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?

unseen oh do email me if you need anything....

Totally understand the mixed feelings about hoping on one hand they don't find anything, but also hoping there are some explanations.

He will be absolutely fine....

Thanks ilove.

We got through it OK. They have taken some biopsies from his GI tract, so it will take a couple of weeks for the results of those to come back. Otherwise the only thing they found was some damage to his oesophagus probably caused by frequent vomiting.

The general anaesthetic was upsetting, but we could go to the recovery room as soon as he started to regain consciousness and overall the staff were really great.

I suppose now it's just waiting for the biopsy results....

Glad to hear you all got through it ok UAM and hope the results are, well, whatever is likely to give the best outcome really - not even sure I know what that is. It's all very complicated isn't it?

The consultant was lovely and discussed things much more thoroughly with us than the paed. registrar before him. Went through the stuff (I already know) about reflux and babies growing out of it. We had already decided we didn't want investigations yet as DS2 is very young and were pleased that the consultant felt the same. He has upped the domperidone dose a bit more.

However, while putting it across much better, he still would rather that we 'weaned ourselves off' using the mattress monitor, without checking anything. From his point of view, the babies he sees with sleep apnoea have other additional needs and are not bouncing 8 kilo typically-developing babies. I wish I'd printed off the stuff from mumsnet that led me to buy the mattress monitor in the first place as there are stories on here of refluxy being resuscitated etc.. I appreciate that such complications are rare, but without checking his oxygen levels, I will not be turning it off because medical people tell me that it is rare!! I'm a bit of a mystery to the medical world myself (e.g. in that my bladder has temporarily packed up after childbirth for a month each time!) and I feel comforted knowing that there is a monitor that will tell me if DS2 appears not to breathe - I'd rather get up for 100 false alarms than miss a real episode. It doesn't frighten me anymore - we check him, prod him, reset the alarm and go back to sleep (now at about 14 times in the last month, two different cots/mattresses and two different monitors).

As for DS2 himself, after a couple of really good days, he's nearly back to his normal sicky self today! DS1 also threatening to start being sick again from a mysterious bug that has been going on for a few weeks on and off. We;re hoping to go on a 'day out with Thomas' tomorrow so really hoping that he is fit in the morning.

bethylou, at least you seem really positive about it all, now. Do you have any follow up plan, or is it a case of wait and see?

I hope you enjoy "a day out with thomas", we have taken ds1 twice and he loved it (but at 5 yo has now just declared "Thomas is for babies") - that said, he is still happy to educate ds2 in all things Thomas and we will be going when Thomas visits our area later in the summer.

He suggested seeing him or the NHS consultant again in a couple of months. Said would check oxygen SATS when DS2 a year old if we are still concerned! As have had a coiple of better days, I couldn't really expect any more I guess - perhaps I would have liked to see the oxygen monitoring happening now, but I'd probably have ended up carrying on using the monitor anyway as it goes off about once a week, not daily. I'm hard to please really - have watched far too much medical drama on tv and like to think I know what I'm on about!! . As for feeling positive, it's amazing what a day off running the washing machine (due to less sick) can do for one's spirits!!

Off to bed now. Hope you all get some rest.

UAM - I hope you don't have too long to wait xx

Bethylou - sounds like you were taken seriously which is good. I hope that the good days remain for you and in the long term, it all works out!! xx

DS is still very sick and we have filmed a few episodes now, just wait to see what happens once the 'experts' get their hands on it!!!

Mouseface I had realised it was you having building work but didn't word my response very clearly. Ours might get finished if they can't come up with 18 good reasons why they can't do so. Sorry to hear about the continuing vomit - let's hope the video compels people to take some action.

Managed to get to the day out with Thomas which was enjoyed by all. I successfully risked feeding DS2 on one of the trains and managed not to cover the coach we were in with baby sick! Just me again with sick down my front!

Bethylou - same here, it's always me with my boobs front covered in sick, never MrMouse!! We go to BCH on Wedneday too to see his cleft team so maybe they'll ask how he is not that we have had ANY support from his cleft nurse......not that I care either to be blunt.

Glad you enjoyed Thomas, isn't it nice to do 'normal' things??

Good luck with your builders, ours are here again today and have drawn a nice little crowd, as per.

I swear the villagers have nothing else to do but chat to my builders......

The builders started here by doing our double glazing. The first day, they did the upstairs windows so I made sure I'd got all the stuff for DS2 downstairs. Unfortunately, he leant over and puked down the inside of my top and bra. Needless to say, I had not got spares for me and spent the rest of the day wondering at what distance I needed to stay from the men to stop them smelling the festering vomit!!

Today, they didn't turn up at all! I did learn that the topless one form Friday had one of my lovely -village- neighbours smearing his back with sun lotion and making him cold drinks!! He must have thought his luck was in!!

Hi.

No builders for the next 3 days. And breathe.......

Well, the video camera went back yesterday and had 9 different puking episodes on so hopefuly, that will be enough to give them an idea of just how distressed he gets.

BCH was fun, not. We were an hour late going into our first appointment as the receptionist didn't bother to tell the clinic we'd arrived.

We met DS's Pead Dentist and his new ENT and had a follow up for his cleft. They are going to leave his next op until he is 2. And are happy to leave the vomiting inthe hands of his current Consultants which means less 4 hour round trips to BCH!!!

Phew.

How are you both UAM and Bethylou.... have you had the endoscopy results yet UAM??

Mouseface by BCH, is that Birmingham (or Bristol?) Birmingham is our closest regional specialist centre (and I used to live in Bristol so know about both!) Hope the video gives them a good idea of what is going on - can't be any more powerful evidence than that can there? I've just happened to have read your post on the thread from the poor lady with the gravely ill baby and understood how poorly your DS has been. I have a foster brother (basically like my younger brother) who is now 24 with very severe cerebral palsy (etc..) and have had several calls from his family to say that he isn't going to make it. He just likes proving them wrong!

Domperidone seems to be helping DS2, although the latest cold is causing problems - cough, cough, cough, vomit!

One of my close friends now has a 5 week old that I have 'diagnosed' as having reflux so I am busy trying to impart all the useful stuff that I have learnt to her without terrifying/depressing her. It's a fine line.

Builders still coming and going (mostly going and still feel like I am having to project manage for them. Their project manager tried to tell me his baby was unwell - I think I trumped him with the 'my baby stops breathing in his sleep' line and he got three lots of people out to do the work this p.m!! Enjoy the rest form the noise and mess Mouseface.

Hi All. Really, really crappy few days. Rounded off this evening by ds2 throwing up twice before bed (sit down, give him his special formula, throw up everything, sit down give formula, throw up, sit down, give formula, give up after he won't drink more than 2oz, put him to bed ). This has pretty much been the pattern of the last week or so.

Still waiting for the results of the biopsies, but in the meantime he has been put on ranitidine. It doesn't seem to make much difference to his vomiting, but hopefully it may help to repair some of the damage to his oesophagus (burns caused by all the vomiting).

Bethylou, glad to hear the domperidone seems to be helping your ds2 and mouseface, I hope all is OK with you. 4 hour round trips sound like a nightmare! (I never like being out with ds2 for mealtimes because of al the fuss and vomiting, so this severely restricts the distance that we are prepared to actually leave the house . However, I've heard about a paediatric feeding clinic based in Birmingham where there seems to be a psychologist who deals with food aversion/phobia so I think we are going to look into this as I now think that some or all of the causes for ds2's problem might be psychological (it all started and got worse after he stopped gaining weight around 4 months old).

Anyway, I'm away on a work trip for the next few days, but I'll check in again when I get back.

does he gag before vomiting??? Some children can learn the gagging as a behaviour and the vomiting just kinda follows iyswim?

SALT allways get involved in feeding issues as they deal with swallow etc. Advice if dc is gagging is too gently close mouth by pushing up under the chin and distract.

hope you get it sorted.

mumbar, he coughs before vomiting and yes, sometimes he gags. Will try the technique you mention.

SALT have not been involved with us yet (probably because the paed is not convinced it is a psychological thing and is therefore insistent on looking for physical causes) - I suspect this has a lot to do with the fact that a psychological problem would mean we were somehow to "blame" and baring in mind both dp and I are well-educated etc, I think the idea that this can happen to people "like them" makes them really very uncomfortable. (If that makes sense).

I think its always worthwhile ruling out the physical (regardless of parents class) for sake of dc's.

And to think parents could be held responsible for all the weird and wonderful behaviours of our DC's is amazing! - and it makes sense a well educated dc can outsmart a Dr

FWIW dc I have come across who did the gagging comes from a very upper class and extremly well edcuated background!!!!

Best of luck with finding cause and solution.

Sorry, that came across very arrogant which was not at all how it was intended .

actually it didn't come across as arrogant at all I knew exactly what you meant!!

FWIW I think your very level headed allowing yourself to be open to the possibility its psychological while sytematically ruling out/ discovering physical causes.

Hi all.

Yes, Bethylou Birmingham. I felt so much empathy for that mum on that thread. I cried.

When we went, they mentioned 'behavioural vomiting' making him vomit too but I'm not at all convinced. If that was the case surely he'd vomit when he had water feeds too and he doesn't.

Also, wouldn't he get upset and vomit once he saw his feed set?

Anyway so sorry things aren't any clearer UAM. And yes, 4 hours is utter hell. I hate it. I get so worked up when we have to go! I've refused to take him there for booking in appointments now and told them to do it over the bloody phone!

We also go to Shrewsbury for his cardiac appoinments now, for the same reason. I'm not driving 2 hours for his doc to go 'yep, he's great, see you in 6 months'

Ah, the builders are back. Will catch up soon as I need to go do some shouting!!!

Hope the meds work for you both!!!

I'm on here less at the mo as trying to spend some quality time with DH in the evenings-typing one handed now whilst feeding! Sorry to hear about more rubbish days -sending lots of sympathy.

Domperidone still seems to be having some effect and it has been nice to have some respite, though counting no chickens!

Have to wake DS1 now so off again and hope to return later in the week. Hope it's a good one for you all. I've booked a cleaner for 2 hrs per week starting tomorrow and I can't wait! Indulgent, but might keep me sane!?!

Just spoke to dp who is looking after the ds's whilst I am away. Apparently he can't even get ds2 anywhere near food/formula without him gagging now and ds2 then threw up whilst I was on the phone . Thankfully I'm going to be back home tomorrow evening (ds2 is a real mummy's boy, so probably my being away doesn't help). However, it is just so frustrating that it only ever seems to get worse.

bethylou, glad to hear things still improving for you (maybe I should drag the unopened bottle of domperidone out for ds2 as well - we didn't use it earlier as I felt it was medicating symptoms rather than getting to the root cause, but well, now I'm getting desparate...)

Mouseface, when will you hear back regarding the videos you sent off?

Hey.

We had an apppointment through for July 15th.

Still as bad as ever and now waking to puke.
I'm exhausted so can't begin to imagine how DS feels.

UAM - hope things improve. xx

Back on for a few mins as DH is busy. It sounds awful for both of you at the mo. I'd definitely give the domperidone a go UAM - we left it in the car for a week too but then got desperate. It's one that emtpies the stomach more quickly isn't it I think? Paed said it was old fashioned but still had a place as it does seem to work. I'm defintely medicating the symptoms here and hate the thought of all this medicine inside such a tiny one (well, 8kg - not that tiny!) but I'm all for getting through in any way possible (hence the cleaner, who was great today!)
Sending lots of positive vibes (aka unmumsnetty hugs!) for a good night and day that follows. We're off to see friends in Oxford and their two year old had a Nissen's fundoplication for reflux in February (so when the pead sat and told me that they are only ever needed by children with additional needs, I smiled inwardly and thought that I know the exception to his rule!) At least she won't mind when DS2 is sick on her carpet etc.. He managed it today on my office floor when I popped in to say hi!

bethylou, our paed has talked about Nissen's fundoplication for ds2 as well. However, my dad had the same operation not so long ago and I know sometimes he can be in lots of pain (apparently it is not possible to throw up all all, or even to burp!), so I don't think I'd consent to them doing it on ds2.

Agreed on the Nissen's fund. I will NOT be letting that happen to DS.

I hope we can make it to July 15th without me having a nevous breakdown.

Getting a bit on top at the moment!!

Hope you both have an easier time soon!!

Hi all. Really, really awful days the past few days. DS2 now refusing to eat or drink anything at all and if he even sips at water or apple juice, he throws it back up again. He has lost 250g in two days (from an already tiny 9.9 kg at 2 years old to start with). He doesn't seem to be ill at all, but just constant vomiting and refusal to eat/drink. Getting really worried he will dehydrate. Nappy dry this morning.

Causing lots of tension and arguments in the house, which doesn't help him and doesn't help my frame of mind either. Should be at work now, but scivving off because I couldn't face the thought of having to be nice to people. Just feeling really, really low . Am so tired.