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.

Dear All,
thought it was time to step back onto the world - or at least this thread! The antibios knocked us for six. Things had been going well but either the throat/chest/ear infection or the antibios, or both, set us back a few weeks. Weaning is going well, I guess. We're struggling to get onto anything 'lumpy', so pretty much restricted to pureed veg. She can also tolerate yoghurt so we're getting through a few of those too. Even so, we're also on a laxative daily (not sure why lactulose as opposed to domperidone to aid transit??), with some success, although we did have to have a strip wash in the sink of a public loo on a day trip to celebrate Mothers day!! DD is 8 months now and weight gain is fine - she's a silent refluxer, so not sick, just thrashes around, arches, headbangs and screams when it's bad, so still on stage 1 stuff, whihc doesn't seem to upset her as much/often. Trying not to let it bother me. The nights were much better - three wake ups is a good night for us! But we're back on 6 or 7. DH can settle her but it takes ages and she cries a lot - much quicker and easier to just plug her in, but not sure if we're doing her any favours. She'll often go straight back down after a quick slurp but sometimes needs a hold/shoulder jiggle for a while. Not nearly as long as it used to be though, to feed or to hold.
Never heard back from MNHQ about a reflux event - now things are a little better here I'll try again and see if we can get something off the ground.
Best wishes to all - enjoy the good times (or less bad), and hang onto your hats when the going gets tough - there are others doing the same and one day things will get a little better...

Wow - got a reply from the Towers this time (don't know what I did last time)! See below re next steps...

Hi
as some of you know I have been approaching MNHQ to ask if they would support organise a reflux 'event' - maybe a webchat as a TV programme (my first idea!) seems a bit ambitious... I'm thinking maybe borrowing an hour from one of the paeds or consultants who 'gets it' and has been really helpful/supportive to any of you, whether by helping your LO or by helping you to deal with the 'stuff' that goes with parenting a reflux baby. Don't know if that's a crazy idea?

MNTowers has asked me to start a new thread to see if there is sufficient support for this idea, and if there are suggestions about the type of event or names of experts we might want to approach.

If you think it would be helpful, please add a message to the new thread - called reflux event, and ask anyone else to do the same - they don't have to be a reflux survivor!

quick help if possible - got prescribed Ranitidine today for my 13 week old dd, weighs just under 5.5kg. Pharmacist forgot to put the dosage on the label but I know we are supposed to give it three times a day and that each dose must be less than one ML because the doctor specifically gave me a syringe which is graded in fractions of a ML. I can check with the doctor tomorrow, but meanwhile I want to get her on this med straight away - can anyone tell me what the dose is? The leaflet in the box says 4-8MG per kg which is quite a spread, then you have to work out how many ML for each dose (150MG = 10 ML). If I give the minimum dose of 4MG per kg then that would be 4 x 5 = 20MG per day. Does that work out at approx 1.3ML per day? So about .4ML for each of three doses? Curse that pharmacist.

Haven't posted in a while, both me and DD have had a series of illnesses, cut 3 teeth (DD) and gone back to work so hectic hectic times.

MacMomo - 0.4ml sounds about right from what I can remember at that weight. tbh I would wait until tomorrow and go slap that pharmacist as Ranitidine is very weight sensitive. Also I remember begging asking to doctor how long it would take to work once DD started taking it and she said it could take up to 7 or 10 days to fully 'kick in'. Not trying to depress you, but worth bearing in mind.

ellnol - any chance of a link

Good news here. Finally at 10 months DD is starting to wean off her meds, well the Ranitidine anyway. Having said that today has been a bad day, have had a few recently so may have to delay weaning from the Domperidone. Still it feels like maybe just maybe she will be free of this awful condition soon. Especially as she is now old enough to grab the syringe of meds and 'help' by guiding it into her own mouth. Find that a bit

Fumbelina (and anyone else!) both my twins are on domperidone and ranitidine. I haven't noticed any difference at all with it apart from one baby (E) seemed to have terrible screamy colic which I put down to my giving two domperidone doses close together. Other twin (B)is on Neocate and seems happier and isn't screaming/arching but seems fussy and uncomfortable. What can we expect with these drugs and when? E seems happiest on aptimil and gaviscon and I don't know whether to persevere with the domperidone and ranitidine.

Also, the domperidone is 4 times a day 20 mins before feeds - how on earth do you time that? My boys feed roughly every 4 hours, but go from sleep to hysterical in minutes so I can't wait 20 mins for the domperidone. What should I do?

BagofHolly How long have your DT's been on the Domperidone? I think it took just over a week for us to see any improvement and even then on 'bad days' we used to give Gaviscon as well. Even now we still have bad and good days. The screaming could well be as a result of a sore throat from the vomiting. The Ranitidine will reduce the amount of acid produced so no further damage will occur, but it does take time for the throat to heal and stop hurting.

I have found that 2 doses close together can give tummy cramps. Think the info I read on it said not to give doses any closer than every 4 hours. tbh although the prescription says 20 minutes before food (which is always interesting at 3am when lo has just woken up hungry ) we found that it worked better, and was easier to remember where we were if we space out around 24hours. So we went for 6am, 12pm, 6pm and 11pm for the Domperidone. and 6am, 2pm and 11pm for the Ranitidine. We used to dreamfeed at 11pm before we went to bed so juggled the logical times to fit that and whenever feeds seemed to fall within an hour of our 'schedule' which seemed to work quite well.

In the very early days when we were doing the 20mins before food, it was poor DH who distracted DD for the 20 minutes as the smell of milk on me sent hungry DD into total meltdown and just made her wind, colic and reflux worse as a result. I think he used the time to very slowly change her nappy, do colic massage etc. Over time she seemed to be able to take the meds without even waking up which helped with the timing of the dreamfeed.

OK - bit of a technobiff, but this might work as a link...
www.mumsnet.com/Talk/breast_and_bottle_feeding/1187448-Reflux-event

Can anyone recommend me a brand of bottle and size of teat to help with reflux baby (4 months old); her reflux is much worse after a bottle feed than breast feed, currently using avent with size 1 teat. many thanks.

Are you sure it's reflux and not a cow's milk protein intolerance if you're giving formula in the bottles? The symptoms are almost identical.

If it's just plain old reflux, I would go for an avent variflow teat with a feed thickener like C& G instant carobel - not gaviscon, as it bungs them up.

Yes - have been off milk proteins for 3 weeks now, never fed her formula it's just for one bottle of EBM a day. This one bottle seems to take her reflux symptoms from moderate during the day to unbearable screaming hours at night.

Thanks for the recommendation, will look at the variflow teat.

Hmm, that's strange then. Could it be that she's having far more in the bottle in one sitting than she would take from the breast in one go? My DD would sometimes drink a full bottle even when I knew she couldn't be that hungry. The thickener might work well in that case, because she'll have to work harder to get the milk out of the teat. Do you give a bottle so you can go to bed/ have a break?

IIRC, breastfeeding initiates peristaltic action in the digestive tract - e.g., helps food through the system - in a way that bottlefeeding doesn't. So it could also be that the milk's hanging around longer in her stomach with more opportunity to reflux. Something to do with the sucking action I think. At least that's what a lactation consultant told me once.

Any advice please, myself and my GP think we have a silent reflux baby 6 weeks however I'd started her on the comfort milk before the diagnosis and she's really struggling to drink her normal amount by at least 60ml per session this has a knock effect for her sleeping. She's now on Gaviscon liquid but he also gave us sachets which you can't mix with comfort milk GP thinks I should stick to the comfort milk for her tummy (bad bottom wind, sore tummy) but she's struggling to take on the milk fights the bottle constantly therefore can't get the milk into her. Did any of you combine the two to start with I'm conscious that I'm trying a couple things at one go and I'm getting really confused?

If she's refusing to feed I would suggest that gaviscon's not going to cut it. Something like ranitidine might be better. It could also be a cow's milk protein issue - you could ask the GP for a trial of a hydrolysed formula to rule this in/ out.

Hi all,

Haven't checked in in a while, but hope all the babies are doing a little better.

scubajules - we had the bottom wind and sore tummy and reflux. Turned out to be a wheat intolerance I discovered much further on (when started weaning) Not saying it is wheat, but maybe intolerances are worth looking at?

In the meantime osteopathy helped temporarily for us, but I believe not for everyone.

Announcement - we are weaning off the Ranitidine. Down to just one dose per day [busmile]

That is all

Hi Narmada, yes I think you were right about the quantity of milk taken from the bottle being a contributing factor. Improvement from giving less (3oz now rather than 4) and then walking her around upright for 20 mins. I give the bottle because my breasts are unreliable at that time of day - sometimes she can latch properly and suck for ages with no let down which spells screaming disaster. And even if let down comes I'm lucky to get half a feed for her, she just sucks and sucks getting more frustrated. I pump for the bottle at about 9 pm the night before and then again first thing in the morning.

I should say that after the bottle I latch her as well so she can decide if she wants more or not and have the soothing sucking.

Marking my place as this thread is really helping me get through the long evenings with sicky shouty DD2.

Well DD (10 wo) spent yesterday in paed ward as we'd had a terrible weekend of inconsolable screaming, which seemed to be reflux related, and she was starting to refuse feeds too.

Now starting on ranitidine, domperidone, and continuing with Gaviscon.

Feel sad that tiny baby needs all this stuff to just not be in pain. Also feel sorry that I don't seem to be able to enjoy this time, and am wishing away the weeks/months till she gets older/bigger and this stops being a problem . I resent that I can't have the experience that other mums have - feeding peacefully, happy baby smiling and cooing and playing etc.

DD seems to have a lot of the symptoms of silent reflux. Not much vomiting at all really, but arching, screaming in pain, sometimes fighting feeds, constant hiccups, white tongue, possets curdled milk, won't settle to sleep at all in the day, tongue poking, lots of what I have read on here.

Saving grace is that she actually sleeps really well at night, goes to bed at 7, sleeps till dream feed at 10.30 then sleeps till 7 ish, so we are really lucky there, I am just really sad that she is so rarely 'happy'. When she is awake, we probably have a total of 30 minutes in 24 hours that she is not sad/upset because of the discomfort.

Hopefully the new meds will make a difference. Back to consultant in 4 weeks for a review.

Paed advised not to wait till 6 months to wean if she is ready earlier (after 16 weeks natch), but I am worried that as she is small, she will take longer to be 'ready' than bigger babies?

Dx

Just had to share this gem from my gp, who doesn't believe in reflux and prescribed ranitidine only to shut me up: the ranitidine hasn't worked so DD doesn't have reflux. Was so angry.

My ds is 7w and I think he has reflux. Have an appointment with the Paed on Wednesday. It's so depressing to find that feeding is causing him so much discomfort (we are ebf). He squirms and cries and arches his back during feeds, it is making me feel awful. I have already limited my diet to dairy, soy, egg and wheat free and I think it has helped slightly. I'm too scared to reintroduce them now in case it makes him worse. I have started giving him a dummy just so he can comfort suck when the breast causes him more pain. I just wish he was a happy, pain-free baby.

Knockedup, have you ruled out oversupply as a cause of the discomfort? Might be suggested if there's a very rapid weight gain, green frothy poo etc, and not something that paeds generally tend to consider IME. Otherwise, hope he or she helps with the reflux - they are usually pretty good.

MacMomo I don't think we'd be surprised by any of their little gems anymore having read all of this thread. I guess that's why we do really need to have an event on mumsnet like Ellnlol is trying to set up (or my national campaign that still sadly exists only in my head - and will stay there while we now go through DS2 having chicken pox!!)

The real genius part was that he said we should keep on the ranitidine. But you just said she doesn't have reflux? Oh well, won't do her any harm he said. The same doctor who originally said an infant shouldn't take antacid. So - she doesn't have reflux but should take medicine not suitable for an infant. Not seeing any contriduction in your advice? No, of couse not, I'm a first time mum who just panics...

Hi. Wondering if someone can pass on any tips or techniques for coping with reflux?

Our 16wo has always vomited quite a lot since we put her on formula. We have been using staydown milk which improved the situation for a while but it has recently deteriorated so the GP has given us infant gaviscon and we were planning on changing formula and starting this in a few days when the current tin of staydown formula is finished.

However, in the last few days DD has started screaming a lot before feeding and has refused to take the bottle for anything from 10 to 45 minutes. She's arching her back so must be in pain from the acid. This is a new development as previously she just vomited. Once I manage to persuade her to take the bottle and stick at it, she calms down but she is taking less and going less and less time between feeds.

I can sometimes calm her by giving her a bottle of water and doing a sneaky switch for the milk but sometimes she's just inconsolable so I'd be grateful for any tips to help calm her and persuade her to take the bottle sooner.

Also, does anyone know if the gaviscon will help with the acid because it seems to me that if it just thickens the feed then it won't help this symptom.

Quick update from us - I lost the thread! We've been back to the paediatrician twice and he also does phone support too, and we've got:

Baby 1:
Ranitidine
Domperidone
Gaviscon
Enfamil

And baby 2:
Ranitidine
Gaviscon
S
Domperidone
Omeprazole
Neocate

It's a royal faff making all the feeds up etc but they're now both happy little gigglers instead of wailing screamies. The omeprazole has made a big difference and we've also started weaning, at the recommendation of our paed. One baby is still very sick, even on enfamil unless he has gaviscon in there too, but he's happy enough. We seemed to have turned a corner and I NEVER thought I'd say that. It's been 5 months of hell.