Living with Cyclic Vomiting Syndrome: Josh’s Story

 

When Josh Wright, 13, was younger, he always seemed to be somewhat of a sickly child. His mother Julie remembers Josh’s first hospitalization at just one year old; her son seemed to have a lot of difficulty keeping food down. As Josh cycled through repeated nausea and vomiting, his family became more and more concerned. At first, shares Rhoda Morrison in Edinburgh Evening News, doctors seemed to think that Josh was just dealing with a number of different stomach bugs, but Julie wasn’t so sure. She spent years working to figure out what was going on with her son. Eventually, they received a diagnosis. Josh has cyclic vomiting syndrome (CVS), a rare disorder characterized by repeated episodes of extreme nausea and vomiting.

In Josh’s case, Julie noticed a pattern. Every 12 weeks (3 months) or so, Josh would spend all night – and part of the morning – vomiting. During these “episodes,” Josh also had a difficult time speaking or drinking any fluids. It ended up being a Google search – and subsequent testing – which helped the family figure out what was happening.

Unfortunately, since his diagnosis, Josh has struggled with even more frequent episodes of nausea and vomiting. He is brought to the hospital every 6 weeks (1.5 months) with extreme nausea, vomiting, excess saliva, difficulty speaking, and even periods of vomiting blood. Sometimes, Josh struggles to understand why he is facing this illness; the mental health toll of living with a rare condition can be incredibly tough.

Moving forward, Josh and his family don’t know quite what to expect. But Josh hopes that one day, he can not only find ways to manage his condition but give back to the community by working in the medical field himself as a surgeon.

What is Cyclic Vomiting Syndrome (CVS)?

Cyclic vomiting syndrome, or cyclical vomiting syndrome, is a rare disorder with no known cause. Symptoms – particularly the extreme nausea and vomiting – may last for hours or even days. Cyclic vomiting syndrome is most common in children between ages 3-7, though the number of cases in older individuals has been increasing in prevalence. While there is no known cause, doctors and scientists have identified CVS triggers. These include menstruation, a family history of migraine, chronic marijuana use, emotional stress or excitement, certain foods like cheese or chocolate, hot weather, exhaustion, overeating, or having a cold, allergies, or sinus issues. Outside of the vomiting, symptoms of cyclic vomiting syndrome can include:

  • Diarrhea
  • Intense nausea and sweating
  • Lethargy
  • Heaving or gagging
  • Pale skin
  • Difficulty speaking / not wanting to speak
  • Fever
  • Dizziness
  • Sensitivity to light
  • Abdominal pain
  • Severe dehydration (complication)

CVS International Awareness Day – CVSA (cvsaonline.org)

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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