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.

dd was choking badly from birth too,then developed an aspiration pneumonia at 6 days,it was a nightmare,she has a cleft palate too so drs dont know what caused the ap but maybe both,does anyone else lie baby on their side and/or keep them upright after a feed,i find that hard at night,i watch tv!

cardamamginger thanks for your posts - reason I am asking is because the only time DS seems comfortable enough to sleep for longish stretches is, I've realised, when he has inadvertantly had two doses quite close together...

not getting on too well with the neocate - seem to be stuck at a half and half mixture of aptamil/ neocate, any more potent and he won't touch it, particularly first thing in the morning :(. have even tried sweetening and flavouring so i don't know what we're going to do. every evening is spent jiggling him and trying to keep him asleep, and he still at 18 weeks has to be held/ jiggled for all day sleep. I am going crazy and my poor, poor DD1 is constantly clamouring for attention.

ledkr, have you considered buying an under-mattress sensor breathing pad? we have one and it makes me sleep a bit easier.

bethyloy thanks too and glad your LO is doing so well.

DD has just been diagnosed at doc's today She has all symptoms mentioned here, including white tongue and hoarse voice etc. She also has explosive and green poos and farts all the time. In a way I'm glad I know now, cos I just thought it was all normal newborn stuff and that I was just a weak individual and a bad mum for not being able to cope with the no sleeping, constant crying and feeding!

Can you guys advise me on how you feed your dcs? I am ebf, dd is 6 weeks would rarely last 3 hours between feeds, usually 1-2 hours at the most. Before it dawned on me that she might has reflux I was trying to stretch out the time bewteen feeds in the hope that she take bigger feeds and sleep for longer at night etc and I thought this may correct green poo issue as she would be draining breast and getting enough hindmilk etc. Now obviously I realise this probably isn't best thing to do. Do you stick to a feeding "routine" at all, or do you purely demand- feed? Thing is dd seems to have stopped demanding food! Today she has hardly fed at all and seems happy, every now and then I put her to the breast but she has a small amount and starts screaming! I reasoned that stretching her out between feeds was that she was gaining massive amounts of weight (15oz a week) but now I realise that was proabaly down to clusterfeeding/comfort sucking. Advice anyone?

I have found that gripe water worked really well, I gave it to her when I thought she had colic, infacol didn't work but gripe water instantly stopped her crying. Probably because it has an antacid - another clue that her symptoms were down to reflux rather than colic. Thing is I noticed she developed a rash when I started using it that went down when I stopped so I stopped using it! I have now found that infant gaviscon works just as well!

Funnily enough she doesn't like her swing much, but is instantly soothed when put in her vibrating bouncing chair. I have also put a folded blanket under the head end of the mattress in her moses basket to elevate it. Before, the second you laid her down in it she would scream and wouldn't settle at all. Now she settles straight away, but admittedly still only sleeps for about an hour at a time, but I think that is down to habit and she is waking for comfort/food rather than due to reflux symptoms.

Has anyone tried and elimination diet to indentify potential triggers? Is it worth doing?

Ms scarlet, welcome! Have you seen a lactation consultant about your DD's issues? I am wondering if there might be an oversupply issue contributing to her problems, that's all. I think the green poo could be an indicator. But it's great the gaviscon is working well. hurra!

Hi MsScarlett
Welcome...
Your DD sounds similar to mine, perhaps - hated her swing, exploding poos, constant (often 'angry') feeding, unable to stay asleep despite settling well. I have also been through the 'am I a crap Mum, what am I doing wrong' stuff because I couldn't keep her comfortable and happy and hated that she cried so much. She's now 6mo, so here are some thoughts, for what it's worth...
I nearly drove myself (and DH & DD) absolutely mad by trying to get a routine, before binning it and doing whatever felt right on the day, and each day was, and still is, different. I'm not saying it's the best thing, but it's the only way I can cope! DD is BF from the boob - she refused all bottles, even expressed. I demand fed, and still do even though we're trying to wean. She also used to have days when she didn't want much and days when she fed frantically and almost constantly - I literally walked round with her in a sling 'plugged in' for hours at times! She prefers to sleep on a shoulder, but will now sometimes sleep on her side or front (which scares us but we're human and need to put her down sometimes!)for around 60-90 mins at a time. Some nights DH & I take it in shifts to hold her so she can get some asleep. Her cot end is propped up and she feeds to sleep as she still can't self soothe. Her reflux is silent so it's sometimes hard to work out what's symptomatic and what's behavioural. But just when I think it's behavioural, she 'gloops', chokes and wails, or strains to poo for hours on end, so I decide she was too sore to sleep.
Altering my diet didn't make any difference, and I found it very difficult, but others swear by it.
If I'm in a position to give advice, it's - do whatever you have to to keep your LO happy and comfy, forget the 'rules'. Stick to your guns with professionals and'know all' other Mums/relatives - she's yours and you know what you're talking about. Go easy on yourself - there's plenty of time to be supermum later on - just now you're dealing with a refluxy baby and it's hard. Accept help and keep in touch with people.
Sorry for banging on!

Thanks you two! Glad to finally have some indicator that perhaps it is harder for me than others! I knew being a mum was going to be hard but nothing prepared me for this! I thought the reason I wasn't coping was that I was inherently less selfless than other mothers who are just better at "sucking it up" than I am! I hadn't sought any extra help/advice from hv/clinic because I thought they'd just tell me it was "normal" and I knew she was gaining weight because you could see it visibly - plus she is such a handful I struggle to get out and do anything when dp is at work, I barely manage to get dressed/showered most days - so I didn't see any point in going to clinic as I didn't think they could help. It was actually this thread that convinced me she had reflux! So, I took her to GP today and I'm also going to go to clinic tomorrow, get her weighed and have a chat with someone. I feel so much better now I know she's not just "difficult" and I'm not just crap!

Narmada - how could I access a lactation consultant?

Ellnol - please bang on all you like, yes your lo does sound similar. Mine's favourite sleeping position is on her tummy on my chest and I have woken up in this position a few times after I just can't stay awake feeding her! I am so exhausted I just can't help it...

Can anyone advise on breastfeeding and giving gaviscon? How do you get them to actually swallow it?! I use a syringe and give her small bits slowly into her cheek but it just comes back out again if her head is tilted forward, and if her head is tilted back she seems to choke on it which is also worrying. Also, as you can only give 6 sachets in 24 hours, how do you decide which feeds? DD has lots of little feeds, and seems to be in pain after/during all of them...

Looks like its' me banging on this time...

There may be one that works on the NHS in your area. The LCGB website should have details of one near you:

www.lcgb.org/consultants_local.html

Some practice privately and charge - I paid about £70 for a 2 hour consultation.

Hmm - only one anywhere near me is private, and just can't afford it unfortunately!

PS re gaviscon, you can give it in a bottle mixed with a bit of cooled boiled water but that is a faff.

Could you syringe a bit in, pop her back on boob to initiate suck/swallow and repeat until it's all gone down?

Oh bugger. You could try calling one of the BF support lines, NCT one maybe?

so sorry narmada you and DS are having a truly horrid time . don't know what to suggest re the neocate. nutramigen, even though it's derived from milk, would doubtless be better than 50/50 aptamil and neocate. has he tried nutramigen? but i think that's pretty vile stuff as well. don't know what to suggest. how much lansoprazole is DS prescribed? who have you been seeing? GP or paediatrician? i think GPs and even non-specialist paediatricians can be a bit wary of prescribing medication at a high enough dose to actually make a difference to the problem. if you are being managed by GP can you press for referral to paediatrician? and if you are seeing a general paediatrician can you press for a referral to a specialist? sorry if you have already said all this in another post. where in the country are you? we are seeing someone fab at great ormond street. but it does involve neocate - not sure you are going to get round that. so sorry

Oh gosh MsScarlett - know what you mean about 'is she just difficult, (and if so, why?) or 'normal' and I'm just not up to it'... Been there! People had to remind me that they use sleep deprivation as a form of torture because it's so soul destroying! It's ok to be knackered, or stressed, or to hate the situation you're in. You're not being unselfless (is that even a word?!)
I hated 'groups' because of the monumental effort it took to get out, and when we got there everyone else had smily, gurggly, contented babies and mine couldn't be put down and screamed anyway. I felt like such a freak. Good on you for going to clinic, I hope the HV is good for you.

Re Gaviscon - I got into such a tizzy about timings. If it was less than 4hrs was I overdosing her, more than 4hrs and it buggered the next dose up!! And the whole 'with a feed' thing - implies there's a feeding routine and the doc who prescribed it should know that doesn't work! We syringed, ever so slowly, into her cheek on the 'down' side as she lay on her side, if that makes sense? Some dribbled out but more stayed in! Someone suggested mixing with expressed milk and syringing in, but that didn't work for us - even more liquid to get in and the feeding's hard enough without trying to express too! That said, we felt it didn't make a huge difference to her and made her chronically constipated, so switched to ranitidine quite quickly. We had to change GPs though - the old one wouldn't prescribe ranitidine and suggested we sing to her if she's 'fussy'!! Hope you have more luck with the Gaviscon today. Keep in touch.

DS is on 6 mg lansoprazole, prescribed by hospital paed. He weighs around 7 kg I think. Paed's not a gastro specialist but is very very good and think I will email him for advice. We are in Kingston, Surrey.

The main problem is sleeping really - I don't know how much of it is behavioural and how much of it is due to the reflux/ CMPI and learned behaviours.... it is so hard to decipher. I think DS has a high pain threshold as he has had blood taken via a cannula from the back of his hands twice and barely made a peep, just looked agitated.

I got hardcore with his sister (who was also a terrible sleeper) but with him I just can't be confident that it's not the reflux/CMP thing that's making him unsettled...

cardamomginger sorry, I didn't say - thanks for taking the time to reply.

narmada - i think you may need a paed gastro specialist. if ds needs lansoprazole 6mg is prob going to do bugger all good - particularly as you can never get all of it into them. if you want i will pm you with our consultant's details at great ormond street. xx

cardamom yes please! We have been referred to GOSH but it's to a neuro, as DS also has hypotonia of unkown cause...

Thanks re lansoprazole advice - tis true about it not all going in and I know it's never given on a truly empty tummy because he frequently sicks up solidy curds and even pure liquid even 3 hours after a feed!

narmada - done! X

Just popping to to lurk/post and see how you are all getting on.

narmada There is a fab gastro paed at Kingston hospital. A couple of people I know have been referred and he comes with glowing reports. He can be referred to by your GP as he runs the reflux clinic at Kingston Hospital BUT he also has a private practice. His name is Dr Winrow

So to speed everything up, my sister got the referral from her GP, paid for the first private appointment so she didn't have to wait the 6-8 weeks for the referral appointment. Then was 'in the system' already when the NHS referral did kick in.

And yes, terrible sleeping and reflux do tend to go and in hand. (sorry if thats slightly depressing news!)

fumblina thanks for the tip - Wwe have the lovely Dr Lindo who has been brilliant so I am kind of loath to change him as it seems a bit rude somehow :( I know I shouldn't be so meek!

Yep, sleeping, oh yes, he is my second refluxy one, although DD was nowhere near as bad as he is. Her sleep was possibly worse however...

cardamom have replied via PM - ta so much.

Well blow me down with a feather. I just left DS propped on his side on our bed, dummy plugged in, and he has sent himself off to sleep. This has (whisper it) never ever happened before. And I mean NEVER. Blimey.

Ok - so I am officially a bad/neurotic/not coping mother now, it will now be embalzoned all over the HV's notes...

Took dd for her hip scan (she was breech). I had fed her not long before we left as I knew we'd be out for a while, but inevitably she started screaming. I gave her some gaviscon and luckily she setlled and I managed to get her to the hospital without any problems. Got called in and I warned them that ahe doesn't like being laid down and why. Funnily enough she was ok when they scanned the first one, she was laid on her side and I thought maybe she'd actually be ok... Rolled her onto her other side and she started SCREAMING and kicking her legs all over the place. It wasn't that that bothered me so much, I am used to her screams after all, but the two women scanning her looked HORRIFIED.

So anyway, I get her into her clothes and into the car and she screamed in the car the whole way to the clinic. Usually she is not too bad in the car so by the time I got there my nerves were frazzled. She wouldn't stop crying when I got her out so I wheeled her round outside in the pram for a while to get her settled. I go into the clinic and am greeted by the sight f lots of happy gurgling babies lying on changing mats. My heart sank. A man told me to undress dd and lay her on a mat. My heart sank some more. Of course the moment I laid her down she started. Bearing in mind the only reason I was there is that I wanted a chat and some advice regarding the reflux, and I called the HVs twice and their answer was "take her to clinic". So i said to the man, I don't want to undress her right now as she is distressed afetr just having scan etc but I have a couple of questions etc. So I waited outside in the porch bit and tried to sooth dd. HV comes out and we start to chat. What do I do? I start CRYING! Only for a second, I composed myself quite quickly, but she took one look at me and said I really needed someone to come and see me at home as I needed some TLC. Which roughly translates as "your dd is now on the at risk register" I suppose!

She then went on to say that I had come to the wrong clinic (I was told on the phone to go to that one) so she couldn't help me as I was not "hers". She also commented on dd's white tongue and said it must be thrush (?) and as it turns out she also has a tongue tie, god knows why noone else has noticed as she constantly has her mouth wide open screaming..

We finally weighed her while evryone else in that small echoey room put their earplugs in, and she is gainig weight - 50th centile, so that is something.

So I came away with no answers to my questions, feeling more worried and inadequate than ever. Which is a shame as I was actually feeling fairly positive this morning as dd had also managed to self-soothe a couple of times last night now that I have elevated her moses basket mattress and actually took the dummy a couple of times which she rarely does! Congratulations Narmada!

Sorry about the rant. Feel so much better for typing this though. Thank god for this thread!

p.s. thanks elnlol. I too am starting to notice that dd's poos are firming up and she is straining. And I changed a nappy today that wasn't dirty which never happens...

Oh msscarlett, how awful for you. nightmare day. hang on to the fact that your DD self-soothed - seriousky that is amaxing fir a refluxy babe. you are doing brilliantly - everyone's still alive, that's your only standard for now!

I would get the tongue tie done ASAP. It could be you DD is swallowing air as a consequence - does she make clicky sounds as she feeds? There should be an NHS clinic - HV should point you to it. If you're in london there's a rapid access one at king's college hospital. tongue tie is v easily missed as most health folks aren't trained to look for it or wrongly belive it to be unproblenatic. sometimes its harmless but I noticed with DS that even though he was piling on weight he could not comfor suck on the breast, presumably owing to th tie. I think he was getting more milk than he wanted and this made reflux worse...

Hello everybody,

I think it's time for me to stop lurking. I've been reading this thread since late December when it dawned on me that what might be wrong with DD could be reflux. Have to admit that finding out that other people struggled with a problem similar to mine made me feel a lot better - and I don't mean in the sense of, "oh good, other people are having a miserable time with their little ones". I wish none of us had to go through this, but it was a huge weight of my shoulder that the whole situation wasn't down to me being a rubbish mother. Once I was sure that reflux was the reason why my formerly contented newborn had become so unhappy, dealing with the situation got a little easier. At least I knew why she was grumpy all the time.

We went to see the GP in early Jan and after describing the symptoms, GP agreed that she has reflux and prescribed Gaviscon. The transformation was remarkable, feeding became much easier, DD was smiling again and keeping the majority of her milk down, too. She would still not sleep on her back (we got a breathing monitor and let her sleep on her tummy even though she will not go to sleep in her basket most of the time, she mainly sleeps on us). Everything was still fine a couple of weeks later when we went for her six-week check (when she was actually eight weeks) but over the last few days, things have gone to pot again. Gaviscon doesn't seem to be working anymore, we're having a bit of a spit fest for an hour or so after every feed. She's still below 4.5kg but only just, so maybe that's the problem. I'll go and have her weighed at the baby clinic tomorrow and if she's really 4.4kg (we weighed her last night on the kitchen scales which doesn't give us the exact weight), I'll probably increase the dose to see if it makes any difference. If not it's time for something stronger, I reckon.

MsScarlett, re: giving Gaviscon to your DD: Mine spat most of it right out again in the beginning, so I made a big deal out of every drop she swallowed, cuddling and kissing her and telling her what a good girl she was. After a few days, she swallowed most of it and even seemed to like it. Not sure it will work for you, but worth a try I suppose.

narmada, fingers crossed your DS falling asleep on the bed isn't just a one-off. DD has just slept in her basket for two hours - I've showered, eaten and typed the largest part of this post with two hands, yay!