What makes Cyclic Vomiting Syndrome Different?

• My child throws up once a week in the early morning... He only throws up 4x between 5am-8m Why?
• Every time my child gets overtired they throw up overnight a couple of times..why?
• My child throws up every couple of months in the early morning and then recovers in hours and no one else ever is sick...what is this?
• My child throws up so intense and pukes 5 or more time an hour  for several hours cannot keep fluids in and keeps ending up in the ER to stop the vomiting... Why?

There are hundreds of reasons why children throw up in childhood. Some have sensitive gag reflex, food allergies other, stress, eating too much, viruses, enlarged tonsils or even a developing digestion system....

So what makes CYCLIC VOMITING SYNDROME different??? 

They key diagnostic criteria that sets it apart from all of these is THE INTENSITY. 

According to Rome IV criteria 

• Occurrence of 2 or more periods of INTENSE, UNREMITTING nausea and paroxysmal vomiting LASTING HOURS to DAYS within a 6 month period.
• Episodes are stereotypical in each patient
• Episodes are separated by WEEKS to MONTHS with return to baseline health in between.
• AFTER appropriate medical evaluations, the symptoms CANNOT be attributed to ANOTHER CONDITION.

International Headache Society (ICHD-III beta criteria) describes it as :

1. At least 5 attacks of INTENSE nausea and vomiting  and fulfilling  2 and 3.
2. Stereotypical in the individual patient and recurring with predictable  periodicity 
3. ALL OF THE FOLLOWING
1. At least 4 attacks per hour of nausea and vomiting
2. Attacks last more than 1 hour and up to 10 days
3. Attacks occur MORE than 1 weeks apart
4. Complete freedom from symptoms between attacks
5. NOT ATTRIBUTED TO ANOTHER DISORDER

North American Society for Pediatric Gastroenterology, Herpetology and Nutrition (NASPGHAN)

1. At least 5 attacks in any interval, minimum 3 in 6 months 
2. Episodes of INTENSE nausea and vomiting lasting 1 hour-10 days and occurring at least 1 week apart  
3. Stereotypical pattern of symptoms in the individual patient
4. Vomiting during attacks occurs at least 4 times per hour for at least one hour.
5. Return to baseline health between episodes
6. Not attributed to any other disorder.

What other features that distinguish CVS from other reasons for vomiting....

Or another chart that compares chronic vomiting vs cyclic 

Is it still Cyclic Vomiting Syndrome

 if it meets some of criteria but not all?

LINKS TO MEDICAL INFO REFERENCED ABOVE

1. fleishers-empiric-guidelines.pdf (cvsaonline.org) 2008
2. Sept07VenkatasubramaniArticle.pdf (ficomputing.net)2007
3. Managing cyclic vomiting syndrome in children: beyond the guidelines | European Journal of Pediatrics (springer.com) 2018

Childhood periodic syndromes. Click link to full medical journal article. 

Cuvellier JC1, Lépine A.

Abstract

This review focuses on so-called "periodic syndromes of childhood that are precursors to migraine," as included in the second edition of the International Classification of Headache Disorders. Presentation is characterized by an episodic pattern and intervals of complete health. Benign paroxysmal torticollis is characterized by recurrent episodes of head tilt, secondary to cervical dystonia, with onset between ages 2-8 months. Benign paroxysmal vertigo presents as sudden attacks of vertigo lasting seconds to minutes, accompanied by an inability to stand without support, between ages 2-4 years. Cyclic vomiting syndrome is distinguished by its unique intensity of vomiting, affecting quality of life, whereas abdominal migraine presents as episodic abdominal pain occurring in the absence of headache. Their mean ages of onset are 5 and 7 years, respectively. Diagnostic criteria and appropriate evaluation represent the key issues. Therapeutic recommendations include reassurance, lifestyle changes, and prophylactic as well as acute anti migraine therapy.

WHY DOES IT MATTER??

It matters to the families who children do have this intense vomiting that does not respond to basic medications (over the counter or zofran) , taking sips of fluids and end up being sick for days unless seeking treatment. 

It matters when we tell ER staff he or she has been throwing up all day meaning more like at least 4 more more in the first hours and then usually it increases to more like 6-10x hour there after ... so easily an episode is 50x a day if medications don't work. Sound extreme? Like exaggeration? Its not ... its the truth of Cyclic Vomiting Syndrome and fits the criteria currently established last updated in 2008 to distinguish it from other vomiting/ belly pain conditions.

It is important to be clear when talking with medical providers what "all day" looks like... 2x in the morning and 4x at night is a very different than CVS episode. This type of vomiting or rate of 1x an hour is more consistent with abdominal migraine presentation or chronic vomiting.... 

Do you see the difference? Its not to say that vomiting 4+ times an hour for multiple hours is any worse than the unrelenting pain. (Honestly I think abdominal migraines are harder to deal with  because dr never know what to do with that... vomiting they are quick to act to prevent severe dehydration.... but pain not so much).

If we want to be the best advocates for our children knowing the difference helps us to communicate the situation better.  If the medical team is not familiar with Cyclic Vomiting Syndrome they might look up basics and the criteria to review....

 What happens when you come in and claim it CVS and don't fit the criteria....

1.. The ER staff might assume its just a variation or mild form....

                                                   or

2. The ER staff might just think you have a doctor who just dumped all unexplained vomiting into this rare diagnosis to give you a condition or billing code for your  records to document .

                                                    or

3. They might just say again you were internet diagnosing yourself.. and thus odds are its just a virus... or a kid who ate too much chocolate cake. 

            If we are going to HOPE for a cure... we have to have an idea of WHAT it is we are trying to cure one thing at a time.... We might get lucky that one type of treatment will help both conditions but odds are these distinctions matter. The more specific we are about what a condition is the easier it is to study it and try specific treatments based on similar presentations. 

EVERY KID IS DIFFERENT .....AND A MILLION TYPES OF  VOMIT ONLY A SMALL PORTION OF KIDS WITH INTENSE VOMITING HAVE CYCLIC VOMITING SYNDROME.

CVS is no longer considered to be rare anymore!! 

Still only 3-5 % of children suffer with it. 

In our family we have all kinds of kids who puke... One who when younger could throw up early morning couple times a week, it was challenging and annoying as well heck... yup... for that one it was enlarged tonsils triggering the gag reflex... It lacked intensity despite its's stereotypical onset and duration...Getting his tonsils out and age help that child stop the puking. This child still puked in foreseen ways after that.... seeing gross things in the trash continued to get him sent home from school at least once a week for next 2 years....

My CVS kiddo on the other hand was always an intense unremitting vomiting type.. Once he started I knew he would not stop and it resembled something you'd see on an episode of House. No stop retching to the point of brown/ black slimy goo coming out even after they put in IV and gave zofran.  At age 3 was his first hospital stay for dehydration...He had been in the ER had fluids went home and it still continued so we ended up returning hours later because the vomiting still had not stopped. He didn't get dx til age 5 when even getting zofran around the clock for 7 days it was still ongoing...

I have another child who I swear at age 13 has thrown up maybe 4 times in her whole life...... 4 times period if they didn't look alike I'd wonder if she was really related to them :)

Even on our first Disney trip in April ... out of 6 kids 3 of the ended up throwing up on the trip.... One had motion sickness and might have thrown up average 4-8x a day but was other wise totally fine.... Another only threw up the first night there... maybe about 6x overnight...his history is the excitement factor..(usually he just spikes 102 fever for few hours when traveling this time he decided to throw up a lot) Neither one of them have CVS.... those vomiting episodes though stereotypical for them under certain conditions etc... and a lot of vomiting still lack the dx criteria to be considered CVS and even with family history.... IT'S not all CYCLIC VOMITING SYNDROME 

So what does this mean for our Cyclic Vomiting Syndrome Community?

To use the term Cyclic Vomiting Syndrome..... I hope that all of your can say that your child has met the intensity of vomiting piece of 4x+ an hour for at least an hour. I know with medications use we can get it to less than that...sometimes.... But the HALLMARK to CVS is the intensity of the vomiting and unrelenting nausea.. which often leaves children lying on the bathroom floor unable to move or swallow their own saliva..... If your child is walking and talking eating and drinking in what you consider the peak part... its not CVS.

Mild CVS  would refer to those who's intense episodes are 3-4x a year... and respond well to medication, or short in duration (couple of hours not days).

Kids with ongoing dull or moderate belly pain that never seems to leave is more an abdominal migraine and looks different... And yes a child can alternate between both types of episodes... but knowing the difference... helps communicate better.... and medical teams to trust us and know we understand the conditions we are helping our children live through. 

From age 4-9 my son had vast majority Cyclic Vomiting Syndrome type of episodes and a handful of abdominal migraines thrown in there.....Around age 10 he began transitioning to traditional migraines with a couple of Cyclic Vomiting Episodes thrown in there as well.....I tend to keep track of the differences and how many of each type he has so that we can work with his Neurologist to design a plan that knows how to respond to each type.... and we do treat them differently with 2 different med plans of how to respond to them. Knowing his factors are key to leading to a cure or better management to his vomiting episodes given his presentations and underlying related medical conditions.

Vomit is NEVER FUN for parent or child. 

But I'd invite you to look hard at the criteria and talk with your medical team how much your child's vomiting fits the criteria. Do they have abdominal migraine type or cyclic vomiting type?

Not every diagnosis of Cyclic Vomiting Syndrome given is a final diagnosis... often in children its a working diagnosis until other reasons can be sorted out through either time or further testing....What tests should be done will be topic for next post in the coming weeks.

THE END GOAL OF ALL THIS

 IS TO HELP AIM TREATMENTS 

TO AVOID THIS THE BEST WE CAN