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.

Gratefully,

Mikki

Falling between the Cracks

It was November 8th 2012, and I was once again fighting to have my son admitted to the hospital. My son had started vomiting on September 1st and had not stopped. Three months of vomiting 10 to 30 times a day. He’d been hospitalized twice at that point and had had multiple trips to the ER and would spend up to 8 hours a day at an infusion center getting intravenous fluids. But no one could or would stop the vomiting. So what do you do when you fall through the cracks in the system of our healthcare? There really are too many to name. Every twist and turn in our quest to get care for our son resulted in another pitfall or roadblock that kept him from getting quality care. Quality care in a manner that should have had him back on his feet in a matter of days instead of months.

First, the illness that we were dealing with was not a common one. It usually takes years to diagnose. We were told on numerous occasions that he had the flu. He would throw up for Continue reading

New Study II (Resting State Brain Response)

Resting State Brain Response to Chronic Nausea and Cuff Pain

The proposed study will examine the CNS circuitry of nausea in the human brain. Results found from motion sickness studies in healthy adults will be applied to guide the analysis of brain physiology in patients suffering from chronic nausea, i.e. cyclic vomiting syndrome (CVS).

Basic Criteria Eligibility: This study will aim to evaluate patients (n=25) diagnosed with CVS who are in an inter-ictal phase, i.e. at least 48 hours following cessation of any nausea/vomiting episode.

  1. Subjects age 18 to 80 years
  2. Diagnosis of Cyclic Vomiting Syndrome by Rome III criteria

EXCLUSION: Subjects who currently have an acute illness, those who are awaiting transplantation, and those who have a chronic illness, such as kidney failure, congestive heart failure, and diabetes. Use of prescription benzodiazepines within the previous 3 days, use of prescription opioids and self-reported use of cannabinoids within the previous 7 days are another exclusion criteria.
Another exclusion criterion is any nausea/vomiting episode within 48 hours prior to experimental session.

Principal Investigator:  Dr. Braden Kuo

Study Coordinator:  Shahar Castel, 617-726-0196

New Study I (Prospective Registry)

Prospective Registry in Cyclic Vomiting Syndrome at MGH

The researchers are looking for people to take part in the Cyclic Vomiting Syndrome Prospective Registry Study.  They are exploring the causes, progression, and impact of the disease.

Basic Criteria Eligibility:   Diagnosed with CVS and 18 years of age or older
Principal Investigator:   Dr. Braden Kuo
Study Coordinator:   Shahar Castel, 617-726-0196

International Vomiting Conference

Biology and Control of Nausea ad Vomiting 2013
(a Professional Conference)

October 3-4, 2013
University of Pittsburgh, Pittsburgh, PA

 

Nausea and vomiting are common highly aversive experiences for patients and result in reductions of appetite and quality of life. Progress in understanding the biology and treatment of nausea and vomiting has been slow partly because there is currently no focused scientific meeting to discuss and collaborate on these research topics. To address this void, Biology and Control of Nausea and Vomiting 2013 will be held at the University of Pittsburgh on October 3-4, 2013.

Biology and Control of Nausea and Vomiting 2013 is targeted to both basic researchers and clinical investigators working in the field of nausea and vomiting. Information provided will also be useful for clinicians needing an up-to-date presentation of treatments for nausea and vomiting, particularly difficult-to-treat cases.

For more information, visit the website:
http://internationalvomitingconference.org/

A Story of Inspiration

My name in Megan Grabow, I live in Maple Grove, Minnesota. Today was a success, a reunion of 13 weeks remaining out of the hospital! Praise! 🙂

I have Type 1 Diabetes and a slight case of Gastro paresis, which contributes to a long process of being diagnosed with CVS. It has taken me 2-3 years to go through hell to be able to praise the life I have today! I was diagnosed with CVS in September at the Medical College of Wisconsin. Doctor V (Thangam Venkatesan) was clear that it was a definite case of CVS. I started on the treatment with Amitriptyline immediately. Over time of increasing amitriptyline, and doing back up treatments for accelerated nausea, I have slowly gotten my life back together. Continue reading