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

[Mouseface]

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?

Oh UAM, I'm so sorry you are having such a rough time.

Have you spoken to any doctors etc about him not eating/drinking?

It's no shock he doesn't want anything in his mouth though is it?

This is going to sound daft but will he eat chocolate? Or any other sweets/snacks? Have you tried ice lollies?

I know it is so hard to deal with situations like this and I'm not at all surprised things at home are fraught. Balls to work, they can manage without you today.

You need some help. Can you speak to anyone today? Do you have access to a children's ward given the time?

If he's got dry nappies, he is dehydrated but you know that....

Have you got anyone that you can call for advice?

Thanks. He continued to throw up everything (including lunch - twice), but I've given him oat milk since then and fingers crossed he seems to be keeping that down. He's had a whole 3 "twiglets" too (about the only snacks he will ever eat).

We've generally avoided the children's ward/GP's as in the past we've found them little more than useless (he was admitted to the children's ward at about 7 months and fed with an NG tube, except they only bothered to give him 60 mls of diaoralyte in 12 hours and despite the doctor that admitted him saying it would be OK for them to put EBM down the tube, the nurses refused - anyway, all in all it was quite traumatic). Anyway, now he's finally got some liquids down I think I'll avoid meals with him for now and just aim to get liquid in and hope he doesn't get too much thinner.

unseen so sorry . When do you get the results of the biopsy back? DS seems to like the banana Neocate. Maybe bored with food?

But if he is dehydrated, they will want to put up a drip. At least every time DS rocked up in A & E, this would be the pattern. If you do have to take him to A & E, be sure and tell them that he is under [fill in the blank] and undergoing tests, otherwise they may want to investigate issues that are already being investigated.

Not supposed to be on here tonight but couldn't lurk without sending more sympathy to you UAM. It sounds awful. I hope things improve over the weekend.

Hi. Back again. Have spent the rest of the evening trying to find a comparison between reflux and colic for my friend whose baby of 6 weeks is, to my mind, struggling with silent reflux. The unhelpful GP has told her it can't be reflux as he isn't being sick - what a load of rubbish! I so want to educate GPs about this!! Can any of you point me in the right direction of a comparison? Ta.

Thanks all. At least he kept down the oat milk this afternoon and even nibbled on a piece of toast and an olive (yes, just the one) for dinner, but at least he kept it down. I am still wondering if his hypoallergenic milk isn't causing the problem. The only thing is that that is really high calorie (125 calories/100 mls - almost double the calories of full fat milk), whereas oat milk is more like semi-skimmed. Still, I'm thinking at the moment that if he keeps the oat milk down, I'll give him that over the weekend (any calories in and staying in is maybe better than more going in and then being thrown back up again), and if he seems better with oat milk over the weekend I'll call his dietician on Monday and see if we can find another way to fill in the extra calorie needs (without more food preferably).

ilove, we see the gastro on Tuesday, so I think that means the biopsy results are in, which will at least give us some answers in that respect. He was put on ranitidine after his endoscope, but we've stopped giving it as his vomiting seemed even worse on it than before . We've not tried the banana neocate, but he point-blank refused the (actually quite decent tasting) blackcurrant one, so I don't think it's a taste thing with that. He has the unflavoured one, which he just seems to accept.

Anyway, sorry for the long ramble. Fingers crossed he gets better over the weekend and by tuesday the gastro has some answers for us.

unseen here's what I know re: supplements. Neocate Nutra, a food supplement, was withdrawn from the UK market a few weeks ago due to some not following instructions. So, DS was switched to Polycal which is dairy and soya free. Totally neutral. He's on 10 scoops a day and it dissolves into food and drink. I bribe encourage him to have fruit, and add Polycal to that.

ilove thanks. I had no idea that Nutra had been stopped again. Previously ds2 had been given duocal, but that has many of the same ingredients as Neocate (its made by the same people), but when he was having that he also seemed to vomit more. This is why (in part) I'm wondering if it is Neocate-related. I'll ask about Polycal. He has been given calogen before too, but I know that technically that is not recommended for under 5's. No doubt though the dietician will tell us she wants to up his calories naturally again though .

Hi all. Just thought I'd pop back quickly to say we've had a few days of respite. Keeping my fingers crossed that it continues. We get the biopsy results tomorrow, so just have to wait and see what (if anything) that brings up.

Hope everyone else is doing OK.

Oh, best of luck unseen for tomorrow.

Sorry, not been around to update or read updates. DS has had a rubbish few days.

Good luck UAM!!! Ilove is right re the Neocate, a friend of ours has just had a nightmare trying to find a replacement that her daughter will take!

I hate when they withdraw a food that your DC will actually take and/or can tolorate.

Anyway, DS is due back on 15th for a 'chat' about the video we took, I'm hoping the gastro doc has had a look too.

His CCN is here later so she may be able to tell me more.

Anyway, back to the next pump feed. Hope everyone is ok despite the usual feeding issues!

So that it was withdrawn, but the reason was that some people weren't following the instructions. It's a food, and to be made up to a consistency of a paste, but guess people were making up as a formula? I don't know, but it's annoying as it hasn't been withdrawn from the US market. We're trying Duocal now.

Hope you get some answers unseen

UAM - how did you get on re the results?

Are you ok? xx

Hi all. Sorry I didn't post yesterday, was a bit busy. So, OK, the gastroenterologist has diagnosed ds2 with something called eosoniphilic oesophagitis. Which apparently has symptoms very much like reflux, but is damage to the oesophagus caused usually (but not always) by allergy.

Anyway, he's still off the Neocate and , so far, so good, we've had some respite in the last few days. I don't dare to hope that it might carry on!

I'm glad you've got some possible answers UAM. May the fair wind continue. We've had a rubbish few days again - screaming feeds (DS2, not me..yet!), lots of bottom wind, swimming in sick (sometimes 3 hours after the previous feed which stinks) and a toddler who has thrown in conjunctivitis just for the fun of it. I must have been very bad in a previous life!! Have escaped for my weekly swim tonight and has refreshed me once more and made me feel I can face tomorrow after all, so all good. DS1's reflux seems to be rearing it's ugly head - I think the GP is going to think I'm making it up!!

oh, bethylou. Sorry to hear you've been having a hard time. The domperidone has stopped working then?

UAM - at least you have a diagnosis. That must make you feel a little better? What's next then?

Bethylou - Yep, same here. It can be hours after a feed that DS is sick. And boy does it stink.

Do either of your DCs 'dry retch'? Like they are going to vomit but have en empty tummy so can't as such? DS does this first thing in the morning and sometimes at night too.

It's the same pain, distress as a vomit but without the volume of liquid........

Roll on next thursday for the plan of action here. I have a feeling an endoscopy will be the next step

Our Cons Paed mentioned Eosoniphilic Oesophagitis some months back but since the barium swallow, has ruled it out?

Anyway, I hope UAM, that the good run continues and Bethylou you have a let up soon.

DS2 did a lot of dry retching when he was newborn and does it every now and then still. It used to frighten me as he could go on for a good 15secs without a breath. I think the pain that all this causes them physically is one of the hardest things to deal with. DS2 looks at me as if to say' "Do something!" and I can't. Think the drugs may needa adjusting as he has gained weight. Now I've had him weighed, will ring the GP and get him to check the dosage. I was told that the domperidone would need adjusting. On the other hand, could just be ona downer - it seems to come in cycles so I just hope this is a short blip.

UAM if there's a diagnosis, does this mean that they have a solution?

Mouseface looking forward to next Thursday on your behalf.

What's next for us? Well, as ds2 seems to have been better the last few days, we are going to leave him and see whether the good spell lasts. However, the gastroenterologist gave me a prescription for corticosteroids which he said we could collect and try if/when the good spell wears off. Apparently though, even if he stops being sick straight away, it will take months for the damage to his oesophagus to heal .

Wrt diagnosis, apparently the only way to tell for sure is with biopsy. DS2 looked OK on the barium swallow. Even by endoscopy alone, things might look normal.

My ds2 also "dry retches" though too. Usually first thing in the morning when I'm preparing his milk and he has an empty stomach.

Good luck for next thursday, Mouseface.

Thanks, I will let you know what happens.

Hmmm. Thought we were finally getting on top of it. Then ds2 threw up all over the bed this evening . OK, back to the drawing board.

Once again, good luck for tomorrow MF. No sick here today and only a little yesterday but screaming feeds anyway. Have now tried nearly all makes of forumla and he says that breastmilk is best! Maybe a midwife has got to him and whispered this in his ear?!

Hi.

Well, no magic wand and the Consultant Paed hadn't even wathced the vidoe footage that we shot of DS vomiting.

Anyway, moving on before I combust with rage.....

The gastro doc has seen and has said that in his opinion, it's severe reflux. Hmm, so why do NONE of the meds work? At all, ever?

The enxt thing for us is a pH study which will take place over 24 hours at home. That means that one of us (most likely me) need to keep an eye on him so he doesn't pull it out.

Won't be for 4 weeks, maybe more as the gastro doc is away. Clealy a bad time of year to be ill and need treatment/appontments.

So, that's it. That's all we have re his vomiting. I feel so flat.

They are also chaning his feed yet again to a 'standard' feed which has 1.5kcal per ml or something like that.

Ho hum.

On we go.

Sorry you are no further forward UAM....

Bethylou - hope the vomiting remains at bay. Sorry you are stil getting the screaming with the feeds.... do you think that is pain or the fear of potentially being sick?

Oh, Mouseface. Sorry to hear it didn't go well. I really recognise that feeling of coming out of an appointment and feeling deflated.

We've been having another bad few days here too. Just as ds2 started to appear to get an appetite and everybody started to feel relaxed and able to act like a "normal" family, back it comes. I tried not to get my hopes up that it would last, but I am really disappointed now.

We see the ENT specialist next week and no-one after that until October/Novemver time. Why doesn't the NHS just pull its finger out and get a move on to get our children seen to quickly? I'm betting the medics don't wait so long for investigative work to be carried out...

Oh Mouseface how thoroughly frustrating/disappointing/bloody annoying of the consultant. I really feel for you and your family. After all the effort of recording it too.

My friend's little boy had a pH test doen for it - hope that it will give you some idea whether the medics are right.

I've randomly just remembered that my foster brother (with very severe cerebral palsy) has behavioural vomiting (I know that's not what we're talking about now, but was the original thread title). (Not quite sure how I forgot as it is quite spectacular, but no need for me to elaborate here..) If I say firmly, "DFB.. no.." when he starts gagging I can stop him! Last time I was there I was with a set of new staff (as he is now 24, he lives in a residential home for young adults) and didn't feel I could do that and he did it everywhere (missing himself of course!!)

UAM I totally understand your disappointment. We've had another good day here (even though I've been nauseous all day with a bug..) but I have now come to accept that every good day is a bonus and don't expect it to last - I just make the most of the respite.

The screaming during feeding only dtarts after about two minutes so think it is still pain. There are elements of him becoming aversive to feeding from me so I'm desperately trying to get him on formula so he can have it from a bottle and sit up, but he's refused four different types so far. I haven't got the time or energy to express 4 times a day with a mad toddler as well. May have to at this rate...

I hope the disappointment fades a little over the weekend and wish you both a