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Does this sound like CVS to anyone who's experienced it?

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#1 Caitlin Happymeal

Posted 13 October 2019 - 08:34 AM

So... DD is 9, nearly 10, has ASD, ADHD and anxiety (separation, global and one other type I always forget - in a nutshell, anxiety is always present in our lives).

In the last four or so months, she's had 4-5 bouts of unexplained vomiting, beginning at night around 11pm -12 am, where she basically vomits every hour, on the hour, for about 4-5 hours.

Then miraculously is symptom free, apart from lethargy the next day.

Until now, I've put it down to random gastro bugs but it's bizarre how each episode happens around the same time and follows the same pattern.

Obviously, standard eb disclaimer - will consult health care professional etc etc, but since I can think of a couple of members who's kids have this, I wondered if it were similar to thier experiences?

#2 Yippee-Ki-Yay

Posted 13 October 2019 - 10:55 AM

Hi OP, as you might know, my older son has this. He was much younger when his bouts started (12 months old). I think his anxiety at such a young age was caused by sensory issues related to his autism.

What you write does sound like CVS. The rules of thumb are that the vomiting bouts are regular (DS is every 15 minutes), that the episodes start during the night (usually waking the pt up in their sleep) and also that often a long sleep tends to clear up the vomiting and break the cycle.

It was a long time for us before we had a proper diagnosis, despite DS being hospitalised at least once a month in the early years. As DS has grown his episodes are less frequent, but virtually every episode now results in needing an admission to hospital, where as when he was younger I could manage about 50% of them at home.

Triggers tend to be easy to figure out, but often difficult to avoid. For my DS (who also has Double Depressive Disorder, PTSD, Specific Anxiety Disorder, Separation Anxiety Disorder, Mood Disorder, Generalised Anxiety Disorder, Oppositional Defiance Disorder and ADHD -  Inattentive - Read: lots of anxiety) its not just things that are negative that trigger an episode, its also anything that excites him, like xmas, birthdays, holidays etc. We have spent a few xmas days in the kids ward. The most typical port of call is for kids to be prescribed the anti-emetic wafers that chemo patients get to be given at the onset of symptoms. Didnt work for my child. I know it does work for some others though.

Other triggers are any gastro illnesses. They are guaranteed hospitalisations. DS cannot afford to get gastro bugs as they make him very sick. A few years ago he had salmonella and that triggered his CVS as well and I came close to losing him as his kidneys and heart were under great strain.

The main thing to take away from all of this is that often doctors dont know what CVS is. Even paediatric registrars at hospital. They will often want you to trial fluids like gastrolyte, but in most CVS people anything in their stomach will irritate and exacerbate the vomiting.

With what you report, Id guess it is CVS, but at the milder end. I would definitely do my best to address your child's anxiety as much as possible to reduce occurrences. You may not yet have enough of a pattern for a diagnosis of CVS, I dont know. Definitely worth writing down the incidents, including time of onset, time frame between vomits and if a sleep precipitates recovery, how long the sleep is.

Happy to answer any questions here or via PM.

#3 gracie1978

Posted 13 October 2019 - 11:10 AM

Are there any blood sugar issues?

My friend's child had this issue, CVS looked like the most obvious diagnoses, but after a lot of testing they worked out he needed to eat VERY regularly.
Including food just before sleep and immediately on waking.

I can't remember what it's called but it was confirmed with home blood sugar tests.

#4 Caitlin Happymeal

Posted 13 October 2019 - 11:18 AM

That is incredibly helpful SL. I was hoping you would reply. We are linked in with a paed gastro for other reasons although i didn't find him overly helpful last time (but that was more to do with a GP suggesting that her MI stuff was being worsened by histamine type issues, and we were trying to look into GI and ENT aspects) but I suspect it might be worth seeing him again. I would hope he would be up on this sort of condition.

I will start a diary - it's just too weird that it's become a pattern. I'm thankful she hasn't been so bad that she needs hospitalization and doesn't seem to get overly dehydrated, just needs to drink extra water the next day, but each episode seems to be marginally worse.

It didn't help that DH and I had a massive fight in the middle of it because he sat there watching me clean up but didn't lift a finger, so no doubt that didn't help the situation. She's a bit of a mess mentally today from hearing that.

I am so exhausted from meeting their needs (both kids have disabilities) and then having to pick up his slack too. Sigh.

And my bedroom still smells like vom and I can't find the source... 🤔

#5 Caitlin Happymeal

Posted 13 October 2019 - 11:19 AM

Ooh that's interesting about the blood sugar Gracie... I actually have never looked into that with her. Hmmm.

#6 BusbyWilkes

Posted 13 October 2019 - 11:53 AM

I have a family member (with similar diagnosis to your DD) who had abdominal migraines. Very severe in her case and requiring regular hospitalisation.
My child seems to have a milder version that we are just tracking/keeping an eye on at present.
Gastro Paed would be the person to see.

#7 Islander

Posted 13 October 2019 - 07:50 PM

I also had vomiting bouts associated with low blood sugars for years as a teenager, would vomit about once an hour for about eight hours. But mine always coincided with obvious triggers like huge amounts of exercise on not much food (and never started overnight as far as I remember). It was diagnosed by accident- I needed a medical for a school trip and sugar in my urine was an incidental finding. I think I just control it with diet now- I still get nauseous but carry food everywhere!

#8 Caitlin Happymeal

Posted 13 October 2019 - 08:46 PM

Thanks Islander. I will definitely ask the GP about blood sugar issues.

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