There’s NEVER been a BETTER time to have CVS!

Submitted by: Colleen Rice

Among many support groups for Cyclical Vomiting there is very often a loud call for “FIND A CURE NOW” the pressure from parents asking and sometimes begging make this horrible thing go away. I’ve heard we can send man to the moon but we can’t cure cancer, CVS etc. I like to point out that the common cold has affected more people still has no cure as well. So, here’s my take on why I think there’s never been a better time to have CVS diagnosis.

Recently my 10 year old son and I read”The Apprenticeship of Lucas Whitaker”over Thanksgiving break. As a family we are very much into FIRST Lego League, and we were reading this as part of research for next years WORLD CLASS Challenge. Next years challenge is looking at how kids learn in the 21st century. This book came recommended by our favorite librarian friend, as being a great book that was an example of common ways that children learned in other places and in different ways outside of the classroom. You see, Lucas is the sole survivor in his family as the rest have died from an illness had no cure or as far as anyone knew. He stumbles into a neighboring town lost and looking for direction following his mothers death. He happens to find a sign on a door that says help wanted. lucky he knew how to read, apparently not a common skill in that area. The person looking for the help is a doctor who then take Lucas in as his apprentice.

Why you might be asking why am I bothering to tell you all this. This simple story of a snapshot of American history and culture is classic and a reminder every parent of a sick child needs to remember. In the historical fictional story, you learn the doctor’s sister who used to live in the city, has an obsession with washing which comes across as a mental condition to Lucas. Why was she making him bath everyday in the dead of winter (keep in mind it was the 1800 when there was no easy hot water heater other than a pot of water and a stove ). This sister was in fact ahead of her time, having learned about the importance of washing to avoid illness. Today that sounds like a no brainier….but back then it was groundbreaking that it was revolutionary. It was not that people were dumb, bathing was not a practical thing when you consider the evolution of indoor plumbing and such.

It not difficult when you realize that these people were doing the best with the information they have. There was no internet to google a condition, or even a pediatric specialist of these things to take your child to. Personally, I believe many server cases of CVS in these days probably resulted in death due to dehydration. As a parent of a CVS child, you have seen how fast a child who is retching 10x an hour can dehydrate. We are blessed that we can take our child to a hospital by driving our warm cars in the dead of winter to the local hospital maybe 2 hours away or less… There we meet a team of doctors and nurses who though probably unfamiliar with CVS, can easily spot the need for IV fluids, and also have the supplies readily on hand to administer this life saving treatment to our children.This is a luxury many parents at other times in human history never even had the option of. There has never been a time in history to have CVS.

OK so your thinking, yeah I know we’ve come a long way but everything has… that’s a lifetime ago and I can’t relate to that. Let me tell you another story, my story of what it was like being a child in 1980’s having CVS. Everyone knew when I threw up I never stopped, and dry heaved for hours to the point of bile and would lay there in what I know now to be call a conscious coma. The doctors never knew what to think when my mom brought me. My parents had a friend who was a pharmacist who recommended Emetrol which only seemed to aggravate the vomiting. If I was finally to be admitted to the hospital for this which only happens 3x in my childhood, the nurses would tell my parents I was just being stubborn and I needed to stop. They also pushed fluids orally non stop which as you have come to realize probably is the last thing to do during the height of a cycle.

My parents stopped bringing me to the doctor for it and we always rode it out home which felt like torture. I on some level carried such guilt… why could I not throw up like everyone else? Why would the sound of someone flushing the toilet trigger such horrible retching over and over again? Why could I not swallow or take sips and keep them down like everyone else? The problem must be me…I must be weak or so I’d think to myself every time I got sick. It in no way saying my parents neglectful at all,they did the best the could with the knowledge they had and the resources available to them. The next time we sought treatment for an episode was in 1991 when my kidneys started to shutdown during an episode.

Thankfully after this episode it seems to resolved itself exept for when big life changes occur…such as graduation from college or after my wedding and even those were mild. Then came our first child and for the first time in my life oddly enough, I could puke and be fine! I realized there’s something different going on here.. I can puke and still make dinner and not be down for days. Then our 3rd child was born, and by the time he was 3 I knew he puked like me, but never did I imagine it would progress to the world wind of a thing it’s turned into. I knew when he had his tonsils out he needed to have extra IV fluids to aviod a cycle like I did when I had mine out. But it was not until 2012 that this puking thing had a name, and more than that there were things you could to to help.

So for some the diagnosis of Cyclical Vomiting Syndrome is overwhelming and unfamiliar. For me it was a name to an enemy that plagued my childhood and made me fear vomiting. For me to learn its name and that there was a plan was a time of sheer and utter joy. My son does not have to lay on the floor on the verge of passing out for days, he is blessed to go into the hospital and get the IV fluids and meds needed to stop further damage from being done to his frail and weakened body. He has tears in his stomach from the forceful retching at the tender age of 6. He’s been hospitalized over 20x in his life for this condition in the last 2 years alone. Without these hospitalization, I can say with almost certainty that he would have died long ago if had not been for the medical advances today that many take for granted.

When my son ends up in the hospital, I am nothing but grateful!

There has never been a better time to have CVS.

We don’t have a cure…and I’m OK with that…Because what we do have is a lot!!! We now know more about what it is as a migraine variant. We have drugs we can give to try to reduce severity and frequency. We also know that if all that fails we can give meds and fluids needed to ride out the cycle! These things are a huge step from 30 years ago! I am just starting to learn the mito-component and it again seems like a huge blessing and that we are taking huge steps to a better quality of life for these kids. It will be part of their lives, we can’t change that…. what we can teach them is that they can get through this and that we as caregivers will be there to help. We will continue to seek out answers and better ways to help and minimize CVS’s interruptions in our lives.

Til then It’s Stay Calm and Puke on!

Colleen