Ella’s Story

CVS controlled my life for a year. It was devastating to both me and my family. It took several doctor visits and hospital stays before we even began to understand what was happening to me. I would be fine for weeks, then out of nowhere, I would have crippling pain and uncontrollable vomiting for days.

I had to withdraw from the university I was attending because I was unable to keep up with my studies and manage CVS all at once and I was (for a while) unable to keep a job. Since CVS isn’t very common, it wasn’t unlikely for people to think I was lying about my condition or just “looking for attention”. It was extremely discouraging and stressful to hear employers and even some friends to express their disbelief about my claims. Eventually, I realized I could no longer care for myself alone and moved back home with my parents for the extra care and support.

The process of finding a diagnosis was miserable. I went through almost every test imaginable, tried multiple medications, and even had my gall bladder removed.
Thanks to my wonderful determined mother who spent hours doing research we finally had an idea of what was going on with me. After dealing with CVS for some time, my doctors and I were able to figure out what medications helped with symptoms and what steps to take to lessen the severity of the episodes. Now that I have my CVS more under control I am able to return to school and work without worrying about fits of vomiting very often.

Mikki’s Letter

“Hope starts here” has always been a beacon of encouragement to our family, and I am writing to you with a story of hope that I thought might interest and encourage others.
DustinBriefly, my son Dustin began having episodes of what we eventually learned was CVS when he was about 9. He would be sick three or four times a week for several months and then the symptoms would disappear for several months. We saw so many doctors – we were told he had acid reflux, Crohn’s, celiac. We were told he was anxious about school, when there was absolutely no evidence of that. He loved school, he was happy, and did well. He always got up for school, got dressed and had breakfast, and then got violently ill. But he always tried. My heart still hurts when I remember mornings that he started down the hill to meet the school bus and then bent over to vomit. Sometimes he’d try to continue down the hill, but once it started, it was over for the day; sometimes two or three. He had blood work, an endoscopy, he was poked and prodded. Over the years he saw a therapists, an acupuncturist, a hypnotist, a cranio-sacral therapist, an allergist, gastroenterologists galore. At one point he was sick so often that we took him out of school and put him on home teaching because he had fallen so far behind.

It took years of doctor visits, dead ends and testing before we got a diagnosis. Throughout middle and high school, Dustin tried various medications and combinations, but nothing much worked for him. He did well in school, played two varsity sports but he continued to cycle – sometimes going for a few months without an episode, then suffering for weeks at a time. And once they started, nothing seemed to help. He would throw up for several hours, sinking into a sleepy daze in between bouts of vomiting. Eventually, we found our way to  Dr. Bu K Li in Milwaukee.

The summer before senior year, we convinced Dustin to see Dr. Li. We waited several months for an appointment, and then traveled from NY to Milwaukee to Dr Li. He spent several hours with us and for the first time, we felt like someone completely understood what we were dealing with. And he helped. He put Dustin on a regimen that reduced the frequency of his episodes. And for the first time ever, a doctor prescribed a combination of medications that actually aborted or shortened an episode when it did occur. For the first time, an episode didn’t mean at least 24 hours of non-stop misery. On some occasions, Dustin went to school after the meds and a few hours’ sleep.

When Dustin left for college in the Fall of 2010, he had not had an episode of CVS at all in over six months. I don’t recommend what happened next but it isn’t surprising. Since Dustin wasn’t sick, he tapered off his meds and then stopped completely. At Christmas time, when he told us, there seemed little point in re-starting the meds since he had been episode free for nearly a year. The following spring, Dustin spent an exciting, happy and completely healthy semester abroad in India. When he returned to college after the summer, it had been a year and a half since he’d had a CVS episode.

Over the last three years, he has had an occasional episode. We know that CVS can rear its ugly head at any moment, we know that it could return often or rarely – but we also have hope that Dustin may simply have outgrown it. In any case, we are grateful for the time he’s had to travel, go to school, work and live on his own these last few years. There were times when we couldn’t have imagined this. And years ago, I would have been so grateful to hear a story like this, to know that it was at least possible to move beyond CVS, maybe for a time, maybe forever. I’m writing in case others could derive hope and encouragement from our story.

And to thank you at CVSA for the support and information you provided to us when we needed it.