Cyclic Vomiting Syndrome Association

Steve Wartenberg: Welcome back to our ongoing series on Cyclic Vomiting Syndrome with Dr. V. I'm Steve Wartenberg, and this is Dr. Thangam Venkatesan. Today we have a special guest, Blynda Killian. Dr. V, why don't you introduce our guest and your colleague and friend?

Thangam Venkatesan, MD: Thank you, Steve. So I really have the pleasure today of introducing Blynda Killian, and thank you so much, Blynda, for coming all the way from California. And for the audience, Blynda Killian is now the President of the Cyclic Vomiting Syndrome Association or the CVSA. So today she's going to tell us a little bit about her personal journey and also some of the collaborative projects that we have and what the CVSA has to offer to patients and families. So Blynda, can I ask you maybe the first question, what brought you to the CVSA?

Blynda Killian: First, it was really kind of out of a need. I needed help for finding out what was wrong with my son. My son was diagnosed with CVS in 2013.

Steve Wartenberg: So what happened when you contacted the CVSA?

Blynda Killian: They really kind of helped me connect with physicians around me, find ways to get support and really learn from others that were going through that. And a lot of it was really having somebody else who understood what we were going through, because nobody knew what was wrong with him. Mine was, don't hate me because I'm going to say this was Dr. Google. I literally Googled-

Steve Wartenberg: A website.

Blynda Killian: Yeah. I literally Googled, why won't my kid stop vomiting? And CVSA is what came up.

Steve Wartenberg: So as a mom, when your kid is struggling and maybe even suffering, this must be pretty traumatic for the whole family?

Blynda Killian: It was probably the hardest thing we've ever been through.

Steve Wartenberg: Yeah. Wow.

Thangam Venkatesan, MD: And I won't take that comment about Dr. Google badly because unfortunately in previous series, this is really under diagnosed and misdiagnosed. There are very few centers and experts out there who know how to treat it, and a lot of patients have actually found me by Googling me. But fortunately for us, the CVSA does a lot of good work. And so if somebody would've come to them, then they would stir them to the experts like us so that they are able to really access and get the care that we need.

Steve Wartenberg: So the CVSA has a roster of professionals who know how to treat CVS that they refer people to?

Blynda Killian: e like to say CVS knowledgeable. A lot of our stuff is from people getting referrals to people that treat them, find out how to treat them, or, yes, definitely specialists. We definitely steer a lot of people toward Dr. Venkatesan and a lot of the other people that are researching and really driving information about CVS out there.

Steve Wartenberg: Because there's all these people that are going through what you went through for all those years until they find the right doctor.

Blynda Killian: Unfortunately. Yes.

Steve Wartenberg: Yeah, so hopefully this will help people find the right doctors.

Thangam Venkatesan, MD: Absolutely.

Blynda Killian: Absolutely.

Steve Wartenberg: So tell us a little bit, both of you, since you're both very involved, some of the programs that CVSA does.

Blynda Killian: I always like to say that we're kind of a little mom and pop shop that does it all because we're trying to support patients as well as funding research and education information patient packets, virtual expert presentations. There's so much that we try and do, and I think that really comes from a place of passion for a lot of us that are involved with CVS because we don't want other people to have to go through what we did.

Steve Wartenberg: Dr. V, how did you get involved with the CVSA? I know you've been involved for a long time in our... You'll tell me your title with them. I've forgotten it.

Thangam Venkatesan, MD: Oh gosh, yeah, so I've been involved actually for the CVSA for more than 15 years when I started my career. I actually was... A patient was referred to me and they told me that she's crazy, but she was not. And I treated her for cyclic vomiting syndrome and her life completely changed. So I think that was a major turning point for me. And so really, I think along... I've worked very closely with the CVSA and I'm one of their chief medical advisors, and so we have many initiatives. It's very important that we do research and teaching and hopefully, ultimately, before I hang my shoes up at some point, I really want to crack this and give people hope, make sure that we understand what causes CVS and really be able to provide better therapies. And so that's, I think, a shared vision for all of us.

Blynda Killian: Absolutely.

Thangam Venkatesan, MD: One of the things that I did with the CVSA recently, or we did is we had the third international symposium on cyclic vomiting syndrome. And so it was actually a multidisciplinary forum. So we had people from multiple countries, from Canada, from Mexico, from England, we really had people from multiple disciplines to really come together, share ideas, and I have to thank the CVSA for their support in holding the symposium, which was very successful. And we're also actually working now on proceedings from that, and hopefully we'll be able to publish it in the next six months or so.

Steve Wartenberg: I think I know, but I'm going to have you tell us what's the value of having a symposium and sharing information and collaborating and creating connections that'll lead to even more collaboration?

Thangam Venkatesan, MD: I think research is not that simple, and I think it's very important to have voices from different disciplines. If I'm just sitting in my own little field in say, GI, I won't know what's going on out there. So we have people from various disciplines. For instance, the neurologists have medications with what we call new medications called CGRP antagonists, and there's a connection between migraine and CVS. So could this possibly also work for CVS? We don't know. So this is what we call translational medicine, bench to bedside.

And so by bringing all these people together, we can understand it better. And so one is the translational, really the research part. And the other thing is I think it's also very important to hear the voices, not only of patients, but also patient advocates and caregivers, because now we have what's called patient-reported outcomes. I as a doctor can say, "Oh, you're fine. The medicine worked." But then is the medicine really helping you? Are you feeling better? And so what really matters to you? And so I think it's also very important to have that patient side. So I think our symposium was very unique that it actually brought together all of these people. We don't sit in silos, we connect.

Blynda Killian: Everything I kept hearing was... You'd hear somebody from neurology go, "Oh, I hadn't looked at it like that." Then you have GI that's going, "Oh, we didn't know that that medication needed to be administered that way." So having everybody in a room and talking really just... I mean, it was watching like a bomb go off, everybody going, oh.

Steve Wartenberg: It's an explosion of information.

Blynda Killian: Yes, yes.

Steve Wartenberg: How is your son doing? How old is he and how's he doing?

Blynda Killian: He just turned 25, and I always tell everybody CVS is a very huge spectrum because where he was, he wasn't going to make it. He got really sick and now you would not even know. It took, I think you telling me that, "Hey, he's still episodic." And I'm like, "He's fine. He's not still..." I mean, we're treating very well because he still has... He's working, he's going to school and he only has episodes. He has episodes once a month that are just very intentional nausea that he is able to control for three to five days. And it was you telling me, "He's still episodic." I'm like, "No, he's not. He's fine." Because from where we were, his episodes were two weeks long. He would vomit for two weeks, so he would get really dehydrated, very sick. He would lose a ton of weight. So going from there to he's not vomiting, he's fine.

Steve Wartenberg: Wow. So you've reduced the frequency and how the-

Blynda Killian: Intense.

Steve Wartenberg: Intensity-

Blynda Killian: The severity.

Steve Wartenberg: Of his episodes and he's able to live a normal, productive life.

Blynda Killian: I don't think we'll ever get to normal. And I always tell him... I don't like to live by going, it's normal.

Steve Wartenberg: His new normal.

Blynda Killian: Yes, we're never going to be normal, and we need to really embrace being different because it changes everything.

Thangam Venkatesan, MD: If you can achieve normalcy, that's great, but I think all of us are handed a deck of cards and sometimes you get a good hand and sometimes you don't. But it's the way we are able to cope with it. And by giving patients coping strategies and mechanisms to minimize the impact of all these symptoms, they can be highly functional and they can lead near normal lives or do what they need to do to be productive.

Steve Wartenberg: If people want to get involved either to just see your information or even get involved even more so with the CVSA, how can they do that?

Blynda Killian: I would recommend definitely getting them in touch with the Cyclic Vomiting Syndrome Association office. Our emails CVSA@CVSAonline. We have a website that has a ton of information.

Steve Wartenberg: What is the address for the website?

Blynda Killian: CVSAonline.org.

Steve Wartenberg: CVSAonline.org.

Blynda Killian: Correct.

Steve Wartenberg: Okay. And they can find emails to you and others there if they have questions?

Blynda Killian: Email, phone calls. Yep.

Steve Wartenberg: Thanks for watching and stay tuned for more episodes on what you need to know about CVS with Dr. V.

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For more information, visit wexnermedical.osu.edu/CVS