Cyclic Vomiting Syndrome - Any BTDT?

[Aishe]

My ds has had 4-5 weird vomiting episodes over the last 6 months. They're always the same: he wakes up around 6 am, complains about nausea and a stomachache, and then vomits several times. It usually lasts about an hour or two. He was diagnosed with anxiety a couple years ago and did several months of therapy at one point. Each of these episodes has occurred during times of stress or change (even happy change - it once happened the day summer break started - but all change is stressful for him).

What I've read about CVS seems to fit him to a T except for one thing - he does not display the "conscious coma" behavior that seems to be typical of CVS. He is actually extremely agitated and essentially behaves as if he's having a panic attack. But he has always had a kind of phobia of vomiting so maybe that's why he presents differently. Several years ago, when he was about 3 or 4, he did wake up one morning and acted like a complete zombie. I almost took him to the ER because he was almost completely unresponsive. Then he vomited, asked for a sandwich, and within an hour was pretty much back to normal. It was extremely bizarre. At the time I thought it was an isolated incident, but now I wonder if it was somehow related to the recent episodes.

Also, CVS is apparently associated with migraines and we have a lot of migraine sufferers on both sides of the family (including DH).

I've made an appointment with our ped, but in the meantime I was wondering if anyone here has experience with CVS.

[Corie]

My 13 yr. old son has CVS. He was diagnosed with it at age 2-3. He would have an episode every 4 weeks pretty much
to the day. His vomiting episodes would start early morning and last all day/evening.
His gastroenterologist said that most kids tend to grow out of the CVS episodes by school age and then it can go
into regular migraines. (CVS is neurological and tied to migraines. CVS is basically considered an abdominal migraine.)
The gastroenterologist prescribed DS with Zofran.

Present day, his CVS episodes still happen but rarely. He does get bad headaches now too.

[Liziz]

I doubt this is the cause in your son's case, but it took waaaaay too long to figure out for me so I'm just going to throw it out there: if he's taking any daily medications, make sure to check if nausea/vomiting is a possible side effect. I took a medication daily for years, with no problem. All of a sudden, I started having morning vomiting issues that sound a lot like you described your son's. It wasn't every day, but it happened repeatedly. Doc wasn't sure why, chalked it up to stomach bugs, etc. A couple months later a different doctor asked me if I ever had stomach issues (she was unaware of the vomiting) and when I said I did, she took me off the daily med. That was a side effect of it (that my PCP hadn't realized/thought to pay attention to). She said sometimes people can be fine for a long time on it but then it just develops. I stopped taking that medicine and I've never had that issue again.

[Melaine]

A friend’s DD had This and it turned out she was sensitive to food dyes. She went to a holistic doctor for muscle testing and I think she’s fine just avoiding the triggers now.

[Aishe]

My 13 yr. old son has CVS. He was diagnosed with it at age 2-3. He would have an episode every 4 weeks pretty much
to the day. His vomiting episodes would start early morning and last all day/evening.
His gastroenterologist said that most kids tend to grow out of the CVS episodes by school age and then it can go
into regular migraines. (CVS is neurological and tied to migraines. CVS is basically considered an abdominal migraine.)
The gastroenterologist prescribed DS with Zofran.

Present day, his CVS episodes still happen but rarely. He does get bad headaches now too.

Thanks for sharing your personal experience. That's interesting that your doctor said most kids outgrow it by school age. I was just reading that it's on the rise in adults. I'll have to ask our ped about Zofran.

[Aishe]

I doubt this is the cause in your son's case, but it took waaaaay too long to figure out for me so I'm just going to throw it out there: if he's taking any daily medications, make sure to check if nausea/vomiting is a possible side effect. I took a medication daily for years, with no problem. All of a sudden, I started having morning vomiting issues that sound a lot like you described your son's. It wasn't every day, but it happened repeatedly. Doc wasn't sure why, chalked it up to stomach bugs, etc. A couple months later a different doctor asked me if I ever had stomach issues (she was unaware of the vomiting) and when I said I did, she took me off the daily med. That was a side effect of it (that my PCP hadn't realized/thought to pay attention to). She said sometimes people can be fine for a long time on it but then it just develops. I stopped taking that medicine and I've never had that issue again.

The only thing he takes is Claritin. I kind of doubt that's causing it, but I'll check potential side effects just to be sure.


A friend’s DD had This and it turned out she was sensitive to food dyes. She went to a holistic doctor for muscle testing and I think she’s fine just avoiding the triggers now.

That's interesting. He did have a cupcake yesterday, which probably had food dyes, but I know he's consumed food dyes at other times without reacting. Definitely something to be mindful of, though.

[Corie]

Thanks for sharing your personal experience. That's interesting that your doctor said most kids outgrow it by school age. I was just reading that it's on the rise in adults. I'll have to ask our ped about Zofran.

This was what our gastroenterologist (in Rhode Island) told us. So that would be about 10 years ago!
I've never asked our gastroenterologist here about it. So not sure what more current research says.

The perfect breeding ground for my son's CVS is exhaustion, hunger, and too much sun. A sleepover at a friend's house, a fishing trip,
a long baseball tournament, our vacation in Mexico, etc. These events have all triggered a CVS episode for my son.

[gatorsmom]

A friend of mine had this problem with her son. I texted her to ask her what worked for her son. She said, “it is trial & error on what works. We found that advil & zofran (chemo naseau drug) right at the onset would stop an episode from progressing. He also had biofeedback. He went on cyproheptadine for awhile and that helped his serotonin receptors in his gut ‘reset’.” She said that helped tremendously. Hth

[magnoliaparadise]

Is it only or mostly happening in the morning? Does he feel better after and continue on his day? It is really unlikely that it is anything serious and probably CVS (which I had never heard of before this). But just in case - I don't want to alarm you in any way, but I would insist on an MRI. I say this out of experience of an extended family member.

[nfceagles]

Another possibility I would consider is EoE, Eosinophilic Esophagitus (sp?). Not that I think you're wrong about CVS, just another condition my DS had an endoscopy for that can have random vomiting as a symptom. My DS scoped negative but I know it's on the rise.


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[wendibird22]

Things I'd throw into the mix are low blood sugar, food allergies/sensitivities. I know of people with low blood sugar that can't get out of bed without a glass of juice first or else they are terribly nauseous and vomit and that seems to only happen in the a.m. For me with my gluten intolerance, my nausea was always in the a.m. when my stomach was empty. I'd have other symptoms during the day like bloating or a migraine, but the nausea and dry heaving would be in the a.m. before having breakfast.

[pinkmomagain]

I'll add another condition into the mix to consider: constipation. My youngest has bouts of nausea/vomiting and going completely pale that come on suddenly and it's related to constipation. As soon as we get her system moving she immediately feels better.

[gatorsmom]

I'll add another condition into the mix to consider: constipation. My youngest has bouts of nausea/vomiting and going completely pale that come on suddenly and it's related to constipation. As soon as we get her system moving she immediately feels better.

yes, I totally agree with this. I’ve seen this happen in my own kids. The son of our friends was terribly constipated for over a year. He was frequently vomiting at school. He finally had an X-ray and was severely constipated and had been for a long time. His parents are both doctors and thought he was struggling with the flu/colds. So, it’s easy to misdiagnose.

[MSWR0319]

When my reflux is flaring, I wake up nauseous and feeling down right horrible until I finally puke or get something in my stomach to soak it up. Does he have any symptoms of reflux? Mine sometimes flares when my allergies are bad.

[klwa]

When my reflux is flaring, I wake up nauseous and feeling down right horrible until I finally puke or get something in my stomach to soak it up. Does he have any symptoms of reflux? Mine sometimes flares when my allergies are bad.

DD1 has similar issues related to her reflux. When she wakes up with issues, we can almost always trace it to her eating more of the "not good for reflux" foods the day before. (Like, party with way too much Coke, etc.)

[Corie]

When my reflux is flaring, I wake up nauseous and feeling down right horrible until I finally puke or get something in my stomach to soak it up. Does he have any symptoms of reflux? Mine sometimes flares when my allergies are bad.


My husband was the same way!

[Aishe]

yes, I totally agree with this. I’ve seen this happen in my own kids. The son of our friends was terribly constipated for over a year. He was frequently vomiting at school. He finally had an X-ray and was severely constipated and had been for a long time. His parents are both doctors and thought he was struggling with the flu/colds. So, it’s easy to misdiagnose.

You know, he complained later in the day about being constipated and spent a lot of time in the bathroom. It's been very warm here and I suspect he hasn't been drinking enough water. I gave him some prunes and made sure he was getting plenty of fluids and things seem to be moving along now. I'll be sure to keep an eye on that.

[Aishe]

When my reflux is flaring, I wake up nauseous and feeling down right horrible until I finally puke or get something in my stomach to soak it up. Does he have any symptoms of reflux? Mine sometimes flares when my allergies are bad.

I don't think he has reflux, although he does have allergies. He complains about stomachaches sometimes, but it's really hard to tell what is real and what is psychosomatic with him. Also, to be completely honest, he's just a complainer. But I have terrible reflux so it's certainly possible that he's got some issues there.