Cyclic Vomiting Syndrome?

[brittone2]

Corie or anyone else with a child with a CVS diagnosis...can you tell me more about what this looked like in your DC?

I have a close friend with a cousin who has CVS, and I've heard about it here and in my days in healthcare. I'm starting to wonder if my DD might have this. She vomits on average 1x a month, sometimes every 2 months. While sometimes my other kids come down with GI illness, she tends to have these events much more often than my other kids. The other two get a few stomach bugs per year, but much more in the normal range. DD has an episode roughly every 1-2 months it seems as of late (by that I mean over the last 1-2 years).

One red flag is that I have a history of migraine. Thankfully, mine have been much, much improved since around the time I had DS1. My migraines were primarily ocular, usually with not much of an actual headache. My mom never had a migraine diagnosis but just got one a few months ago after having her first episode of ocular migraine (she was worried she was having a stroke when she noticed visual aura, etc.)

The onset for DD tends to be first thing in the morning (probably 85% of the time or more it starts within 30 mins of her waking up around her usual time). Usually it is a few hours and then she's done. Last month she had a 5 day episode of vomiting that was bad the first day, then she vomited the 2nd day moderately, and then it was just 1-2x a day for the following days. That was an outlier, and the only time I can recall it playing out like that. No one else got sick.

I have considered it before, but today it just registered how truly "cyclical" this seems to be. Like if DD hasn't vomited in a few weeks, we are like, okay, it's time. And seriously, within days I swear she will vomit. It is almost a sense of feeling like she's "due" for an episode, if you will, which makes it feel very cyclical.

She claims she does not usually feel very nauseous when she has her vomiting stuff. I don't know for sure since she's still young and I'm not sure if she can describe what she's experiencing that well. Right now she's on the couch, pretty talkative, watching TV with me, etc. in between vomiting every 15-20 mins.

What testing was done to exclude other diagnoses? Did your DC have a scope, etc. with GI? Who made the actual diagnosis?

eta: I am going to start jotting down dates, etc. Two triggers that I have noticed-if she doesn't get a snack before bed for some reason or doesn't eat much dinner, she may wake up with vomiting. However, there's obviously the possibility that it is just a stomach bug and she wasn't feeling well the night before but couldn't articulate that. But this particular scenario happens a lot when she's the only one who gets a stomach thing. Right now she has a cold/post nasal drip as well. I think she may have had vomiting right after or during colds in the past, but she definitely has these vomiting episodes at other times. The list of triggers for CVS includes having a cold/allergies as well as needing to eat. Obviously that can overlap with other things too, however.

[indigo99]

I think that DS1 has this too, but he hasn't been diagnosed. DH and I both get migraines. DS will wake up and throw up (usually within 5 minutes but sometimes longer). He'll sometimes do it a few more times, but it's always over in a few hours with no other real symptoms. He's also thrown up at least once because of having a cold and swallowing too much mucous.

I've always been sensitive to not getting enough sleep though so I've also wondered if that could contribute to his vomiting as well. For instance, waking up really early and not getting enough sleep can make me super nauseated. I usually find a way to get more rest though, and then I'm fine. Surprisingly, it only happened a couple of times when I had newborns and was sleep deprived. I remember getting up with DS2 one night though and having to rush back to bed because I felt like I was going to throw up and pass out.

I've wondered if it could be somehow related to low blood pressure. I'm also really sensitive to getting shots or blood drawn. It isn't fear, but I have a very physical response and have passed out several times. I also thought I might have a blood sugar issue in highschool because I passed out often in the mornings, when I was overheated etc. I strongly suspect it's all related somehow and that DS may have the same thing (whatever it is).

So far it hasn't really been a major problem with DS although it is bothersome to clean up. If it happens often once he's in school then I'll probably have to get some sort of medical diagnosis to explain the missed time at school.

[brittone2]

My only confusion in reading the symptoms, etc. is that she doesn't seem to be incredibly nauseated, nor is her vomiting projectile. She does the typical hover over the toilet for a while, cough, cough, cough, and then vomits a few times. Afterward she will sort of hang on the couch, but will talk, etc. between bouts of vomiting. I am also not sure she vomits 6x per hour, which I've read is the mean # of episodes in many kids. She will vomit every 15-20 mins, sometimes a bit more. So that could be in the range for CVS and just under the mean #. But yeah, she doesn't seem to have that much nausea nor projectile intensity.

Indigo, does your DS have nausea? DD can at times be a tough cookie in terms of pain, etc. and at her age, I'm not sure how reliably she can report nausea, kwim? She will say her belly hurts "a bit" but if I ask if she feels dizzy, etc she will usually say no.

She does also have episodes often when DH is traveling (stress?) and leading up to something big or exciting (vacation), which also seem to be symptoms common with CVS. As a kid I remember I would always vomit after watching the fireworks on 4th of July (weird but true). Given my migraine history, I wonder if there was some connection there.

[elektra]

My kids vomit regularly too but it doesn't seem to be on the same type of cycle you are talking about though. It's more when there is a more obvious trigger like traveling, traveling anxiety, motion sickness, or an illness with a fever. Although this week's episode was weird in that there was no fever?

Anyway, when I was a child I would also vomit regularly, but in my case it was from seizures. I was having partial seizures and it would make me vomit, presumably from the dizziness, although as I got older it would not make me nauseated when I had them. Just throwing that out there because it was one of those things were I would feel fine after, and we never even realized that was what had been going on the whole time until I was a freshman in college and was diagnosed with epilepsy.

[KpbS]

I am sorry you are dealing with this. :hug:
I think one of Corie's DC has this.

[Corie]

My son started when we moved to Rhode Island. (He was only 2 yrs. old.) He was getting sick all the time and no one else in the family was getting it.
Our new pediatrician kept brushing me off and saying it was just a new environment/new germs, etc.

I started keeping track of the times that he would get sick. His cycle was 4 weeks almost to the day. It would start very early in the morning. (5-6am)
I would know as soon as I saw him. He looked like death. (Each child has their own cycle and length of the episode.)

He would throw up all day and he would throw up very often. Nothing would stay down. Even the small sips of water would come right back up.
He would get sick until 9-10pm. Then he would want a bath. :)

Unfortunately, there is no specific test for CVS. It is a diagnosis made after everything else has been ruled out. He was tested when he wasn't
sick and then they wanted to test him during an episode. (That was a lot of fun.) I don't even remember all the things we did. It was almost 7 years ago!

During an episode, DS is very sick. Doesn't move, doesn't talk, doesn't do much of anything.

When the episode is over, he knows. He'll tell me that he wants to take a bath and he wants to eat. Once he wanted me to drive through McDonalds
and get him a couple cheeseburgers. So, off we went to McDonalds drive-thru. He eats a lot when the episode is over. Like whole sleeves of Ritz crackers,
macaroni & cheese, etc. His gastro had a term for it. I think it is "binge". Kids go through a binge after an episode.

CVS is neurological. It is considered an "abdominal migraine". And migraines are hereditary. My maternal grandfather, my mom, and 2 of my siblings get
migraines. My 11 yr. DD also gets migraines and comes home from school throwing up.

I was told by the gastroenterologist said that my son would (hopefully) grow out of the CVS by school age but that it would be replaced by
regular migraines. I think we are gradually going there. He still have the CVS but he is now getting the migraines too. DS is now 9 years old.

One thing you said that totally doesn't fit with my son or what I was told about CVS--- you said your DD does not usually feel very nauseous and
that she is pretty talkative, etc. My son looks like death and he is extremely nauseous, doesn't talk, etc. It is extremely disconcerting. His gastro
said that most kids look "comatose". That is how DS looks.

Hope this helps!

[brittone2]

Thanks, Corie! That's kind of what doesn't fit. She doesn't seem terribly nauseous. But, the whole thing is definitely very cyclical feeling, and again, I have (and my mom has) ocular migraine. I would hate to subject her to all kinds of testing if she just happens to vomit more often than an average kid. Maybe she just picks up Gi stuff more easily. My boys have always gotten more colds and frequent croup, and she's always been more of a vomiter.

[Corie]

Thanks, Corie! That's kind of what doesn't fit. She doesn't seem terribly nauseous.

Yes, that is throwing me off too. My son can barely get out of bed and walk. If I have to change his pajamas because he got sick
on them, it is a nightmare. He can't even lift his rear-end up for me to pull off his pajama pants.

[brittone2]

Poor thing :( That's awful. I'm sorry he's not only dealing with the nausea and vomiting, but also possibly headaches now. So unfair. I know my BFF who has a cousin with CVS has said it has been so hard on her cousin over the years.

DD just took a little nap, woke up, and asked for something small to eat. So weird.

[indigo99]

Indigo, does your DS have nausea?

DS doesn't projectile vomit or even do it all that much. He'll either do it right after waking up or he'll be really low energy when he wakes and want to just lie on the floor or bed until he eventually throws up. Then I usually make a little bed for him on the living room floor and let him watch tv. Of course I don't know how much of it is him just wanting to be babied and watch tv, but I can usually tell once he is feeling better because he'll start sitting up and playing. He usually does want milk and cheerios though so his stomach must not feel TOO bad. We give him some in case it's a sugar issue, but it usually just comes back up so we don't let him have as much as he wants.

He really eats the same as us though, and I'm pretty confident that none of these episodes were caused by some sort of bug. It's always the same: in the morning, resolves in a few hours, only real symptoms are the vomiting and some lethargy.

[kochh2]

guys. my family is among the top experts as far as familys with CVS goes- I can put you in touch with my aunt, who is on the board at the only CVS headquarters there is. But, i can tell you from experience with my cousin, this is not JUST vomiting, it is more like a conscious coma. thats how is is described. the morning head ache, followed by vomiting- definitely could be CVS- PM me, though- my family has done extensive research and met with top docs from all over the world. My Aunt is willing to help anyone get to the bottom of things- please let me know if you want ot be put in touch- this DX is not easy to make, but once it is made, you will at least know how to handle episodes- B, we can chat. I had no idea you were thinking this... poor E.

[Tondi G]

My uncle has cyclic vomiting syndrome. My Mom was trying to help him get to the bottom of what was going on and I mentioned CVS because I had heard about it on this board. When he goes through it, it lasts a few days. Sometimes requires a trip to the ER for fluids and meds to help stop the vomiting. One doctor he saw prescribed Ativan and I guess if he thinks something is coming on and he takes the meds quickly enough he can sometimes stop it. It is dreadful, he can barely move and looks awful while he's going through it.

I got migraines from around age 11 or 12 till I was in my early 20's. In the last year my DS, who is now 12 has started getting migraines (exactly like I did). He often vomits from the migraine and has to come home from school. Lucky for him though, he can take a 2 hour nap and come out of it a lot quicker that I did. MIGRAINES SUCK!!! It is the worst feeling as a parent to know you passed them onto your child. :(

[Tondi G]

guys. my family is among the top experts as far as familys with CVS goes- I can put you in touch with my aunt, who is on the board at the only CVS headquarters there is. But, i can tell you from experience with my cousin, this is not JUST vomiting, it is more like a conscious coma. thats how is is described. the morning head ache, followed by vomiting- definitely could be CVS- PM me, though- my family has done extensive research and met with top docs from all over the world. My Aunt is willing to help anyone get to the bottom of things- please let me know if you want ot be put in touch- this DX is not easy to make, but once it is made, you will at least know how to handle episodes- B, we can chat. I had no idea you were thinking this... poor E.

I would love to connect your Aunt with my Mom. She still isn't sure my uncle's doctors are doing enough to help him... maybe your Aunt would have some info that would be helpful.