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

Alyssa’s Story

My daughter, Alyssa, was diagnosed with CVS. Alyssa has always been an over achiever. This year she is attending college her senior year, playing sports such as soccer and softball, and works for the city of recreation doing coaching and ref games. Plus, she was looking for a second job!

Four months ago, when soccer began, she started having this gag reflex. Being a person with exercise induced asthma, we thought it was because she was using her inhaler more. Within 2 months, she started vomiting once a day. At first it we thought it was because she would over eat at dinner. Being on the go a lot, she would skip meals because she didn’t like to eat before practice or a game. She said it would make her a sick. By Thanksgiving and Christmas break, she would vomit after every meal.

We saw her doctor the first week of January. She had weighed 96 lbs. which was a surprise to my daughter. At 4″11 she always weighed around 100-105 when playing sports. Her doctor ran some blood test, but by the end of that week she had dropped down to 86 lbs, and that’s when we had her admitted to the ER.

She was on an IV for a week while they ran every test possible, and yet they still couldn’t find out why she couldn’t hold any food down. A friend told us about CVS, she had found it online. We brought it to the doctors attention, and we asked for them to start her on a white rice diet. At first, only a palm size came up every 10-20 minutes for an hour and then it all started to stay down. Now she is home eating chicken/turkey with rice. Almond milk works; so I make pancakes and try other recipes with it, but not all meals work.

It is definitely a life changing experience. She had to quit soccer, but is hoping to be well enough by softball season.

Kristyn’s Story

I am 24 years old, a marketing/public relations professional, road race runner, and a basketball enthusiast. One thing that most people don’t know about me is that I have been suffering from a rare disease (Cyclic Vomiting Syndrome) for about 18 years. When I was diagnosed in first grade I was lucky that we lived in Waukesha County near Children’s Hospital of Wisconsin, where there was a specialist to see.

Living with CVS is difficult and most people don’t understand that certain normal activities for them can cause an episode for CVS sufferers. I have been to the ER numerous times, had extended stays at the hospital, and been through too many tests to count. Throughout the years I have learned to stay away from certain things in order to prevent an episode, but I don’t let it control my life.

I was able to go away to college and I graduated Summa Cum Laude from Valparaiso University. Since high school I have participated in numerous running races including half marathons. Lastly, I am a young professional living on my own.

I think that it is important for younger CVS sufferers to not let CVS stop them from participating in sports, musical activities, and other extra curricular activities.

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

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

Caregiver, Puppy Giver

ChrisJoelyMy caregiver is my husband Chris Paglione. We met at work in November 2002 at our school. We are both hardworking teachers. Everything was so great at first. We fell in love almost immediately. November 2003 was when the Puke Monster hit hard. I always had a history of being sick or having the flu way too often. This time we knew it wasn’t the flu. For 8 months I was in and out of my local hospital, and I had my gallbladder taken out. Chris would carry me to the car and drive as fast as he could to the ER trying to keep me calm. He would do everything he could, including scare the daylights out of ER doctors who did not immediately help. After my doctors at the local hospital refused to help me, Chris took me to a teaching hospital in New York City. He stood by me, holding my hand and letting me cry on his shoulder every step of the way. There I spent another 8 months and had 3 intestinal surgeries. Chris would work all day, coach his basketball team, and then take the 1 and a half drive in traffic to the hospital where he would stay with me as long as his feet could carry him…on bad days, sometimes all night where he would sleep on a chair and then drive to work at 6 am. For my birthday, he bought me a puppy and secretly brought him to the hospital just to cheer me up. Thankfully no one questioned the strange barking coming from my hospital room. Continue reading