Can anyone talk to me about CVS?

[MissMarianHalcombe]

My son is 20. When he was 17 he had 3 months of constant vomiting, exhaustion. Violent vomiting several times a day. It was really debilitating. Had to miss 6th form as he couldn’t leave the house.
It then just stopped.
He’s now in 2nd year of Uni & it’s started again. He’s now been sick two or three times a day for the last 2 months.
He’s had blood tests, a stool sample done-all normal. He currently waiting for ultrasound- I’m assuming checking for an ulcer.
I’ve done my own research & CVS fits all his symptoms. GP won’t entertain this as they need to eliminate everything else. But in the meantime he’s got no diagnosis & no life.
I’m worried how it’s all affecting his MH.
Does anyone know of any support groups or have any experience of it?

Do you know when he's having the ultrasound?

@myothercarisaskoda I’m afraid not. He’s still waiting.
He was sick three times yesterday.

Could you call the department at the hospital where the ultrasound will be done and ask them if they've scheduled an appointment yet?

DS1 had CVS. He was diagnosed when he was 7 after years of repeated episodes of violent vomiting that went on for days. He’d always end up in hospital on a drip because he was dehydrated. We begged and begged for tests but they were denied and I was labelled as a neurotic mother.

DH was in the RAF so we moved across the country and the local hospital there referred us to a paediatric gastroenterologist who arranged an urgent endoscopy. That found he had 2 ulcers, hence why he’d had episodes of coffee ground vomiting.

It was in the follow up appointment that they said he had CVS. I rolled my eyes internally, this was around 20yrs, because I thought it was just another made up thing but when I got home and researched it everything made sense. They started him on Ondansetron then. They said it would probably turn into migraines as he got older and it has.

We found that he’d get an episode when he was stressed or excited, so just before we went on holiday, his birthday or Christmas. He actually hates his birthday and Christmas now because he associates it with throwing up for days on end. We’ve had to cancel holidays due to it too.

You need to push for a referral to a gastroenterologist. The GP can’t deny you that. An ultrasound is no use at all in this situation.

If you can afford it, pay to see a gastroenterologist privately.

Thank you all the replies.
He’s suffered from migraines since he was pre-teen.
CVS is the only thing that fits that I can find.
He doesn’t have pain, reflux, diarrhoea etc.
I’ll definitely push for an appointment with a gastroenterologist. I’ll pay if need be

@MissMarianHalcombe

Thank you all the replies. He’s suffered from migraines since he was pre-teen. CVS is the only thing that fits that I can find. He doesn’t have pain, reflux, diarrhoea etc. I’ll definitely push for an appointment with a gastroenterologist. I’ll pay if need be

If you have the money, then just ring up your nearest private hospital as soon as they are open and make an appointment. Just make sure that the consultant you see also works for the NHS, preferably at your local hospital.