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?

Mouse, grrr on your behalf. The only good thing is at least you have a date for the pH study.
My ds has been fine we've only had a few random vomits. My dd has suddenly got worse and my dh and I are fighting over who gets to avoid giving her her milk as the evening/night feeds especially come back. I don't think it's an intolerance as others stay down but it's very messy.

Mouse I'm sorry to hear that the consultant didn't respind in the way that you hoped. Let's hope the meds keep things under control until the pH study can give you some answers. We've been away to Cornwall and DS2 was only sick once in 3 days - think my friends thought I was making it all up!! He has returned to form tonight, but it has been a nice respite. His mattress monitor went off again last night though for the first time in a few weeks so think I need to go and fight the consulant on that front. Ds1 is still complaining daily of feeling sick at the mo so not sure whether his reflux is bad or whether it's his diet that needs more adjusting (and I'm sure that the two are linked anyway, just can't get any clear answers out of a two year old!)

MMM sorry to hear that you have two children taking it in truns to vomit too!!

turns, obviously (typed post-270 mile drive and a glass of red wine!!)

Good luck for next week Mouse. Hope your DS will be okay. DS2 has been teething again this week and has been vomiting for England, like he did just ebfore we went on holiday. Seems like this is his way when teething. His mattress monitor has also gine off 6 times in the last 2 weeks - so looking forward to seeing his consultant on December 20th. Have been rehearsing my speech for him!

Quick update - Merry Christmas too - DS had his pH study a week ago, no results as yet.

HE only vomitted the once whilst there but that was a good day.

Once I get the results, I'll post again.

I hope that you are all okay and getting through if your DCs are still all suffering.

Take care. x

Merry Christmas and wanted to say I'll look forward to hearing how he got on. Will write more about my appointment on the 20th in the next few days. Needles tosay, having rung two hours before the clinic to check that the consultant was there and being told yes, he was not...

Merry Christmas all.

Sorry I haven't posted in quite a while.

It did look like we were having some respite after we changed ds2's milk from the hypoallergenic stuff to straightforward oat milk this summer. However, the vomiting has not gone entirely, but just reduced (from 5-6 times per day to about 5-6 times per week) and he still won't eat voluntarily which makes it difficult to put him in a nursery for work and I'm dreading him starting pre-school in September.

In the past few days though he caught a cold and is once again back to keeping nothing down and refusing all food/drinks, even though the cold seems to have gone now .

Separately from that, since October we have been under a clinical psychologist (a lot of foot stamping at his paed was involved) to see if she can help with his generally ongoing refusal to eat anything at all really - which I think is linked to him vomiting regularly since he was 6 months old.

It all moves soooo slowly though and I just sit and see him not really making any improvement over the months and wonder how long this will go on for.

Oh God, my previous post was supposed to say 'needless to say', rather than anything to do with needles!!

Hi UAM. Lovely to hear from you, even if not in great circumstances. What sort of thing does the clinical psych do? I'm sure there must be a link to the pain and nasty experience of being so sick that affects eating. I see it already in DS2 at times.

At the hospital, we saw a lovely registrar who really listened to us and arranged an ECG (which then got lost but luckily refound as I'd had to return the following day - 30 mile round trip - on my own with both DS in tow in the snow to have it done). That's normal at least. She will speak to the consultant when she sees him in the new year about what else can be done to find the cause of the apnoea and get back to us. The chances are the answer will be nothing more but I will continue our fight! Vomiting is variable - generally much improved as DS2 is nearly walking now but awful when teething.

Keep up the good fight.

Grrr, just posted a long reply then lost it.

Things are much better with us; ds can now control his vomiting and occasionally vomits into his mouth only (pleasant huh). dd is much better and only seems to go through phases of vomiting every week or so but sadly this is still going on despite weaning and being mobile.

The reflux seems to be in the family as sil has just had a baby which has bad reflux as well. Fortunately for them we have lots of suggestions that may help!

Mouse, UAM and Bethylou I hope that all of you have had some positives from the recent investigations.

Well, we've been vomit free for 4 whole weeks!

No news from the hospital as yet so no idea if DS actually has reflux of not.

Will keep you posted. Hope you are all as well as you can be

That is brilliant. We've been vomit free for 20 minutes, but it doesn't count if it's in his mouth.

Oh MMM

Sorry. It's absolutely soul destroying isn't it?

We had a call from the hospital too, apprently, DS has very very mild reflux, 6.7%.

No idea what that means. Thing is, by the time they actually bothered to do the test, he was much better.

They should have done it over a year ago when he was vomiting 8,9 and 10 times a day, losing every single feed and in agony.

Oh well, it's done now.

I hope you get more than 20 mins MMM. Bless your heart x

Thanks for the sympathy but dd is much less refluxy than ds was and he is heaps better.

I'm so glad you've had a good month, long may it continue.

Good news Mouse-may it be a permanent respite. I wonder if different babies react differently to different levels of reflux, a bit like men having flu when women have a cold - maybe your little one's 6.7% is very difficult for him to deal with, compared for other children? Hope that doesn't sound unkind to your DS-just trying to think round the issue.

MMM sounds like you are a pro at dealing with it. DS2's refllux is much better now he is crawling (though he spreads it better that way!!) as long as we keep him upright and still for about 20 mins after a meal/milk.

DS1 has now been referred to the paediatrician as he's still on ranitidine at 2.9yrs and I suspect they are going to want to investigate.. will wait and see as it's definitely in DH's side of the family. I don't want the fundoplication doing so thinking there's little point in starting investigations at the mo.

Hello all, I just wanted to see if anyone was interested in reviving this thread again?

I do hope that everyone else's lo's are somewhat improved over the last few months. DS2, seemed to be improving, but has had a sudden lapse starting around 2 months ago and seeming to get progressively worse. He now routinely vomits a minimum of 2 times per day. This is projectile type, emptying his stomach type of vomiting (sorry), rather than a little mouthful type.

To improve things , the paed has said he can't do more for him and "some children are simply more sicky than others". He refuses to have ds2 under his care any more, for what exact reasons, we don't have a clue. It is all very, very exhausting. DS2 has not gained an oz of weight in 4 months now (he was tiny before) due to the vomiting and his growth height-wise has started to decline too - he is now below the 0.4th centile for weight and on the 0.4th centile for height. Every day seems like a constant struggle to stop him throwing up and means it is difficult to take him anywhere, for fear that he will be sick.

He has tried every type of medication going to stop it and we are now at the point of wondering whether we need to seriously consider Nissen Funduplation for him, but that is a serious op and will likely involve other complications. It is so hard to know what to do for the best.

How about everyone else?

I'm sorry things are so tough. Is your ds any better at eating solids? I am flabbergasted that the paeds consultant can remove him from his care. Who is supervising him since he is so small and obviously failing to gain weight?

We are much better although it's been rocky; ds is on ranitidine as the hospital think he is refluxing as he often says he has a tummy ache before he vomits. The vomiting is much better; sometimes not at all and sometimes a couple of times a week immediately after eating. We tried Omeprazole which made him projectile vomit!
Dd has stopped being sick but developed what appeared to be a food aversion and spent several months refusing solids apart from yoghurt. Then suddenly in the last month or so decided food is ok and although limited in her variety is much better. She managed to snatch a biscuit off ds tonight and demolish it so i would say she's getting there. We were referred but she'd fixed herself and we still haven't seen the dietician.

Thanks for the reply!

DS2 isn't really better with solids, no. I think he has a bit of a food aversion due to the constant vomiting, but we have also had more allergy testing today and found he is (still) allergic to milk, chickpeas, sesame and birch pollen, which can cause a reaction to some fruits, possibly explaning why he appears to throw up more with increased fruit in his diet.

We have thankfully managed to get a new paed fairly quickly (hooray) and written a letter of complaint about the old one (having a dr. title comes in useful sometimes, even if we're not medics ).

Interesting what you say about omeprazole though, we found the same thing! Ranatidine didn't seem to do much either way and the best was domperidone, which helped to a limited degree.

Glad to hear your dd seems to be improving though. It gives some hope!

I'm glad you are still under consultant care and hope they can help.

We're off to see the dietician next week so they can marvel at the minute quantities of food dd takes. I'm just thankful she is trying anything.

I could completely understand why your ds2 might have a food aversion all that vomiting must be so easily linked in their minds.

Hi. Just noticed you are back on here, having not checked for a while. Sorry to hear that things are still continuing on the vomit front. We have managed to get DS2 (now 17 months) off all his drugs. Lanzoprazole seemed to work best for him in the end. He does retch on any mouthful that he considers is one too many but we find we can usually distract him before he follows through.

DS1 has had a harder time. We had the pH study done in March (which was a fairly awful 24 hours that I hope not to repeat ever again). He only has mild reflux 4.2% of the time but in my humble opinion it wasn't a fair test as he refused to eat anything except oast and a jacke potato while we were there. Things like strawberries and milky priducts seem to make things a lot worse. Anyway, paediatrcian asked us to keep him off the ranitidine which was going fine until about a month ago when he started burping a lot and they sound very harsh and are sometimes quite refluxy. Will have to go back soon if it doesn't settle down as they are distressing him and he is also complaining of tummyache a lot again, often aborting meals due to it. He's been dairy-free now since May and this has made a huge difference to his weight and general well-being.

The food aversions you are dealing with sound like hard work. We have had to work very hard at keeping calm and trying to tempt DS1 with pretty much anything we can think of whilst not developing too many bad habits for the future.

Off on hols tomorrow for a week and will check in when we get back. Hope you all have a good week.