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,
Someone's idea of a sick joke!
I saw a really good tip on MN about multiple layering of the bed/cot with waterproof sheets and sheets. So if one was sicked on you simply whip it and the waterproof sheet off and there is another beneath. This might help if the muslins aren't enough.
My dd has a bit of relux (5 months) and she has been much happier since she can turn over so I'm glad your ds2 is more comfortable.
The suggestion we had from the dietician was that a few weeks of low calcium intake wouldn't do much harm so you could trial a dairy free diet whilst you are waiting to be seen. It does sound like it's not all reflux.

I have begun the layering today, after a particularly sicky day (and Annabel Karmel's salmon and carrot with orange and cheese smells far worse on its reappearance than it does when you feed it to them the first time round!! Sorry if TMI!) Thanks for the tip MMM.

Did manage to take DS2 for a walk in the rucksack (with DS1 on his mini micro scooter) without getting vomit on my head which was a) risky but b) very satisfying! It will be a bit like playing Russian roulette with it for a while I think!! DH will have to take it in turns and see who is most unlucky!! I'm only amused by all this in the ast day or so cos I've had more sleep.

To be honest I don't like the sound of it predigested never mind second time around.

I saw on your other post that they are going to check out ds2's apnea, that's great news.

Thanks. I'm just waiting for a call from the dietician for DS1 and the community nurses for DS2 - sooo much waiting...

Bethylou, good luck. The NHS just seems to be one looooong waiting list!

Unseen there is a lady on allergies; Yellowbutterfly who I think has the same thing your ds2 has, she is looking for advice as they have only just been diagnosed. I hope you don't mind me telling her your ds has this too.
Anyway I hope all your ds are ok. My prophecy of lots of vomit with ds' cold has been over anticipated and things aren't too bad so far.

Good news MMM on the less vomity than you feared front. I always head for the wooden floor with DS2 when I've fed him first thing in the morning with a cold!

Letter from the dietician arrived yesterday giving us an appointment in 9 weeks' time. What a load of crap! I saw a paediatrician in 7 days with DS2! Will be on the phone on Tuesday morning to find out whether the GP can speed this up or whether we will have to pay to go privately. The thought of waiting another 9 weeks before we even try anything is mad. He's so pale and lethargic. I can't believe the GP didn't point out that this isn't a referral for a toddler who doesn't eat, but actually a toddler who is really unwell {sad}.

Poor DH was unhappy the letter arrived yesterday when I couldn't do anything about it till Tuesday cos he had to tolerate my cross mood! It just means more phone calls and more waiting. Sorry for the moan.

On a positive note, DS1's nose has stopped running non-stop and his inhaler dosages are now lower than they've been in 6 months. Maybe the lacto-free milk I've been using for a fortnight is helping?

MMM, I'll go over to allergies and take a look. Glad to hear that you are having an OK time of it so far. DS2 has been on a "bad" week this week, vomiting after being put to bed yesterday, which is always difficult to deal with as we usually heave a sigh of relief that he won't be sick any more once he has gone to bed .

bethylou, I know exactly your frustration with the long waiting times. When ds2 was classed as "failure to thrive" at 23 weeks it took 7 weeks before we could see a paediatrician . He had already at that point not gained weight for 8 weeks. Don't you just love the NHS?

Sounds like the lacto-free milk is helping though, so that's great.

Hey ladies.

Quick update..... still no date for a ph study, doc has had DS's file on his desk for over 3 weeks according to his secretary.

DS has reduced his puking in frequency but not volume. Still vomiting his whole feed back at times.

Stopped sleeping too.

Mouseface
Can you write a letter to the consultant reiterating your poor ds's symptoms to shamehurry them along?

His CCN called last week to say that this isn't acceptable. Still no appointment or letter.

So, he's 'in the system' and we just have to wait. I'm used to waiting. It's all we've done. From day one.

No magic wands on the NHS.

Mouse it's nice to see you can be philosphical. We've been waiting since April to see ENT and have an appointment for October.

Mouseface I feel another campaign is required! Our GP has at least said he will try and hurry the dietician along and seemed surprised at the length of the wait. Whether it will work or not is another matter.. With you on the lack of sleep. I managed 4 hours last night and DS1 has had a very grumpy mummy today .

Hoorah!!!

We have a potential date for the ph study...... 14 sept.

I say provisional because they want to admit him but his Cons Paed said better to do it at home. Mainly because of my disablity (I struggle to be on my own with him all day, lifting etc) and also so that he is in his own surroundings. Not cooped up in a cubicle all day and night!!

We'll see. His nurse is back tomorrow so she'll fight my corner. God, I love that woman.

Hope that you are all ok? As okay as any of us can be!!

www.google.com

adsfasdf

too!

Mouse excellent news about the 'possibly getting the test done' - what our lives have come to!

I got a date through for the dietician for DS1 for 9th Novemeber - 10 weeks further on from arrival of the letter. After another 3 phone calls that I hadn't really got time or energy to make, I have had it brought forward to September 28th!

As for DS2, teething=increased vomiting, or so it would seem. It's either that or the new baby breakfast porridge I was trying with him (and very quickly stopped trying after 4 cot-loads of sick in two mornings!)

Hope all is well.

By the way... we're off on holiday next week. Can you veterans of puke tell me any tips on avoiding ruining the carpets in the cottage we are hiring? Have obviously said we'll take our own cleaning kit and cot so that we don'tr leave a lasting mark. Do I need to take a load of washable picnic blankets? Any better ideas? Anything else I haven't thought of?

Just to update you lovely ladies...... DS has actually reduced puking massively. We now have three puke three days a week, four if we are very lucky!!

No idea why, no meds, nothing has changed!

It's just like a magic wand has been waved!

Anyway, we're leaving the pH study for now. Just to see what happens. It's still awful when he is sick but nowhere near as often.

Hi Mouseface that sounds very positive and long may it last. Hope you touched lots of wood after writing it!!

DS2 has taken on the baton from your DS though. He was sick 3 times a day 'properly' in the 9 days before our holiday. He did it for the last time literally as we left the house for the holiday. Since then, he's only done it twice on holiday. Don't know if it was all teething and associated-cold related or not. It's all so much about guesswork isn't it? I rang the GP in desperation before we left adn got permission to up his meds so maybe that's what worked. All I know is that the vomit (and therefore stress) has reduced and that I only had to scrub the cottage carpet once!! We have also been getting more sleep, which may also be reflux-related I think.

We had the overnight oxygen monitoring just before we went away too. This showed 18 desats during the night (when DS2 was full of cold) but only down to 92 percent at one point. Because of this, the paediatrician has decided that he does not need to do anything else. The nurse who came out to us asked if we'd had all the usual cardiac tests done (er, no, none..) and was keen to repeat the overnight study but could not persuade the paediatrician. I will be returning to the GP for a discussion once I have got through the post holiday sort-out! The paediatrician told the nurse that we might all have apnoeic episodes that we don't know about because we aren't monitored and that he doesn't know what is normal for a 'normal' baby, hence no need to investigate further. I can only assume he doesn't have kids himself...

Bethylou

So sorry that things are no better for you!

DS has a heart condition so used to de-sat to 60 on very bad days. He spent the first 6 months of his life on a sats monitor.

92 would have been great for him before he had open heart surgery!!

The Paed is right to be fair but it doesn't stop you worrying so I'd ask for the test to be repeated and if he continues to de-sat, then he needs more investigations.

I love the way they come out with such gems like that!!

Thanks Mouse. Sounds like you have really been through the mill with your DS. I hope he continues to make progress and that the current peaceful interlude is a lasting one.

If the paed could say this IS normal for a 'normal' baby, I'd go away happy. It's the fact that he doesn't know what normal is but has made assumptions that worries me more. Anyway, may get to see the GP tomorrow if both DSs happen to be happy for me to phone at 8a.m!

I thought I should check back on everyone. The puking seems to be improved all round(hastily touches wood). My ds has been pretty good lately and he did his own controlled dairy tolerance test yesterday by raiding the fridge. We are seeing ENT next week so will see what they say.
Wishing you all clean carpets.

Hey all.

Well, we had over two weeks straight without any puking!

And then DS was sick for four days on the run.

Here we go again?

I hope not. We are at the Gastro Consultant on Thursday morning. I will let you all know what he says.

Who knows.... he may have a new supply of magic wands.

Hope you are all getting a break from the joys of continuous reflux and vomiting.