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?

Update - Gastrostomy is on the cards in 6 months to replace his NG. He still has severe reflux and has been put back on Domperindone.

Hope you are all surviving!

Do they think the NG is contributing to the reflux or are they after a longer term solution? I hope they can minimise the vomiting as your poor ds sounds so distressed by it.
Our ENT appointment was cancelled so no update for us, except dd who is slightly refluxy has had a stinker of a cold and has excelled herself and scored a gold for projectile vomiting.

MMM the cold will exaserbate her reflux big time!!! DS is the same. Always worse when he has a cold.

The NG is making his Sensory Feeding Disorder worse. He will be tube fed for a long time. He has lots of underlying conditions which all add up to this.

Just having a hell of a time again after thinking that this was kinda done and dusted.

Sorry your appt has been cancelled. We are back at the Paed next week.

Will update again.

Dashing in to send Mouse some hugs and MMM some sympathy for the extra vomit - we get the same here with colds. Tonight I mastered the art of bending back a bit with DS2 on my shoulder so that the vomit missed me and only got the -machine washable-rug!!!

Unfortunately I have yet to learn vomit dodging.. just about to go out for dinner at the weekend, I was reading ds a story and dh putting dd to bed and I hear a "help" dd has managed to puke up the wall,on the carpet and into a box, I kindly take her from him only to be hit on every item of clothing I was wearing. I had to wear my jeans to the restaurant.

Noooo! That sounds rubbish MMM! It keeps making me late cos, even though I try and leave extra time, he always does it just as we're going out!!

Ahh... the bizarre talent children have to expel bodily fluids from one or other orifice just when you are about to walk out of the door/make an important phone call/wearing something that is dryclean only or a friend who has yet to experience the joys of motherhood arrives.

Quick update - (Mouseface BTW)

Same shite, different day and now we have NO support whatsoever. Cons Paed, see him in a year, Comm Paed, 6 months, Gastro Cons, 6 months......

Hope you are all getting through the day and once your DCs are alseep and resting, they make you smile.

Like the new name Mouse. Hope tomorrow will seem brighter.

We had a sicky day today after a few better days. The lounge carpet is now an embarrassment! DH and DS1 now both lactose-free and DH much reduced gluten/wheat etc.. All seems to be having a good effect, apart from on me - stressed from having to invent/prepare a whole new load of meals for the family and exhausted (but happy!) from chasing after crazy, now-thriving DS1 who has ever-ready batteries for the first time in 5 months!!

Oh Mouse. That's rubbish. Is your ds seen in a Children's hospital?

Bethy - sounds like an improvement? Long may it last.

MMM - yep, BCH but NOT for his reflux. It has always been classed as untreatable as no meds have ever worked on him so we are yet again, left to it. He is seen locally for his GORD though, always has been.

I am pulling what little hair I have out today.

I think it's time I made a phone call and got my shouty mummy pants on.......

Shouty sounds good. I'm not sure how it works but don't see why you shouldn't be able to ask for a referral to a national specialist, there must be someone with an interest in severe reflux which is not helped by the available medication. I think I'd find one via the power of Mumsnet or looking for research papers and Googling the authors, then demand my GP referred my ds. If they said no a long letter of complaint to PALS. I apologise if you have already tried this but things sound like they suck.

I second the shouty mummy plan. It's the only way I've got anywhere with DS1 in the last few months but have still to win my battle for DS2. I can't help but think that we shouldn't have to battle - but thinking that through is too depressing. Sounds like MMM has some good ideas for you. I hope you don't mind me suggesting that I think the GP/consultant and anybody else who dismisses the problems we face should be left with our DCs just long enough to have a permanent sicky odour up their noses and stains on their carpets/clothes etc.. After an hour or so of the associated screams (child and parents) and watching helplessly as the DCs are clearly in pain, maybe they would take us a little more seriously. I really do intend to try and do something about all this once I can see the wood for the trees. I'm not there yet but I fully intend to see it through in the end. Go Mouse! We are with you in spirit.

Thank you guys......

We have gone right back to the start! I can't believe it. DS did 4 weeks of no reflux at all and a couple more of reduced vomits and now it's back.

I just don't get it!!? And the thing that get's me is his Cons Paed said 'well, at least we know that he can stop vomiting'

Which makes me think that I may have a struggle with him. So Gastro Cons is going to be the way forward I think.

Hope today is better for you all. [hsmile]

It's such a bizarre condition isn't it Mouse? I know how you feel when you can't get through to the medical staff and how worn out you must feel. Keep taking one day at a time. Thinking of you.

Well, I have finally caved. I can't stand poor DS suffering anymore so I did my best 'we need help and now please' sob on the phone to his CCN.

DS is going to be admitted for a pH study this or next week and then, as long as they can 'confirm GORD aka reflux', he will be put on mega meds to try and 'manage' it.

If the meds don't work, they will then do an endoscopy and a Findoplication.

If it is NOT confirmed as GORD, they will do the Fundoplication to prevent him vomting. And as gastrostomy.

So, that's where we are up to. And as it stands, he has no quality of life, can't go out, to playgroups, nursery etc because he is either vomiting or having his feeds replaced. So enough is enough.

So shouty mummy or should that be weepy works! I know you don't want a fundoplication but at least you will have an absolute diagnosis and there is a lot to be said for an improved quality of life for ds and for you. Please let us know how things are going.
I got told by ENT doc yesterday that she wasn't convinced that adenoids or tonsils could cause vomiting and was I aware that a tonsillectomy was a major operation. I very politely pointed out that we had excluded all the other physical causes, it wasn't behavioural and I didn't want ds on antiemetics. We have agreed to see how he goes over the next few months and review. He seems a lot better but cold season is upon us.

Mouse that's not caving, that's doing what's right for your DS and you. Sometimes watchful waiting is right and sometimes you just have to say enough is enough and try something esle. Thinking of you and waiting for news.

DS2 appears to be teething again here so I hope we are not in for more vomit on the scale we got last time round. He's just started on Lanzaprozole instead of omeprazole (a cost issue, not a medical one [grr]) so am waiting to see what it does (apart from constipate him as any new drug does ititially..)

MMM Gggrrr.. to the irritating docs!!

bethylou - WTF?? Why is it a cost issue? That is ridiculous! Surely it's about the right medication for him, not the at the right price.

Nemo has been on both but got on better with Omeprazole. I hope DS2 is ok. Bless him.

MMM - my sister's DS has always had issues with his tonsils, and they just kept putting him on antibiotics.

Guess what? Turns out that they have actually been missing silent reflux for 2 years!!!

Poor little mite has been vomiting more lately, and has damage to his oesophagus. So he is now on Lanzaprozole and Infant Gaviscon.

She had been taking him back and forth over and over, but because his tonsils and throat were swollen, they kept saying his tonsils needed to come out and ignored his weight loss and loss of appetite.

We chatted and I said to her about silent reflux. She looked it up and lo and behold, his symptoms were spot on! So she took him back, got referred to a Cons Paed and he confirmed!!

Just goes to show, if you stand your ground, sometimes you get what you want/need!!

Still waiting to really decide which drug is better. The constipation has been worse than ever though. Liquid omeprazole was costing the surgery £300 for 75ml so I could see that it could be a problem. The dispersable tablets made DS2 gag everyday which is why I asked for the liquid because we don't need extra opportunities for DS2 to gag! The GP did say we'd have a rethink if the lanzaprozole doesn't work out. He has been a bit more sick but then he is teething. Who knows.

DS1 on the other hand has had a lot of burps recently and tonight actually produced such a sicky burp that it landed on his pyjamas. I'm wondering whether he has gained weight since starting his new diet and that his ranitidine dose might need increasing. Another thing to sort out...

Not sure if I mentioned Mouse about S1's night coughing? We treated it as asthma for a year with really high doses of inhalers to try and manage it. Upped the ranitidine to the correct dose for his weight and "Voila!" the cough is no more. Wish someone had suggested that earlier!

Bethylou - That's awful re the cost of the Omeprazole suspension! I really don't see how the cost to the surgery v's the cost to your child's health can be compared.

Anyway, I'll get off my soap box. I hope the Lanzaprozole works. That is one thing that I found with DS's meds...... the weight and the correct dose for his weight was never checked as he grew.

We are STILL waiting to hear if he can go in this week for the tests. Otherwise we will have to wait 3 weeks for the doc to get back from yet another holiday, and then at least another 4-8 weeks for him to be able to see us.

I refuse to put him through the vomiting anymore. I have started to chase him directly! It's just not on.

I hope that you have a better week. xx

I also think that chasing things yourself is far more effective than expeting other people to do it. I am past caring whether I am getting a name for myself in the process, as I just want what's best for my boys -as I'm sure we all do as mummies! Let's hope that your DS can go in and get it sorted Mouse. Good luck!

Thanks. x

Bethylou, ah I remember the noctural cough, the writhing in his sleep. The GP saying but if he's not sick he can't have reflux.
I find it really exhausting having to disagree with doctors. I'm in the medical profession and if I don't know something will look into it or refer. But when I think about it every time I've taken ds to the gp with anything major I've been told it can't be, so then I ask to be referred, see the consultant (lovely man) who then agrees with me. The whole process is so wearing.
Mouse, the chasing will be worth it, just make sure you have the direct dial numbers for those secretaries and clinic clerks and keep calling.

Hello all.

Well, after all of my chasing and calling we hit a big fat NO for getting the pH study done before DS's Gastro Cons went off for yet another 3 week holiday.

So, he decided to keep me sweet by wacking DS on a load of meds that may or may not work. We have been down this route before and none of the meds gave any respite from the vomiting at all.

DS is now on Lanzoperazole 10ml/10mg 1 x daily, Metoclopramide (anti sick med) 1mg/1ml, 1ml 3 x daily, Gaviscon Infant 2 doses in each feed and Domperidone 1mg/1ml 4ml 3 x daily.

He has been booked onto the ward for December 6/7th for his pH study. I just hope that all the meds do actually work for him.

How are all of you? MMM? Bethylou? UAM? How are things?