relying on supplement boosts ensures shakes like that for the short term so we can get them out of this danger zone of malnutrition and medical complications. And then we can start working on the broadening of the diet and the food chaining technique like Megan was talking about. So oftentimes there's sort of this short term treatment where we're trying to stabilize them medically and weight restore them and then we can work on the broadening of the diet which as you can imagine is a bit more long term, complex process to get them to the point where they're eating a wide variety of foods.
- [35:02]
A
And presumably even at that point it's a continued ongoing thing, I would imagine. It's not like we get them back to a certain type of diet and forget about everything they have maybe learned up to that point. It's a consistent management with some of these successful techniques that may have worked for them.
- [35:18]
B
I guess that's right, that's right. And often there's sort of a maintenance plan that somebody may need to be on. And sometimes there are hard times with any major life transition. You know, someone's going away to college or going to the workforce for the first time or they get sick or they get a really bad flu and they lose weight, sometimes things kind of come back and we have to get back to a more intensive type of treatment again with the goal of sort of weaning off if somebody is improving in their clinical status.
- [35:45]
A
If we think about the evidence base, because we mentioned it a couple of times, and it's great that in certain, for certain questions we do have some good evidence. In others you've mentioned, there's just kind of, we borrow some of the literature from other areas and that can help inform it. A lot of it is then obviously probably driven by clinical experience and piecing some of this together because there's maybe less of a research focus on it compared to other topics. So given that there might be some areas where it would be great to get some better quality research and answers to these questions more concretely, are there any particular research questions either of you would like to see answered or tackled by those in research now that would really help us get a broader understanding of this and really Help From a
- [36:29]
B
clinical perspective, I think the topic of weight restoration is one that I, I know both of us feel this way that we'd love to see studied more and answered more concretely in research studies because that is what our clinical experience shows. And anybody who has worked in this field will tell you the same thing that oftentimes we see people who are inadequately weight restored or they start moving towards broadening the diet prematurely when somebody's brain and body is not able to really cognitively participate appropriately in treatment and physiologically not a place to be able to get in and make progress that they need to make. We all often do the inadequate weight restoration and when and versus full weight restoration when we get somebody back to the BMI or that they used to track at as one example, we do generally see things turning out better, better outcomes. So I think if now it's kind of a wish list of a study we'd love to see. But based on clinical experience, we think we know how it would turn out.
- [37:31]
C
The other thing I think you may have noticed, we were talking about some of the prevalence estimates in the beginning. They're a bit of a mess and they're all over the place. And that's in part due to it being a newer diagnosis. It's all of, I think 13 years old at this point and just inconsistencies in how ARFID was diagnosed or identified. A lot of times they were using chart review to identify patients with ARFID before it was a diagnosis. So getting more clear on the prevalence estimates would be great. And then also better understanding the kind of some of the key features of the different profile types, knowing that they're not like mutually exclusive, but and then how might they respond to treatment differently or similarly? I think that would be something that'd be really interesting to unpack and understand a bit better.
- [38:15]
A
Fantastic. To start pulling some of this together. I'd love us to revisit a couple of things that you have both already mentioned and put forth, but that I think are really crucial for people to take care when they are thinking about maybe some of the practicalities of that and that is the points of potential confusion or overlap in some of these symptoms with other things. So for example, people who might then be thinking this worry of any type of selective eating they or someone they know has suddenly might be a candidate for diagnosis, which could be the case or may not be. So making sure we know how to distinguish between simply someone who has maybe now and again, some, let's say certain preferences for Certain foods or what we might not think ourselves is particularly quote unquote normal versus actually something that meets a diagnostic criteria. And then the second, particularly I think for people who are working as nutrition professionals who want to be able to, even if they don't have expertise in this area, to be able to maybe notice some signs where they could refer that to an appropriate specialist to get a proper diagnosis, but are now seeing maybe some of the symptoms that might overlap with other areas. So they may have heard of like relative energy deficiency. And so that might be a candidate where they have a youth athlete who is not menstruating or is underweight compared to what they were or is losing weight unexpectedly or someone else has a certain eating disorder that that might also have similar types of symptoms. And so it becomes a minefield to try and work through. And so again, at the risk of this being a very broad question, to leave people with a kind of clearer picture, what advice would you give to either of those groups of people around, not only noting the differences between that and being clear on that and then maybe where a referral is recommended.
- [40:02]
C
I think first just knowing that, I mean one of the hallmarks of ARFID is not just the pickier selective eating, but is it causing them problems? Basically, is it causing problems medically, socially, Is it causing problems for the family units or in adulthood, Is it causing problems social issues? Are they finding themselves isolated because of that? So I mean that, that can be one differentiating factor and even that might be kind of trick. Or is it related to food insecurity for example? That might be a little bit tricky for a non specialist to suss out. So perhaps bringing on someone again like a therapist that's able to diagnose and go through some kind of a structured clinical interview to be able to determine whether or not it's ARFID or something else. Maybe they just need the support of a speech language pathologist or an ot Age appropriate picky eating. I mean another hallmark is that that usually improves over the course of the years from ages 2, 3, 4 all the way up until ages 5 to 8. But if it's stable, if the kid is 12 and is still eating 6 foods and really hasn't expanded beyond their preferred foods from age 5 or 8, that's another indicator that there may be an issue. Even if growth and weight are tracking as expected, expected. So just the persistence of the eating struggles can be one indicator. It's normal for kids to come in and out of being selective with food doesn't mean that they have ARFID when they can't, when they don't grow out of it and it begins to cause them problems, then that can be kind of a quick and dirty check for the provider. There are also really great resources online Feeding Feeding Matters. I think it's formally called the Pediatrician Feeding Disorder alliance or something like that. That's a wonderful site with all kinds of information about pediatric feeding disorders and arfid. Not to suggest this only happens in kids, but that can be a good one for helping them understand what it is that's driving some of the unique eating behaviors that they're seeing, I guess
- [41:56]
B
to echo off Megan here. Oftentimes we are seeing medical, a medical condition triggering an ARFID or some type of difficult to assess whether what's the chicken, what's the egg. So for instance, a child may have been a preemie who was tube fed for the first several months of their life and they didn't develop their oral, motor and sensory experience in the typical way. And so we might see somebody like that being more prone to arfid, or we might see somebody who has an undiagnosed GI condition like inflammatory bowel disease or celiac disease or food allergies.
- [42:33]
C
Right.
- [42:34]
B
That can then lead to ARFID like behaviors. Though sometimes you have to do a, a medical rule out of some other things as well before we can say, oh yes, this looks like ARFID versus this looks like ARFID secondary to a medical condition. So I just wanted to call that out as well and to circle back on your, your question about reds versus an eating disorder like arfid. This is something that me and I are really passionate about working with because oftentimes we do get athletes coming to us saying I have rids. And then we dig a little deeper and we figure out, hey, wait a second, this, this kid is only eating six different types of foods and they were tracking at the 85th percentile height and now they're at the 45th percentile of height. What is going on here? So the growth charts are such an important key, especially in our pediatric populations, for picking up conditions like this. Again, not everybody will fall off their growth curve, but it is a common tide. If we see somebody after the age of two where people tend to stay on their percentile line for height, weight and bmi, we start to see them crossing percentile lines and sometimes even we see crossing up percentile lines and weight even with arfid. That can be a red flag that, you know what this is a patient that maybe we should get assessed to see if something else might be going on because it often is an eating disorder like ARFID and those fever.
- [43:54]
A
That's such a great point because I think anyone who is competing in some types of sports and is a, let's say a youth athlete because thankfully something like energy deficiency is becoming more well known and the importance of fueling maybe there is that tendency for someone who then notices or maybe their coach or their nutritionist notices. There's this person is majorly undereating. If we just stop there and say oh well, it's just because they're doing so much activity and they're not fueling enough as opposed to thinking well why is that the case? It may just be down to some other factors that they're not paying attention or they're just doing so much activity or there could be some other type of issue going on underneath. Whether that's ARFID or other types of eating disorders could be explanatory and it's not. That has to be one thing or the other there the energy deficiencies is being driven by something else. So that's a really useful point as we start to. To wrap up here before I get to maybe stuff. Final question to close us out. Can you let people know where they can dive into more information about the work that you're doing more broadly, if they have interest in this topic or other aspects of your work that they might be interested in. What are some of the resources online you would point them towards?
- [45:03]
B
Yeah, so I think a few resources nonprofits that I like to highlight are for ARFID specifically. The ARFID Collaborative is a great resource with a clinician directory and lots of resources for patients for family. There are also for parents a website called FEET which offers some really excellent resources that are evidence based for all types of eating disorders. Focused on caregivers of adolescents with eating disorders. Fabulous resource for athletes in particular for female athletes there's Lane9Project and for male or female athlete Project Reds. Because oftentimes athletes, as you kind of alluded to, may find this red diagnosis more palatable than an eating disorder diagnosis. So that often is what gets them to care. And they may be more likely to seek care if they are able to access an athlete friendly provider. Which is one of the reasons why we wanted to start our practice which is called athletemd and it's spelled with a little play on words. A T H L E A T. The E A T being intentional MD so our website is Athlete M D A T H L E a t m d.com and you can find us on LinkedIn Instagram as well. We try to post evidence based material as often as we can and have a blog going and we'd love to serve as a resource if there's any questions out there on arfid or on eating disorders or reds in general.
- [46:25]
A
In athletes and knowing the audience, there is quite a lot of engaged professionals I'm sure will be coming to you with questions or their own input as well. And for everyone listening, all of that will be linked in the description box. We're listening right now, so you can go and check all of those resources out. As we come close to time here, I'll bring us to the very final question that we end the podcast on, which of course can be separate from anything we've discussed today. If you wish, I'll come to both of you for your own individual answer on this. And it's simply if you could advise people to do one thing each day that would have a positive impact on any area of their life, what might that one thing be?
- [47:06]
C
I guess what comes to mind for me is taking steps, any steps that you can toward respecting your body and not being at war with your body.
- [47:14]
B
Yeah, I guess in similar theme, the two biggest things that I see that people are doing that are counterproductive are not fueling properly, especially for physical activity and not sleeping, not getting good quality sleep. So I think that whether you're an athlete or non athlete out there, if you are able to fuel your body properly and get enough sleep, you're going to be way better off.
- [47:34]
A
Dr. Megan Helner and Dr. Katherine Hill, thank you so much both of you for taking the time first of all to come and talk to me about this, for all the materials that you've provided me with as well. And like I said, I've been able to learn a lot about a field that is underappreciated and maybe misunderstood in many areas, including within nutrition and dietetics. So thank you for that and for the conversation today. I've really enjoyed it.
- [47:57]
C
Thank you for having us. This really exciting. Thanks.
- [48:14]
A
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