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?

bethylou, it all sounds so familiar. We tried omeprazole, but it made ds2 worse (a couple of the side effects are projectile vomiting and diarrhoea ), so we stopped that. He has been on gaviscon since being about 8 months and although that doesn't solve the problem, we do see that he is much worse whenever we run out. We were prescribed domperidone but tbh we didn't try it as I am concerned that the paed is trying to medicate the symptoms rather than looking for a cause.

I'm absolutely in agreement with Mouseface that you need to make a fuss in order to get the doctors and so on to take notice and do something.

I'll keep checking back to see how you're both doing (and almost certainly vent my own frustrations).

UAM and bethylou.

On Tuesday, the cons paed took DS off all meds. Since then, he has hardly puked and when he has, the volumes have been so much less....

Do you think there is a link??? The hospital called this morning to ask me to take him in for obs, I said no. Talk to his CCN and come back to me.

I'm hoping that I won't need to take him at all if this continues......

I swear, if it turns out to be just his meds that have caused this for the last year, I will go mental!!!! At no time did anyone tell me about side effects and we've never had any literature on them either.

DH is livid but let's see.

This could all be a fluke.

Wow! Hope the upturn is lasting, even though it would be very frustrating Mouseface. Hey, you'd take it though wouldn't you?!

The Domperidone has not worked today but as it came with no instructions except to give 1.6ml 3x a day (when DS still has 5 feeds?) I'm not sure if we are supposed to give it a while before a feed or directly before. Either way, once again, DS2 responded well to it for 24-48 hours and then overrode it again!

UAM I will go back to the GP this week (as DS1 has been ill since the paed appointment we've kind of stalled for 2 weeks) and ask for a referral to Birmingham where they have specialist paed gastro types. GP said last time that he would refer us if we weren't satisfied with the outcome from the local paeds so I shall ask him to keep to his word. He really is very good and I am so lucky to have him as our GP.

Off to a wedding tomorrow and have packed spare clothes for DS2 and me - I have learnt in the last few weeks that it is usually me that needs the spares, not just him! I have packed 7 bibs and I'm still not convinced it will be enough!! Have a lovely weekend.

Bethylou - nope. All my hoping that we'd turned a corner was for nothing. DS has had a God awful day.

Lost 180mls of his first feed, 70mls of this afternoons. That's so far.

Re the Domp - just spread it out as evenly as you can. It helps the tummy to empty, kind of pushes the feed along to make room for more IYKWIM, so there isn't a good or bad time to take it.

I'm so sorry DS2 isn't responding but it does take about a week or so to get into the system properly.....

Yes, you must go back to your GP. They may want to do a barium meal to see if there is anything mechanical going on or a PH test to check the acid levels in her tummy. Make sure you don't leave until you feel there is a solid plan in place.

Hope the wedding was ok and not too traumatic re the vomiting. I always find people are very keen to help when we go anywhere.

Mouseface, to hear that you had such an awful day yesterday. I know how disheartening it can be when you think/hope you've finally turned a corner, only to have a truly awful day when absolutely nothing stays in.

I hope yesterday was just a bad blip.

I thought we were doing OK today and then ds2 has just puked up all 4 oz of his last feed (over an hour after he'd had it). It's so frustrating especially when we have not a clue what is causing it.

Snap.

DS brought the 40mls I'd replaced over an hour ago back, just before putting him for his nap.

I am and that this is still happening. Last night was awful too. He puked in his sleep! Luckily, I've kept him in with us and now I know why.

Anyway, I am sorry that you are going through such a rubbish time too.

I spoke to DS's nurse earlier and she's going to start making noise today so I'm hoping that someone will come up with something soon.

Take care. x

Hi both. Some days it really does feel rubbish doesn't it? Sorry to hear that the good day didn't repeat. I have to say, today has been a really good day here and makes all the difference to my mood. I'm not sure if I've actually said that I have a phobia of vomiting?! It's as if someone somewhere is having a good laugh at my expense!!

The wedding was pretty good - we only got through 5 of the bibs but was a little awkward as DH spent most of the day at home with DS1 who was still under the weather. This meant that I had no-one to hold DS2 when I needed the loo etc.. I didn't want to pass him to anyone else in their wedding finery for fear that they might expect me to pay their dry cleaning bills!!

It was also an outside wedding without any shade so I spent the whole time trying to keep DS2 pretty much on the grass in the shade from the table or in the buggy. Hard work, not helped by discovering my back windscreen had been smashed overnight before we even started the day!

Then at 12:30a.m., after allowing the dream feed to settle for over an hour, DH put DS2 into the cot and he promptly deposited the whole lot onto our bedroom carpet from the cot - it really shocked DH! This obviously prompted a load of carpet cleaning, baby changing, bed changing etc... which was not conducive to a good night's sleep! He was asleep when he did it and made no other noise so another good reason to keep him in the room with us for the time being.

Can I just ask how you know how much has come back when your DCs are sick? The paediatrician asked us the other week and I looked at her a bit blankly. I could only really answer in terms of mouthfuls/bibs we get through.

Have moved from muslins to towelling squares though as I have found them much more absorbant and is saving some of my clothes/carpets, at least when not projectile! I think there is a gap in the market for a reflux-related product website. e.g. we are still using baby bibs all day long but DS2 is so big (amazingly really) that they barely do up round his neck now. I also found it hard to find the towelling squares and have a friend with a similar issue who would like a waterproof cover for the DS's car seat. I'm sure these things all exist but would be great to save us mums who are constantly washing/scrubbing etc.. time by selling them in one place to save the research!

Sorry for the brain dump - has been a busy few days since I last posted!

Sorry to hijack this thread but I do have a reflux-related product website Bethylou - but I dont' have the products for sale that you mentioned. www.sootheyourbaby.com I set it up to help parents so I'm going to look into the products that you mention. For now though, I know that Drybibs do an extra large bib but I'm not sure how absorbant they are - are you using toweling bibs at present? There is a waterproof car seat cover - I notice that www.pollywogbaby.com are selling them for $10 at the moment so it shouldn't be too expensive for your friend to get one sent over from there. The towelling squares you mentioned - where do you get those at present? Ladies, come to think of it, would you consider emailing me at [email protected] with your suggestions for products that would be helpful. Both my children had reflux but grew out of it at around 11 months so I don't know much about the needs of parents with babies over 1. Again sorry to hijack this thread. I really DO hope you get the answers you need very soon.

I've just seen that www.easynappies.co.uk do lots of extra large Bandana bibs but perhaps they wouldn't be long enough?

Bethylou - sounds like you had fun at the wedding and your poor car!! God, like you don't have enough going on. I hate things like that. It's just awful. Sorry to hear about the night vomit. That's exactly why DS is still in with us. Choking hazzard.

Re the 'how do I know how much DS loses' - I catch it in a bowl (when possible) and meassure it as I got sick and tired of DSs Consultant Paed telling me that he could only lose around 20mls, max! Yeah, right!!! He should try doing a day in my bloomin' shoes.

Anyway, I catch it then meassure it and I'm keeping a fluids chart now. I gave CP one last time we went. We are also going to video DS vomiting as again, CP is struggling to believe the distress I say this causes him. I'm trying not to get angry with this man.........

So, I guess the towelling squares are like terry nappies? Much more absorbent and a great idea! Not sure where you get bigger bibs from but SuperAmoo seems to have some suggestions?

When are you due to go back and see anyone? How are you holding up?

Superamoo will be heading over to your site to see what you already do and to offer any further suggestions. I might not end up buying them all, but it might help others in the future. Will let my friend know about the car seat cover once she's back from holiday. I spotted the towelling squares (yes, sold as towelling nappies) in Boots the other day. Mothercare used to stock them but don't at the mo and it's taken me this long to find a different source!

I went to the GP today now that DS1 seems (fingers crossed) to be better. I explained about the way we were treated by the registrar who saw us at the hospital for DS2's reflux. He was most apologetic 'on behalf of the NHS', as he put it, and said that he believes us. (I had to restrain myself from kissing the poor man!!)

He suggested that we should have asked the registrar to bring in the consultant as we had a right to a second opinion. He offered to either re-refer us to another local hospital or agree to us going privately (as he has to send a letter etc..) We decided that as we have just spent £3000 on new windows, the best thing to do was to pay the £100-200 to see a consultant paed in the next week at the private hospital as it is DS2's health we are talking about (and our stress). I was surprised that the GP was pretty much pushing this option but feel pleased that we have made a decision. Let's see what happens next.. I know that babies are supposed to grow out of reflux, but as DS1 still has it at 2.2 years, I don't want to assume that DS2 will do so and that my problems will all magically disappear when he reaches the age of 1! I do like to have a plan! I've detailed all this in case either of you haven't considered these options (if they are open to you financially - and I appreciate that some people would have a problem with us going private anyway - let's not get into a debate about that one).

As for today, went for DS1's jabs at 3pm and back to GP in same building at 4.30pm. In that time, I fed DS2 and then ended up with all three of us going back in different clothes as DS2 was sick on himself and me (despite the towelling squares!) and DS1 wet himself!! I don't think the receptionist noticed!

bethylou, at least it sounds positive that you are getting attention and formulating a plan. (This is something that frustrates me immensely - the docs just seem to want to "wait and see" constantly).

What worries me is that my father has long-term health problems caused by reflux (in adulthood) and I worry that ds2 is being set up for the same problems as he gets older.

Anyway, we have the gastro appointment tomorrow, I'll let you know how it goes.

Great to hear you've found a sympathetic doctor Bethylou - that makes SUCH a difference doesn't it.

Bethylou - your plan sounds grand!! I hope the consultant can help or at least get his own idea of what needs to be done and act on it........

I, for one, would not disaprove of you paying to see an expert!! After all, who else is going to help?

UAM - good luck today, update the thread please if you get chance, I'd love to know what they say and hope it's positive. I hope you get a sympathetic gastro doc too. Sorry about your dad. That must add to your worries for DS2......

We've got the vidoe camera now, all up and running to film a feed/behaviour after/vomit etc...... we had the night from hell again last night. DS is just not settling because he feels sick.

Hi All.

Back from the gastroenterologist. He agreed with dp to carry out an endoscopy to see whether there is anything wrong internally with ds2. I'm not so sure, as it seems so invasive. I think they are also missing the point that ds2 did not have a single problem with vomitting until after he was weaned onto solid food and hypoallergenic formula was introduced. When he was exclusively breastfed, he had no problems whatsoever. It therefore worrries me regarding putting ds2 through such an invasive procedure and it's just so difficult to know what to do for the best.

That said, he vomitted twice at the hospital before the appointment, which obviously isn't normal either . Arrrgggghhh. His height and his weight have also been dropping down too since he was last measured. He's now on the 2nd centile for height (from the 9th) and on the 0.4th centile for weight (after having slowly climbed up to the 2nd). I know that if the vomitting would be sorted out, his weight would probably correct itself, but sometimes it just really feels like I'm failing as a mother as I can't even get him fed and growing normally. This should be just a basic.

Sorry, I'm just feeling a bit down about it all toady .

Oh honey.....

What a rubbish time your having, so sorry I didn't see your post yesterday - we have builders and they are useless so I'm caring for them too!

I agree that sounds invasive given that it appears to be a reaction to food/certain foods? Have they done a barium swallow? Or any allergy tests?

I'm sorry you're so down..... and worried about his weight.

They have mentioned an endoscopy for DS but he is a grade 4 intubation and has a very narrow airway so they don't want to do this unless they absolutely have to - too much risk.

I don't know what to say except keep posting here and let it out!!!! Has this decision caused friction with DP? He's wants it, you don't? When has it been planned for and where will it be done?

Stay strong. xx

They did a barium swallow and didn't find anything wrong there, but they only tried it with fairly runny food (soya yoghurt etc) and I think he has a problem with swallowing more "solid" food. He's had some allergy tests and we know he has quite a severe reaction to cows milk, but the limited other tests he's had done came back negative and we don't yet give him nuts (his brother is allergic). Rationally I know it's probably the only sensible way forward, but the idea of doing something so invasive worries me. So, it does cause some friction with dp who wants it done, and me who is really torn between on one hand thinking it's probably for the best and on the other, I just want to protect him from yet more tests. it feels a bit like treating him as a lab rat IFSWIM.

It's booked in for saturday already at a large university hospital close to us (rather not say exactly which one). It is a good hospital though, but still. They warned that putting him under general anaesthetic would be upsetting .

Have fun keeping your builders in line, though!

Sorry UAM I also have builders in who seem to need me to project manage them - they're only building a porch for heaven's sake! Anyway, also didn't get on till too late to formulate a reply. Sorry to hear that you and DP are not entirely in agreement about the next step. It's so tricky isn't it to know what to do? I will think of you when we go to see the consultant on Saturday and hope that the day is good for both our DCs.

I am merrily burying my head in the sand (and trying to limp along with the breastfeeding - tried formula this a.m, having got my head round it, and DS2 turned his nose up so I'm now in the situation that I can't get enough milk in to him from me but that he won't take formula either. May have to try a different type) and hoping that DS2 will grow out of it. We've had a very good couple of days with the vomiting and am waiting for a backlash! It's been nice to have a respite though!

While I would never wish people to have the same issues that we all have, it's so nice to come on here and realise that other people understand. I'm amazed we haven't been joined by others really. Think I will have to do housework tomorrow night so will hopefully catch up on Saturday. Good luck UAM.

Bethylou, good luck with your appointment.

I distinctly remember what it is like to start finding that breastmilk supply is going down, whilst having not convinced dc to take anything else. If it helps, I found that although I really wanted to start weaning ds2 off the breast at about 5 months or so (in preparation for going back to work at 6), after a couple of months of trying unsuccessfully though it was proving so stressful for both of us that I just gave up trying and decided to carry on bf for a while longer. I admit though, he was about 7-8 months and onto (some) solids by the time I gave up trying with the formula though.

btw, have the docs checked out allergies with your dc's. I ask as ds1 had regular unexplained vomiting (not nearly so bad as ds2), until we discovered that he was allergic to a number of things. Now he is absolutely fine. DS2 also has milk allergy, which might be part of the problem for us (though I think not all of it).

Anyway, good luck with the appointment. Here's hoping that some time soon all of us have lovely, giggly, non-sicky babies at last .

Oh unseen -- poor you! And of course poor DS.

A few months ago, after DS (2.3) was finally thriving, he started vomiting again. Of course this started the day after his review with the Gastro consultant. Anyway, Gastro suggested it could be soya, and only then told me that soya allergies/intolerances can be as bad, if not worse than CMP intolerances . Anyway, took it out of his diet, and after about 2 weeks, he had more energy, and the mil has said she can't babysit him anymore because he's too energetic

Also seem to recall there being some research about beef and CMP?

Good luck for Saturday. If you can exclude things like obstructions etc, then it would be diet related?

Thanks ilove. We've tried ds2 without soya for a couple of months now and although he seemed to improve at first (he put on 0.5 kg in a month ), he now seems to be pretty much back to how he was before. A gastro friend suggested coelic, but tbh I don't see any other symptoms to go with this. At least though the endoscopy and biopsies they will take should confirm (or otherwise) that.

I do still have a suspicion that it is all diet-related though in our case (though to what I don't know - it feels at times like we are an almost hypoallergenic house!).

I'm pleased to hear your ds has improved after removing soya, though it's a tough one to eliminate completely! It just seems to be added to everything.

CMP allergy very often occurs with soya protein intolerance and just a trace of it used to make my DD1 sick so I think it's worth avoiding. We didn't find it hard to avoid - I could give you some tips on foods without soya if it would help?? I would definetly do a trial of no gluten grains as well. My DD1 was intolerant to cows milk proteins and soya proteins and all gluten proteins. It wasn't as bad as it sounds - she just ate rice crackers and lots of potatoes, and hula hoops, rice-based gluten-free cereal instead. It really wasn't that bad. Her tolerance of these things is LOADS better now - she's 4.5, but like I said, when she was younger, the mere trace of these things would effect her. I would try a very restricted diet for a couple of weeks to see what happens.
BETHYLOU I would definitely 'limp on' with the breastfeeding - you are absolutely doing the best possible thing for your little one. I had to eliminate all the above proteins to breastfeed DD2 until recently - all milk proteins, gluten and soya - again it wasn't that bad and it was worth it. Re milk supply decreasing - does your little one feed at night? - if your supply is going down, introducing a night feed will help build it up again.

UAM - Be brave tomorrow. It's extremely hard to watch your child be put to sleep. The anaesthetic and waking him after will most likely take longer than the procedure itself.

Stay in the hospital but go and get a coffee. Don't wait near theatre as you'll see other very distraught and upset parents and that will make you worse!

He'll be back in your arms before you know it and they might well call you to go and be with him in recovery or you could ask?

Once this is done, you can tick that box. Hopefully, as you and I both suspect, this is a diet/food issue and not a mechanical one.

I'll be thinking of you tomorrow. xx

Bethylou - I hope your consultant appointment goes well tomorrow, please update and let everyone know what they say! Re the bfing, have you tried combing your bmilk with some formula so that DS gets a 'familiar' taste?

Are you using SMA? Apparently, it's a sweeter taste than Aptamil (closest one to bmilk, or so they say) and they take to it better. If so, ignore that!!!!! They sell formula ready made at supermarkets in cartons for around 60p. Is it worth getting one of each make to try him on?

Also, it's me with the bloomin builders, not UAM. I have a bit of a break from them today, only the one chap is here. They are driving me mad though. Another 5 weeks of this, along with a very pukey and unhappy DS!!

We're at BCH on Wednesday for his cleft palate so I'm going to see if they can help with this awful, continuing vomiting. I'm exhausted with it all, I really am.

Anyway, good luck Bethylou and UAM for tomorrow!! xx

What was so confusing was that it was soya lethicin in bread that made us realize about the soya allergy.

Unseen best of luck tomorrow. Will be thinking of you, and hope they don't find anything...

Thanks all. I'm getting really nervous now. On one hand, it's wonderful if they don't find anything, on the other, if they do at least we will start getting some answers.

I suppose that (at least according to my gastro friend) they will be able to see from the endoscopy whether the problem is allergy related as it leaves characteristic marks in the GI tract. So either way, we will know. I am terrified of putting my beautiful baby under general anaesthetic though.