Behavioural vomiting - a bit long and not for the squeemish.

[Mouseface]

DS, 13m, has always been tube fed (cardiac problems, Pierre Robin sequence and cleft palate amoungst other issues) and has been treated for severe reflux using various medications since being 4 months old.

However, yesterday his Consultant Paediatrician said he now believes that this is "behavioural vomiting", not reflux.

He has likened it to a phobia, saying DS is unhappy/scared when being fed so makes himself sick.

Yet is more than happy to be hooked up to the feeding pump, plays with the feed set when empty, spoons etc, helps himself to food off our plates and plays with that too. He never gets upset before a feed.

DS recently had a barium swallow which showed no 'mechanical' problems, infact, no problems at all.

When he pukes, he screams in what I think is pain, screws his face up, pulls his hair, hits his head and cries. He gets VERY distressed. As soon as he's finished, he's back to playng again.

There is no pattern to his puking at all. It can happen during or as long as 2 hours after a feed and can be with 10ml or 200mls inside him. He can lose 20ml or the whole feed. It can be anytime of the day or night.

I have started to keep a log of times and volumes which I gave to CP for DS's hospital notes.

DS's nurse came again today and saw him puke for the first time as she usually avoids feed time so I can get on with it. She was mortified to see just how much distress he was in and doesn't think it's behavioural at all.

The CP's plan is to get DS's SALT to watch him vomit, no idea why, and a gastro doc at some point. Then take it from there.

Has anyone had anything like this? Or know someone who has? Even in an older child?

[MarvelousNonPerfection]

Can you video some of them so everyone can brain storm together?

When my tummy is getting ready to upchuck i have a very sore pinching/pressure pain at the middle bottom of my ribcage and get hot and sweaty, i'm 41 and it tis not pleasant and i know what is going to happen.

[SpamFritter]

Mouse - when you say tube fed do you mean ng or g-tube?

dd was ng tube fed to a similar age. She had spectacular vomits, due (by this age) to a very sensitive gag reflex.

Are you looking to get him off the tube soon?

[Mouseface]

MNP - have already arranged for a video to be shot before next visit to hospital so thank you for being like minded!!

Poor you though, what's your condition??? It sounds alot like DS

Spam - Yep, NG. Always, he's non oral and never had a bottle, food, spoon in his mouth from me to feed him etc. Sensory Feeding Disorder........... he hates a spoon near him unless he's holding it and won't have ANY food on it.

Sorry for the delay in coming back to you both.

[saggarmakersbottomknocker]

I'm Spam.

This was very like dd - oral aversion due to long term vent, suction, etc and TBH by this age having the tube passed didn't help. The tube itself can aggravate the gag reflex - I've had one myself - having it passed isn't pleasant and it does irritate the back of the throat. dd would take formula by beaker though as long as she was in control and also some solids in a similar fashion but she was very picky; she wouldn't let me feed her. In the end we pulled the tube for a while and just ran with it. She lost weight initially and everything was fortified (Calogen and Maxijul)- she survived on choc buttons and quavers for a while because no real swallowing was required. We did have to go back to the tube on and off but got there eventually. She vomitted a lot less without the tube.

If he can't go without the ng have you considered a g-tube?

[Mouseface]

They've mentioned a g-tube.

I want them to exhaust all other avenues first, not just put one in. I want them to check it's nothing more IYKWIM?

When he was last in PICU, they wanted to give him a tracky due to him being a grade 4 intubation - because of his short jaw - just for ease for potential future ops! Not because he needed one......

I just want him investigated and for them not to assume it's the ng tube. But I see what you mean..... the ng must irratate. And yes, he gets upset having it passed (monthly) but it's usually done and dusted in 2 mins, I've gotten super quick!