Cyclic Vomiting Syndrome (CVS) Rare Disease in Adults and Children - My Experience
Cyclic Vomiting Syndrome In Children
What Is Cyclic Vomiting Syndrome?
Cyclic Vomiting Syndrome, also known as CVS, is a health condition where the body recurrently has severe vomiting for no apparent cause. These episodes can last from several hours, to several days. Cyclic vomiting is a rare childhood health condition. The disease is hard to diagnose as a patient will look healthy as can be in between episodes and is sporadic and un-predictable.
CVS is an unexplained disorder of children and adults that was first recurrent, prolonged attacks of severe nausea, and vomiting, with no apparent cause. In some patients, there is severe abdominal pain. Vomiting occurs at frequent intervals for hours or days (1-4 most commonly. The episodes tend to be similar to each other in symptoms and duration and are self-limited with return of normal health between episodes
When you watch your child go through a CVS attack, it's heart wrenching. I wrote this to help someone else who may have a child that has this disease or maybe a mother who can't get any answers to their child symptoms. Trying to diagnose this condition, took almost 17 years. It's rare, but not that so uncommon. Watching your child suffer is the worst thing on a parent. It's especially tiring when you are fighting with Dr.s and they can't seem to get it diagnosed because it is a rare disease. Let me tell you first hand, this was horrible to watch my son grow up this way.
If you are a parent and has a baby or child that has any of these symptoms and can't get any answers, it is possible that this may be helpful to you. As you read the story below, you will find out what happens when the attack happens and what to look for. Please read thoroughly and if you have any questions and I can help, please feel free to ask.
Cyclic Vomiting Syndrome (CVS) Attack
Symptoms of Cyclic Vomiting
These signs and symptoms of cyclic vomiting (CVS) my son had happened about 80% of the time after he got done playing outside or just got too hot. Over-exertion also would cause these symptoms:
Sleeping for hours (feeling drained)
Curled in fetal position from abdominal pain
Crying because of abdominal pain
Our CVS Story of Episodes
It all started about 2 months after my son was born. After he would be given It his bottle, he would then regurgitate half the bottle back up. He would choke and turn blue and would scream for hours and hours. He would straighten his legs and his little fists would just clench so hard. We took him several times to the emergency room because he was dehydrated all the time. He would actually keep throwing up at the emergency room, but no fever or anything. All his tests would come back negative.
To make a year long story somewhat short, they kept sending us home telling us nothing was wrong. We returned to the emergency room almost 3 times a week due to hydration and vomiting. He was losing weight, and would just scream and cry so hard it made us cry. They would sometimes keep him overnight and give him IV's to replenish his electrolytes. We switched Dr.s several times because I knew in my heart, something wasn't quite right.
At 9 mths of age, we took him to the Carle Clinic in Champaign, IL. We found a very nice Pediatric Gastroenterologist who said he would run some different testing. They said he had a rare form of reflux and they would do a surgery on him called a nissenfundoplication.
The procedure was a pretty major surgery. They took a piece of the top of his stomach and wrapped it around the bottom of his esophagus and had to sew it shut to help keep him from vomiting. Well, low behold, the surgery actually stopped him from vomiting and he started gaining weight again. He was so lethargic all the time and lost so many vitamins & electrolytes, that he didn't even sit up until he was a year old. He started walking at 17 months. We thought everything was good now and he was on his way to recovery.
Statement From Someone With Cyclic Vomiting
Heat Exhaustion And Vomiting
Getting Sick In Hot Weather
When he was able start running and playing around 3 or 4 yrs old, we would go outside and play and after about half hour, sometimes more, sometimes less, of playing, he would curl up on the couch and go sleep. He would get up, go vomit, then go back to bed. He would sleep sometimes for 3 hours, and other times, it would be from 5 pm at night, until the next day. I remember one time I took him to a garage sale and it was hot that day; We walked up to the sale, and he said, "Mom, I gotta throw up." The lady let us in her house and he vomited and sat on her couch and she gave us a very cold rag to put on his head. This is what we had to do every time it got hot out.
This went on for several years, and believe me, I took him and called the Dr. weekly. They thought he had something wrong with his heart, so they put him on a heart monitor for a month. Every time he would have an attack, I had to attach it to the telephone and they would read it. That came back normal. I could go on and on. As I think back, he had some small signs starting at 2 yr of age, but wasn't as active, so it was just so hard to really notice anything significant.
Cyclic Vomiting Attack Starting
About 10 Years Old Until Diagnosed With CVS
We were referred by his pediatrician to take him to the Children's Hospital in Chicago. The Neurologist there took some tests and said he had Cyclic a condition called Cyclic Vomiting Syndrome. He said he treats about 400 cases a year. Basically, it starts off in newborns as vomiting , then as they get older, it turns into severe abdominal pain. Then, in teenage years, it turns into migraines. This was an absolutely hard time for us. We could not figure what was wrong with our son.I went from Dr. to Dr. and no one would take us seriously. Long Nights and Worries.
There were so many nights that my son screamed for hours and there was nothing I could do. I called the Dr. almost 3 times a week and begged that something be done, but they couldn't find anything.
13 years Old With CVS (Cyclic Vomiting)
He still can't exert himself, especially when its over 65 degrees. I still get the calls from school when they run track or play inside and have to run. The vomiting has settled down, but the migraines are horrible. He will come home and lay down for several hours to get rid of the migraine. His neurologist actually told him he needed to move to Alaska.
The University of Chicago said that he probably didn't even need the surgery because he didn't have a rare form of reflux. All along, he had CVS.
Chandra Wilson-Star Of Grey's Anatomy
Adulthood and Cyclic Vomiting
Basically, if he over-did it or got too hot, he was in trouble. Garage sales in summer were out of the question, running around with other little kids was out of the question. I can tell you so many stories we went through and the agonizing pain of what is wrong with your kid, would make your head spin. I had one Dr. tell us he was ruminating (which is making himself vomit so he could eat more) and my son was not even a year old. we have been through the mill and over the hills. You name it, it was said. I can go and on and on.
18 LONG yrs later, they thought maybe they had it narrowed down to really helping. He had to have a heart ablation done at 17 yrs old. He had an extra "wire" that was firing off in his heart. I'll have to write a whole other hub on this one.
But, thought I would update as he's pretty much a man now. The horrible vomiting and curled up in a ball phase has settled down. He still gets sick with a stomach ache and does vomit once in a while from it. He still gets very very pale, vomits (depending on how hot it was),and gets a horrible migraine. Much improved, but I think mostly it's because he has learned his limitations and if he does over-exert, he knows it was his choice to do so. There are still times that avoiding the heat is impossible, and therefore; he tries to take it easy on those days. Still limited to what he can do. We have found that the cold is his best friend.
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