Behavioural vomiting - a bit long and not for the squeemish.(195 Posts)
Have posted this in SN and children's health too.
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. hmm
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?
en.wikipedia.org/wiki/Cyclic_vomiting_syndrome The only thing I can think of which sounds similar (not quite the same though) is this, I nursed a child with this, he had been in and out of hospital with the condition, once he stopped vomiting he was sent home.
It sounds like a spasm rather then a problem with reflux, it wouldn't show on a barium swallow as they need to catch it. Is it worse if he lies down?
Thanks for the link, will go read it next.
Nope, it's no worse if he's lying down. There is just no pattern. He can be sat playing, in his playcentre which has him standing upright or asleep.
Hmm. I'll have a think and get back to you later.
ok, at the moment is exclusivly tube fed? You say he helps himself to your food- I guess not? Is he sick when he helps himself?
I am NOT a gastro/medical expert but do know about the psychology of eating disorders and children/young adults can become very very distressed about eating (and can indeed be sick) within the context of a psychological probelm with eating. Clearly one would want to rule out all possible medical options before thinking about this- but you might benefit from some input from a specialist in eating/feeding problems from a CAHMS team (child and adolescnet mental health).
Yes, he's only ever been tube fed and they've said he has Sensory Feeding Disorder.
Will mention CAHMS to CCN when I speak to her tomorrow.
Does he vomit when he has small amounts?
Yep. Even 10 mls.
Funny thing though belle, he can keep ANY amount of water down. Just not feed. We've tried 7 in 6 months.......
Does he have a milk intolerance?
DS2 used to do this. We realised it was because he liked it.He liked to vomit when bored or to enjoy the whishing around I did when I had to clear up.
He started at about 20 months and I only finally stopped him doing it at about 4 years.
When we stopped him actually spewing onto the floor , he took to just vomiting into his mouth and swallowing it again.
We stopped it by withdrawing stuff really. We used a very neutral 'no' and then moving him to somewhere really dull - a sort of no stimulation type thing.
It worked quite quickly. Thank god
Pagwatch - DS HATES it. He screams in pain, pulls at his hair, hits his head and cries. He gets utterly, utterly distressed.
I'm glad you DS2 is out of that habit now.
Belle - he's non oral. He doesn't/hasn't/won't eat due to the Sensory Feeding Disorder.
oh poor boy. I am sorry I missed that in your post
No harm done! I appreciate every bit of help, advice or experience!!!!
I'm bumping in the hope someone can help or share their experiences..............
Mouseface, he sounds a bit like our ds2. He vomits around 5-6 times per day, but is not overfed as he only takes around 2-4oz formula at a time. He is 2 years but still on a specialist formula as he has a milk allergy. So far no-one has come up with any answer and the medics don't even take it seriously till they see it (thankfully (sort of) at his last paed appointment he threw up on the office floor ).
We now have a referral to a gastroenterologist and to an ENT specialist as he seems to have abnormally large tonsils (as did I at the same age).
All the vomiting is pretty awful though isn't it?
I should also add, although ds2 is not tube fed, he eats almost no solid food and still (age 2) relies largely on formula for calories/nutrition.
Sounds very similar. I'm sure the docs all think we make this stuff up! Like we want our DCs to be ill?
Distressed, vomiting, crying, losing weight, not eating solids and basically having a fairly shit quality of life because of it!!
Oooh, yes please, I'd like some of that for my DC??
On the plus side, as with you, his CCN saw the horror of a feed yesterday and is going to do some ass kicking for me.
I should imagine that once she starts fighting our corner, things will change rapidly!!!
I hope your DS is ok, maybe update this post once he's been to Gastro and ENT?
I agree, I think the docs do think we exaggerate about it. Even some members of my family (who have not seen ds2 at mealtimes) think we are just overreacting and being a bit melodramatic .
If he didn't have to eat though, ds2 would be the happiest boy around. He's so cheerful the rest of the time and I wouldn't mind him being small if only it wasn't for all the vomiting.
I'll let you know how we get on anyway (gastro visit is next week).
God yes, DS is so happy when not vomiting. How amazing that they are so alike even though we have clearly been made to feel fraudsters of the extreme kind for fabricating our son's illnesses!!
Oh to live a day in our shoes hey??
Yes, I've tagged this thread in my watch list so please do update me.
Good luck xx
Just wanted to add my sympathies to both of you struggling with this. I have a four month old with severe reflux and am already fed up of the constant vomiting (and the fact that I have had to buy two tops for me to wear to a wedding on Saturday as it's me that ends up covered, not just him!).
There are obviously several reasons why children can be very sicky, and I'm afraid I can't help, other than to agree that if you haven't experienced it, you a) wouldn't believe it or b) understand it. I've only been dealing with it for four months - hats off to you ladies and I look forward to hearing some positive steps from your next appointments.
Bless your heart. It's shit. I don't mince my words BTW!!!!
I hope that you have been gievn some sort of meds for your DS? There are lots that can help in most cases.
You need to make sure that someone sees him being sick. This has only just happened for my DS at 13 months but now it has, by his CCN (community children's nurse), she is livid that his docs have 'ignored' it so far.
Sorry to pry sweetie, does your DS have any other conditions? My DS is disabled, heart problems, cleft palate, Pierre Robin Sequence and more.
According to his docs, cardiac issues lead to poor feeders and digestive issues......
I have to say, being his mum, alot of their theories are utter bollocks.
And yes, you are right, unless you have to deal with this every single heart wrenching day, you have no idea just how severe reflux/vomiting can bloody well be!!!!!
Please get as many people as you can to help, GP/HV is your best step to start.
Let us know (me and UAM) know how you get on.
Thanks for the lovely post - I wasn't wishing to gatecrash. DS2 doesn't have any other conditions as far as we know and is a gloriously happy little fella, despite the constant vomiting. We've now got him on omeprazole and domperidone (after gaviscon and ranitidine worked for about three days each!) I'm an advisory teacher for pupils with severe learning difficulties so was aware of what to ask the -brilliant- GP for. We've also seen the paediatrician but she was really very unhelpful!
My main problem at the moment is we think DS2 has sleep apnoea because of the reflux but the paediatrician just said I should turn off the mattress sensor (that suggests that he is holding his breath) because it is unreliable and because she hasn't seen a baby yet who has sleep apnoea due to reflux. I didn't like to say she wasn't likely to find one if she just poo pooed anyone who mentioned it! Either way, we are aware that they are unreliable (according to the NHS), use it anyway and don't panic nearly as much as we would if we didn't have one.
I totally agree about getting the professionals to see what's going on - when I first went to the GP, DS2 did a brilliant demonstration of the gagging/retching that was terrifying in itself (as he couldn't catch his breath). I think the GP believed me anyway (as DS1 also had reflux) but he really couldn't argue with a demonstration!
I am sure, however, that my friends switch off as soon as I mention reflux, but it does have a major effect on our day to day lives at the mo, especially with the worry about the possible apnoea.
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