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.

took dd to see gp this morning she has been given baby gaviscon started this afternoon so fingers crossed it will help. last week on the advice of another gp i spent £30 on dr browns bottles........ now is it me doing something really wrong but they seem to leak and i really dont know why im only putting in 5oz, and i cant say they are that good. what am i doing wrong and are there any better bottles out there. feel like im spending a fortune on different things and getting nowhere fast.

yoga pepti tastes different to normal milk (I think it tastes a bit like horlicks) so your baby mightn't like the taste. You could try sweetening it or flavouring it with something - our dietician mentioned banana nesquik although I imagine this isn't good for teeth or health in the long term.

We don't have any problems with viscosity particuarly - it's not a thickened milk at all, though - same viscosity as normal formula I think. Could you put a smidge of carobel in it to thicken it up but not enough to block her up IYSWIM? YOu might find that constipation is less with a hydrolysed formula anyway, as it is easier to digest and cow's milk protein issues can cause constipation in and of themselves...add in gaviscon etc and you have a recipe for disaster!

Not sure but the omeprazole dose doesn't sound that high for a fair-sized baby. Did your doc warn you of the importance of giving the omeprazole in the morning on as empty a tummy as you can manage? Also, you need to wait at least 30 minutes before feeding your baby after the dose.

Oh, and probably telling you things you already know but you also mustn't crush the small balls of the active ingredient in the MUPS tablets once you've dissolved the tablet in the water....

Narmada thanks for the info on Omeprazole, didn't know that, have been giving it in the evening before a feed. I have the liquid version now, so no need to mess with the little balls. Although Peadeatrician said that if I go back to tablets I could make a carabel paste, drain off the water from the tablet and just put the balls in the paste.
Will give it a day or two back on the comfort milk and then try again on the pepti, we have had a disaster today with feeds, so don't want to rock the boat any more. It is such a balancing act getting her to feed as it is!
Narmada you are a fountain of knowledge, thanks.

Tayto I know how you feel, I have spent a fortune already trying to find solutions to ease the discomfort.
I am using Avent bottles, although the teats are a pain for thickened formula, however Dr Browns, Asda and Boots wide neck teats fit the Avent bottles. I have read good things about the Tommee Tippee Closer to Nature bottles. I think the main thing is finding one your LO gets on with.

Fingers crossed for good days for all tomorrow. x

yoga hmm, maybe it's different for the liquid stuff, not sure.....is that the stuff that's specially compounded and has quite a short shelf-life?? Our pharmacist claimed there was no such thing but I had it on good authority that there was, and now you've confirmed it for me . Hope I don't sound like a mrs know-it-all-pants, just been there and done that and thought if I could help and all that...

I noticed a massive difference in DS when we started religiously giving him his meds (lansoprazole, same family as omep.) first thing in the morning as opposed to between first and second feeds.

The reason for giving it in advance of food on an empty stomach is that it is not properly absorbed if taken with food.

I think you may be interested in this article:

www.analyticalarmadillo.co.uk/2011/05/cause-of-your-babys-refluxwindcolic.html

Don't know how relevant it would be for severe reflux cases but may well be worth a consideration anyway.

I've seen both TT and dairy intolerance causing reflux. Of course there's frequently a mechanical cause but I thought I'd post this as hopefully it might help as trying to treat either TT or DI with drugs is obviously not helpful.

Narmada you are a real comfort to me, not know it all sounding. Nice to know other people have been through it.
The Omeprazole that I have is the compound form with a 2 week shelf life, needs kept in the fridge. Specially made up in a university hospital lab in England. My GP is quite excellent and when I insisted I knew there was such a thing he sourced it for me.
I will start giving it in the morning from tomorrow.
Organic thanks I read that article on a previous post, I was considering that could be something to ask the Paediatrician about at next visit. Will defo now.

organic that is a really interesting article - my son who has severe reflux and a suspected dairy allergy also had a tongue tie (now clipped), high, arched palate, and a chin recessed enough for a paedeatrician to comment on it. The perfume atomiser analogy is interesting.

Have to say though in my son's case clipping the tie didn't really do a great deal but the theory makes sense.

the tongue tie article is really interesting,. if i ask my gp for a referral for dd to be seen by a specialist who in terms of job title would she see. (does that make sense)

Was at GP today for 8 week check up and he checked for TT, none evident. Also I watched closely when she was having her bottle earlier and could see tongue curled round the teat.
Think my LO just has reflux and a bit of an issue with milk! So will try the Pepti in the next few days, if she takes it HV suggested a 2 week trial.
Tried DR Brown bottles yesterday and she seems to be better on them than Avent, lots less fussing and her feed only took 3/4 hr in the night!
Currently attempting to try and get her to have a day time nap, rarely has this happened, so fingers crossed!

Hi all,

Just found this group/thread. Almost at wits end!

My DD is 4 weeks old tomorrow. We're back to the GP tomorrow after being put on infant gaviscon last Thursday. Any tips on what to ask/tell GP so we can get a paeds referal?

symptoms of reflux started 2 weeks ago, started gradually becoming worse each day.
Hiccups 7> episodes a day (constant womb hiccuper too)
Sticky/foamy spit
white tongue
sticking tongue out
wet burps
arches back or curls up in ball when feeding
Can't lay on back for sleeping or nappy changing without being sick, from mouth and nose.
brings up fresh & curdled milk, ?acid either immediately or hours after feed

The infant gaviscon doesn't appear to be making any difference at all.

when she's laid on her back or reclined almost flat she starts foaming at the mouth, really sticky. Constantly swallowing then sticks her arms out, fingers splayed, like a jumping frog! Horrible choking noise, then it all comes out!
If she's not sick then she is rolling around whimpering, pained look on her face. The only sleep she gets is laying on our chests or being pushed along in the car seat part of the pushchair.

We've raised head end of moses basket and changing mat. Doesn't make the slightset bit of difference!

Can't put her down/leave her for a minute. Makes it very difficult when you need to go pee or eat or do anything!

We're "lucky" that she doesn't scream but we know she is so uncomfortable. It's so heartbreaking to watch. made worse by the fact no one is getting any sleep.

xawaywiththefairies sounds absolutely awful but oh so familiar...I feel for you. There is hope, but you just need to know what you're dealing with first.

I would mention the foaming, vomiting, and choking on back - stress that this is not normal baby levels of vomiting and choking, but happening day-in, day-out. I would also mention feeding difficulties as it stands to reason that babies should not be in discomfort when feeding.

Things to ask GP - can you try something other than gaviscon before seeing paed as the appointment can take some time? GPs can prescribe the full range of drugs if they're so minded - options are ranitidine or something stronger like omeprazole.

Is your baby formula- or breast- fed?? If the former, I would also ask to try a hydrolysed milk formula (not soy or lactose free formula) to rule out issues with cow's milk protein. Again, paed referral not needed if you're GP is feeling generous. If breastfed, then I would strongly recommend a trip to your local baby cafe, or booking a private appointment with lactation consultant to get their opinion of what's going on.

Can the doctor look for a tongue tie and/ or other palatal abnormalities? (although TBH many won't know what they're looking for regarding tongue tie and you might even have more luck googling tongue tie [posterior, sublingual and anterior] and comparing the pictures with your daughter's tongue). Interesting link about tongue tie in organiccarrotcake's post above.

Hope you get some help, it's horrible when they are so unsettled and you don't know what to do for the best.
As for sleep, is there any chance you and DP could sleep in shifts so you both get some uninterrupted zeds? You need to recover from the birth and these first few traumatic weeks.

Hi everyone,i was on this thread a while back when my dd was very bad with her reflux. She is 18wks now and i just wanted to say she is loads better sincve the omeprazole and share my tips for giving it with you.
She is on a 10mg dose as 5 was not effective. I use a nurofen syringe as suggested on this thread-thanks-i pop the tab in the tube and then suck up a very small amount of water when it has dissolved i shake it and then add her dose of dom peridone to the tube to sweeten it,i then give it to her in drops and she actually seems to enjoy it ????? smacking her lips etc, I then suck up some more water and give it to her to wash the last of the grains out and also the extra water has helped lots with the constipation from the gaviscon.I must admit i give it in the afternoon between feeds but now she is sleeping at night i may change it to the morning.
All i can say is that although i have been extremely lucky and Dilly seems to have got better quickly,it was possibly one of the hardest things ive ever coped with,i am a seasoned veteran with 5 dc's and reflux completely floored me.D has a cleft palate and this was surpassed by the reflux easily.I just wanted to share that with those of you who are still struggling cos i am normally such a tough cookie and it got me. Good luck.
Ps I also had to work hard to "allow" dh to take over as i felt it was my job,i felt a lot better for that and so did he.

narmada DD is currently combination fed, the gaviscon doesn't seem to mix with expressed milk. one problem I've got is DD takes a long time to feed. The gaviscon has usually got too thick by the time were half way through the bottle. Can sometimes take 2hrs to get her to have 4oz. But she is always "asking" for food. once on the breast i think she is comfort sucking!

She has been putting on weight and therefore i've found hv, some family members (strangely my mum!) etc are not sympathetic.

My DP is currently on 12 hour night shifts so hasn't been able to help much at all. I didn't even try to put her in her moses basket last night, there's no point so i sat on the sofa all night with her over my sholder/on my chest. Think I managed to doze for an hour. My future mother in law is great, she's coming over for a couple of nights next week so I can go to bed and she will stay up all night with dd. I think that was after coming to visit yesterday and finding me in tears and me & dd totally covered in sick (i'd just cleaned her and put her nice clothes for nanny's visit!)

off to see gp now armed with questions!

Hi Ledkr, that helped heaps! I was just thinking that I thought I was a real tough nut before my refluxy DD arrived, perhaps I am still! It's my first so good and bad in equal measure, had no expectations of parenthood but would rather be enjoying it a little more than this!
Tried the Aptamil Pepti at the last feed and it went down with no issues. In fact this bottle only took 15 mins! Currently a little shocked! Although that could be more to do with upping the dose of Omeprazole yesterday!
Off to attempt to get dressed whilst holding DD upright!
Hi to you AwayWTF, sorry you have joined the thread but at 4 weeks you have started to get things sorted quickly. Luck.

I am SO cross. Just come back from GP, not the same one I saw last week. Armed with all my questions and little bit of knowledge.

He didn't even check DD, stroked her head that was all. (she was asleep in my arms)
In HIS opinion I'm worrying over nothing!!!! Extreme possetting he said!
He wants her to be weighed, (they don't do it at the surgery) and see her again on Wednesday. If she has put on weight then it is perfectly acceptable for her to be choking, vomiting, wiggling in discomfort and not be able to lay down. If however she has not put weight on he'll refer her to paeds.

I'm so tired and fed up I don't know whether to cry, scream or beat my head on the wall!!

AWTF I was just chatting to a friend of mine about this sort of attitude today, the 'as long as they are putting on weight' viewpoint is deffo not helpful for a frazzled Mum and a pained baby.
I've suggested that my mental wellbeing was in jeopardy a few times to get things moving! I found this line of attack effective and I genuinely was feeling a little twichy at the time!
Although GP is excellent.
I would change GP if you are not getting heard.

Oh no AWTF not the old putting on weight line. It's such a crock of shit. My DS was a case in point. He was putting on weight just fiiiine, thanks - suffering awfully but piling it on. And then he hit about 14 weeks and stopped feeding. He'd suddenly made the association between feeding and discomfort and so stopped wanting milk - he'd rather go hungry. This is not at all uncommon with refluxy babies. They can grow out of it. Or, they can develop feeding and oral aversions which can cause issues for years. Silly, silly GP. Attitudes like this make me so cross I could scream.

Hi YogaMummy2B & narmada I'm getting her weighed on monday, my midwife who discharged us last week is coming round before she starts work. Very nice of her I thought! Once I've got her weight I'm going to demand to see a different GP, I won't be fobbed off. If needs be I'll bite the bullet and go private, it'd be the same consultant that I'd see on the NHS but hey ho.
My DP stayed up with her all night so I could have a nights sleep and in my own bed too! Was pleased but strangley disappointed, DD slept for 4 hours solid in her bouncy chair, although he did say she was active/restless and squeaky. No vomitting quite a bit of foaming apparently but seemed quite content. I wanted DP to see what I deal with 24/7!

Will she generally sleep better in the bouncy chair AWTF? if so I would sleep her in that if at all possible. Hope you feel a bit more human after some sleep.

narmada She does seem much less stressed in the bouncy chair guess it's because it doesn't lay flat. It's not meant to be for sleeping but I figure if that's how she/we get some hands free rest then I'm going to continue and just give up trying to put her in the moses basket. Yes I feel much more human thanks!! morning came far too quick though!! DP starts 9 nights tonight so I'll enjoy the memory of sleep!!

Bit of a plea/requests here - is anyone out there getting good support?? I'm trying to get a webchat/reflux event off the ground so there is more understanding and we start to see less of the ridiculous (and very damaging) attitudes like 'they're fine if they're gaining weight; is it your first child; it's just a bit of colic; do you think you're a bit depressed' that so many of us have had to go through. If MNTowers supports the idea, they're likely to ask for a recommendation to host the webchat - our paed was ok but not brilliant, and we had to do most of the research. Does anyone have the name of someone knowledgeable and/or helpful? Also, if you have a mo, please drop a quick line on the thread below to register interest so MNTowers is more inclined to think there's an audience out there for such an event.
For those still battling through the dreaded first few weeks/months, hang in there, everyone tells you it gets better, and it does (our dd is almost 10mo and we have more good days than bad), but it takes a long time. In the meantime, take one day at a time and be gentle with yourself. You're doing a grand job and it's shit difficult dealing with a refluxy baby - don't let anyone tell you it's normal for babies to do this. Enjoy the sunshine...

Oops - thread here:
www.mumsnet.com/Talk/breast_and_bottle_feeding/1187448-Reflux-event

Narmada, need your advice. My LO was drinking up to 7oz of Aptamil comfort at each feed. We have now been on the pepti a few days and she has started to take only 2 or 3oz at a feed and either fall asleep or refuse any more. It took me about 21/2hrs to get her to have 7oz yesterday.
Symptoms seem much better on the pepti, however I'm worried she isn't eating enough. Did you have this issue? You mentioned flavouring? She is 9 weeks today, surely can't do that until weaned? Totally confused as to what to do. Thinking I'll give her comfort as next bottle as don't want her to get dehydrated!
Anyone else with any experience of this situation?