Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

Hey everyone.....think this thread has helped me greatly....however my dh says it's made me paranoid!! Ha. My ds has been diagnosed with reflux and is showing many of the symptoms listed. He has been prescribed gaviscon, which has made things a little better. He is still really suffering from bad bad bottom wind....which makes him scream in agony before he trumps. Is this a symptom too?! It wakes him up it's so bad. Also feeding habits have changed completely and he now wants tiny bits if milk all the time. Just wondering if this could be making the problem worse as he is unable to digest his last lot if milk before wanting more?!
I'm a little confused at the mo.....but am just trying to get on with things as best I can.
Big hugs to all reflux mums.xxx

I'm totally losing the plot here.

After paeds said he doesn't have reflux and I'm overfeeding him, I've continued with the gaviscon as a half dose (1/2 sachet per bottle) which has less effect but not much less effect in terms of the playdough poo. So I've now tried sharing a sachet out between 3 bottles which has no effect at all.

This morning has been an unmitigated disaster. He's started puking again during feeds as well as some time after so now my carpet, 2 tops, 1 pair of jeans, 1 boot (!), four sleepsuits and innumerable bibs and muslins are awaiting washing. Oh, and a bra cos he was sick inside it. And it's not even lunchtime yet. I can't physically keep up with the washing. Oh yes, I forgot to mention the sheets on my bed are soaked too. And then the drs always say - it can't be that much, it always looks more than it really is

He's also started fussing through a feed. Just now he was pulling off every 30 seconds or so and crying but then going at it again like he was starving only to pull off again straight away.

I'm sick (scuse the pun) and tired of it all. I know it's not been going on long but as he's not FTT they're not interested in treating with anything other than gaviscon so I know this is going to be my life for the next few months.

I stink of vomit (so does ds, even after a bath there's a lingering aroma), the house reeks. I look like a bag lady and live in a cess pit.

Got to go now. He's crying again.

buttonmoon sorry to hear you are having such a tough time . I found one of the worst things was trying to get the GPs or someone to listen. I would push as hard as you possibly can for a referral to a gastro paed. Is there any chance you could go private for the initial appointment? Where are you based? If near London I would whole heartedly recommend Dr lindley at GOSH. I was getting nowhere with a referral everytime i asked gp so I called Dr Lindleys secretay made an appointment and then got my gp surgery to fax across a referral (I didn't even see my gp- just told the receptionist on phone that a referral had to be faxed across asap). I appreciate i was lucky that we could go private. Your baby should not be suffering and you are simply getting fobbed off- it makes me so angry on your behalf how dare drs think it's ok to let a baby suffer.
I know it's been said numerous times on this thread but reflux and cows milk protein intolerance often go hand in hand. I think you said you are ff...? If so it may be worth trying a hydrolised formula such as nutramigen. If your gp won't prescribed then you can buy it over the counter at pharmacy (about £14 for a tin). They may have to order it in which takes about a day. If you see an improvement after 2 weeks then go back to gp and insist on prescription.

My DD is cmpi and her reflux is simply a symptom of this. She was on the hardcore reflux meds (omperazole and domperidone) which resolved some of her issues but not the wind and feed refusal. Her paed says that vomiting should not hurt a baby. He is also of the view that reflux is simply a symptom of some other underlying issue- and in many many cases it's an allergy or intolerance to cows milk protein.

If you have any qs let me know.

Good luck with everything and sending un-mnsetty hugs as I know how awful it is.

Thank you.

Part of the problem is I've been here before. DS2 had mild reflux but the gaviscon worked for him and he tolerated it fine. DD1 had it badly but as she had FTT they threw everything they could at her. So to effectively do nothing just seems plain wrong.

I have an appointment with the nicest of our gps on Monday (he's been on leave this week) so I'll ask him for a gastro paed referral. I'm certainly not going near the normal paed drs after they said it was overfeeding and to feed him over a bottle less than the NHS own website says is the minimum for a baby his weight!

I hate how they make you feel like you need to question yourself about everything . I've done this three times before for goodness sake, and two of them had reflux. I think I know what I'm looking for! And even if this was the first time, he ticks every damn box on the list apart from weight issues!

If it doesn't work then I'll happily go private. The money would be an issue currently (dh been redundant then started up his own business so we don't have a cashflow as such, more a cash-dam) but I know from a previous experience with dd2 and ent that it will be money well spent.

It just all gets a bit much at times. And the hv and gp say 'well put the baby in another room and take some time out'. I'm not in danger of hurting him or anything - he can't help it, and I never feel angry with him or anything, just overwhelmed with everything that needs doing and is not getting done. I am in danger of hurting the next fool who says he's fine though.

I'll try to get hold of the other formula in the meantime, see if that helps. Thanks again.

button I'm sure I'm not the only one mentally shaking their fists at the HVs and GPs. I think most of us have been through something the same with them. I was constantly told to 'persevere' which made me want to punch the hvs. Luckily my gp practice seems to have a good attitude to reflux and CMPI so I've not had too many issues there. I don't know how they expect you to do anything other than feel like crying, if you do the whole putting them in another room thing. I know sometimes it feels like you have to, put I always felt worse when I did it. Feeling overwhelmed is a normal feeling and not always very easy to deal with.

A few mums here have recommended having a breakdown, so to speak, in the gps to get them to listen to you. I can't understand why they aren't if you have two children with reflux already . One of the main things with reflux is that often they aren't FTT. I'm sure if it carries on long enough though, he will be. The hv's stopped the perseverance nonsense when he finally dipped on their graph.

I also had trouble as I was certain he was eating enough and everyone kept telling me he was (he was having about 20oz when he needed more like 30oz). YOU know/have a feeling for how much he wants/needs, so you should follow that. I was given 150ml x 24hours, divided by number of bottles a day and that worked for us.

we're all here for you button and beckie

p.s beckie I believe painful bottom wind is more often a sign of CMPI. My ds has CMPI and his symptoms were some silent reflux-like symptoms, struggling to feed/painful feeding/fussy feeding and explosive painful wind that made him scream or cry before, during and after. It all went away when we put him on the hypoallergic formula. he is on aptamil pepti on prescription

I know what you mean about feeling worse. I tried it this afternoon - thought maybe they're right, if I can't do anything what's the point of trying to comfort him? Well quite obviously the point is that I'm trying to comfort him surely?!

He does also have machine gun like painful bottom wind so maybe the cmpi is worth following up. Two of the others have an intolerance to wholewheat and his 1st cousin is allergic to dairy, potatoes, soya, egg... the list is endless.

Hi, after leaving a very depressed post a few days ago we have had a couple of calmer days and got enough sleep to be able to manage a reply!

Gaviscon is helping, DD2 is not constipated on it, her poo now looks fairly normal as opposed to completely liquid which it was before although she is pooping only one huge poo a day. I had not picked up on this at all in the midst of the crying/pain symptoms rather than just occasionally thinking that DD1s poo at that age had more substance.

DD2 is EBF and has these symptoms:

crying out/writhing in pain during feeds
pulling off breast in feeds
not lying on her back without crying
frequent (6 times a day) wet hiccups
painful farts
burps which make her screw up face and cry out
swallowing a lot
coughing suddenly like something has gone down the wrong way even when not feeding
sneezing
crying and fussing a lot after feeds (for hours sometimes)
completely liquid yellow poo, often expelled forcefully with lots of wind
breathes like she constantly has phlegm in her throat
watery, congested eye
makes lots of grunty noises
feeding much better when half asleep during the night

Lovely HV at breast feeding support group today asked if I had tried excluding dairy as well as those of you who suggested it. DD1 is allergic (immediate skin reaction) to tomatoes, my sister has severe anaphylactic reaction to nuts, DH had eczema and has bad hayfever, both my brothers have asthma and eczema so a food allergy is not out of the blue but no one has a milk protein allergy/intolerance diagnosed although I had cyclical vomiting as a child which has a documented link to dairy allergies.

I had always thought milk allergy was a bit pretentious like people who don't eat wheat because it bloats them, but reading about it more I see it is a genuine immune response. There appears to be a link between allergies and autoimmune diseases, I have an AI disease, lupus. I need to separate the idea of adults saying they have "sensitivities" from the idea of real medical food allergies. I am going to cut out dairy for a fortnight and see what happens.

can anyone help with carseats? Baby hates, hates the car seat. It must be squashing her tummy.

Hi mama glad to hear that things are improving a little. Didn't want to read and run but just wanted to say it definitely sounds like it's worth cutting out dairy. My DD had watery explosive poos and in the midst of the pain, puking and feed refusal I forgot to mention it straight away to gp. It is a major symptom of cmpi. Also the watery red eyes and congestion/sneezing all point to an allergy like my DD has. As others have said before you should also cut out soya and check everything for traces of dairy. Good luck and I'm really glad today is a bit better. With the right diet and / or meds there is light at the end of the tunnel.

Ps sorry not sure about carseats as my DD is ok but my reflux book says it can cause babies tummy to sit at wrong angle and cause discomfort....

Mine hates his car seat too! We've got a creatis fix but after a nasty car accident we're swapping it for a cabriofix this weekend so I don't know what effect that will have.

I did see on refluxbaby (or whatever that site is called) that they sell a wedge to straighten their back but I'm sure a careful examination would mean you could fashion something like it!

He loves his bouncy chair though as it keeps his back totally straight. It's one of those old fashioned thin fabric ones but he loves it. I quite often put him in it after feeds to straighten his tummy out and keep him upright.

Hey all, so sorry to see some struggles going on. Mama hope u continue to have good days, did the hv talk to u about pnd? I get upset and sometimes down when Lo keeps coming off the breast and I try everything to help but nothing works.
It's been a week since the hosp took my girl off her meds, day times not too bad, evenings come and she is getting worse throws up huge amounts, screams in pain and last night refused to feed so continued screaming till she knackered herself out and fell asleep in my arms but I could hear the acid coming up and bubbling then she woke screaming again. But once asleep ...deep sleep she will go for 3 hrs then feeds fine thru the night every hour or so.
The hosp I realise now fobbed me off, I was trusting in them and agreed to try no meds and now I feel like a fool . My partner even says ' well the doc don't think its reflux so she is fine' do u guys think so?
Slightly pissed off.

Could be an allergy doesn't run in family but think I may have to try properly to cut dairy and see how it goes.

Fingers crossed for u all.
X

I think there's a recurring theme here - dps/dhs not 'getting it'.

I reckon because they are generally not there all the time it doesn't seem so bad when you witness it in small doses. What they (or mine certainly does!) fail to understand is how much it gets you down when you're witnessing it every hour of every damn day. My dh in particular thinks I'm making a mountain out of something smaller. But then he's away 4/5 nights a week! So he doesn't get to see anything very often.

hi all, I used this thread a lot some months ago so I thought I should come back and offer some hope - CMP allergy here and silent reflux, used ranitidine as couldn't make gaviscon work with bf (and it gave constipation). at 6 months started weaning; at 8 months gradually weaned her off ranitidine. reflux seems gone now, although she still gets hiccups frequently the other symptoms have cleared. for us the key was refusing to be told there was no problem by the GP and insisting on my right to a second opinion from a paed. Hope this helps - it does get better eventually and it isn't an imaginary problem!

Hi all,

For those with cmpi, has teething made things worse?

DD's sleep has always been a nightmare but we had made real progress with the reflux when I came off dairy, soy, wheat and eggs about a month ago (thanks DrLindley!) and she was like a different baby. Since a week last Monday, it's like something slipped into my diet again. I know from past experience it takes 9 days to start getting better but we are 10 days later now and just getting worse.

My diet is exactly the same as when she was getting better so really can't figure out what is going on and really want to continue ebf but got no sleep last night and 3 broken hours a night for the past week.

I need some light at the end of this damn tunnel!

Also if it is teething, has anyone usedmedised or calpol with ranitidine?

Oh and my DH takes it very seriously as I make him get up at 5 am every morning with her so I can get another 2 hours sleep..

And another.. She had her last set of jabs on Wednesday - this has never bothered her before but has anyone else found things worse after them? Thanks!

bupandbump just wanted to say quickly that DD seemed to have a bit of a relapse. We went to see Dr Lindley last week and he said it can take only a tiny bug (one that doesn't even produce a cold or noticeable sickness) to sometimes irritate the gut and cause a relapse for 14-18 days. I think teething and jabs can have similar effect ( Lindley told us to delay ours for 2 weeks until J was over her blip and said to expect a flare up after the jabs) J is now much better with no increase in meds or anything so my advice would be to ride it out for a few more days and that it's probably just a blip.

Ahh thanks Daisylulu, that makes sense as she had diarrhoea last week too. I need to make an appointment to go and see him again but was worried he would suggest neocate when I know she was much better on an exclusion diet.

hi all, sorry not to post a long post and reply to everyone individually, I am completely knackered as DS is going through sleep hell at the moment, arrrgh.

re. dairy intolerance - it really does exist. If you want the sciencey-bit, it can be either IgA-mediated (true) allergy (think hives, anaphylaxis) or non-IgA mediated (delayed reaction type). The latter can manifest itself as inflammation in a variety of sites in the body such as the oesophagus, colon, or stomach - the first of these is the most common IIRC.

Children do tend to grow out of milk allergy as they get older - when precisely varies from child to child.

Yes to babies being worse after jabs and when teething. Daisylulu speaks sense!

Hello, first time on mumsnet for me- first time mum.
Just thought I'd put a few of baby's symptoms down here and see what you all think. He's nearly 12 weeks old and bottle fed.

Sleeps very well at night (up to 12 hours).

Feeds every 2.5-3 hourly in the day- only goes that long now on hungrier baby formula. Was more frequent, sometimes 1.5 hours before switched.

0-60 in 10 seconds- hunger. No warning.

Feeding him is very difficult. Arching back, crying out, seems angry when he loses the teat (writhing around so much). Then have to hold the teat in his mouth and sing to calm him until he'll take it again- seems so hungry, but sometimes inconsolable. Feel cruel, like forcing him. Massive burps- think it shocked other women a bit when I fed him at baby massage- I thought it was just normal! Lots of farting.

Does suffer a bit with constipation, think cos of formula. So offer cool boiled water which always seems to help him.

Teething symptoms have also started, which looks very similar to what I've described above. Think the sucking was putting pressure of his gums. But don't think it's always teething that is causing discomfort.

Never sick. Could count on two hands the number of times he's been properly sick in his life. Just possets a bit sometimes.

Not every feed is like this. Some days are better than others.

Is he just a fuss pot?! Or is there something else at play? Would really appreciate your comments :)

I only seem able to get on and post every few days, sorry I have been reading and taking the advice of people who reply. Thanks for your support.

We had two hours of continuous screaming last night from 10.30pm and she didn't sleep till 1.30am. Like Lucy above the trigger was feeding, she got very cross at the letdown not being fast enough (?) and going hysterical in under a minute. No rocking, shushing, swinging, white noise, skin to skin or further attempts at a soothing feed worked. We ended up with her in the sling pacing the playing field next to our road in the dark. And yet up until then she had been lovely and calm all day, a good day. Baby (6wks old) is very restless this morning, very tired I expect as she woke at 7am. She is in obvious discomfort again after feeding, each burp and hiccup is upsetting her a lot and she is squirming and wriggling in her sleep as I rock her constantly in a sling.

Two things happened yesterday - I didn't give her any Gaviscon as we are visiting the doc tomorrow and I wanted to see if the no-dairy diet had any effect, after 5 days of dairy free I ate a home baked biscuit which had milk and butter in (DD1 had made it at childminder and offered it, I ate it without thinking).

Any suggestions about this - would one no Gaviscon day cause that much of a problem (she was on 3 sachets a day taken from mid afternoon when her painful feeding episodes start) or is this a sign that she really is dairy intolerant? Surely that sort of a reaction would occur only if I had drank a glass of milk?

Mamalamoo, unfortunately from our experience it could be either. Gaviscon did help somewhat and when coming off it, she was definately worse. However my DD's intolerances are triggered by the slightest trace of dairy or soya - a soya coating in a vitamin, the casein that is used to clarify wine etc. It's only having her stable and seeing a reaction have we been able go trace what has caused it.

BubandBump thanks for you reply.

I will go back on the Gaviscon today as at least it does treat the symptoms and we don't need another night like last night! I feel very sorry for DH who went in to work at 6.30am this morning.

I fee so stupid for eating the biscuit, my older daughter (she is coming up for 3) rushed in all excited clutching a little bag saying "Look what I made mummy! Do you want one?" and while chatting to her showing lots of interest and acting very impressed by her cooking I chomped away on the proferred biscuit without thinking. She has had to put up with so much crap with a colicky newborn, I try very hard to find time for her and not be snappy and irritable out of tiredness and well, panic sometimes at the crying. God who would think a could cause so much trouble :(

Lucy I think maybe your baby is gulping lots of air down when feeding maybe because he is hungry and that is causing tummy pain midway through a feed. My LO does this on the breast sometimes, I had way too much milk for her at first and this sort of thing happened.

Have you tried stopping during a feed, winding him and starting again? Feed him more upright with the left side of his body higher, which will help wind out as your stomach is on the left side.

He could be having a growth spurt and being extra hungry. Have you looked up reflux symptoms at the start of this thread? You describe could be swallowed air or signs of reflux.

We're now on ranitidine but been told to come off the gaviscon. The upshot is that he is happier (as it's not hurting) but he is as constantly sick as he ever was. As in, since 5.50 he's been through 2 sleepsuits, 2 vests, sheets in his basket, sheets on my bed, 4 bibs and 3 muslins. Aaaaargh! I washed my dressing gown yesterday as it was totally minging with dried sick but I'm now wondering at the wisdom of that!

Dr suggested we try some anti-colic bottles for his wind too. We've been using the tommee tippee closer to nature ones but the anti colic ones of those have bad reviews so I've ordered some Dr Browns which are arriving tomorrow. If they help at all I'll be getting the full set - I've only gone for two to try them.

I don't know if I've asked this already (and am too lazy to check) but has anyone got any experience of sma staydown?