Episode 8 – Discussing the 2025 Pediatric CVS Treatment Guidelines with Dr. Katja Karrento

Welcome to Episode 8 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS). 

Join us on this episode as we explore and discuss the 2025 Pediatric CVS Treatment Guidelines with Dr. Katja Karrento. She is a Professor of Pediatric Gastroenterology and Director of Research and Cyclic Vomiting Syndrome Programs at the Medical College of Wisconsin and Children's Wisconsin. A leading expert in pediatric CVS, Dr. Karrento was instrumental in developing the first-ever dedicated treatment guidelines for CVS in children. In this conversation, she walks us through this landmark milestone in CVS care, what makes these guidelines different from prior consensus statements, and how they were designed to be accessible and actionable for clinicians caring for pediatric patients with CVS. 

For Resources Discussed in this Episode Please See Below: https://www.cvsaonline.org/  

Link to the Treatment Guidelines: https://www.cvsaonline.org/for-health-providers/treatment-guidelines/ 

Support the show here and more: https://www.cvsaonline.org/get-involved/donate-to-cvsa/

Transcript

SPEAKER_00 0:12

You're listening to episodes of a podcast from 60 point in Central Society. Please be aware that the content of this podcast is created for general, informational, and educational purposes only. It is now a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding medical conditions. The opinions, perspectives, and experiences shared by our guests, including medical professionals and scientific researchers, are solely their own and do not necessarily represent the views or official policies of their respective institutions, employers, professional organizations, or any other entities they may be associated with. Furthermore, neither the Cyclic Bombing Syndrome Association, its board of directors, employees, volunteers, hosts, or anyone associated with this podcast takes responsibilities for any actions or inactions on your part based on the information provided. We do not endorse or recommend any specific tests, positions, products, procedures, opinions, or other information that may be mentioned.

SPEAKER_01 0:47

Thanks for joining us today on episodes of podcasts by the Cyclic Vomiting Syndrome Association. Each episode, we hope to bring a different CVS perspective or information about CVS that will increase awareness, spark conversations around CVS, and ultimately change the way that cyclic vomiting syndrome is seen and understood. I am your host and president of the Cyclic Vomiting Syndrome Association, Bolinda Killian. I am also a parent and caregiver to a person impacted by CVS. Joining us today, we have Dr. Katya Carento. For listeners who may not know you yet, Dr. Carento, can you introduce yourself and share a little about your work with Pediatric CVS?

SPEAKER_02 1:28

Yeah, I'm Katya Karento. I'm originally from Finland. I'm um a professor of pediatric gastroenterology at Medical College of Wisconsin. I work at Children's Wisconsin Hospital, where I run a pediatric cyclic vomiting syndrome program. And I'm also the director of research within our pediatric GI division. So I have worked for many years now in the cyclic vomiting or CVS program, seeing patients from really all over the US and even internationally. And my research closely intertwines clinical care with research and trying to advance both diagnostic and therapeutic management and improved care for uh kids with CVS and other brain gut disorders.

SPEAKER_01 2:20

Thank you. This past weekend was DDW or Digestive Disease Week. So it's been roughly a year because I remember we were panicking trying to get enough printed to take uh with us last year to DDW. So figured it was a great time to kind of uh revisit and talk about them a little bit. Many listening to the podcast today may not be familiar with the term guidelines and probably don't know how they can impact real-world care. When my family was looking for answers in a diagnosis, we took the 2008 treatment guidelines to my son's doctor and asked if CVS could be what was going on with them. So I know how impactful having these tools can be. Can you explain how the treatment guidelines uh can impact what happens in clinics, emergency rooms, urgent care, how they can change or alter the care that uh patients get, especially for a condition like cyclic vomiting syndrome?

SPEAKER_02 3:15

Yeah, having um set algorithms, uniform um evidence-based treatment guidelines that are really built upon available data. And in this case, actually extrapolating from a related condition migrant headaches, therefore bringing in even more scientific data and really sort of boosting the evidence for different treatment is crucial for uh advancing patient care. And and I agree with you what what we see, what happens when we um distribute these guidelines publicly and and all over all over the place. Uh, we have a lot of patients who seek out help, and they might be in in the fields of uh Idaho or somewhere in Arkansas, and they come to us and they have talked to their closest doctor and say, Do you you know, can can we get this treatment? And and they seek out uh care that's um that's that that's evidence-based, and and they don't even necessarily always come to us because these doctors are adopting these guidelines um widely. I mean, this is really too early to say how how it's going to go and how many are going to use it. But we saw that with the 2008 consensus statement, which is not a formal guideline, which is experts' consensus-based opinion, kind of more, uh, and a summary of some data. Uh, and people were using it um everywhere. So it may take a few years to really spread, but these guidelines are set in evidence, and we are hoping that uh primary care providers all over the country, even internationally, will adopt the care. And and again, it's evidence-based and is the um an algorithmic-based care for children with CVS, and it's it's it's so important.

SPEAKER_01 5:02

So, is that why it was important to kind of revisit and uh update them, really list them as as guidelines?

SPEAKER_02 5:09

Yeah, the uh the difference between an expert consensus statement and formal uh evidence-based guidelines is that the guidelines to be able to call them guidelines, they have to be done by a very rigorous systematic approach. And this is called the grade approach. And we had um uh a grade, and this is a long term for how we uh grade evidence and how we systematically turn that evidence from you know thousands of papers, nail it down to the most relevant papers with in this case was 130, um, and then extract the data, um, summarize it, uh, criticize it, and put it actually. We use a software called the grade, great software, uh, that then actually, based on an expert panel also who needs to give input and great things and make certain conclusions, but it's a very rigorous process of then extracting all this evidence and and and and and scientifically grade it. And so again, and we had a a great expert from McMaster University uh in Canada leading this effort, and it took several years. So, this is um um really the way you have to do guidelines if you want to publish as a set of guidelines that will change clinical care.

SPEAKER_01 6:25

Perfect. What do you think has changed the most in our understanding of CVS since 2008?

SPEAKER_02 6:33

I think the extrapolation of data from pediatric migraines, so migraine headaches world, it was there, but it wasn't it wasn't formally there. So we'd borrow some things, we'd use certain meds, but here we are just actually taking all the evidence that there is, applying it to pediatric cyclic vomiting, based on the fact that 80% of kids is are are thought to have migraine-related cyclic vomiting. Maybe all of them actually uh it applies to, but it's hard for me to say for sure. And so the key here is that that brings in very strong evidence that we don't have, we don't have those strong papers in pediatric cyclic vomiting. It's a smaller field, but we bring in very rigorous data from migraine and we say, here you go, things like beta blockers are quickly elevated to a first-line or or very um evidence-based treatment. And they were in the prior consensus statement, but they were more or less second-line therapy, and that was simply based on expert opinion and anecdotal experience among the experts.

SPEAKER_01 7:45

So we're aligning very heavily. Well, I wouldn't say very heavily, but uh horizontally to um migraine.

SPEAKER_02 7:54

Yeah, yeah, we are, and and I think it's working. So we have practiced these, you know, obviously these guidelines, they they took like four years for us to complete, and um, and I obviously knew what's gonna be in them for a while. And so I've been practicing by this care for at least a couple of years, maybe longer. And um I think it has substantially altered the way we uh manage children. What I actually should highlight even more, and what has made the most difference for care for children with CVS is the top recommendation of non-pharmacological interventions for children. So that is this includes behavioral intervention, which unfortunately is not just one simple thing. It can involve a lot of things. So the migraine data involves studies using cognitive behavioral therapy, relaxation strategies, even just education about your disorder, uh, hypnosis meditation, music therapy, you name it, but all these behavioral interventions have very strong evidence for uh working in in children with migraines, and therefore made it to the very top as a first-line therapy for all patients. And and we have been lucky, and and and I always say it's easier said than done because people don't have uh psychologists growing on the tree that can provide you know effective hypnosis. Um, but there's many new tools that's with with AI and with virtual care. This is rapidly changing. There's many new tools. So, with some guidance, um, and it really starts with the doctors kind of and providers turning their brain to not leave those therapies as the last of short. Now we've failed all these drugs, and there's not like a just the first drug quick fix. We start with these interventions, and that's just um really spinning the wheel and and turning things a little bit um upside down almost, right? Because I do see that this is missed. This has been missed in clinical care and uh this is changing for a long time for all brain gut disorders. And even when people understand it and know it, it gets kind of not done. So I think a guideline statement that elevates that to the first line of care, it is important both for providers and for patients, because sometimes there's difficult to get buy-in from families on this too. Right.

SPEAKER_01 10:18

So it's this this is something that I I highlight a lot, right? Because with um my son, it wasn't necessarily just seeking care for CVS, but the whole supportive of it just being a chronic condition, right? Because a lot of people have issues with it being a chronic condition. And, you know, seeking um psychological care can really help support that, right? In your treatment coping mechanisms. I feel like it's just supportive. It should be included in care. It shouldn't be as stigmatized as it is.

SPEAKER_02 10:51

Um it should be included in care in many different conditions, right? Which is the the field of medicine in the United States is is kind of realizing, right? But and particularly disorders of gut brain traction and CVS is a prototype, uh, it is so important to use behavioral interventions. Um I I fully agree with you. You see, so what's so important for CVS is that that aspect of the provider is trying to figure out, you know, an abortive regimen with meds and uh do this the patient needs a prophylactic regimen, maybe have to write an IV intervention protocol. This takes a ton of time to even just explain the disorder and go through all these potential treatment options, and then this a non-pharmacolonical aspect and trigger avoidance. So uh the fact that that we know as providers we need to do that, we don't have the time. So having another provider and and and um really um uh justifying and and and and advocating for having a psychologist, a trained psychologist, is a huge change in care for these patients because um I might have five minutes to spend on this where the psychologist will sit down and go through how is the family stressed, how are people, how are they coping with this, what happens when an episode comes, what do the parents do, how is to sleep? Sometimes a psychologist sitting down and figuring out what really happens with the child's sleep and regulating that, and then the de-stressing when the episodes come, and it's terrible and disabling, but like understanding certain certain kids and families when they don't know what it is and seeking answers, there's a huge amount of stress. So just the educational part of sitting down, understanding what goes on in in each family, and it could be so variable. That is care right there, and it's it's the first care that needs to be done, right?

SPEAKER_01 12:43

And come continue, yeah, because you don't you don't know what happens outside of your 15-minute appointment, right?

SPEAKER_02 12:50

When you're seeing a physician, you know, we've seen families who are, you know, if this episode comes on, everyone screams and runs for the puke bucket and panics, and that doesn't help the child, right? Like easier said than done, and uh and things like that that we can just kind of educate and intervene. And and sometimes I have a talk with a child depending on the age. Like, what do you think is going? Like, are you are you worried? Are you do you think you're gonna die? Like we've been scanning your brain, and and then I say, Well, guess what? You're not, and I know you're not, um, because you have all the studies done, and and you can just tell they relax. There's a lot going on, and especially preteens, that they don't tell their families even. So and our psychological, our CVS team, which uh headed by Julie Banda, nurse practitioner, uh, Kimberly Brown, uh PhD psychologist. We have collaborating in our pain clinic, Carrie Hinesworth, um uh are working really hard to um do qualitative uh interviews with families to understand the burden of CVS because we we recognize when we do clinical trial that we're not really capturing the whole dynamic of what happens, right? We can ask all these questions. How many, what's the frequency of episodes? We're not capturing the true burden of the family. So we understand that the anticipatory anxiety of an attack coming and families can't plan their vacation. People tell me, like, oh, we couldn't even go shopping, we can do anything as a family, and the stress that that puts on the whole family. Um, how do we capture those parts of the disease when we evaluate a treatment in a clinical trial? So we're working really hard actually with migrant experts to um figure this out.

SPEAKER_01 14:34

That's that's awesome. If you um so talking about the the guidelines and and that that is, we're trying to capture that, right? Um, address that. Uh we talk about sleep, trigger management, supplements, neuromodulation. Um, if you talk to my son, the most important like lifestyle change that he made that directly impacted his CVS was sleep modifications first, uh hydration second, right? Making sure he's not dehydrated in between episodes. Um Do you think this means we're moving more toward a comprehensive toolbox approach to CVS when we're trying to capture all of that, make sure that it we are looking outside because again, that 15 minutes doesn't capture a whole lot, right? We go to travel, it takes us three days before traveling, you know, prepping to be able to do anything. It does, it impacts everything. And and I really appreciate that you're talking about the whole family because it did. It it altered everything for our entire family.

SPEAKER_02 15:35

Yeah, I think uh uh yeah, the care needs to move more towards a comprehensive toolbox, like everywhere, you know, not just at the cyclic vomiting center in Milwaukee, where we have these tools. Um, many centers have some tools, and and in each need, you know, providers need to figure out how to put these pieces to pieces together to improve care. You know, hospitals care about their patient satisfaction, and this is needs to be uh integrated into care. And I think more and more people, uh more providers within the field of neurogastroentrality are really recognizing this. And uh it can be a battle though to make that sort of almost like a dream come through. How do I get a psychologist to practice, you know, practice clinical care with me? But it needs to happen to improve care. It is very clear, and it's very clear when we put the medications on the table. The medications have been used for decades in children, and we put the risk and benefit ratios on the table, we present the data, and we see what what concerns there are with drugs like gametryptaline. So sort of shouldn't say lawlessly, but um a little bit unresponsively just prescribing that to five-year-olds, seven-year-olds. And we do that with the good intent, but uh these guidelines are putting things more in perspective, like where is the data rather than practicing by what he or he says, she says, this is what's evidence, and these are the concerns with different meds, and therefore you should not use them until you have failed and tried these other things.

SPEAKER_01 17:11

Right, because it's a it's a spectrum. I think um being involved in like the guidelines and you know, listening to the conversations around it, I kind of wish everybody had that access, right? Because it it really gave a kind of a a backdoor look um into you know the the thoughts around it. Because yes, a lot of people come to us and are just like amatriptalin, the side effects are just, you know, they're they're afraid to use it, right? People are looking for more options to get away from the heavy medications. Um NSAIDs, advil, right? Stuff that you guys talk about, this being almost like a first line of defense. And I will say it didn't come into um even like a thought process for us anytime we talked to anything, you know, any physicians about treating, it was not a first line of defense, and it really should be. Now that my son is kind of more under control, we got back to yes, this that's our first line of defense. He uses, you know, a leave or some sort of other um NSAID. And you guys really talked about that and went, I've we this needs to be used more. And I know it's used, um, talked about a lot on the um community support page, some of the community groups, especially when it comes to um catamenial CVS or Munci's tide CVS. Um but it really needs to be used more overall. Is that kind of what you guys were were leaning toward with that?

SPEAKER_02 18:38

Yeah, I'm I'm glad you brought that up because it's a fine example of how you know we we bring a recommendation from uh we bring up the evidence from migraine uh studies, and we see uh the enormous efficacy that is behind the simple use of, and when uh when blindness is NSAID, that means uh ibuprofen, motron, advil, lots of different names for it, but non-cerol or anti-inflammatory drugs. Um 20 randomized control trials support the use of NSAD plus shriptans, those are um common drug drugs for migraines, but to use them in combination and to use them at first onset, this data shows a strong uh recommend is a strong recommendation based on moderate evidence. And that is a evidence level that's very difficult to achieve in guidelines work unless you have strong, strong uh evidence in many studies saying the same thing. So um, and it's a it's a really good example for like um, well, we already knew that we were using you know zoomatryptin nasal sprays, and but were you actually telling, asking your patients if you were taking Motron? I mean, I wasn't even. I I I knew this, and I was kind of assuming that they take ibuprofen and tyanol, and but but when you start talking to them and you realize, oh boy, we weren't actually doing this, and we weren't educating them properly uh with the um with the simple things that over the counter that has such great efficacy for aborting migraines. So yeah, and in younger kids, it could just be ibuprofen, uh, and it can the best the best data is really in support of a tryptan, such as sumatryptan or risotryptin, and really any tryptin in combination. The study shows sumatryptin in combination with neproxen, which is a stronger NSAD. Um, and and we're not using these like like this is one-time use, right, with an attack. So we're not overusing it. We don't have concerns about as long as you educate patients. Um there's not that that other drug concern of these agents because they're just one-time use with the um isolated episode. So um this is something that really needs to be um emphasized more by providers.

SPEAKER_01 21:02

Definitely. That that is uh now my first, my son's besides his anti-emetic, anti-emetic first, but um is with na proxin is is his first definite go-to. So that has been so very helpful, but it took us a long time to get there. So I was um very excited to see that highlighted uh in the guidelines. Um what recommendations do you feel um or do you wish had uh stronger evidence behind them? Because I know you know we're talking evidence-based versus consensus, because you guys, you know, you guys treat a lot, you know what works, but there's not always the evidence behind some of the things that you guys use. Is there something you wish was had more uh evidence behind it?

SPEAKER_02 21:48

Oh, absolutely. I I mean I want to emphasize that many, most of our, except for the ones I mentioned, you know, at the insets and triptens, uh most of our recommendations. End up being based on low quality evidence or very low quality evidence. And that doesn't mean these things don't work, right? It just means that we don't have enough evidence to say it's not strong evidence. So do I wish, yeah, I wish I wish there were stronger trials and randomized control trials with placebos on agents, particularly a prepitant, which is a fantastic medication. It's an NK1 receptor antagonist used for chemotherapy-induced nausea and vomiting. So originally, it's actually FD approved for that indication, even in infants. And it's what I call a very clean medication. It doesn't have all these other effects on receptors in your brain, like even 5 HD3 blockers like ondencetron has. So it's probably our most effective and safe agent, uh, to be honest, in my experience. And it's uh entirely understudied in cyclic vomiting. I mean, there's some retrospective studies. That's it. So it it's highlighted in two of recommendations, but the evidence is low because it's just not been done.

SPEAKER_01 23:10

It hasn't been done.

SPEAKER_02 23:11

So yeah, uh, hopefully somebody does a randomized controlled trial with with that. And um, I think it was done after the guidelines, right? There was nationwide afterwards. Um I don't think I've seen it in publication yet. Have you? Yeah, I have.

SPEAKER_01 23:28

It was yeah, nation nationwide. I think children's did it. Okay. Well, well, we will say that that is amend because most people know as amend, right? We talk about it as a propitent, but yep.

SPEAKER_02 23:40

Um and then sadly we we we struggle with uh reimbursement for that medication.

SPEAKER_01 23:46

Yeah, that needs to change. Although there has been some changes uh on with Merck in their patient assistant program in the last week. Um, so hopefully, you know, we'll get some more uh but you know more than I do before educate me on that. For that, yeah. It's uh yeah, when I saw it, I kind of panicked and was like, what? But they lost the patent um for uh the the time of the patent from my under my understanding. So uh there's big changes that are kind of coming with the patient assistant program, but that means it's also gonna open it up to other people being able to make the medication. Okay. Um so we'll we'll see how that plays out. I am watching it very closely.

SPEAKER_02 24:27

Yeah, yeah. And I also wish there were more studies, you know, directly studies in pediatric cyclic vomiting on all these behavioral interventions, right? I mean, there's there's really none uh on um meditation, on hypnosis, on um, yeah, a variety of mindfulness intervention and modulation as well. I mean, this might certainly be coming or running on at our center. So um I I think uh the grade guidelines also open the door to where does the research need to go? I mean, there's even sections in in the guidelines, future directions like what needs to be done, and the expert panel gives gives guidance. So it's all there.

SPEAKER_01 25:07

Just need to get to work on it. So no, I do um I just want to pop back to amend for just a second. And what you're telling people is really this the amend is safer than a lot of the other drugs, less side effects, and I think that's really where a lot of us um want to go anyway, right? Because a lot of times those medications make you feel worse than what you already did.

SPEAKER_02 25:29

So let's remember it's hard to assess you know side effects with a drug that you're using two days, right? Or three days in a row.

SPEAKER_01 25:38

Yeah.

SPEAKER_02 25:38

And you're in during a period when the patient's really sick and and out of it anyway. So uh it can cause fatigue. Um, and uh it can, I mean, a variety of things are really listed with so many meds. The really only thing I've seen is fatigue um uh clinically, but we're not using it that often long term. We're starting to use it more and more as a controller medication three times a week. So um hopefully we learn more. But I in my experience is it is very safe. It is important to educate um females about that it uh interferes with um estrogen-containing hormonal contraceptives, and it also has a lot of drug interactions, which provider needs to know.

SPEAKER_01 26:25

Perfect. I appreciate you bringing that up. Thank you. My other thing was the cognitive behavioral therapy. You're talking about other um behavioral, non-pharmacological interventions and the guidelines. Um I really felt like um CBT or cognitive behavioral therapy could really be helpful for a lot of patients, even finding their triggers, right? Because not a lot of people know their triggers. It takes a little bit to even find, you know, find all of them, because there can be more than one. Um so you think this is this is kind of I I'm concerned that bringing in and really highlighting uh a psychological aspect is going to um cause dismissal of symptoms, right? People are gonna say uh or symptoms or the condition itself, people are gonna lean heavily into it being a psychological condition versus um, you know, a functional one. Um can you kind of clarify um the role that these supports um play in a disorder like CVS?

SPEAKER_02 27:30

Oh yeah, that's uh I mean that would be an entire misconception of everything. That's um But I'm seeing it already. Yeah, I mean I know I know this is not your opinion. I think your concerns maybe valid. CVS is not a mental health problem, period. Cyclic vomiting is an autonomic nervous system imbalance in um many, if not all. We don't know the answer to that, but we have shown um significant um alteration. So this based on EKG, so these are surrogate cardiac or hard metrics. We've shown that their um vagus nerve is imbalanced when they're feeling healthy. Uh, adults, Dr. Venga Tsin, have shown the same thing, and there's small studies before that to show that. Um, patients who have an autonomic nervous system in balance are by default more anxious. And so I explained that the families, like their yin and yang, is a little bit off and their fight or flight is elevated. That doesn't mean this is a mental health condition that needs to be, you know, send somebody to a shrink. No, this means that they're more sensitive. So their threshold for this whole system sort of breaking and falling apart and going into a crisis is much lower than normal people. So they're more sensitized, they're more um disruptive to the triggers, to stressors because of their um their yin and yang is is off. So it's it's an entire misconception, but we know that these behavioral interventions are proven to strengthen the autonomic nervous system. Even exercise strengthens this. We have heavily boosted the importance of exercise lifestyle intervention, good sleep. I mean, and this is not just important for cyclic vomiting. This integrates into all brain gut disorders, IBS, you name it. This this is relevant to heart disease. It's relevant in almost all medicine. How the automatic nervous system, you know, signals and and controls the body. And so having a a poor vagus, uh, it's simplified, it's as much simplified. When I say that, it's much more complicated in reality. But um, yeah, hopefully I'm I'm telling you, I'm telling, I'm expressing what I'm what I mean here. There is a very physiologic imbalance uh that tends to present with more anxiety and um stress-sensitive conditions, a stress-sensitive condition. And these behavioral interventions are really um helping to improve that foundation, right? And then it's almost like drug drugs can do similar things, but they come with all kinds of side effects and mood changes and and issues, and um yeah, and and and may not as effectively based on the data, there are not as are not as effective as as these behavior intervention.

SPEAKER_01 30:33

Perfect. Thank you. Because that is uh it is something that I'm seeing, especially with the shift talking about the disorders of the gut-brain interaction, right? As people are leaning more toward um it being psychological. And I just want to make sure we're kind of touching on that.

SPEAKER_02 30:50

Um Yeah, I think uh what we're seeing is a shift, it's a it's a it's an entire paradigm shift in the disorders of brain-gut interaction to uh mindfulness and intervention because they are infective and it's an integrative care model. But the people who are uh understand these disorders, I none of them are saying that that means that there's purely mental health issues. The mental health issues uh that come are often a consequence of the unresolved medical problems, and that mental health condition is like essentially secondary. And sometimes as providers, we have a hard time figuring that piece out because certainly there's some people that have more of a mental health issue, and little kids can vomit because they're so anxious for sure. Um, so that's where it it gets a little dicey, but um I really hope that that's not the take home from the guidelines.

SPEAKER_01 31:46

No, I don't think it's from the guidelines.

SPEAKER_02 31:48

I think it's people's under shifting and the the I I you know that and you see the leadership kind of shifting in the the key communities and um communities but organizations, um more and more psychologists and and psychologists were leaders are taking the leadership uh um positions, and I think that's important.

SPEAKER_01 32:11

Yeah, I agree because it's uh, you know, I mean comprehensive care. We talk about care, right? Um 15 minutes visiting with a patient is isn't enough to capture that, right? We've kind of talked about that a little bit. Um so having more comprehensive care that is understanding, hey, you know, your sleep's off. This could be impacting you, right? Um it it's it's just giving us a little bit more to that care. So I really appreciate that. So 20 2018, I think was the first time I was at uh the adult treatment guidelines um meeting, and you know, I I literally went, so is the pediatric guidelines next, right? That was 2018. 2025 is when they were finally done. This is it's not it is a very long and arduous process. So I appreciate you kind of talking about that a little bit earlier because it's it's not something that happens overnight. There is a it is a very um focused analytical process. So um I appreciate that you went over that. Uh, after spending years developing these guidelines, um, what gives you the most hope right now in um the field of CPS?

SPEAKER_02 33:26

Um that they are being used uh in all the little small communities, but primary care providers whose patients cannot hop on a plane and go to a big center. That is my goal. That was all of our goals. That a primary care pediatrician can pull up these guidelines and easily read what they need to do. It's it's uh they are built to do that um with a purpose. Every single thing in these guidelines are built for a primary care doctor to understand it. They're not built for experts, they should already know what to do. Um, and and yeah, that that is my real goal. And I think um what you see is an expert from how many? Eight, ten, eight to ten. I forget how many were on our guidelines panel. Very dedicated experts who, by the way, do not get paid to do this. This is all voluntary work, which is why it takes time, right? Um I wish I had had the 10 to 20 hours per week that I many times spent on these guidelines. Um, and it's all done sort of on the side of our normal, very busy jobs. So I think um the you know, I I say that because I think that the the effort to really um get to the bottom of every single question that was raised in the guidelines and and presented in a very scientific way, but also a very um uh clear way to a primary care doctor is is my wish. And I hope that works. And I I think so far it's been good because we uh I want to highlight that the journal Pediatric Gastendroll and Nutrition just released that it was the most read guideline with 20,000 something views this past year, I guess. Yeah.

SPEAKER_01 35:14

Yeah. And I don't even think it captures all of that because uh CVSA went to the American Academy of Pediatrics conference in um I think it was September last year, and took uh 300 printed 300 copies of the guidelines and they were gone in the first day. Nice. So it was, you know, I mean, it's not even capturing stuff like that, right?

SPEAKER_02 35:38

So um it's it's a bit I'm really hoping they are all over the world too, because these meds are meds and interventions are majority of them are are accessible uh internationally all over the place. And and finally, one of my uh colleague friends from Australia is the one who told me that congrats, there was the JPGN number one, and I didn't even know. So they're reading it in Australia, apparently.

SPEAKER_01 36:06

Everywhere, yeah. Uh DDW, there was um, you know, it's a large international presence and uh everywhere, right? You know, Thailand, Argentina, it's uh it's it's everywhere. So they're needed. And you know, I know the CVSA office sends them everywhere. So um we'll try and uh wrap up pretty pretty quick here because I know your time's um limited. If a newly diagnosed family was listening right now and feels overwhelmed, what would you want them to know?

SPEAKER_02 36:40

Um mostly that cyclic vomiting is uh very treatable and um it can be really disabling and and and so difficult to deal with before you get it under control. But especially with the new guidelines, it's um, I mean, the vast majority of cases we get under control fairly fast, and you probably don't need the ultimate expert to get this done with our new guidelines. Uh and also um CVS gets better, at least in as it presented children. Um, many, many cases, and I would say majority of cases are pretty bad in the younger ages, toddler toddler years. And I can't tell you how many kids I see when they're teenagers, and it's just an entirely different story. So there's a lot of hope there.

SPEAKER_01 37:35

Awesome. Uh is there anything you feel the medical community still misunderstands about CVS that you hope these guidelines will help change?

SPEAKER_02 37:45

Yeah, it's not a psychogenic disorder, and it's not Munchhausen by proxy. Thank you. Um I also I also want to say really emphasize how commonly CVS is undiagnosed. Um, think about it in your ERs and think about it in your uh clinics before prescribing, you know, antibiotics for a presumed ear infection or something, or presumed infection, presumed infection. Um it is a migraine condition. It's as common as migraine, it's more common than celiac disease in our state. So um cyclic vomiting is to be counted for.

SPEAKER_01 38:27

Yeah, I was talking to celiac foundation at DDW, um, you know, because they're like, how common is this? Because nobody, you know, we haven't heard of this. And it's like, well, and celiac they're saying is 1%, CVS is 2%, right? That means it is definitely more common than celiac.

SPEAKER_02 38:45

Dr. Lee and I he's the one who you used to always speak about that. And while the prevalence for cyclic vomiting can be a little hard to sort out, right? Uh exactly, because there's no blood test. Um, you go by stories, and um, but it's thought to be somewhere around 2%. So it's common, it's not a rare condition, as everybody keeps saying.

SPEAKER_01 39:08

Uh, we've been trying to get that out for years, right? It's the 2% is no longer considered um rare. So I appreciate that you brought that up. Um, I am just gonna throw in a shameless plug to encourage supporting organizations like CVS and the work that they do um funding these clinical guidelines. Um, because how how important was it uh for CVSA funding to make the work on these guidelines possible?

SPEAKER_02 39:35

The support from CVSA uh was crucial to get this underway. Um CVSA supported our initiative from the very beginning to the end, and um we need some funding to support the the work, sort of software and great expertise, and then some funding to then release things and distribute this to um to the public. So CBSA was the only way we could do that, and it probably wouldn't have happened otherwise.

SPEAKER_01 40:08

Yeah, that open access, right? Which is what makes it uh available to be um JPGN's top, right? Is because it is open, people can see it, it's not locked behind a paywall, which most things do at a certain way. Somebody can access these guidelines. Right. Thank you. Okay, so uh before we wrap up, a couple more questions for you. Uh is there something that you want people to know about CVS?

SPEAKER_02 40:36

Yes, I think people both um providers and family need to know that this is a physiologic imbalance in your body, that uh it's not a mental health condition. It can really improve with the proper care. This condition needs integrated multidisciplinary care, as per the guidelines, spell out, and um patient can really do well, but it needs to be addressed seriously, it needs to be addressed chronically over time, so there's no quick fix to this condition, but with the proper care and um providers um really just caring for these patients in um in an integrated fashion, um patients are gonna do well.

SPEAKER_01 41:26

Perfect. Thank you. Uh and then the the last one that we're kind of asking everybody, um if you could describe CVS in one word, what would that word be and why?

SPEAKER_02 41:42

It's a big spectrum, so uh what always comes to my mind is disabling and suffering. Um it's it's it's a very typical disorder where you look fine, but you're not fine. Uh and you know this the stress even outside of the episodes on the families on the patient is um daunting. And so that's why the word disabling come to my mind. And you know, I feel I often feel so sad for these families of little kids who are just at the verge of of losing losing their mind. And um luckily we can help a lot of them.

SPEAKER_01 42:35

So that's awesome because there is uh there's a lot of needless struggling, right? Um fighting for care that we should be getting just kind of automatically. It's uh so I appreciate you saying that.

SPEAKER_02 42:49

Yeah, and another aspect is the fighting for care and the stigma surrounding um uh cannabinoid hyperemesis and uh confusion and misdiagnosis and labeling people with cannabinoid hyperemesis. And so um that's one of the worst things within this field is that um cyclic vomiting, uh, patients and even cannabinoid hyperemesis are are just so mislabeled and and they then often do not receive the care that they deserve.

SPEAKER_01 43:19

Yeah, my son's been turned away even after uh having a negative toxicrene and just not getting care. And we shouldn't have to fight that hard for care. We really shouldn't. So thank you so much for sharing that and joining us today, Dr. Carento. Uh I'd like to remind everyone that the CVS Pediatric Treatment Guidelines and the Adult Treatment Guidelines talked about on today's episode uh are available on CVSAonline.org along with many other resources, information, places to connect with community and get support. We'd like to thank you for listening, and Dr. Kacha Carento for joining us today on Episodes, a podcast by the Cyclic Vomiting Syndrome Association. Thank you. Thank you for listening to Episodes, a podcast from the Cyclic Vomiting Syndrome Association. Be sure to subscribe, support, and share. We're here to amplify CVS perspectives, spark meaningful conversations, and help change the way that cyclic vomiting syndrome is seen and understood. Don't forget to like, follow, share, check out resources on the CVSAonline.org website, and keep the conversations about CVS going.