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Cyclic Vomiting Syndrome or something else?
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Cyclic Vomiting Syndrome or something else?

Is Cyclic Vomiting Syndrome just a name slapped on a person who "throws up" for no apparent reason? Maybe my daughter has been misdiagnosed? There are some very specific factors that we have witnessed for 16 years - no drugs have been used for her symptoms or condition since she was 4, because frankly, nothing works....

I was just told about this site and immediately looked up what my daughter was diagnosed with back when she was 2 years old - CVS. I wanted to see what other parents were writing about their kid's symptoms and really it seems like the only common things are: the kid is nauseated, throws up, and is normal other than when they are having an episode. I would love to share my daughter's history and hear what other people out there have to say!

First, I might add this information... my daughter was diagnosed around 2 years old but the symptoms started as early as I can remember at 11 months - and maybe sooner (at first you just think they have anything but the flu - until you notice no one else is getting sick and there is a pattern). A doctor at Akron Childrens Hospital diagnosed her and put her on a couple different medications for "migraines of the stomach". The medication DID ABSOLUTELY NOTHING and so he kept wanting us to give her more - still no change for a couple years - in anything EXCEPT the medication had some side effects. I don't know about anyone else, but I decided my kid was NOT going to be the one to be experiemented on with drugs. I took her off the medicine SINCE IT HAD NEVER HELPED HER ANYWAY! So, I think my daughter is a great SUBJECT of someone with diagnosed CVS that has not had ANY medication for it since she was 4 years old. She is now 16.

Here are her classic symptoms in a nutshell: My daughter's vomiting is ONLY triggered when she is sound asleep at night - SHE HAS NEVER STARTED THROWING UP WHEN SHE IS AWAKE. She started out having episodes exactly every 8 weeks - for exactly 24 hours - throwing up every 20 minutes. Right when the 24 hours is up, she is TOTALLY back to normal and you would never think she had just been throwing up so much! My daughter's cycle has slowly stretched out from the original 8 weeks to 14 weeks over the past 16 years. Her episodes are still exactly 24 hours long, throws up every 20 minutes (retching) AND she still has only ever started an episode while she is sound asleep. She has never had to be hospitalized since she is back to normal after 24 hours. We just get her eating good as soon as we can to get her balanced out - which as she gets older - takes longer.

She is totally normal (incredible athlete, totally healthy, straight A student), except for, now, only 4 episodes a year for exactly 24 hours... however, these episodes are totally debilitating. She has to be in a dark room without TV or ceiling fan, otherwise it sets her off. She really can't move. I know this sounds like a person with a migraine headache but I will add ONE OTHER INTERESTING FACT... she has never had a headache in her life EXCEPT this past June 1st - 1st one ever - but it was very mild! I also might add this - she has 3 sisters and each of them are normal.

So, CVS or something else? Well, it is definitely cyclical, which I might add, many of the other stories I have read about AREN'T based so much on a calendar as my daughter's totally is! You can pin point her episode to within a weeks time... she is due to throw up again the first week of volleyball season in the fall and we are just hoping it won't hit on the day of her first match since she is the setter!

Does anyone out there have something similar to this? - particularly, the fact that she is triggered from being sound asleep at night? Has anyone out there had migraines on a cycle - that you can put on the calendar at regular intervals? I even thought that maybe she was having actual migraine and her body was reacting to them but she didn't feel pain in her head - ?

Okay, I need to add one more interesting thing. Back when she was younger and I was researching everything about CVS, I read about some study that suggested CVS might be related to something she was eating (I know some people has said food alergies (allergies)). This one story I read was about a kid who ended up not having episodes after he quit ingesting anything with fluorine. I thought we would give it a try and for 8 solid weeks we were totally faithful to not letting my daughter brush her teeth with city water, no fluorine in her water OR what I cooked with... SHE SKIPPED AN EPISODE, and I thought I was brilliant. HOWEVER, this was the ONLY episode she has every skipped in 16 years. It came back 8 weeks after the skipped episode for only 12 hours instead of the typical 24... and then the next 8 weeks, came back in full force. I have never gotten it to skip again. It's like her body adjusted itself to my experiment and I was only able to "shock or surprise" her system once.... interesting...

So, I know it was long-winded, but I would love to hear from anyone interested, and share information!  ~~~ An Inquisitive Mom
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Avatar_f_tn
I'm not a big 'blogger" but was in search of someone...anyone who thinks CVS is a ridiculous label doctors have put on something or many things, for that matter, that they don't know what it is.  They have just put my 14 year old son on the "watch" list for a CVS diagnosis.  We must wretch and vomit 3 more cyclical times before a firm diagnosis.  He has never been sick, never had headaches (still doesn't) just has had two vomiting episodes--first one lasted 14 days, three of which were in hospital for dehydration and two weeks later, another episode that has lasted 6 days (3 in hospital).  They were quick to want to send us home with Elavil,Prevacid, Zofran, Sumatriptan, etc, etc.  I am anti medication if at all possible.  I have controlled his ADD with diet his whole life.  Not planning on medicating him to death now.  I absolutely think it is either food or additive and I am going to reserach the Flouride component since you mentioned it.  Looks like you've been doing this a while.  Good luck:-)
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Avatar_f_tn
First time posting, but seven years of research and doctors visits and over 200 days of hospital stays later, i finally found another parent with a child who has this odd diagnosis as well.  I am refering to my little girl who is now 7. Start from birth. My baby was born not breathing and blue. Got that under control. During that extensive stay in the hospital docts found she was severely anemic and lost a bit more weight than they liked so i was to take her immediately to new pediatrician. Yes, she still was extreemely anemic and kept losing weight. was put on supplemental iron for first year of life twice a day (fun) during first year we noticed she projectile vomited any and all formula including breast milk and to top that off she had chronic constipation where i had to help her bm daily, again fun. She was found to be allergic to all formula including my own breast milk so she was ordered to be put on this soy formula pre forufied already digested formulla at 35 dollars a can. Still no weight gain and major vomiting. her GI specialist ran hundreds of tests to rule out major illnesses and found she was still anemic almost two now, failure to thrive, malnurished due to inability to keep formulas or iron or baby food down at a normal rate. she was then diagnosed w a devistating disease called cystic fibrosis becasue to top every thing off she had chronic bronchitis and abnormally low oxygen levels in her blood. Second opinion and no cystic fibrosis thank god because the death rate was like at age 12. She stayed the same weight for three years and like ur child her vomiting episodes seem to have followed a cycle. hers was every 6 weeks on the dot but her vomiting lasted for two to three weeks at a time so of course right away she would be admitted to children hospital and even all the meds given, nothing worked until they ended up giving her lidocaine through the IV so she could not feel the pain in her little tummy. We basically lived at the hospital with her for the first 5 years of her life. The episodes would start around 1 am and she would vomit every two minutes to five minutes tot he point she only vomited foam and phlem like substances and then blood from the acid. of course i would not play around and rush her to er within an hour of her episodes and in that first hour of vomiting she would become so dehydrated the iv team would have to sedate her to put in iv because her veins were almost non existent. still no diagnosis many tests CT scans to check for tumors. Doctors where stumped. Every test came back clear for any illnesses like rota virus or stomach flu or bacteria. she was not contagious. no fever. in between episodes she was active and is also a gifted child w high IQ even though she missed more than half of school. But normal as she was she still would not eat or gain weight and would have bronchitis/asthma attacks in between with UTI's and ear infections then 6th week and she would vomit for another 2 weeks even in the hospital. Again her GI specialist re ran all the tests he previously ran and said she has GERD and cyclic vomiting syndrome. She had the PH probe in her for 48 hours inserted through her nose and multiple biopsies on her tummy, intestines, and esophagus.  Now to add to all of this she has started to bruise easily on her legs and lower back. i dont get it. is it related? you feel so helpless and aggrivated as a momma u cant help her but at age 7 she is used to it by now. she expects it and knows the outcome. she is not frightened at all and is very confident. she is stronger than i am. she recently was weighed and weighs in at 42 pounds at age seven. she finally gained 7 pounds after three years of being stuck on that weight. her father and i are at our witts end because we feel that CVS diagnosis is just an excuse as well. no head aches, nothing, it just happens with no warning but we are prepared now after 7 years of this. We find it hard to hold jobs due to this but no employers care one bit because no one understands this CVS.  how do u keep a stable job first of all and what other options are their outside of CVS? oh, not to mention she is allergic to most things that have milk in it except for cheese. she and we have had a rocky first seven years of her life, I am almost considering seeing a rare disease doctor who specializes in things that other doctors cannot diagnose.  I know this forum was answered a while back and im not sure if any of u still check the site but u are not alone in this
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Avatar_m_tn
First I want to comment that not all migrains hurt.  They occurr inside the brain where there are no pain sensors.  The next thing I notice is these episodes begin during sleep.  If they are so reliable that you can put a calander date on them, then you should schedule a sleep study and see what's happening in the brain.  The pattern you described seems to revolve around the autonomic nervous system.  The regular cycle seems a mystery.

I would like to ask if you've noticed a redding of skin at the ears and neck.  Possiblly also the face and chest.  If these are present then autonomic dysfunction is pretty likely.  If that's the case you should check her blood pressure during her next episode.  If it's very high then go right to the E.R. and don't forget to mention the redding of skin and possible autonomic dysfunction.  Just giving you something more to think about.  Do your research and I hope that it in some way helps.
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Avatar_m_tn
Hello everyone! First, I am sorry for those going thru this. I am a 54 yr old female. I had never heard of this until my last hospital stay last week. I thought the doctor was being sarcastic or just saying something for the sake of saying, because, I don't suffer with migraines. I do, however, have some unidentified grey matter in my brain, (diagnosed in 1994), and have MS. These exact symptoms started for me about a year ago. Hits every few months, only after 10p.m., blood pressure raises first, then extreme tummy pain, sit on potty for loose bowel, put garbage can in front of me, break into deep sweat that turns to chills and vomit waste, then pints of bright red blood. Each episode produces more blood. This last time, I filled a 2 quart pitcher half way, of just blood. More at the hospital. Unfortunately for me, I am on opiates for my MS and chronic back pain. The EMT's always ask for my drugs and once at the hospital, they are asking me questions about my drug use and leave me unattended in my own feces, urine and vomit soaked clothing and bedding, for hours on end. I vomit about every 20 minutes for 18 - 24 hours, but during that time, my blood pressure is so high that I can't communicate well and seem, "out of my head", that's what I call it because I feel so weak, disoriented somewhat and not able to answer their stupid questions. I know enough to be aware that they are treating me as a drug addict withdrawing from my opiates, like I took to much and now I'm out or what ever they think I may have done with them. I have never abused my drugs. At any rate, it is demeaning and debilitating. This last visit, I was unattended for 6 hours in my slop. I begged, I cried, I vomited on their floor and of course, defecated and peed myself. When they finally came in, the nurse wanted to know why I threw up on their floor! Amazing! Also, because they left me for 6 hours, I was now 8 hours late for my Morphine Sulfate 60mg dose and the 2mg hydromorphone. So yes, now I was starting opiate withdrawal. I don't know why this just started. It seems to be more of a childhood syndrome. Why now? What is going on? Am i dying? No one has answers. Is it gastrointestinal? Any advice, help understanding, etc. is greatly appreciated. I have about 3 and half months before I purge again. This one is time number 6 since last year sometime around January or February.  
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Avatar_m_tn
I have cyclic vomiting syndrome (CVS) and have had it since I was 11. It took 18 long years to get a diagnosis and this disorder nearly killed me 3 times. Seriously, I almost died. There are many symptoms for CVS, but most doctors don't know what they are and misdiagnosis happen, I'd suggest seeking out a physician that specializes in CVS before you go with another doctor's diagnosis. Also, you do NOT have to have migraines to have CVS, I don't know where you heard that but they were wrong.  But everyone with CVS does get migraines of the "gut" and they are hell. Everyone with CVS has a list of triggers, mine are lack of sleep, loud noise, spicy food, dairy, greasy food, alcohol, pregnancy and many other things. I'm also on several medications now to control the CVS, and before those meds I was sick all the time, they have changed my life in a positive way, without those meds, I'd be living in a CVS hell. I'm not one to use medications usually either, I prefer the homeopathic remedies, but with CVS they don't work at all, the only homeopathic thing that helps is hemp oil and medical marijuana. I hope your child has been misdiagnosed because CVS is a horrible hell to live with, absolutely debilitating in the worst way. If she doesn't have pain in her stomach during an episode, it may not be CVS, the pain is so bad I've prayed to die before. Best wishes for you and your child.
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