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What People Don't See in My Son's Journey With Cyclic Vomiting Syndrome

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At 2 weeks old, my first-born, perfect baby boy started projectile vomiting, multiple times per day for days on end. As a new mother, I was worried sick (no pun intended) and took him immediately to his pediatrician. They assured me (a nervous first-time mother) that his “spit up” was merely reflux and provided an antacid. Those first were weeks of vomiting turned into many more weeks, then months, and then years.

We never really knew why he was vomiting so much, despite years of tests, scans, scopes, medicines and a multitude of nurses, doctors, specialists and various therapists evaluating him. He would seemingly out of nowhere start to vomit, and wouldn’t quit for hours and hours. As he grew older, he complained of intense pain, nausea, dizziness, and fatigue. Then, just like a light switch was flipped, he stopped regurgitating, and resumed what was he doing before he felt ill.

People didn’t believe how quickly it came on and how intense it was (“Must have had something bad to eat,” “The flu is going around,” “Another stomach bug? He is always sick!”). He would go to school one day, and then be out for several more. He would go to the ER to get hydrated, just to be sent home again and still be sick. He would get excited for a birthday party, a holiday, a family vacation, a sports event and then be vomiting for days on end. We didn’t sleep much, despite him being past infancy, because he vomited in his sleep and we worried he would aspirate.

Fast forward several years, eight years to be exact, before we got a rare disease diagnosis, cyclic vomiting syndrome (CVS). It’s caused intense vomiting, nausea, pain, and a whole lot of other undesirable symptoms due to a neurologic condition. His condition finally had a name!

We were elated for a moment, and then realized there were no treatments, no medical regimens, and no cures.

We slowly learned about his excitement triggers, and how changes in his daily sleep/wake/eat schedule could throw him into a tailspin. We got a medical alert dog that could sense the changes in his body and let us know before he would vomit (it was great not to have any more sleeping vomit spells!). We tried a myriad of medicines, alternative therapies, changes in schedules/diets/physical activities.

Nothing really helped, but the best thing we did was get involved with the rare disease community through NORD. For the countless people who thought we were “crazy” or thought we or he was making himself sick, we found the same number of people who understood and who were able to offer support and encouragement in those tough times.

Vomiting may not sound like a terrible affliction, except it is. He worries about get excited for fear of vomiting for days. Even attending a sporting event makes him worry about clearing an entire section due to vomiting continuously while enjoying a home game. He cannot attend birthday parties (even his own) without fear of ruining it by being sick.

When he is not actively sick, people think he is fine and healthy. What they don’t see is the pain, the nausea, and the fear that the vomit may come at any moment.

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Originally published: October 18, 2016
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