Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome

Do you know a child who vomits for prolonged periods?

If the story told on this page sounds familiar to you, or if you have a child with any chronic illness, maybe the thoughts expressed in this prayer will help you a they have helped me. I hope so.
My Prayer for my Child

Cyclic Vomiting Syndrome Family Site

The CVSA is:
An organization for patients families and professionals providing support, education, and research for Cyclic Vomiting Syndrome

Is the child well between episodes?

This page is dedicated to my son Jeremy, and others like him, who suffer from an illness called 'Cyclic Vomiting Syndrome' or 'CVS'. On October 22, 1997, after 15 years of suffering from unexplained and undiagnosed recurring vomiting, we finally have a name for 'what ails Jeremy' and it's such a relief. I'm dedicating this page to telling Jeremy's story and hopefully helping to educate the public about this illness, CVS.

What you'll see here is 'Jeremy's story' (in blue text), interspersed with the entire text of a pamphlet (in black text) produced and distributed by the Cyclic Vomiting Syndrome Association. The text of the pamphlet has been included with the permission of Kathleen Adams, the President of the CVS Board of Directors. For additional information, please contact CVSA Administrator, Debra Waites at the following email address: cvsadwaites@computelnet.com You may also wish to visit the Cyclic Vomiting Syndrome Association Home Page at: http://www.cvsaonline.org . A link to this same site will also be provided at the bottom of this page along with other links to various sites related to CVS.

Cyclic Vomiting Syndrome - What Is It?

CVS is an uncommon, unexplained disorder of children and some adults that was first described by Dr. S. Gee in 1882. The condition is characterized by recurrent, prolonged attacks of sever nausea, vomiting and prostration with no apparent cause. Vomiting occurs at frequent intervals (5-10 times an hour at the peak) for hours to 10 days (1-4 most commonly). [*1.] The episodes tend to be similar to each other in symptoms and duration and they are self-limited. The child is generally well between episodes. [*2.]

When he was younger Jeremy would vomit every 5 to 10 minutes, usually for two to four days. About 2 to 4 times a year he would end up being admitted to the hospital for I.V. therapy for dehydration. The last few years, he vomits less often, maybe every 10 to 15 minutes and only for 24 hours or so but the bouts are occurring more often. He hasn't been dehydrated enough to need hospitalization for the last 3+ years. (I guess now that he's bigger '6 foot 2 and 150 pounds' he doesn't 'dry out' as fast as he used to.) He used to have occurrences every couple of months but the last year or so it seems to happen more like once every two or three weeks. Since school started this fall he's missed 3 or 4 days about every other week. Another difference is that he now occasionally gets just a bad stomach ache and is able to 'sleep it off' without it actually developing into vomiting.

Except for the vomiting bouts Jeremy is a normal, healthy, 16 year old. He loves to play baseball and lifts weights on a regular basis. He's slender but if you look at him you'll see he's 100% bone and muscle.

Occurrence

The onset of CVS occurs in infancy through adulthood but most commonly between age 3-7. [*1.] It can persist for months to decades. The episode may recur several times a year or several times a month. [*2.] Females are affected slightly more than males. The child may be prone to motion sickness, and there is often a family history of migraine. [*3.]

Looking back, I can't even remember exactly WHEN it began. Jeremy had a lot of ear infections as a baby (I'm not sure whether that's related in any way or not). He'd go on antibiotics and take it 'til it was gone and then three weeks from the beginning of the last episode he'd have it again. We had finally gotten to the point of taking him to an ENT specialist (about age 1 1/2 if I remember correctly) and were talking about putting in tubes when the infections went away never to return :) Sometime soon after this (I think) the vomiting started.

When he was younger, Jeremy used to get a 'bad' case (meaning one where he ended up in the hospital for I.V. therapy for dehydration) anywhere from 2 to 4 times a year. There were, however, other bouts with vomiting when we would somehow (with the aid of Phenergan Suppositories) make it through until the vomiting quit without having to have him hospitalized.

My daughter, Jaime, suffers from frequent, nearly disabling, migraines as does one of my sisters and at least one of my aunts. I also have occasional migraines.

Symptoms

Episodes may begin at any time, but typically start during the night or early morning. [*1.] There is relentless nausea with repeated bouts of vomiting or retching. The child is very pale and resists talking. They often drool or spit and have an intense thirst. [*2.] There is often intense abdominal pain and less often headache, low-grade fever and diarrhea. Prolonged vomiting may cause mild bleeding from irritation of the esophagus. [*3.] Patients often describe being 'possessed', out of control and stuporous. [*4.] The symptoms are frightening to the child and family and can be life-threatening due to dehydration and electrolyte imbalance. [*5.]

True. Jeremy usually wakes up this way or on rarer occasions, he actually makes it to school but has to be sent home by mid-morning.

Relentless!! That's the word all right. And yes, Jeremy gets about as white as a ghost and just wants to be left alone, though he likes to have me sit with him for a while, now and then. The spitting part fits too as he tends to get lots of sinus drainage at the same time and the thirst is a real killer. You can't win with that one because if they don't drink they just get dehydrated that much faster and if they do drink it makes them throw up immediately.

Jeremy tends to have sinus headache along with the vomiting sometimes and I'm pretty sure he's generally running a fever just 'cause he feels so hot. I don't bother to take his temperature any more (too hard to do when it makes him retch). As far as the diarrhea and esophageal (is that a correct word, do you think?) bleeding, we have been lucky enough to escape those symptoms, thank heaven!

I don't think Jeremy seems 'possessed' when he's having these attacks though I'm sure he feels 'out of control'. One thing we have noticed though is that he tends to get episodes of 'night terrors' in the night when he's in the 'recovery' cycle of this. He'll get up and walk around the house in the middle of a nightmare but he's not really awake. All I can do is try to calm him down and get him back to bed.

If you've ever been in this situation I don't have to tell you how frightening it is! And as far as life threatening, dehydration is no joke. I can remember back when Jeremy was just under 80 pounds... one time he dropped 20 pounds in a matter of 3 or 4 days. Think about it, that was a quarter of his body weight!!!

Diagnosis

CVS has been difficult to diagnose because it is infrequently seen in clinical practice and because vomiting may be caused by a large number of common disorders other than CVS. There are as yet no blood tests, x-rays or other specific procedures used to diagnose the disorder. The diagnosis is made by careful review of the patient's history, physical examination and studies to rule out other diseases that may cause vomiting similar to that seen in children with CVS. [*1.]

Difficult to diagnose? I'd say so. Jeremy has had this since he was about a year and a half old and has been to numerous doctors and had tests run at a 'Children's Hospital', as well as a 'Community Hospital', in Nebraska before finally being diagnosed at the Mayo Clinic in Rochester, Minnesota.

In the past he has had; enough blood drawn to create a pin-cushion effect, EGD's with and without biopsies, a CT Scan, an Ultrasound, and who knows HOW many other tests I've forgotten.

During the course of our consultation with Dr. Freese, at Mayo, she took a careful look at his background, asked for results of all the tests he's had in the past, and then had a 'Gastric Emptying over a 6 hour period' Imaging done, as well as an MRI of the head. (These tests are only to 'rule out' other possible causes of the symptoms, not to actually diagnose CVS.)

Triggers

Although some patients know of nothing that triggers attacks, many can identify specific circumstances that seem to bring on their episodes. Emotional stress, intense excitement (birthdays, holidays, vacations), [*1.] and colds or flus [*2.] are the most frequently reported triggers. Specific foods or anesthetics may also play a role. [*3.]

It's hard to remember back through the years, but I can say that Jeremy has come home sick on the morning of the first day of school the last two years, as well as missing a trip to New Orleans for the National Youth Gathering of the ELCA Lutheran Church this past summer (He had an upset stomach in the morning and was vomiting before the bus left for the trip. It took him 3 days to recuperate.). I can't say that 'stress' or 'tension' was always a factor though, 'cause, after all, how much stress does a two year old have?

Jeremy's illnesses are often associated with a cold or the flu. Sometimes using a nasal decongestant spray or taking sinus tablets when he feels a cold coming on seems to help clear the drainage out of his head and avert the onset of vomiting. Keep in mind that 'sometimes' may be one time out of five or six.

We have never been able to associate episodes with the consumption of specific foods, anesthetics, or anything of that sort.

Treatment

Treatment is generally supportive with early intervention in a dark quiet environment for sleep and I.V. fluids when needed. [*1.] Medication trials sometimes succeed in finding something to prevent, shorten or abort the episodes. [*2.] An essential component of treatment is the doctor-patient-family relationship. It involves a physician who does his/her best to understand CVS, is supportive and willing to coordinate the care in collaboration with all involved. [*3.] A family/professional network, such as CVSA, can help heal a family that has been in doubt and despair for years. [*4.]

Sleep does seem to help but sometimes it's hours before the vomiting tapers off enough to allow Jeremy to sleep. He did have one incidence just a few weeks ago when he felt like an episode was coming on in the morning, went to sleep, slept most of the day, and did NOT ever vomit. HURRAY!!!!!!!!

I.V. therapy is definitely beneficial once the child becomes dehydrated. Jeremy used to end up in the hospital on a regular basis after about three or four days of vomiting. Once an I.V. was started it always seemed like his stomach would settle down and he was usually released within 24 hours and back to normal a day later (whatever normal is for a child that has to live with this). Jeremy hasn't been dehydrated enough to need hospitalized since late in 1994 at age 13. Now that he's a lot bigger, he just doesn't 'dry out' as easily as he used to.

We're hoping to find some kind of medication that will help shorten or avoid episodes. In the past, Phenergan suppositories seemed to help the most, but we haven't used these for the past three or four years. Now that Jeremy has been diagnosed, we will be getting together with the doctor next week to work out a plan of medication.

October 31 Update on the medication situation:

We visited with Dr. Freese on Tuesday of this week and Jeremy is trying the following meds:

PROPRANOLOL 80MG
DOSEAGE: One tablet daily.

COMMON USES: This medicine is a beta blocker used to treat high blood pressure and angina pectoris (chest pain). It is also used after a heart attack. It's used in the treatment of migraine headaches. Since CVS is sometimes referred to as a 'migraine of the stomach', I guess that's where the connection comes in.

PROPULSID 10MG
DOSEAGE: Four times daily when ill.

COMMON USES: This medicine is a gastrointestinal (GI) stumulant used to treat heartburn or gastroesophageal reflux. It's also used to treat prolonged fullness after meals in patients with diabetes.

PRILOSEC - Added on 2/3/98
See Progress Report Below ****
DOSEAGE: Twice Daily.

COMMON USES: This medicine is prescribed for (in this case) for pain. I don't have the information sheet available right now but will add more when I refill Jeremy's prescription.

ZOFRAN 8MG
DOSEAGE: Three times daily when ill.

COMMON USES: This medicine is used to prevent nausea and vomiting. It is often used in the treatment of cancer patients for nausea occurring as a result of chemotherapy.

NOTE: I feel it important to point out here that the medications and dosages listed above are only what Jeremy's physician chose to try for his initial treatment. There are many medications that are being used in the treatment of CVS and may be used in dosages that are far different then those Jeremy is taking. The meds here have not yet been proven to work for Jeremy and if they do, they still may not be the correct medication or dosage for your child.

We've had good relationships with all of the doctors who have treated Jeremy in the past. The problem was, none of them was ever able to diagnose the illness.

I think the support of the people involved in the CVSA will be extremely beneficial to our family and to any other family dealing with this illness. Unless you have gone through something like this, it's hard to imagine how great it feels just to know that it is a 'real' illness and that there are other people out there dealing with the same thing. The CVSA has a wonderful 'mailing list discussion group' which allows members to connect with each other to talk about CVS and any related issues. Patients, families, and professionals can subscribe to the discussion group by filling out a form on the official CVSA Home Page at http://www.beaker.iupui.edu/cvsa/cvs.html. (This link will also be included in the link section of this page.)

I'm including progress reports on Jeremy as time goes by. You can access those reports by following these links:

March 1998 Updates

Related Terms

abdominal migraine, bilious attacks, periodic syndrome, recurrent vomiting

Quotes from the pamphlet:

In the words of patients, families, and professionals.

Credits

Fleisher, D. and Matar, M. (1993), 'The cyclic vomiting syndrome: A report of 71 cases and literature review" J Pediatr Gastroent Nutr; 17(4), 361-369.
Fleisher, D. R. (1994). Cyclic Vomiting. In P.E. Hyman & C. DiLorenzo (Eds.), Pediatric gastrointestinal motility disorders (pp. 89-103). New York: Academy Professional Information Services.
Forbes, D. (1995). Cyclical Vomiting Syndrome. Journal of Paediatric Child Health, 31, 67-69.
Gee, S. (1882), 'On fitful or recurrent vomiting' Saint Bartholomew's Hospital Reports, 18, 1-6.
Hoyt, C. and Stickler, G. (1960). 'A Study of 44 children with the syndrome recurrent CVS' Pediatrics, 25, 775-780.
Li, B U.K. (Ed.) (1995). Proceedings of the international scientific symposium on CVS held July 1994 in London, England, J Pediatr Gastroent Nutr; 21, (Suppl. 1).
Pfau, B.T., Li, B U.K., Murray, R.D., Heitlinger, L.A., McClung, H.J. & Hayes, J.R. (1996). Differentiating cyclic from chronic vomiting patterns in children. Pediatrics, 97, 364-368

Link to Official Association Pages (USA and Australia)

CVSA Official Home Page

Australian Cyclical Vomiting Syndrome Association Official Home Page

Links to CVS Patient and Family Home Pages

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