Anyone else have a child with Cyclical Vomiting Syndrome?

[Nicnocknoo]

DS1 was diagnosed with cyclical vomiting syndrome (CVS) a year ago. It has helped having a diagnosis but we still struggle whenever he has a CVS episode. Just wondered if anyone else has a child with the same condition and wanted to share experiences/advice.
Thanks
x

[CMOTdibbler]

All I ever found helped was always having a bucket under my bed with a bottle of full sugar lemonade and a packet of chipsticks (those sort of crisps that are like tiny chips). After my first vomit of an attack I'd just go back to bed and take a drink of lemonade, eat some crisps, pass out, wake up, vomit into bucket and repeat.

The sugar, liquid and salt stopped me getting too dehydrated, and weirdly, having something to vomit up was more comfortable.

Couldn't bear any light, so keeping the curtains shut, and just going with the whole sleep/vomit cycle was the only way forward

[Nicnocknoo]

Thanks for replying. I hope you have now outgrown CVS and no longer suffer.

Were you ever hospitalised with the condition?
Apart from dehydration, there doesn't seem to be any point in going to A&E for CVS but I may be wrong. Ds is currently going through an episode and has been sick for three days now and out of it in between being sick ... I know he just has to go through it but can't help thinking, should I be doing more?

[CMOTdibbler]

My CVS turned into classic migraine - which makes me sick, but the drugs work on it, so I can head it off at the first sign

I was never hospitalised, but never vomited for much over 24 hours, and once I'd got the hang of it, always forced some fluids down as soon as I'd vomited each time to stop me getting dehydrated.

Is your DS seeing someone about the CVS ?

[Phoenix4725]

another adult suffer here and yes i have been in for fw times for dehydration but as ds1 gets older he will learn to be able to tell you when he is really struggling

[Nicnocknoo]

Thanks - think we're doing OK on fluids at the mo as I do get him to drink more just after being sick (if I wait a bit he gets too drowsy). He's very down this time whereas previously he's managed the occasional smile - I think he's starting to understand he's stuck with this.

He has seen a Consultant twice and no further appt due for a year now. Am considering the homeopathic route to see if there is a way to ward off episodes ...

[DaisymooSteiner]

I'm not a big expert as my ds has only had a couple of attacks and we're still not totally sure whether or not it is cyclical vomiting syndrome. The second attack made him vomit so much he tore his oesophagus and he was hospitalised for 2 days with severe dehydration (he'd only been vomiting for 16 hours too )

We were given an anti-emetic after the second episode and I don't know whether this is what has helped or not, but we've given him some each time he's looked like he might be starting with a bout and so far we haven't had any episodes in the last 9 months.

[SofiaAmes]

My ds (age 11) has Cyclical Vomiting Syndrome. We have just been to see THE expert on the syndrome who happens to be at a hospital near us here in Los Angeles. He gave some great suggestions for treatment with no side effects. Please feel free to contact me through Mumsnet if you would like more information.

[SofiaAmes]

Just wanted to add a follow up. My ds has been under the treatment of Dr. Boles who is the expert on CVS. Ds is being treated with high doses of L-Carnitine and CoQ10 - nutrients with NO side effects. He has been illness free for 6 months now which is the longest period in his short little life that he has ever been illness free. It appears that CVS is a mitochondrial disease and Dr. Boles is having great succes in treating patients with these co-enzymes. Please feel free to contact me through Mumsnet if you want more information.