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?

oops - my belt caught the mouse and posted my message on my behalf!!

I was just saying I hope you and your families have a relatively dry weekend, and I'm not talking rain!!

bethylou, has your ds2 been tested for milk protein allergy? He is sounding quite a lot like ds2 when he first started with all this. He first started with problems when I tried to introduce formula, which he point blank refused to take (I only managed about half an oz), after I'd tried him with formula, he started acting as though in pain and arching back when he was feeding from me. He then started refusing feeds. This continued until I cut dairy completely out of my diet after he had an anaphylactic reaction to yoghurt at around 6 months-ish. In our case though, the actual vomiting started much later, only after I stopped bf and he was on hypoallergenic formula and solids. However, it was thought he was refusing feeds due to a reaction to the dairy from my diet. Some children also get worse reactions than that and can appear to have reflux.

DS2 had eczema btw (until I went dairy free), which is also a common sign in exclusively breastfed babies.

Maybe we should start our own 'look, this needs sorting and now' campain and march to the nearset NHS HQ.

It breaks my heart when DS constantly vomits. He has a cold right now too so it's alot worse as the snot (sorry TMI) drips through his cleft and into his throat making him gag more.

I second that we all have a better weekend than of late. Will keep you both posted re the pH study. And anything else they decide. The dietician has called this morning to say we need to up his volume of fluids per day. Great, more to come back.

Bethylou funny you should say about your DFB. I have tried distraction techniques and telling DS 'no' as he starts to retch. No effect.

Mouseface, I'm right behind you on the marching on the nearest NHS HQ.

Although, we had the appointment with the ENT consultant today, who said he would take ds2's tonsils out if we consented. The only problem is that this makes me even more scared than the endoscopy, so I said no for the moment.

We're off on holiday next week, I just hope he has a good couple of weeks so we can relax and enjoy ourselves a bit. Last year was a nightmare, we barely left the holiday cottage . So, here's hoping!

I hope everyone else is OK, this thread has been a little quiet of late!

Good luck UAM with the holiday - let's hope it goes well.

I guessed that you will have tried pretty much everything Mouseface - just amazed that I had forgotten about it.

DS2 now taking two bottles of formula in the day in an upright position and life is currently transformed. Still getting the sick, but without screaming feeds. It means we don't have to be home for each feed which is liberating (until he vomits at someone in a cafe of course!) It has also conincided with him sitting pretty much unaided so hopefully the sphincter is starting to mature, though I'm not holding out hope, due to DS1 still being on the meds now.

DS2's movement sensor has gone off in both of the last two nights - we now suspect that these incidents are linked to having a cold and a lot of mucus that he doesn't seem to deal with. Have given up mentioning it to my HV as she just wants me to switch off the monitor too. I shouldn't have to conceal the fact that I use it but am bored of being told off!

My friend with a (silent) refluxy baby (diagnosed initially by me, as the HV said just colic, and thank God for the family doctor we both see who listened to her when I made her take the baby to him), pointed me to an article in the Daily Mail about reflux - I'm so glad some more people might now have heard of it. I sound like some kind of medical evangelist when I hear the symptoms being listed by someone at a baby group and can't help but suggest it!!

Heloo.

Well, UAM - I'm crossing my fingers that you have a great holiday!

Bethylou - A friend of mine has just been asking me about reflux. Her DD is only on Gaviscon but is really bad! I've told her to go back to the GP ASAP!

Things are clamer here, less vomits as I am managing DS's feed differently. Less and often depending on the day!

Still no date for anything else but they want to check his eyes now too for Stickler Syndrome. Alll linked to his cleft and Pierre Robin sequence.

Ho hum!!

Sounds like you go from one thing to the next Mouseface, and currently, I have some inkling as to what that must feel like as we're battling to find out what's been wrong with DS1 for 9 weeks now (horribly pale, lethargic etc..). Have had some blood tests back which suggest allergy but more to come this week. Sure they won't show anything though as I think it is more likely to be an intolerance. Glad to hear that the vomiting is better though. I got through 13 bibs the other day and thought of you both on here!

Your friend will need to be quite persistent with the doctor, if they are not entirely on board. As far as I can tell, it is mainly due to a lack of understanding/knowledge rather than willingness to act. My GP was very relieved I think when I asked directly for the next medication that he should have suggested! I would love to really raise awareness of it amongst GPs and perhaps further to parents in baby magazines as it really does cause misery, and usually unnecessarily.

Bethylou

My friend's DD is on new meds so keeping my fingers crossed for them all. She said that she's like a new baby!!

DS has gone back off the boil again....... I'm exhausted. Sorry to hear that you are still going through so many bibs!

Yes, God, raising awareness at the front line - aka us - would be wonderful and very useful!! I'm with you all the way on that one!!

Glad the new meds are working for your friend's baby - it only takes a GP who listens and knows what they are on about!!

Sorry to hear that your DS has got worse again. Let's hope there's another respite round the corner.

DS1 is still well under the weather and DS2 is beginning to make orange marks on the carpet as he tries to get crawling whilst spreading puree vomit as he goes - lovely!! He's also waking every hour in the night at the mo so any campaign will have to wait till I feel in control again!

Hello

How is everything with you Bethylou and UAM? Any better?

Sorry to hear about the orange carpet Bethylou!!!! Did make me smile a bit though!

DS is still as bad as ever. In fact, the volumes have increased too.

Still no news on the ph study and if I'm honest, I don't think it will prove much anyway. I have a feeling that the next step will be an endoscopy! Yikes.

I just want him to not suffer anymore. It's so hard to watch. I'm tempted to try his meds again but DH doesn't think they'll work.

Anyway, we're off to Dorset for a few days next week. I'm dreading being at someone else's house with a puking DS. I hope they don't have carpet!!!!

Anyone have a magic wand?

Hi All - sorry I've not been back for a while. Things seemed to take a turn for the better these last few weeks and it sounds stupid and suspicious, but I didn't want to jinx anything !

Anyway, unfortunately we seem to have another downhill turn today, with vomiting up two times for no apparent reason and not just a little bit, but absolutely everything out of his stomach (sorry tmi).

I am soooo frustrated and upset. He really seemed to be improving and now I feel once again like we are back to square one .

Sorry to hear things don't seem to be any better for you, Mouseface.

Bethylou, was it a RAST test they did on your ds2? If so and that has come back positive, that indicates an allergy rather than an intolerance. I'd really advice you to get a referral to an allergy specialist in that case, as they really are worth their weight in gold.

OK, off to drown my sorrows at the bottom of a glass of wine. I just wish I had some answers as to what it is with ds2. He was doing so well and had even started to gain a bit of weight. I'm just hoping tomorrow will be a better day .

Hi,
I hope no-one minds me butting in.Your posts remind me of my son although he doesn't have SNs and has very mild problems compared to your dcs, but I would apprecaite your thoughs. I have a 2.11 ds, who had fairly impressive reflux that developed into dairy intolerance at a year. We have slowly reintroduced dairy in the last year and he can tolerate limited amounts of dairy but uncooked dairy still makes him vomit. The problem is he also sometimes vomits for no obvious reason. Like a lot of your children he often gags first.Sometimes we can stop him by getting him to swallow but I'm going to try the chin pressure especially as the indent between lip and chin is an acupressure point for gagging. He has had a barium swallow which was clear for reflux. The paediatrician and I both think there is probably a physical cause as he is much worse when he has a cold. My nephew had a problem with nocturnal vomiting which was cured by removing his adenoids. I have been offered antiemetics but refused as it is an unpredictable and random problem most of the time, unfortunately usually in restaurants or other peoples' homes! We are waiting to see ENT. Do any of you think I have missed anything?

MMM, your ds sounds a bit like my ds1 (who vomited regularly until he reached about 2.5, but much less regularly than ds2). DS1 also mainly did it when we were eating out and he has an egg allergy (amongst a whole list of others incl. nuts). I think most of what was making him vomit when we were out was "hidden" egg in a lot of foods. When we were at home, we would be careful not to give him eggs, but when out, even though we would check ingredients I think pubs and restaurants often don't think to check whether e.g. their sausages contain eggs. We got thick skins against the glowering, disgusted looks of other parents when it happened whilst we were out and it happens less now, though this could be because we go out for meals less due to ds2.

In your case could it be still related to his dairy allergy/intolerance? I know from ds2's dairy allergy that dairy is present in an enormous amount of foods you wouldn't expect (e.g. I found milk powder in stock cubes the other day!), so it might be that food prepared outside the home has more dairy in than others realise.

Thanks Unseen,
I know sometimes it has to be dietary but when it happens at home I know what he has had and it really is random. I suspect ENT may want to do endoscopy and having already held him down for the barium swallow it's really difficult to decide what to accept and what to pursue. I don't want him to have an anaesthetic but equally puking is not particularly sociable and his nursery are very good about it but school might be a different matter.

If it is any consolation, I was really scared about ds2 having an endoscopy, but the worst bit of it was seeing him going to sleep and the waiting whilst he came around after the anaesthetic.

It was good though to get some answers in terms of there being damage to his gut. It also helped in a strange way to see other parents with children with similar problems (not that I'd wish it on anyone).

BTW, what milk substitute does your ds have?

That's the great thing about Mumsnet there is usually someone else that is or has been in your situation.
At the moment we are getting away with lactose free milk which he is coping with, when things are bad soya and previously Pepti junior which he now won't touch.
I noticed you were avoiding a tonsillectomy for your ds2. How are things?

Frustrating at the moment. We thought we were getting on top of things. He had a few weeks where apart from whilst he had a cold, he seemed to have calmed down with his vomiting and we heaved a large sigh of relief. However, since yesterday the vomiting seems to have returned with a vengeance.

I'm not sure whether the tonsillectomy will really help ds2 (and I'm not sure the ENT guy was either, but he was willing to give it a go). DS2 doesn't really swallow solid food - he chews on it and spits it out, so even at 2.3 years, most of his meals are still puree'd to death. This is something which may be a result of his large tonsils and the ENT specialist said if we changed our minds with ds2's tonsils we could just book him in for the operation without seeing him again. I just don't want to put ds2 through surgery unless it really is the only option, which the medics seemed to agree with.

Interesting to read your comment about school though - this has been a worry of mine of late. Although ds2 is only 2 so school is a while away yet, if he won't eat voluntarily and he throws up constantly, and there has been no major improvement since he was a baby, what are the chances he will improve in the next 2 years before he starts school? and if he doesn't improve I don't know what we will do at that stage. It's all just so depressing.

Unseen,
I've just reread your posts and I'm just sitting here remembering when my ds had gastroenteritis that set off the intolerance in the first place. It only took a couple of days for him to realise if he ate or drank he was sick so he just refused everything, cue a really dehydrated baby and a hospital admission. It may be worsened by your ds' tonsils but equally I'm sure he has a good food adversion since that association will be there. I feel your pain!

MillyMollyMardy, thanks.

How's your ds?

Just running in to say that I'm sorry to see things are still bad for you.

MMM - we've had ever milk/feed and their variations that our health authority can provide. Nothing works for him.

I think that our next step will be an endoscopy too. DS has a very narrowed airway so I'm scared to death of yet another general. But, this is about making him better and giving a decent quality of life.

We've just been away. For 4 days. It was the same as being at home. Puking just the same as always. We can't go anywhere. Do anything, enjoy ourselves without worrying he'll puke. Poor little boy.

Let's hope that the powers that be do something sooner rather than later for us all.

Mouseface - I know what you mean about not being able to go anywhere, do anything without worrying about the vomiting. It's tough. I never would have thought it before having ds2 and I don't think people get it that haven't actually been in the situation themselves. It's constant and there is no such thing as "having time off".

At the moment we are just taking one day at a time and trying the best we can.

Sorry I've not been back for a while - we're not getting much sleep and have spent odd snatches on here trying to support the lady who has a very refluxy baby (I know Mouse has been brought in to see the thread too).

DS2 is in a good spell and I'm quietly hoping that the introduction of solids and the fact that he is desperately trying to crawl are all helping it to be a longer lasting good spell. I have learnt never to assume that it has gone but to make the most of these good patches.

Sorry to hear that your LOs are still suffering (with you alongside them). It has such an effect on the day for everyone doesn't it? I keep hearing myself saying to DS1, "Don't tread in the sick!" as he comes running in!! It'll definitely be a family memory!

Took DS2 to see the paediatrician today and actually saw the consultant, which was nice, rather than the slightly shit registrar we saw last time. The consultant has agreed to an overnight oxygen SATs study for DS2, with the acceptance that it may show nothing as his monitor only goes off intermittently here. As far as I can tell (as he wasn't overly forthcoming and DS2 was trying to beat me up at the time - sucking my chin etc..!!), it will be done at home by the community nursing team. My hope is that although the monitor only goes off from time to time (after 20 seconds of no movement), that there will be shorter ones recorded on the trace that show that I am not just a fussy/neurotic mother!

Hi MMM (and love the name!). Sorry to hear that you have cause to join us here, but it's definitely good to know you are not alone, in my opinion. The lactose intolerance thing actually sounds like my other DS(1) for whom we are currently trying to get things sorted. He is now officially anaemic but the RAST test came back negative so looking at intolerances instead. I personally think it's milk, after a gastro bug like MMM described. He has been referred to the dietician as he's now at the 90th for height but below the 50th for weight (and looks like death). One day I'll take the wrong child to the wrong appointment in my sleep-deprived state. For the last three days, both DSs have had temps of 39+ degrees too so life is as bonkers as ever!

Oh, Bethylou, it sounds like you are suffering!

Have you tried a milk-free diet for ds1 though? DS2 is now on calcium-enriched oat milk, which ds1 also drinks as I don't want him (ds1) splashing cows milk around. It tastes quite reasonable and could be worth trying for a couple of days with your ds1?

LOL though at the "Don't tread in the sick!" - it's a common cry in our house too.

DH kept walking past me yesterday saying has DS been sick in here and my response was no it was in the kitchen. Finally worked out the smell was from my leg
Things are a bit better with us after something Unseen said about hidden egg products, I had a chat with ds' nursery manager about being really careful with ds' diet. Unfortunately he's getting a cold which usually makes things worse....
Marvels about the fact I used to be squeamish about sick.

MMM I still am pretty phobic about people vomiting - I'm sure someone somewhere is trying to drag me out of it (as hypnotherapy has failed!) I do manage to deal with DS1 being sick even though he's now 2, but am in a constant state of 'fright or flight' when he has a tummy bug. DS2's baby sick is still okay at the mo but I don't know when that will change.

UAM we are beginning to go milk-free whilst waiting to see the dietician for full support. Because DS1 is only just maintaining his weight and is anaemic, I'm loathe to do it without advice for fear of making things worse not better.

DS2, meanwhile, has decided that he wants to sleep on his front. This is great from the point of view that he sleeps in a much more settled manner (and therefore so do we) but the problem at the mo is that he throws up much more frequently on his front. Consequently, he's now being sick before falling asleep and I have to try and change the sheet without him getting all hyper again just when he's calming down. Will try a layered system of muslins I think. These things are sent to try us .