Anyone heard of cyclic vomiting syndrome?

[nikkid]

My dd8 has woken up three times since Jan 1st (about every 3-4 weeks) throwing up. Seems to be fine before she goes to bed, only vomits 1-2 times, then fine the rest of the day. I read this today.

Anyone heard of this before?

 

It could be the stomach flu three times already this year, but it got me wondering if it could be anything else.

[zaichiki]

http://www.cvsaonline.org/

This is a good resource.

 

My dd had this for a while when she was younger. Grew out of it. Don't know where it came from or why it went, but I'm not looking a gift horse in the mouth. :001_smile:

[ssavings]

I was diagnosed with CVS as a teenager, but outgrew it by college.

 

I also recommend http://www.cvsaonline.org, as well as searching for information on "abdominal migranes".

 

My experience of CVS was intense nausea, with vomiting every 20-25 minutes for the duration of the cycle (usually 48 hours). The cycles always started in the middle of the night/early morning. Similar to a migrane, any light or noise increased the discomfort. I had 6-8 cycles per year (less than "average").

 

For me, it was distinct from the flu/other issues in a few ways. First, the intensity of a CVS episode is extreme. Second, the "cycle" of the vomiting is very regular (oddly so).

 

I recommend talking to a doctor if you think it is CVS. Migrane medications can reduce cycles, and anti-emetics can prevent dehydration during a cycle!

[AFwife Claire]

Wow, I think this is what one of my daughters had last year! She was sick back in October with a virus, but then almost every night she would wake up between 3:00 and 5:00 AM and vomit several times. She became a real pro at getting her head into the trash can (she was 3), but it was awful! Then she would wake up a few hours later and be perfectly fine--hungry, ready for regular food, etc. It went on for weeks and weeks, and she started eating and drinking less and less. Eventually she did get dehydrated, and I had to take her in for IV fluids. The military docs just said viruses can last a long time?? Eventually she stopped, but everytime she gets sick, I worry.

 

Now my nephew, who is in junior high, is undergoing something similar. He started vomiting back in October, and has undergone tons of tests to try to figure out what is wrong. He is missing a lot of school, and I believe he also deals with migraines. I'm passing this info onto my sister-in-law.

[angela in ohio]

One of my dds responds that way to any type of sinus infection or congestion or to her seasonal allergies. It drains all night, and her stomach is very good about getting it out first thing in the morning. If there is a lot of mucous in it, it might be that.

[Momof3littles]

My BFF's cousin has lived with it for years, and I know of another online mama with a child who has a cyclical vomiting syndrome diagnosis. It is also known as an abdominal migraine.

[amo_mea_filiis.]

There was an episode of Mystery Diagnosis and the girl woke up nightly, vomited, and went back to sleep. She never had any other symptoms. A sleep study showed that she had epilepsy and her vomiting was a seizure.

 

Just something to keep in mind.

[KidsHappen]

My children do this as well, the high schooler more so than the middle schooler. They will just randomly spend a day throwing up and then feel fine the next day. It is playing hell with their attendance this year and they are very close to the point where they will have to go to the dr. every time this happens for the rest of the year. A couple of times I have sent them to school feeling fine and then they go to the nurse because they don't feel well and she sends them home and no sooner do they get here then they start throwing up. I figure she must be pretty good to just be able to look at a child and say that she thinks they need to go home before they are even really showing any symptoms yet other than just not feeling well.

[mommymilkies]

My 7 yo did this until we removed gluten and she started synthroid for profound hypothyroidism.

[mamakim]

Wow, interesting timing on your question - just this week 5 y/o ds is being sent to the peds GI with the suspicion of this being the diagnosis.

 

But his vomiting and lethargy is lasting 4 days every time - I'm not sure it fits. Still, glad for the links. Gives me a start to the researching.

[LittleIzumi]

Dd had those symptoms due to reflux. It would be okay during the day, but at night when she would lay down, the acid would come up. She would cough several times and spew, then go right back to sleep.

[myfunnybunch]

You may want to chart what she's eating before bed, too.

 

Our pediatrician suggested abdominal migraines as well, and tossed off at the end of the visit, "Could be hypoglycemia, too, you never know."

 

I read about ketotic hypoglycemia and made the connection between morning vomiting and not eating dinner the night before. The boys were very polite and didn't complain about not liking dinner. They just didn't eat. By morning, low blood sugar caused them to vomit. They'd vomit, sleep, eat and be just fine. A sandwich before bed stopped the morning vomiting.

 

Just another thing to consider. I hope you figure it out! :grouphug:

 

Cat

[jennsmile]

One of my sons vomits and then is fine if he eats too much food or too much grease. He has gotten better and I don't remember the last time he got sick in the middle of the night.

[nikkid]

Thanks everyone for the feedback. It's nice to know I'm not the only mom dealing with this.

 

You may want to chart what she's eating before bed, too.

 

Our pediatrician suggested abdominal migraines as well, and tossed off at the end of the visit, "Could be hypoglycemia, too, you never know."

 

Interesting. I'm hypoglycemic and had gallbladder trouble before getting it removed in my late 20s. I also struggle with headaches and pain attacks related to my menstrual cycle, but I think my dd is too young to have that 'cycle' be causing anything yet. (She's almost 9.)

 

Before bed last night, my dd ate applesauce with cinnamon, goldfish-type crackers, and drank water. She usually has a snack before bed. Since there doesn't appear to be other symptoms of gluten intolerance or other allergy, and since it's only happening every 3 weeks or so, I don't think it's a specific food item. I wondered if it might be a parasite since I've heard you can react to them once but the eggs are still inside you and take 3 weeks to hatch, which causes a vicious cycle.

 

However, the stomach flu has been going around in our area so maybe she's just got that 3 times in 2 months? Don't know, but I've started going back and looking at what's happened each time before.

[Lisa R.]

 

However, the stomach flu has been going around in our area so maybe she's just got that 3 times in 2 months? Don't know, but I've started going back and looking at what's happened each time before.

 

While this is possible, this is probably the least likely scenario.

 

My son had this every couple of months in the morning. By noon he'd fall asleep and wake up feeling better. He was eventually diagnosed with abdominal migraines by a neurologist. He stopped getting abdominal migraines and started getting migraines with severe headaches and nausea. However, now he's rarely gets these anymore. We were told boys can often grow out of migraines.

 

The neurologist suspected the migraines were triggered by low blood sugar since he would only get them in the morning. When we watched his diet more closely, particularly what he ate for dinner and before bedtime, this really helped. He was a kid with a very fast metabolism that needed protein at regular intervals throughout the day. If he ate, say cheese pizza for dinner, and had mac and cheese for lunch, he would be more likely to wake up sick the following day.

 

I think you're on the right track by trying to keep track of this. You will likely see a pattern of some sort that will help you diagnose this correctly. It will also, hopefully, help prevent future occurrences.

[zaichiki]

If it's only three times in two months, it doesn't sound like CVS. My dd threw up every morning before getting out of bed or as she was getting out of bed. She'd fall asleep again and be fine an hour later. This happened practically every morning for a long time. It was unrelated to what she had eaten the night before.

 

A neighbor down the road from us also had a dd with these exact symptoms.

 

The doctor said they would likely grow out of it and they both did.

[WeeBeaks]

My daughter has had this for a couple years now, a pretty mild case. Every month or two, she wakes up sick, vomits several times between 8 a.m. and noon, and then is 100% perfectly fine at lunchtime with no other intervention at all. All other exam/labs are fine.

 

She has Zofran to help her feel better, but since hers is so mild that is all we are doing right now. She is 4 years old.

[Mom-ninja.]

I thought that may be what I had, but it turns out I have celiac.

[sewingmama]

 

My daughter has had this for a couple years now, a pretty mild case. Every month or two, she wakes up sick, vomits several times between 8 a.m. and noon, and then is 100% perfectly fine at lunchtime with no other intervention at all. All other exam/labs are fine.

 

My DD was the same. Eventually we narrowed it down to not eating properly the night before. She cannot skip a meal or she wakes up vomiting. My DD has sensory issues and is a very picky eater - it was common for her to not eat dinner. I relied on people's advice to just let her go without if she didn't eat - it didn't work for her :ack2:

 

The last couple months since I put her on a gluten free diet she has been eating better and been less picky. She hasn't had a vomiting episode in a long while.

[higginszoo]

My 11 year old has cyclic vomiting syndrome. It started when he was 10 mo old. He was finally diagnosed when he was 5. He would have severe episodes a couple of times a year that would put him in the hospital, with 2-3 less severe episodes between. Now, with migraine medications (it's a form of migraine), he rarely has vomiting episodes. He has, however, started to have regular migraines sometimes. His biggest trigger is stress --positive or negative -- he had a big, exciting day yesterday with his Boy Scout crossover, and then this morning got to do his first Scout service project. He came home with a raging migraine and upset stomach (no vomiting yet), so I medicated him and put him to bed.

Edited February 19, 2012 by higginszoo

[kalanamak]

Yes. I was fearful I had it briefly, but it was multivitamins. I cannot tolerate them.

 

ERs know this well. It is frustrating for all.

I'd eyeball any supplements, dairy, and too much food after 6 pm. Some people don't digest in their sleep. When I was a kid, popcorn after 8 pm did it to me, and oregano. Now I love oregano, but as a kid I couldn't keep it down.

 

I seem to remember reading it is more common in heavy MJ smokers. This is reported good for mild cases of nausea ("the munchies") but heavy amounts might end up having the reverse effect. Someone somewhere is researching this. (It would be interesting if there was a cycle of medical MJ for weight gain, more vomiting, more MJ, etc.)

[plansrme]

Is there a history of migraines in your family? My son was diagnosed with this when he was about 5. He had a series of vomiting episodes similar to your daughter's. The first thing the ped asked was whether there is a history of migraines in our family. There is, in fact, with the men on my husband's side--only the men, oddly. The CVS quieted down after a few weeks and has not reoccurred, but I fully expect him to have migraines when he gets older.

 

Terri

[Laura in NC]

My girls both suffer from Cyclic Vomiting Syndrome. My dd10, who has Mitochondrial disease, was just recently diagnosed with it. They both take Zofran when an episode hits. They have both been treated in the ER and hospitalized for it. My girls dehydrate quicker than kids without it so we have to be extra careful during viruses. I've heard that's the case with a lot of people with Cyclic Vomiting.

 

My oldest, dd12, now gets it in her head more than her stomach. DD12 was diagnosed with it at age 5 and we discovered that excitement sets her off or something that makes her nervous. She used to be on Periactin as a daily med because she could not function without throwing up. That helped a lot.

 

We haven't figured out what sets dd10's off but it could be related to her Mito. She seems to be going through a cycle about every 2 weeks. Her neurology dr. that treats her seizures is also a Cyclic Vomiting Syndrome specialist. So you may want to try and find a neurology dr. to treat it.

 

I'm so sorry you all are going through this.

[gardenmom5]

My dd8 has woken up three times since Jan 1st (about every 3-4 weeks) throwing up. Seems to be fine before she goes to bed, only vomits 1-2 times, then fine the rest of the day. I read this today.

Anyone heard of this before?

 

It could be the stomach flu three times already this year, but it got me wondering if it could be anything else.

 

:grouphug: Have you been to the CVS website?

 

Unfortunately, yes. My son had it. Ultimately, we deterined he had fractured a verbetra (visible on his X-rays which none of the western dr's cared about because it had "healed".) which was pinching the main nerve off the spine that leads to the stomach. Testing at children's hospital, pediatric neurologists, etc. LOTS of western drs with no help. They had no clue what was wrong, let alone how to treat it. My son was on propranolol 2x a day, a beta blocker, which did hold off his symptoms. then we lost insurance and unemployment, I couldn't afford it and eventually all symptoms returned - only worse.

 

My chiropractor was actually the one who diagnosed it for what it really was, and came up with a way to TREAT it so it wouldn't be a problem anymore vs the ped neuro who put him on Rx for the rest of his life. (with no guarantee they would continue working.) His first question to me was: "did he fall?" apparently he'd fallen 18ft out of tree and landed on his feet - the ground was soft -and never told me about it. The symptoms didn't start until several months later.

 

It eventually was IM narcotics to try and hold his pain in check (and he'd be withering in pain hours before he could have another dose), IV fluids for hydration, pain and vomiting for up to six days. He lost five pounds in a week when he only weighed 65 pounds to start with. A *teaspoon* of water would cause severe pain and vomiting. then again, symptoms would disappear - for about three months. the lethargy, pain, vomiting would cycle through multpile times a day for as long as eight days with three full days just to recover.

ONE newly minted ped said "oh, I've heard about cyclic vomiting" - which was the most helpful thing we had from western medicine.

 

My chiro started treating him and took the pressure off the nerve. no more attacks, no drugs, one adjustment a week then every month while he was growing and NO symptoms at all! again there were times we couldn't afford things, and symptoms would eventually return so we knew this was an ongoing problem. I'd rush him in to be adjusted, and symptoms would stop. He's now done growing and might go in every few months or less and has had NO recurrence in maybe five years?

 

Good luck on finding a diagnosis and appropriate treatment.

 

eta: he was also given the migraine tabs to take when he started getting sick - they did nothing for him.

Edited February 20, 2012 by gardenmom5

[Riverland]

There was an episode of Mystery Diagnosis and the girl woke up nightly, vomited, and went back to sleep. She never had any other symptoms. A sleep study showed that she had epilepsy and her vomiting was a seizure.

 

Just something to keep in mind.

 

My dd had stomach issues for a long time. She made noises during her sleep where I thought she was going to throw up, but after a minute or two went back to breathing normally. We eventually learned they were epileptic seizures.

 

My ds's stomach problems are likely stomach migraines.

[LostSurprise]

It sounds like this is a symptom of several problems.

 

I had something similar when I was a preteen/young teen. My mother called it my 'cycle.' It started a year and a half before I started menstruating (12) and mostly ended 6 months after my first period.

 

I'd feel nauseous sometime after dinner. Go to bed in abdominal pain. Wake up in the night. Vomit once or twice. Feel better and sleep through the night, attend school next day, etc. It always happened @ the third week in the month. Never more than 2-3 days.

 

I skipped a lot as a teen. Very rarely I'd have a 'vomit period' during one of my skip months. I'd completely outgrown it by 16-17. By that point I was only skipping every 3rd or 4th month and my body thought that was okay. :tongue_smilie:

 

I hope you can figure out what's happening with your daughter.

[higginszoo]

It sounds like this is a symptom of several problems.

 

I had something similar when I was a preteen/young teen. My mother called it my 'cycle.' It started a year and a half before I started menstruating (12) and mostly ended 6 months after my first period.

 

I'd feel nauseous sometime after dinner. Go to bed in abdominal pain. Wake up in the night. Vomit once or twice. Feel better and sleep through the night, attend school next day, etc. It always happened @ the third week in the month. Never more than 2-3 days.

 

I skipped a lot as a teen. Very rarely I'd have a 'vomit period' during one of my skip months. I'd completely outgrown it by 16-17. By that point I was only skipping every 3rd or 4th month and my body thought that was okay. :tongue_smilie:

 

I hope you can figure out what's happening with your daughter.

This actually makes sense in that CVS is a migraine-related disorder and a common trigger for migraines in women is some particular point in their hormonal cycle (can vary which point).

[Dorothy Smith]

I’ve been diagnosed with CVD and have had 2 episodes, one in July and one in August. After spending hours in the bathroom with vomiting and diarrhea I was unable to walk or talk. It was difficult to open my eyes. I was taken by ambulance to hospital with overwhelming nausea that was treated with drugs that are given to cancer patients for nausea. It took a few different ones that were injected through the intravenous in my arm. The second episode took 8 hours to find relief. It has taken months to gain most of my weight back. I’m  73 years old and have no idea where this horrible syndrome came from. Seems there is a list of triggers including certain foods, alcohol and marijuana. Does anyone my age suffer from this affliction or have any advice? I’m terrified of having another episode. 

[Jean in Newcastle]

Ten year old zombie thread