What Is Cyclic Vomiting Syndrome? (CVS) About This Rare Childhood Illness: 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 and In some patients, there is severe abdominal pain. Vomiting occurs at frequent intervals. 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

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.

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:

• Vomiting
• Sleeping for hours (feeling drained)
• Curled in fetal position from abdominal pain
• Profuse sweating
• Pale
• Crying because of abdominal pain

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 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. We went from Dr. to Dr. and no one would take us seriously.

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.

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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.

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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.

I 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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Cyclic Vomiting Syndrome From THE Doctors TV Program

Cyclic Vomiting Information Video

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Lisa (author) from Central USA on July 26, 2017:

It's a bad situation. Most doctors are not even hardly aware of this disease or condition. You need to find a doctor who specializes in Cyclic Vomiting. There is a CVSA website that may be able to guide you or perhaps give you some information. I fought for several years and it was a nightmare and horrific for our son and me. Prayers go out to you and your child. Please see www.cvsa.org

rachel robson on July 05, 2017:

My son has suffered since the age of 4. He got diagnosed last October at the age of 11. He is now 12 and seems to be suffering more with migraines. He has a lot of time off school and school are not understanding. We are in the UK. Its good to read that we are not alone with this condition.

Lisa (author) from Central USA on May 08, 2017:

You know I don't believe the doctors actually knew for sure on whether he had cyclic vomiting syndrome or not… It was his heart and had to have an ablation on it - he was literally sick every day that it got over 75° outside. They diagnosed him with cyclic vomiting syndrome but after he had the heart ablation, he seems to be doing a lot better and can at least get hot without throwing up. They did say, when they thought he had the cyclic vomiting, that when he got older it would just turn into regular migraines instead of abdominal migraines… So I'm not actually 100% sure if the heart ablation helped fix it or because he's a man now. And I totally understand what you're saying about being a hypochondriac. My son lived in the emergency room at least three or four times a week and was in the hospital for days at a time because he was so dehydrated from all the vomiting. It may not hurt to go see a neurologist or a cardiac surgeon just to have the heart checked to make sure that that isn't the problem… We only got it caught because he wore a monitor for a week and then whenever he wouldn't feel good he would put the monitor on and his heart rate got up to 200

Mr. M on May 08, 2017:

I have been struggling with nausea since I was a child. I have been to many gastroenterologists and have been told everything from im a hypochondriac to simply"you are wired wrong", no relief or from the naseau. I will spend days vomiting and living in the hot shower. I have never heard of this condition and am very pleased to see a possible reason for sickness...i spend most of my time in bed or trying to stop naseau..and my son acts similiar to the way i did as a child and i am very concerned that he will live the life i have lived of constantly having to explain why your sick and cant tell anyone what the problem is, not going anywhere, lathargic all the time......im glad to see this article so maybe i can protect him from the depression and anxiety that follows this sickness

lisa on September 21, 2014:

M 18 yrs old son kept vomitting for over a week. unable to eat anything,he's getting very week..Also believe that my son have been smoking weed since 15 yrs old. can you please advise what i should do?

Lisa (author) from Central USA on April 18, 2013:

I remember those days scared to death about the heat...and yes, he called nearly every time sicker than a dog. First of all, you need to speak with his teacher directly if you have not done so. Also, speak with PE teacher, principle, etc. Let every teacher know of his situation. Secondly: on the field trip-- specifically tell the teacher and chaperones he needs to drink gatorade/water every 1/2 hour at minimum. In his backpack, I would pack him a large ziplock bag with ice and a wet wash cloth to cool down. Even a wet bandanna in a lunch pale to wrap around his neck. I was once told we needed to move to Alaska..yes! Not kidding! Was told to get my son a cooling jacket from NASA- However--Besides the cyclic vomiting, I would suggest the cardiologist visit..SVT, VSD, PAC can go hand in hand with CVS...please email me if you need to!! Good luck to you and I understand the situation whole heartedly! It's a nightmare, it's frustrating and scary! OH!! Also, try Excedrin migraine one hour before he leaves for the trip and take every 4 hours for prevention.. keep him hydrated!

SoloMom on April 11, 2013:

Well I drove an hour to my son's gastroenterologist because my son has had encopresis for about 4 years now which is not getting any better. I told the doctor all about the headaches, sweating, over heating, vomiting, etc. but before I could finish he interrupted me and said he treats lots of children with cyclic vomiting and he has never seen it associated with over heating. He said that because the vomiting is usually precipitated by an extreme headache he thinks it is migraines and suggested I see a neurologist. I have been telling doctor's for years that my son can not handle the heat at all and they all just dismiss it. He has field day at school tomorrow and the temp is supposed to be in the 80's and I'm terrified he will have heat stroke. He would never be able to play a summer sport outside. That is just not normal. I don't know if it is cyclic vomiting or what it is but finding a doctor who will listen and investigate is ridiculously difficult.

Lisa (author) from Central USA on April 09, 2013:

first of all, I am SO very sorry about what you are going through! It is a NIGHTMARE that only a mother and father can understand. I am not sure if you read about VSD or SVT (supra ventricular tachychardia) which was eventually what he was diagnosed with at 17..they said it basically goes hand in hand. One can cause the other. Let me tell you this, "do NOT give up and do NOT stop trying to get an answer. The fight for your child is tedious and hard...make sure he is well hydrated at all times. We did get backpack with water filled up and it had a tank in it with a straw that wrapped around his neck. Head bands that were soaked in icy cold water during summer..If there is anything I can do or help in any way, please feel free to contact me anytime! I really feel your pain and frustration.

SoloMom on April 09, 2013:

My son has always been very sensitive to heat. I picked him up from school yesterday and he had just had recess. He said he played on the swings the entire time and it was only about 75 here yesterday but he was overheated. Before we got home he had vomited all over me. I'm not sure if he has cyclic vomiting. He has the majority of symptoms but the vomiting is not always present. He gets so overheated though and it does not even have to be very hot out. His face turns fire engine red and his hair will be soaked with sweat meanwhile his friends look perfectly fine. He does get severe headaches recently usually followed by a night of vomiting and then he is totally normal the next day. Yesterday we got home and he was lethargic for about 3 hours but then ate a big dinner and went out to play for a little while. I have asked his doctor for years why he gets overheated so easily but never get a real answer. He used to spit up terribly as a baby. I tried every type of formula and nothing worked. I recall one day changing his clothes 15 times because he soaked them with spit up. He grew at a normal rate though and eventually stopped spitting up. I remember as a small child...maybe 2 yrs old...he would have such sweaty feet. His little socks would be soaking wet. When he got a little older he would just sweat a lot more then other kids. I'm going to ask his doctor if it could be cyclic vomiting.

marie on December 26, 2012:

My daughter was 7 months old when she started having episodes of projectile vomiting. They always started while she was asleep and I was very concerned about her aspirating on her vomit. The episodes became more sever and would last from 2 hours up to 4 days. She would become completely unresponsive, projectile vomit and retch so bad her lips would turn blue. She was extremely sensitive to light and sound. I would actually hang blankets over the windows. She was even hospitalized for 3 days because of acidosis during an episode when she was 2. Periactin did nothing to help her. Cranio Sacral Therapy (a more natural approach) did wonders on releaving her vomiting. Eventually her neurologist (3 later) suggested Topamax and IT WORKED!!!!. This was just before she entered PreK. After being symptom free since the start of the Topamax in 4th grade we decided to take her off her meds hoping she had outgrown CVS. She is now in 6th grade and has never had another "true" episode. She has had a couple dizzy spells and had very bad stomach pains for 3 days straight. Bad enough that we ran bloods, urine, and did an abdominal xray. The only thing that came back alarming was her Alkaline Phosphorus was extremely high. We repeated her bloods 1 month and 6 months later and they came back normal. I hope and pray that when she starts into puberty CVS does not return.

Jackie on November 20, 2012:

I think you might have given me the answer to my son's vomiting. He is now 11 and nobody seemed to take me seriously.

Lisa (author) from Central USA on November 08, 2012:

Have you tried the University of Chicago Children's area?

Diane s on November 07, 2012:

wondering if you know of any Doctors in the Chicago/Hinsdale/Naperville areas that are familiar with CVS. We are going thru the diagnosis right now. Reading the info...my 21 yr old daughter does have this. We were very lucky. We ended up going to a hospital that has a pt. with CVS so they were open to the possibility that she may have this. This was her fourth visit to an ER just this year. Other times it was shorter in duration. Thanks so much!!!!

sunnysweets on October 27, 2012:

I'm a 33 year old former CVS sufferer. I didn't get a diagnosis until I was 21 and had long since outgrown the cyclic vomiting part. My dad says it started when I was about 3 and continued until I was an early teen. I remember having migraines, even as a young child and they continued to be prevalent until recently. To go along with this, I also had many allergies that went undiagnosed for a very long time.

I was hell bent when I had kids that they wouldn't suffer like I did. Because basically, I had no childhood. Over the 9 years of being a parent I've learned much about my kids' and their bodies. My children are all very chemically sensitive, have various food allergies and intolerances and seasonal allergies as well as being anxious at times. These were all similar in me. I noticed early on with my daughter that she was extremely sensitive to most chemicals and ended up with chronic headaches at about 2 until I changed all our cleaning products and detergents and removed most food colorings from her diet. I was so worried she was going to follow in my footsteps. I have to say though, that we have avoided CVS so far. But I am extremely cautious in their diets, products we use and my kids are homeschooled to keep them away from chemicals that could be used around them that could cause them to be sick. I know most of my attacks happened on Mondays after I had been back in school and could clearly smell the chemicals that the school had been cleaned with.

Maybe what I've done has helped, maybe my kids weren't going to develop it at all and I'm going to crazy lengths for no reason but in my heart I really feel like removing allergy stressors and chemicals has made a big difference. I know that when I was in the midst of an attack, if my parents gave me an antihistamine it helped. I know now that with certain (not all) migraines I get, antihistamines still help. I also know that since changing our diets and cleaning products has dramatically reduced the number of migraines I have. So I have little doubt that allergies in some form are related.

Good luck to all you parents and kids out there with CVS, I pray you find answers and relief!

Lisa (author) from Central USA on May 11, 2012:

If I may, have they checked her heart by chance? My son had an extra "wire" in his heart, called a supraventricular tachycardia. SVT They did a heart ablation, and he has since then been much improved, but still has the symptoms of CVS, just not as prominent. They didn't find it until 17 years later. It's just a thought. Let me know.. Also, call Dr. Li at the children's hospital in Wisconsin. He specializes is CVS and handles children's cases all over the world. Have you contacted them by chance?

denise on May 11, 2012:

That would be so good, Thank you :)

Katie was admitted to hospital on Thursday because she stopped drinking, she was on a drip for a day. The next day see was very quiet and wouldn’t talk she had 200 ml to drink and a few mouthfuls of food, the doctor sent us home, she was sick on the way home. Fingers crossed she keeps up the good work and carry’s on drinking and eating so we can look after her at home in till this terrible cvs clears. It makes me feel so bad when the nurses tell me it’s because of stress, Katie is always so happy at home and at school, There isn’t any stresses. Does anyone know what can cause this? Thank you so much for your help.

Lisa (author) from Central USA on May 10, 2012:

I am so sorry Denise! This is such a horrible illness and it does seem there is no one to help or no one understands. I will send you an email with some information I received and some contacts. Bless you and your daughter~

Denise on May 09, 2012:

My daughter is 7 and has cvs, The sickness comes back every 7 to 10 weeks and goes on for 2 weeks, she's sick at the moment and hasn't eaten for 7 days she so thin as she's not getting chance to put weight on,she's had two sips of water today and i'm worried she might dehydrate again. This is such a worry, It feels like there's no1 to help :( If theres anyone that can help talk about this plz email me at deejones03081980@hotmail.co.uk, thanks.

Denise

Lisa (author) from Central USA on May 05, 2012:

I am so sorry first of all to hear about your son. I know how you feel. Have they checked his heart by chance? Only reason I am asking, is because the CVS sometimes has something to do with a SVT (supra ventricular Tachycardia) It is a misfire in the heart (an extra nerve) I wrote an article on it you can read in my other hubs. My son had a heart ablation done, and it seemed to help tremendously. He still has a lot of the CVS symptoms, but he can at least be more active. I am not sure what all happens to your son. I recommend the cvsa.com website unless thats how you got to my article. Let me know if there is anything I can help you with. I am really sorry, I mean that. It is a helpless feeling

hinojos on May 04, 2012:

my son hates his life he got sick at age 16 he is now 21 he says he just needs to live this earth he has two kids age 4 and 1 its so helpless to see my son i wish it was me the doctor are no help at all all i can ask is way it hurts so much he needs so much help we dont know where to go or what to do at times !!!!!!!!!!

Lisa (author) from Central USA on April 03, 2012:

I have a great place to send you. That is to www.cvsa.org All kinds of families going through the same thing. They have message boards, help, anything. If there is anything at all that I can help you with, please feel free to let me know. It is a horrible and heart wrenching disease.!

Heather Winter on April 03, 2012:

Thank you so much for this great information! My son was recently diagnosed with CVS. He has had symptoms since he was 6 months old. Dr and Dr after Dr dismissed it as the stomach flu. It is comforting knowing that there is help out there for my son.

Lisa (author) from Central USA on March 24, 2012:

You are more than welcome. I am so sorry to hear about you being a CVS sufferer. From watching my child grow up with this condition, I know first hand what you are going through. Actually, second hand-As my son will say, "you have no idea what it feels like." I just see it from a mother's point of view in looking at what I see. It's horrible. God Bless

a on March 24, 2012:

Thank you so much for posting your story. I am sorry to hear that you have a child with CVS though. I myself suffer from CVS and it is a horrible thing to have. Many people have never heard of CVS even if they suffer from it because it is not known in the media. It took me three years just to get diagnosed because of doctors who had never even heard of the condition. Even nurses accused me of vomiting like this for "attention". As a CVS sufferer I am glad to see that you are trying to raise awareness on this disorder.

Lisa (author) from Central USA on March 21, 2012:

Wonderful news to see Dr. Li..he is one of the top specialists in the world on CVS. I am not sure what country he is from, but they say he sees about 400 cases per year from the U.S. I know first hand the total frustration and agony of what your child goes through, and you. Please keep me informed of what Dr. Li says, I would love to hear from you. God Bless and take care

ChristyDS on March 21, 2012:

Thank you SO much for this! My son has battled this for the past 3 years, and will actually be going to see Dr. Li in a few weeks. It was a long road of misdiagnosis, testing, questions, and frustration. We've tried so many medicines, charting possible triggers, charting the cycle... all the while I feel absolutely terrible for my poor son! I hadn't seen that episode of The Doctors, but it was so eye opening! Here's hoping we see improvement, and my son can lead a full and happy life!! Thanks again!

Lisa (author) from Central USA on March 20, 2012:

First, I am so sorry about your daughter. We went through literally hell and back. I would just make sure to watch out for dehydration, that was our biggest concern. After my son had the nissenfundoplication, he let up on the vomiting, but still got sick severely from the heat , he still does. At least they gave you a diagnosis early, we waited over 10 years. Go to www.cvsa.com That is the cyclic vomiting association network. Great information there for you. If there is anything I can do to help at all, please feel free to contact me. God Bless you and your family, as I know the horrible situation you are going through

Jody Davis on March 20, 2012:

Hi there, my daughter who is three years old is diagnosed with cvs ever since she was one years old she has been in and out of hospitals and dr. offices with one MAJOR symptom vomitting nothing else no fever no diarrea nothing. She was at first having vomitting episodes once every three months or so now it is every two weeks and every time we are addmmitted in childrens for dehydration for about 3 to 4 days till she is able to return home this disease is horrible, my baby has been through test after test after test and although relieved to have an answer it sucks that there is no cure and the treatment does not seem to be working for her but thanks for sharing your story its good to know that we are not alone in this hope u and ur family well take care.