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.

Sorry, read over that, in regard to flavouring, I meant - surely I can't keep flavouring her milk until she is weaned? Not can't actually do it until weaning! Hope that makes sense!

Yes- DS wouldn't take pepti neat. And his pattern with new milks was exactly as you describe - ok for first few feeds, then tapering off. I flavoured it way before he was weaned on dieticians advice, and am still doing so, it's the only way I could get it in him. Some suggestions, probably in order of nutritional preference:

Vanilla extract (not essence, that's got alcohol and sometimes unpleasant chemicals in).
Banana nesquik - is milk-free but has high sugar content
Golden syrup - also obviously milk free but also has high sugar content.
sugar....well, pretty obvious, that one!

Now I sometimes use something called splenda - this is probably a Very Bad Idea but with the sugar I worry about creating diabetes or something, and he won't take it unsweetend and we cannot give him cow's milk formula so he would essentially starve himself.

I personally don't believe it's a question of habits - small babies are programmed to like sweet tastes like breastmilk and are likewise programmed to reject anything that doesn't taste right.

Maybe it would be worth taking a paedeatric dietician's advice before embarking down the flavouring path, though, rather than mine.

Quick update from us - here's our latest drug protcol:
Both my twins have it and we have been to the edge of sanity with it. They're 5 months old and have two totally different drug regimens as one has silent reflux and suspected cows milk intolerance and the other has "just" classic reflux.

Twin 1 is on:
Neocate
Gaviscon in EVERY feed
Domperidone
Omeprazole fecking tablets
Certirizine
Ketotifen

And my other lovely baby is on:
Enfamil AR
gaviscon in every feed
Domperidone
Ranitidine
Erythromycin (v low dose for 4 weeks)
And they're both on A v restricted diet with no soya, wheat, dairy or egg or milk.
To say it's been, and still is, stressful, is an understatement.

We're about 2 days into this new regimen and it's looking a bit better in some ways - DT1 is sleeping well which I've put down to the ketotifen, and his constant phlegmy sounding chest is resolving. DT2 hasn't been anything like as sick - he's keeping his feeds down IF AND ONLY IF he's had the domperidone.
We're weaning too, and they've been having just pear, apple and sweet potato. I can't decide whether they've got a bit of a tummy bug or it's the drugs, or the food, or the fact they're teething but they poo after every feed!!! They're still gassy and squirmy, esp DT1, and DT2 has fed gallons - 35oz!

I keep telling myself it won't always be this hard but all this, coupled with DC1 aged 2 cutting molars, is very tough.

Blooming heck BOH, I was thinking to myself the other day, I'm glad mine isn't twins! Never mind with another DC!!!

I have a question for all, do your DC sleep? Mine will not sleep during the day unless she is held. Therefore I get little time to myself and to get her to sleep at night is a bit of a production involving bouncing, holding, walking etc!

I thought the reflux was causing it but as things seem to be coming under control with the drugs, she still doesn't sleep. Once I have her down at night she is great, wakes between 3 & 4 for a feed and then back to sleep after the obligatory 1/2hr of holding upright!
Daytime seems to be too interesting for her!

i found my baby slept ok at night until she woke for the first feed and then didnt want to re settle,fortunately she always slept long periods at night so i didn get soem sleep. I persevered with the bedtime routine and she now sleeps for 10-12 hrs,she is 4 months,if she wakes early like today=5,i usually have to get up cos she isnt great at going back off.
She has never slept well in the day,cat naps in the pram or swing really with "encouragement" I think they never learn to self settle due to being held after feeds.

Had an awful weekend DD very sick on changing mat, milk and very sticky/foamy saliva to the point of her going totally rigid unable to breathe. I was having to pull it out by hand, the scariest incident so far.
My lovely midwife came this morning to weigh her, yes she's put on weight. and actually witness an epsiode of "refluxyness". Freaked her out, she left and phoned everyone she could think of, 1 hour later we're at our hospitals children's assesment unit with an SHO and nurse waiting for us. We then saw a consultant who is "suspecting" severe reflux and now we've come home with:
(more) infant gaviscon 1 sachet 3 x day
Ranitidine 0.4ml (6mg) 3 xday
Domperidone 0.7ml (0.7mg) 3 x day
And a consultant review next Wednesday. We also have 24hr open access to the ward if we have any problems.

We were in and out of hospital in 1 1/2hours, reassured that it wasn't all in my mind, and to hear from those in the know that the whole "it doesn't matter if they're putting on weight" rubbish is just that, rubbish!

I'm getting in touch with my GP who refused to do anything to help her and give him a very large piece of my mind!

Does anyone have a rough idea of how long the meds take to work and if they've had any problems with them.

I'm gutted at 4 weeks old poor little thing is going to be on meds but I'll try anything that'll help.

AWTF really, really pleased you got some help at last, not in the nicest possible environment but that is great you were seen so fast.

Ranitidine I think should begin to lessen symptoms pretty soon but if there is oesophageal damage from the acid it may take a while to heal and for it to stop hurting so much.

The one thing I would say is if it is showing no signs of working by the time you see the consultant, insist on another type of drug - you want a proton pump inhibitor like Omeprazole or (my preference- far easier to administer) lansoprazole fast-tabs/ oro-dispersible tablets.

Please please please do ask them again also about cow's milk protein allergy - it is surprisingly common with low estimates of incidence about 7% of babies.

Hope your new regimen works. feel for you.

yoga I think that even when the reflux is under control there are likely to be habitual behaviours to address regarding sleep. How long does it take her to settle if you put her in her cot (try on her side, but sleep her on her back of course) and pat her bottom?

Oh, it's all gone tits up again!! The medication seems to have stopped working again, so doubtful of much sleep until we see blinking Paediatrician again.
Omeprazole liquid not all it's cracked up to be, the effing fiddily tablets seem to work far better! So back on those today anyone any tips on administering them? I dissolved and squirted about 1/2 into her cheek but she was having none of it. The rest I had to spoon in, in sugar water (which I'm not hugely keen on!) The wee balls are so difficult to get to stay in.
I'm wrecked, how bloody long does this nonsense take to get stabilised? I am at my wits end! This is the third rebound we have had and we have been trying to sort it for 5 weeks now! I'm totally lost!

I reckon the not eating Pepti was more to do with the reflux flaring up again more than anything else.
So she is on -
Ranitidine .7ml x 3 per day
Losec 10mg once per day
Started on Aptamil pepti

On the not sleeping thing, she doesn't settle ever if I put her down, not once in 9 weeks has she settled without me bouncing her or walking with her or putting her on my chest. If I try really hard she will stay asleep in her cot for 10 mins tops during the day. At night I have to pace the boards for at least 1/2hr to ensure she is out before she goes down.
As I said - I'm wrecked! She has just gone down (22.45), can't be certain she will stay asleep, been trying to get her over for the night since 7pm. She usually sleeps from 11pm to 8am with one or two feeds in the night, lasting up to 1/2 - 3/4 hr per feed!! She will normally eat at 10pm or 11pm and then go over after that.
She is having approx 8 small bottle feeds a day.
I need a holiday!

YM, mine are 5 months and in the early eve they're with us in their bouncy chairs or Ambys, and they just dose. We found it an exercise in futility to try and force sleep so we just keep them downstairs until we go to bed. I also prefer this because of the Sudden Infant Death guidelines that all sleeps should be in the same room as someone else.
Re omeprazole, I read a clinical paper about its efficacy when made up in sodium bicarbonate and I think you lose some of the enteric coating of the little balls. I put it in a syringe, and put some pear purée in and let that break down the outer bit, and then squirt it in. We're weaning but even before then I used it as all the gaviscon they're on can constipate and the fruit helps to keep things moving.
Most of the drugs are dosed on weight so if they suddenly stop working then you might just need to ask for a dose recalculation.

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.
yogamummy i just cut and pasted that from my post a few days ago,if you want more advice ask cos dd takes hers beautifully seems to enjoy it in fact I also found even when the meds were working well there would be periods when she was suffering despite them.

awaywiththefairies I aggree with narmada,it was her who origionally suggested omeprazole, but the ranatidine should give at least some imediate relief. Dd still needs adose of ranatidine now and then if things are bad.

How awfull that you werent helped initially,i was lucky cos dd has a cleft palate and so was well managed but not before she has aspirated some vomit and got pneumonia!
i remember so well the horror of giving her medication at 6 days old,i flet so guilty,but you have to remember its to help the baby and not make your life easier and also long term damage can be done if not managed properly.
Good luck.

ledkr I'm not sure what you mean by Dom peridone?! Am I being silly? Also to get Neurofen syringe? Do I just buy baby Neurofen? Does the tablet actually fit in the syringe? All a bit confuddled!! Sorry, bit crap at this Mummy business!
She was much better night last night after only 1 dose of Losec Mups. Slept through from 11pm to 6am and then drank a full bottle 6oz. She has just had her second 6oz bottle with very little crying after and one wee dose of ranitidine.
Holly are the Ambys good? I have been considering getting one for use in the living room and as a travel cot (would it be too big to transport on a plane? Going to a wedding in a months time and then on holiday at end of summer.) She is a big girl, long and weighs nearly 14lbs at 9 weeks. Worried she would be too big for one.

BTW AWTF, what an awful situation! I stress about giving her meds, never mind pulling stuff out of my LO's mouth.
Is Domperidone another medication?

YEs the Amby is amazing! I had one for DC1 and bought another to use with the twins. If they move it bounces so they settle themselves! They fold up into a little bag - we took ours to hospital when DS1 was born.
And domperidone is another drug - it helps them to keep their feed down.

Thanks Holly. So Amby would be cool to travel and sleep overnight? I have an angelcare movement monitor and am really paranoid about SID's heard a few mixed reports about the Amby and sleep position.
On reflux news, the GP has decided perhaps she has a serious case, due to the dropping feeds so is now in contact with the hospital to seek advice/help. Will get back to me within 24 hours. GP much better than private Paediatrician.
Also looks like we are going for another day with no sleep during the day. Not normal for a baby only to sleep from 11pm - 8am?! No naps or doses during day.

Sorry yoga Mummy i thought she was on it.Yes its another med,used in adults as an anti emetic(sickness) but in children it speeds up the digestive process. Yes i bought nurofen just for the syringe and it really helped,i was told i could use a little pear puree to give it but she couldnt deal with it. Check with others but i wonder if you could use a tiny drop of baby juice or something,dd seems to really enjoy it smacks her lips and everything haha.
The reflux website "crying over spilt milk has lots of advice re giving the meds too. Sounds like your lo had a good night tho.
Never used the ambi but she does love her swing and hates her carseat.I bought a brightsparks sling too and found it very usefull if i fed her when out then carried her in that for 30mins before back in the pram,saves sitting there for 30mins.

Hi all, went to see cardiac pediatrician this evening (obvs unrelated issue, all ok) and he suggested that it would be ok to give the Losec tabs in some baby juice to flavour, pref something slightly acidic like apple. Tried the neurofen syringe (how do you get tablet to dissolve in syringe?) and ended up just using a plastic weaning spoon. Dissolved the 10mg tablet in 20ml of baby juice and spooned it in. She was smacking her lips in delight! Much easier to deal with than heavy duty screaming when I was syringing it in.
Hopefully 10mg tablets will do the job.

right,i take the syringe apart and pop the tab in,i then replace the plunger and suck up a small amount of water (juice in your case),lie it on its side and leave to disolve,i then put my finger over the hole and shake it,sorted. Im so glad you are making progress. I you are ok with the spoon tho use that.Its effectiveness increased for months iyswim.I keep her up for 10 mins now.

Another mini update - my boys were prescribed ketotine, which I think is an antihistamine, as my cons thinks that there's an allergy element to all of this. Anyway, it knocks them out cold.

Just saying...

Ledkr thanks, would rather use less juice, so will try syringe again tomorrow, was not being patient enough!
Holly your Cons sounds like he is well versed in dealing with reflux babes, mine was very disinterested.
Hubbie and I were chatting about this today and we thought if there is a BF counsellor in hospital with 30% of women in the UK BFing then surely there should be a reflux counsellor too since it is reported to effect more than 20% of babies with many more being diagnosed with colic, when it is actually reflux. I would suggest many women stop BFing due to reflux (myself included) and perhaps with earlier support I would have continued. Incidences of PND and domestic violence increase. It is totally crazy that the knowledge/support regarding reflux is so varied within the medical community! Sorry rant over! :)

I couldn't agree more. Me and my husband have been at absolute breaking point. It's only that we threw ourselves into a course about marriage, that we haven't killed each other. My parents have put their life on hold to help us, and we both probably have some sort of depression.
Thank God my health visitor is on the ball. She kept a close eye on all of us, and referred us to Homestart so I had a nice lady come in for 2 hours a week to mind my 2 year old. We were lucky enough to be able to have a night nanny for 2 nights a week otherwise I don't know what we'd have done. We were getting NO sleep, plus a toddler!
It's getting better, slowly. x

Just a quick question for those who give domperidone,rantidine & gaviscon.
When do "you" administer them?
Pharmacist only told me that domperidone is given before feeding.
When would you give the ranitidine? Before or after feeding?
The Gaviscon box says after feeding.
Had a look on the crying over spilt milk website and it says gaviscon should be given before feeding and ranitidine should not be given within 2 hours of Gaviscon. She is feeding on demand so I guess I'd alternate those 2 meds.

Yesterday was our first full day of meds, of course you hope for an instant miracle, and that didn't happen. What did happen is that she appeared to scream most of the day! She has never done that before. I've been lucky she only ever cried when she wanted feeding, you can tell when she's uncomfortable or in pain as she wiggles/arches/very restless and screws her face up and has a little whimper but each episode usually passes quite quickly. Yesterday she took ages to console, not even a boob would settle her.

narmada I will definately be asking next week about the cows milk protein allergy

Our Paed said that it's important to give the domperidone before feeds, ideally 20mins, but even if it's 5 mins that's better than nothing. The ranitidine he just said 4x a day, and the gaviscon goes in their feed, but when I was BF I'd try and give it just during - sneak in the syringe and then back on the breast. I remember being nearly hysterical with worry that I was doing it all wrong, I had charts and schedules (and with twins they fed at different times and are on different doses!) but the but that seemed to make a big difference was getting the domperidone in, in good time.
The dose is wright related so the second your baby puts on weight, you're effectively under dosing, so it's v important to get the dose altered, or they rebound. I learnt the hard way! Hope that helps!

AWTF I was told Dom before feeds, and the Ranitidine just 3 times a day not necessarily before/after feeds etc. Ranitidine is basically Zantac, so it doesn't act on the feed before/after it, AIUI, it works on the system so is meant to be spread out throughout the day.

we have 3 doses and I do 7am, somewhere between 12 and 2pm, and 7pm. I have found it hard to give a dose and not feed though, only because I think DD assumes syringe should always be followed by bottle and gets very unhappy if it doesn't!

If your DD remains unsettled, keep an eye on the Domperidone as some people have said it can cause tummy cramps, which might upset them just as much as the reflux itself! I stopped giving it because DD wasn't actually being that sick and it was making her really hungry so she started waking for extra feeds in the night.

D

Thanks for the advice BagofHolly & Deliaskis :)

Hi delias i have stopped fussing about the between feeds thing,like yours my dd thinks it must be milk time when she tastes anything,i just try to do it on an emptyish tummy and then distract her for as long as poss after.