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.

lady, yes, DS has seen the GOSH paedeatric neuromuscular guy who said he had no immediate concerns, that most of his development was on track but they would see him again at 14 months to review.

On the reflux issue, he said this wasn't his field and he didn't feel confident messing around with his reflux meds, which is fair enough. If DS's feeding issues don't resolve soon, DH and I are agreed that we will seek a second opinion on him as he is clearly not right on the feeding front. If the current milk strike turns out to be caused by resp infection of some description I will also be worried because it will be his 8th inside 5 months. That surely cannot be right????!!!

narmada shouldn't the GOSH paed refer to someone in GOSH who does know about these things? Can you ask her to refer? I'm sure there are several people at GOSH who would be good to see - we've seen Keith Lindley and he is fab. He is a guru on cows' milk allergy, reflux - all this kind of stuff.

I know cardamom, you were fab with your suggestion - thanks.

Have just taken DS to GP who can find no infection, nothing wrong with him. Oh, apart from the fact that left to his own devices he would starve himself, of course. I cried all the way home. I cannot imagine spending the next however many weeks trying to syringe milk into my reluctant boy.

I think maybe I need to get back onto GOSH consultant and ask him to refer on. We cannot go on like this. It's ruling our lives. Thanks again cardamom.

Narmada - it's horrid . PM me if i can help at all xx

hi all i havent posted for weeks as its so manic here.
Im sorry to hear you are having probs narmada but shocked it may go on so long arrrgh.
I wonder if anyone can advise me on here if you have the time.
DD is now 7 weeks and has pretty much always suffered more in the day and was fairly settled at night. She will still sleep from around 8-3or4 which i know is amazing and im very gratefull for that, however the last 2 weeks she wakes then and i give her a dose of dom peridone and ranitidine then her feed.She fusses at first as if its painfull to swallow then takes it after a few minutes.I sit up with her for about 30mins then put her back down,her cot is propped and she has a wedge too. After around 45 mins she starts having bad reflux,wriggling and making noises etc,she is still asleep,i pick her up and hold her upright and it still happens but not as badly,she stays asleep.I have tried putting her down but it just happens again few mins later.I feel sorry for her and also starting the day at 3or4 is a bit tiring.

Is this a common problem? Is reflux worsened by laying flat for a while before,is there anything i can do?

She was on gav,dom and ranit and 2 weeks ago was changed to losec 5mg which was upped to 10mg yesterday,i have been thus far been unable to stop the ranit as she was still suffering.She is also on infatrini high cal milk as she wasnt gaining weight,i wonder if its that making it worse?Id like to try enfamil but she needs to gain weight first i think.

Is there a safe way to sleep with her upright on me?It scares me to try but it maybe my only option.

Gosh sometimes this is all so scary and overwhelming isnt it?and she is my 5th too

HI new here...with a 5 wk old reflux baby.

today is a bad day. After projectile vomiting episodes, being prescribed gaviscon, she is now on complete hunger strike. Since 12 am she has had 5 oz. I am at my wits end. cant stop crying.....

hi ledkr fancy seeing you here!!!

oh no pinkie,why is she refusing feeds?Is she pushing the teat out or is she arching back and crying as if painfull? They are great on here but their reflux babies make it hard to post.Are you feeding her upright?Im not sure what to suggest,i think you may need to ring out of hours,is she alert or floppy and listless?
Had another badish night but she has been lovely today,smiling and more content.We have 3 options to try tonight,more propping in bed,sleep for last few hrs in the swing or give in and let her sleep upright on me whilst i doze and watch tv.I am on the already tho haha.Let me know later how she is tho,text better xx

Sorry to jump into such a well established thread, but I really need a bit of help. My 12 week old twins both have reflux, and we are seeing the consultant for the first time, this week. (Dr Soe, Essex). Apart from talking about the obvious symptom, what else should I ask about? We're using Aptimil Comfort, but should I ask for anything else in particular, on prescription? And what will make feeding and sleeping better? They both sleep better when in their bouncy chairs but one of my mum-friends really told me off about this. I know they should be flat, ideally, but surely this is better than them being in pain?
Am v nervous. And tired.

dr soe looks like a good guy to see. i'd ask about the possibility of cows' milk protein intolerance/allergy and whether switching to nutramigen or neocate is advisable. as for sleeping - have you tried propping up the head of the cot with telephone directories? good luck - it's so horrid xx

ledkr, will she sleep on her tummy? DD refuses to sleep on her back but will sleep happily on her tummy. We got a breathing monitor because of the increased SIDS risk, even though I'm convinced that she's much better off sleeping like this. All the choking when we put her to sleep on her back can't have been healthy. Might be worth a try.

Holly, agree that if they sleep okay in their bouncy chairs, let them sleep there. The friend who told you off, does her DC have reflux? If not, don't listen to her, she has no idea what it's like. And you're right, if it they can sleep pain-free, it's much better than following the sleep recommendation.

(sorry, have to go, DD not having a good day ...)

Holly,i have broken so many of "the rules" with this baby due to the reflux.She sleeps on her side sometimes,i have made her a little nest in her crib and last night she slept the latter part in her swing.Good luck.

hi,

cardamomginger - thank you so much for the advice - i did not know there was such a thing as a gastric paediatrician! dh tried to talk to one/someone/anyone over the phone (had a desperate weekend), but didn't get anywhere. Going the nhs route, having to get referred etc is such an uphill struggle, so will see one privately.

also - i have just seen my hvisitor, she has been really helpful, thinks reflux - ds kept squirming & bringing up his feed while she was here. gave me a perscription for gaviscon, thinks the nappy rash is thrush & have perscription for canesten. she wasn't impressed with the gp's advice, in fact, quite angry.

don't know if its a symptom of reflux, but ds is a really noisy, squirmy, restless, farty sleeper. seems to be constantly struggling.

hope others are getting somewhere.

Holly my HV actively advised putting DS1 in a swing or car seat for a few hours so we could sleep and then setting an alarm to lie them down once the reflux had subsided.

Narmada sorry to hear that the milk stirke continues. I've forgotten, are you still BF or now on bottles? It took DS1 till 11 months to ever finish a bottle but he found it a lot more comfortable than BFing and the screaming feeds/total refusals really improved. I remember how totally shit it was and send lots of sympathy tto you and Pinkie.

Vi Your description describes DS2 to a tee, and yet DS1 did not have the same problem. With DS2 we had to get up for a half hour farting session at 5a.m. for about 3 weeks!

My DS1 is going into hospital tomorrow for a pH study for reflux. he will be three next week and we are an unusual case, but I'm really nervous. There will be no anaesthetic and then I've got to persuade him to leave the tube alone for 24 hours. Have packed lots of bribes and distractions! Think of us..

We're back from seeing the Cons Paed. He weighed both babies and said that as they are gaining weight well he doesn't want to change their formula. He also said that most of the prescription formulas taste foul too.

He's upped their ranitidine dose, prescribed domperidone and said to keep going with IG but maybe miss it from a couple of feeds a day to see do they tolerate life without it.

They're 12 weeks old and he recommended thinking about weaning the worse of the two at 14 weeks! we're seeing him again in 4 weeks so I asked to hang on till then and he said fine.

ViVee, our chap is Mr Soe and he's a paed with a special interest in gastrology in infants and we saw him at Rivers Hospital in Sawbridgeworth. Don't know what he charges as we haven't seen his bill yet.

He also said that them sleeping in their bouncy chairs is fine, and they too are squirmy farters!

Can IG affect how babies feed?

I think my baby might have reflux. I took her to see the doc yesterday as she has always thrown up/regurgitated milk and it was getting worse. He wants her to be weighed before making a decision about treatment but gave us some IG in the meantime (clinic is tomorrow).

I've been using the IG since yesterday teatime and DD has certainly thrown up less. However, her wind seems worse, she's not slept as much during the day and is obviously uncomfortable. More worryingly, she hasn't drunk much milk. She'd normally take 140-180ml but we've struggled to get as much as 100ml into her today. We've interspersed feeds with gripe water and this last feed, I've changed to a bigger teat to see if that helps. (DD is 8 weeks old and using 3 month+ teat).

Is the difficulty in feeding likely to be a result of the reflux or the gaviscon?

If you put IG into bottles you may need a variflow teat rather than 3+ month, gallic. It does tend to clog up normal teats and your baby may struggle with gettting it out through the hole, especially after the first two or three oz. as it gets thicker the longer it stands. Other than that, it could be the taste - it's vaguely seaweed-like so not fab. YOu can always give it separately in a baby nurofen-type syringe at the beginning or end of feed - can't remember which it's supposed to be but it says on the sachets I think.

IG can cause constipation, too. That may account for the wind. We had to discontinue it partly for that reason. Or, if she is putting a lot of effort into sucking it through the teat, she may be swallowing a bit of extra air.

If the feeding problems have only begun since you started the gaviscon, you can probably conclude it's the gaviscon that's the problem! Was your baby otherwise happy aside from the vomiting? If so she may just be one of nature's happy spitters. If not, she might need something other than gaviscon OR a non-milk based feed - sometimes cow's milk allergy can mimic reflux.

Thanks for the tips. After speaking to the HV we decided not to bother with the gaviscon for now and to try a different milk. DD has her 6 week check on Wednesday so that gives us a few days to see how she reacts and then we can follow up with the doc.

Yep, IG in bottles is a PITA! We had a nightmare getting it into him and now have 2 bottles. The 1st has 30-40ml and the IG, then the 2nd is plain milk. Otherwise it just got too thick.

re: green poo: my HV (who is lovely and isn't signing me off until things improve) said that can be a symptom of not being able to break down the lactose in the milk. While Sam doesn't have green poo he has other things that make her think it might be worth investigating if things don't improve on the Ranitidine. You can get Coleif drops to add to their feed, and it breaks the lactose down into more simple sugars before it gets to their tummy. Can help with stomach cramping and excessive fussing/screaming.

I sleep with Sam on me all the time now. It is the only way either of us get sleep. I try and put him down during the day, but he is worse at night and just keeps waking himself (and me!) up.

Oh bless, poor little thing. I hope he improves soon.

My DD isn't that bad so might come under the "happy spitter puker" category!

We've been using SMA staydown milk and although she is still bringing up some milk, it's nowhere near as much as it was with the Aptamil. We also use a variflow teat which has helped with the wind. Mind you, the first couple of days before we got the hang of it, she was taking 180ml in about 5 minutes and then understandably getting discomfort from the sudden influx of milk into her little tummy.
Poo has gone from liquid with the Aptamil to a firm paste consistency with the new milk so I'm just trying to get some water into DD too so she doesn't get constipation. Antenatal classes never warn you that you'll become as obsessed with poo as Gillian Mckeith!

First foray onto this thread as am not sure if my DD is displaying signs of this.

She's 6 weeks 4 days old, and so far feeding has gone as follows:

week 1 - BF but she lost a lot of weight as she 'failed to BF' (as per paediatrician) and since then we've been on Apatamil first milk
weeks 2-3 - colicky crying in the evening but only for about ten days or so then seemed to disappear, and she does now go to sleep in the evening.
weeks 2-6 - Feeding OK on Apatamil and gaining weight well, but often struggles to get wind up, lots of pulling up legs etc. Started on Infacol at week 3 which seemed to help a bit but now I'm not so sure.
weeks 4-5 - started trying to get into a kind of loose 'routine' in the day, mainly eat, play, nap and she seemed happy with this
weeks 6-7 - She has suddenly become a very 'cry-y' baby, very little awake time is 'content', and very difficult to put her down for daytime sleeps (wriggles/writhes and grunts constantly) after being perfectly fine the couple of weeks previously. She still sleeps well at night (right the way through on a couple of occasions), but seems uncomfortable after feeding, crying (sounds like painful crying rather than bored/tired/hungry crying) and screwing face up, only comfortable lying on me. Frequent 'curdled' spit up quite a while after feeding, remnants left on tongue. For the first time she has today refused a bottle.

I really feel like something has changed for our DD in the last 3-4 days, do the symptoms above sound like they could be reflux? She has gone from being fairly content and 'easy' to being very hard to please at all in the day. She's still OK at night though. Does reflux often start at this stage (6 weeks ish)? I had thought it would be earlier?

Any thoughts?

D

Forgot to mention, DD hiccups constantly, at least 3 bouts a day, and always has done.

D

One of my twins has been prescribed Neocate by the paediatrician. My GP wasn't impressed and said I should do exactly what it says on the tin (obviously) and then in the next breath said to dilute it! FFS! The GP will only prescribe it a tin at a time, which lasts about 2 days! I suspect this is about cost. Has anyone else had trouble like this?

BagofHolly - I hope the Neocate works for you. I am so sorry your GP is being utterly rubbish. Can the paediatrician speak to the practice, explain that it is essential that your DC has Neocate and not any other formula and make a formal request that a prescription for a more realistic amount is written up for you? Does your practice work closely with a local pharmacist? Just wondering if you could negotiate a compromise arrangement where you have a sensible prescription written but only 2 tins at a time are given to you. But the whole thing is ridiculous! What are you supposed to do if it is a weekend, never mind a bank holiday? FFS . And as for telling you to dilute it?!?!?!?! Dear Lord.

Good grief bagofholly that's ridiculous. Agree I would get You the consultant to write to your GP outlining why neocate is necessary. Our GP does 10 tins at a time. It costs about £35 a tin OTC, not sure about cost to PCTs if on prescription.