Episode 6 - Special Podcasthon Episode - When No One Had Answers: Finding Hope Through CVSA

In this special Podcasthon episode, we share the story behind the Cyclic Vomiting Syndrome Association (CVSA) and how a small group of families searching for answers helped build a global network supporting patients, caregivers, and medical professionals.

Through our host, Blynda Killian’s personal caregiving journey, we explore the challenges of the diagnostic process, the importance of finding organizations like CVSA, and the role patient advocacy plays in improving awareness and care.

Learn more about CVS at cvsaonline.org

Transcript

SPEAKER_00 0:12

You're listening to episode, a podcast from the Ciclic Funding Syndrome Association.

SPEAKER_01 0:17

Please be aware that the content of this podcast is created for general, informational, and educational purposes only. It is not 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 a medical condition.

SPEAKER_00 0:37

Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast.

SPEAKER_01 0:43

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.

SPEAKER_00 1:04

Their appearance on this podcast does not constitute an endorsement by the Cyclic Vomiting Syndrome Association.

SPEAKER_01 1:10

Furthermore, neither the Cyclic Vomiting 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.

SPEAKER_00 1:28

We do not endorse or recommend any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned.

SPEAKER_01 1:39

Hi everyone, it's Belinda Killian, president of the Cyclic Vomiting Syndrome Association. I'd like to thank you for joining me today for a very special version of Episodes, a podcast 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. Today I'm excited to share that episodes has joined a podcast movement called Podcast Thone, a movement meant to bring together podcasters globally to raise awareness for different charitable causes. This special recording of episodes is our contribution to the world's largest podcast charity initiative, Podcast Thone. So come along on a little journey with me as I explore how the Cyclic Vomiting Syndrome Association, or what most people call CVSA, helped me and why I hope that you will support the work that this amazing organization does. So just a little bit of a warning for you. This may be hard. I may cry. And it is a little raw for me since not more than a handful of hours ago, I was in the same hospital that, quite frankly, saved my son. So I've been walking down memory lane for more than a few days and reliving the good. But more often than not, the bad of CVS. Let's start back at nearly the beginning of our CVS journey before we had ever heard the three little words cyclic vomiting syndrome or CVS. Because, like many people, my son was what was referred to as a pukey child. He had bouts of vomiting on and off over the years. Heck, within the first few days of being born, he was spitting up profusely, really throwing up more than many other kids, and definitely more than his sister ever had. So where should I start? For the third time in a handful of weeks, I was in the emergency room with my 11-year-old son. We'd already fought through a few rounds of vomiting that had lasted for two weeks. Two weeks. And now it looked like we were headed into another. He'd barely been able to recover from that lot from the last few rounds of what they were calling the flu. And here we sat being told once again that he had the flu. Again. I was blown away and so very frustrated. How could this poor kid keep getting the flu? I had to ask the ER doctor how? Why? None of his friends had been sick, yet here we were again. And this was definitely the roughest flu that I've ever witnessed. The vomiting looked like something that could only be created by an expert props team on a big budget movie. But we was witnessed it over and over again, like clockwork. Every two weeks. I even mentioned that to the doctor. It was every two weeks. Sick for two weeks, fine for two weeks. Yet the response that I was given was that there are hundreds of strains of the flu. Now let's imagine when those two weeks of vomiting passes, and for two weeks he's fine. Then bam, he's vomiting again. Imagine this for a second. This poor kid vomits violently. Twenty, thirty, forty. I won't even say twenty. Let's start at forty. Forty, fifty, sixty times a day for two weeks straight. No explanation. Definitely no stopping it. There's nothing that anyone can do to make it stop. What would you do? I'd taken him to his pediatrician. We'd taken him to urgent care. We'd taken him to emergency. All of them. Repeatedly. Sometimes all of them in one day. And no one had answers. The next time it happens, it doesn't last for two weeks. It lasts for five. Five weeks. I had to fight so hard to get any kind of care for him. We were literally fishing. Fishing for someone that could or would help. But it was more like catch and release for us. They'd give him fluids, they'd send him home. They'd give him fluids, they'd send him home. For five weeks. We eventually got him admitted to the hospital. But there were no directions given for what should be done while he was in there. They couldn't stop the vomiting. Tests all came back completely clear. All of the nurses and staff at the hospital were asking us what the plan was and what they were supposed to do. His pediatrician had left on vacation, had left no instructions for his care. I was so frustrated and lost. I wanted answers, and it appeared I was the only one looking. Because when you don't even have a name for what is happening, you don't know where to turn. Do you know who has answers? The internet. And a bunch of parents that banded together to create an organization focused on a condition that no one's ever heard of. Literally that. And you know what came up? The Cyclic Vomiting Syndrome Association. With a brochure that had a title. I mean I had been crying. Because I felt like nobody could help us. But I cried. Because I resonated with a piece of paper. With a brochure. This is what was wrong with my son. I stayed up all night. I read everything on the CBSAonline.org website. I found and lurked on their online community page. Reading about everyone's experiences felt so familiar. It felt like what we were going through. I didn't join because I felt it was wrong. Without him having an official diagnosis. But I was home. This place. These people. They understood. I couldn't wait. At three o'clock in the morning, I emailed the office. I finally felt like someone could help me get answers. They sent me the treat treatment guidelines for pediatric CVS because CVS was barely recognized and only seen as a pediatric condition at the time. They gave me a list of physicians that could treat CVS near me. None of them were. But I took it, I printed it out, and I took it to my son's then primary care physician. Because after that episode in the hospital, we fired his pediatrician. So I asked his new PCP if this was what could be going on. If this condition cyclic vomiting syndrome could be what he had. I'd like to say that our lives changed that day. But I hadn't. But we'd found a community, a space, a place that my soul recognized for its understanding. The Cyclic Bomiting Syndrome Association. Founded in 1993 by patients, physicians, and parents, just like me. They joined together to share that information and strive driving change for others. It had begun in the 1980s when one mother began searching for other families experiencing unexplained vomiting illnesses in their children. From there was a handful of families connecting not only in the U.S. but internationally. Physicians like David Fleischer and B.U.K. Lee joined the effort, and the first international CVS meeting was held in Milwaukee in 1993. That meeting led to the creation of CBSA. It was built by families searching for answers. Families, parents. Over the years, CVSA has supported thousands of patients and families on their CVS journeys, provided information, connection, and more often than not, guidelines that CBSA has facilitated to make the diagnosis and treatment of CVS more accessible. There have been SPOSIA aimed at promoting and sharing of research, patient and family conferences, awareness campaigns, medical outreach, and so much more. I could literally talk about this all day. I do quite frequently. Treatment guidelines, empirical guidelines, and 2019 adult CVS treatment guidelines. And most recently, the 2008 pediatric CVS guidelines were updated, last year, 2025. These treatment guidelines are so important and were published open access with support from CBSA so that anyone and their physician could access them. Take them to an appointment, access them in the emergency room. Do what I did. Print it out, take it to your doctor. Is this what's going on with me? Is this what's going on with my child? During our journey to a CVS diagnosis, I traveled with those guidelines. I carried them with me to every appointment. Every urgent care. Every emergency room. Every admission. And even to work. Because I never knew where we would be at the end of the day. And I wanted to be prepared. CBSA gave that to me. And I clung to it like the lifeline that it was. Many years later, we did get a diagnosis. And it took even more time to find medications that worked. But I never forgot that light in the dark. That beacon of hope and light for our family. We'd been through so much that I had to keep sharing and helping others that were in similar situations. I joined that CVSA online community on the day we were given our diagnosis. Even though I'd still been lurking. I started handing out brochures. Because those brochures changed our lives. I kept getting involved and doing more. I wanted to give back to an organization that had given us so much. And I hope you will too. Because let's face it, I may be a little biased. I may run the organization, but all of my time, a lot of my resources, and definitely most of my energy goes into this organization. And it's all volunteer for me. CBSA is a volunteer-led organization. I just want to be clear about that. So this podcast, the time that I dedicate to the organizational work, the advocacy, the medical conference attendance and outreach, and so much more is volunteer time for me and many others. We all want the support that CVSA gets to go to where it's needed, providing education, information, awareness, support, medical outreach, young investigator awards that promote the next generation of medical professionals to learn and treat CVS, all while funding research toward a cure for CVS. So stop by the website. Check out the plethora of resources that they have. Join a support call. Join the online community. It's home. Grab some brochures, give a gift, share it with a friend. What one started as a network of a few families has grown into an international organization supporting patients, caregivers, and medical professionals around the world. Because CVS is still underrecognized, misunderstood, and stigmatized. Delays in diagnosis and care still happen even today, years later from when we were looking. I've seen change, but not enough. We're not there yet. Awareness, recognition, and frankly, education on CVS is still very much needed. CVSA just had our International Awareness Day. But again, so much more is needed. It can't be done just for one day. It needs to be done every day. Because awareness leads to understanding, and understanding leads to better care for those living with cyclic vomiting syndrome. For more than three decades, CVSA has helped bring together patients, caregivers, physicians, and researchers from around the world to better understand this condition, support families and advance research and treatment. For families like mine, CVSA became more than an organization. It became a lifeline. If you'd like to learn more about cyclic vomiting syndrome or support the work being done to improve the lives of patients and families, please visit cvsaonline.org. And a big thanks to Podcast A Thon for hosting this imperative initiative. The Cyclic Bomiting Syndrome Association, the Episodes Podcast, and I, Belinda Killian, appreciate that you joined us on this special version of episodes for Podcast a Thon to hear a bit more about the Cyclic Bombing Syndrome Association, its history, and why I personally support them, and why you should as well. Thank you for joining me on my trauma stroll, my trauma memory stroll, and recollection of how CVSA had helped me and prompted me to want to help others, not have to go through what our family did. 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.