Cyclical vomiting syndrome

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My poor boy (12) has hit this with puberty. cycles are around 3-4 weeks and horrendous. wakes early and vomits around 6 times an hour and keeps this going for 12 or more hours, slowly reducing. He has acid burns on his cheek from the stomach acid (despite barrier cream). He can't keep down a teaspoon of water. He eventually goes into a waking coma state, and starts twitching. The second time his kidneys failed temporarily andhe needed ICU. He was started on aprepitant and alimemazine, and has rescue meds of ondansetron melts and diazepam and chloral hydrate.

All given today and after 10 hours we gave up and he is in hospital now with DH. He is having rapid fluids IV and lots more meds, but it is heartbreaking.

Posting here for traffic.

Does anyone have any advice or hope this will eventually stop?

Is this the only diagnosis? Has be checked for Crohn's, or bowel issues?

Poor lad, I wish him the speediest recovery.

I've had it, but mine started in my early twenties.

I have been OK for a while now, but I was diagnosed with allergies and PTSD shortly after it started - I think it was a combination of both that did impact it more.

I had a port inserted so I could have ondanzetron and I took anti sickness tablets daily as well - this did have varying success but made it more bearable.

I had it in my late teens to mid twenties. Exactly as you describe, wake early, throw up and keep it up for up to 16 hours sort of passing out between.
Although I couldn't keep anything down, I would hold full sugar lemonade in my mouth for as long as possible after each vomit so that it would absorb through my cheek a bit and was the best temperature to stay down a little bit. I also would eat a certain type of salted crisps even though they came back up, just almost to have something coming back up and get a bit of salt. Eating/drinking didn't make me more sick, and I did manage to stay out of hospital
I had a bowl under my bed with the lemonade, crisps, paper towel and plastic bag so I was always prepared.
Mine eventually turned into migraines. I still throw up, but I get some warning and can usually head them off or at least stop the worst of it.
I hope you find something that helps him soon

So sorry to hear about this. Have they checked Eosinophilic issues? That can cause lots of vomiting too and is allergy based. The EOS network in the UK, CURED and APFED in the USA may be have good resources/info for you as these kind of symptoms resonate with that kind of disease. Truly hope you find a solution very soon.

@LunaHeather

Is this the only diagnosis? Has be checked for Crohn's, or bowel issues?

Poor lad, I wish him the speediest recovery.

He's had endoscopy, barium swallow and stomach emptying tests, bloods, urine, mri all normal. It's a diagnosis of exclusion, so they test everything and if it's all normal they settle on CVS. Once the episode is over he sleeps half the day and eats and drinks normally agIn, and it's like it never happened. It's related to migraines and is a neurological condition as the GI tract is normal.

No ground breaking advice but I'm sorry OP, your poor DS.

What has been investigated in relation to this? I assume he's had a gastroscopy, checked for gastroparesis by way of barium swallows and transit studies? Food allergies etc?

I don't have the condition specifically but suffer with similar due to a separate condition. For me it is controlled by medications. Long term anti depressants (used off label for suppression of nerve issues, such as gabapentin or amatryptiline) metaclopromide, careful diet management (avoidance of trigger foods and small meals rather than large ones etc) and I do find the tongue melting ondansetron so useful. I also take high doses of omeprazole to manage the acid reflux.

You could perhaps request a medication review, dietitian input for him and specialist CBT? I know this is a physical condition but it has helped me to spot triggers and patterns and use breathing to reduce instances of actual sickness as a result.

Also recommend electrolyte drinks if you dont already use them.

Gosh, that sounds rough. Both my boys had it, in their tweens. Both turned out to be reacting to classic migraine triggers, cheese and chocolate (and for ds2, being outside in subzero weather)

@UnderwaterSymphony I hope it never comes to needing a port. We have the ondansetron melts and they do get absorbed but simply don't work. Even IV in hospital has little affect.

@CMOTDibbler Yes, that is classic CVS! I think even a migraine is preferable to this. DH has migraines so I'm not surprised with all this. CVS is so little known
@Straysocks They did biopsies when they did the endoscopy, and apart from a bit of inflammation (it was just after an attack) all normal.
@dontgobaconmyheart I think his GI and the neurologist will look at these other meds eventually, but the frustrating thing is outside of these episodes everything works quite normally. Eats normal sized meals, no food allergies, no triggers we can see, it just hits suddenly for no reason. With the regular meds it does seem to be spacing the episodes out, but it's awful seeming him like this. If we do manage it at home we rehydrate with dioralyte but as he gets older we'll see if meditation helps him. I think it's just a physical calendar thing though which we may be able to abort with meds, or prevent with the regular medication.

@PickAChew We tried stopping all chocolate and cheese for a couple of months but it made no difference. It's just a horrible illness. Think we'll stop the cheese again for a while, even it it helps a tiny bit. He doesn't like chocolate much anyway.

He's slept like a log (full of sleep inducing drugs!) and is fine this morning. Docs will review and provided he wees and his bloods are ok and back eating, they will let him come home. Probably tomorrow, but may even be today.

We are in a similar position, seems allergy based but to what we don't know - possibly mast cell overdrive. The orgs I mentioned help with related symptoms, many of their families will have a child with CVS even if the causes are different. I've found them really useful. I really do feel for you.

I know CVS is most commonly found in children but I developed it when I was early 40s and I think mine is hormone based.
CVS is horrendous. I learned to spot the signs and I have Cyclizine tablets when I feel the initial symptoms. I was also prescribed cyclizine in syringe format if the tablets didn't do the trick but I've only had to inject myself once. Not actually had an episode in a few years but it's difficult to say how many I would have had if I didn't have the cyclizine.

I don't think they make them any more but Migraleve pink always used to help and diarolyte after. The hours after the vomiting stopped always felt so restful because my stomach would feel like I'd been kicked downstairs, every bit of me would feel bruised. I always felt wiped out for days afterwards
Your DS has my utter sympathies!

My DC has this, and they take pizotifen as a preventative which has really helped and mostly stopped the monthly cycles.

My friend had it and is doing a LOT better these days so hang in there! She rarely has any respite between cycles. Being prescribed IM cyclizine helped reduce the amount of times she was in hospital and she would do the injections herself to reduce attacks

@mylovelydd He has cyclazine in hospital and has had it at home, but it does nothing. Ondansetron is given for unrelenting nausea in cancer treatment, and also does very little. He also has regular apiprepitant also used for chemo induced nausea twice a week. Each table it £30! He has regular alimemazine which I think in similar to the sedatives in Migralieve plus really heavy sedatives including diazepam and basically, nothing stops it but time. He has enough to knock out a horse so I have no idea whats going on, but its like he is wired, until he has this scary waking coma thing. We take him in then as I think dehydration is also a big factor and the staring into space is too much.

@Trevallyn That med is a migraine preventative and CVS often turns into migraine and are linked, so at some point I expect we will need something similar.

He has 2 meds a week as preventatives, and a shedload of abort/treat sedatives and anti emetics, poor love. Its the only time he needs his mum! He is home now and right as rain and tucking into an enormous burger. Its crazy, but so relieved, and of course school tomorrow.