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.

Hi yogamummy Reading some of the stories on here makes me doubt we do have reflux, but she does have some of the symptoms & surely something has made her change her sleeping so dramatically!?

She usually cries after a feed (no screaming though) but usually stops once i've got a (wet) burp out of her.

I'm off to the supermarket today to buy some non-dairy stuff.. I'm not sure how I'm going to cope without my chocolate though!!

Hi, can I join too? Been watching for a while now and have found some
' comfort ' and great info from this thread.
DD will be twelve weeks on Sunday and has been in hospital three times. The first at just under six weeks where she was diagnosed with CMPI and prescribed Aptamil Pepti 1 and Infant Gaviscon.
The second time was at nine weeks where she was admitted through A&E after screaming and refusing to feed. She was then started off on 0.27ml of Ranitidine and switched to Neocate. Came home and things were fine for a couple of days and then the screaming and refusing feeds started. Went back to GP who increased her dose to 0.4ml. Again things were fine for a couple of days and then the screaming/ fussing/ arching back started again.
On Saturday she refused to feed as she was in so much pain and was admitted to hospital again. However, she then fed and settled and by the time she was seen by the registrar and consultant she was quite happy and had fed and they discharged her without discussing changing her meds.
She came home Sunday and took her feeds ok for a day or so and then started again. She should be having about 600ml a day, according to her consultant, but some days I struggle to get 400ml into her. I dread every feed with her and I am so happy when she takes it without being in pain.
Her weight gain is also a concern - she was six pounds born and now only weighs eight ten, so is now on the bottom centile. We have a consultant appointment next week and I have worked out that she needs to get to about nine pounds by then or will have fallen off the charts.
I have been keeping a record of her feeds/ behaviour which I am going to take next week to the appointment.
I guess what I really want to know is should the neocate be working by now and should they be looking at a change in her meds? My thinking is that she is not really cmpi but just has silent reflux and would benefit from being on different medication?
In all other ways she is doing what she should be, smiling, cooing, trying to roll over.
Any advice would be great xx

Hi sbeth I'm relatively new to reflux too as DD is 11 weeks old but wanted to share experience. I really feel for you as I couldve written your post myself a few weeks ago with regards to feeding. My LO was put on ranitidine and it worked great for a few days and then feed refusal screaming would start. It's heartbreaking. DDs dosage kept being increased until it was at max for her weight (1ml three times a day at 5.4 kilo in weight). I read about omeprezole which is a different kind of antacid in that it blocks acid production rather than neutralising it and asked my gp to prescribe. I have to say so far touch wood it seems to be helping. DD is still very slow at feeding (and seems to be having slightly less than required intake but that could be down to the taste of neutramigen!) but the main thing is the pain seems to have gone. IMHO I would push to change the meds. I think for some babies rantidine just seems to wear off too quickly. Hopefully someone will have answers re neocate - I know my LO doesn't seem to like neutramigen compared to aptamil. Good luck and let us know how you get on. It's a very stressful journey but I've found this thread a great support .

Thanks for your advice. They were talking about the omeprezole last week in hospital but in the morning when the consultant saw her this was never mentioned. I will be pushing for this next week ( if I can make it till then ). I have also read that ranitidine can work for a couple of days but then can stop having an effect altogether. Like you, it seems to work for Aislinn for a day or two and then wears off. I am scared to stop giving it to her in case it is having some very small effect and all hell breaks loose.
Re the formula, my sister tried it yesterday and she says its similar tasting to the bile you bring up when you've been sick and got nothing left in your tummy.
She also seems to have better days than others, which I am so grateful for.
Is the omeprezole weight dependent or is it a case of trying a certain dose and seeing how much effect that has?

sbeth (and others) sorry not to be able to post at length, sounds like a difficult time been had by all :(

What is the reason for thinking CMPI rather than/ as well as reflux? Does she have eczema, constipation, stomach cramps etc? I think it takes a good couple of weeks on neocate for the difference to be apparent if it is primarily CMPI. Neocate does taste absolutely awful and it's difficult sometimes (like in my son's case) to ascertain whether it's the taste or discomfort that's making feeds stressful. If no joy after 2 weeks on neocate, I would definitely press for omeprazole or lansoprazole (easier to administer IME) as they are far more effective than H2 blockers like ranitidine. Ranitidine is unlikely to be sufficient for severe reflux. Frankly, I am amazed they haven't suggested it before now given your baby's been hospitalised several times. But perhaps they want to try the non-medical route to rule out CMPI first, and there is a risk that if you try too many things at once you won't know what, if anything, is making a difference.

Regarding required intakes, the stuff on the packet is only a guide - the real thing to take stock of is weight gain. This will give you a measure of whether your baby's eating enough.

Sorry, to answer your question, I think omeprazole and other drugs in this class are dosed on a weight basis, but there is quite a wide dosing range and you may need to experiment a bit to find the right one. It's really important to give omeprazole on an empty stomach, at least 30 minutes prior to a feed, although this is sometimes tricky I know. No-one told us this, but we did our own research and noticed a huge change in DS when we started dosing him first thing in the morning rather than after the first feed of the day.

loopymummy I think Green & Blacks dark choc is dairy free!

Thanks for the info on the green poo/fast let down. She does chomp on my nipple sometimes, but it's always about 15mins into the feed & i thought your let-down happened in the first few mins? We tried some of the different feeding positions anyway!

I spoke to a HV today who agrees it sounds a bit refluxy, but not quite... She's suggested i try IG over the weekend, then go to a clinic on Monday to get her weighed & go from there.

DD2 started foaming at the mouth today which she hasn't done before...

The first time she was admitted at six weeks was because she was in agony with stomach cramps and her bm's were disgusting, really offensive smell and very dark green. She was on Aptamil Comfort at the time so consultant diagnosed her with the cmpi and put her on Aptamil Pepti 1 and IG - saw some improvement and her stools became a lot firmer. She was still fussing/ screaming on her feeds so when she was admitted again she was put on the Ranitidine and the Neocate.
When she was admitted again last weekend the first doctor she saw was pretty sure she would be put on omeprazole but then by the time she saw the consultant she was settled and had taken a feed.
I think you're probably right in that they're trying to rule out things non medically first and I am hoping that by the time we see the consultant on Thursday ( counting the days ) she will have been on the neocate nearly four weeks and we haven't really seen any improvement, they will seriously think about putting her on the omeprazole.
In the meantime, the GP is now refusing to prescribe the neocate, so yesterday was spent making frantic calls to the hospital hoping they would prescribe it, which they did. GP didn't want to know - said they are not licensed to prescribe it for children under 1 year, even though they have prescribed it for the past two weeks. Hopefully we will get this sorted on Thursday as well.
On top of that she had a bad afternoon, refusing to feed from 1:30pm till 9pm. So far, so good today - she has taken all her bottles with hardly any fussing.

sbeth your GP is talking complete nonsense about the neocate - the reason they don't want to prescribe it is it costs an absolute ton (over the counter price is around £30) and a tin lasts about 2-3 days. Either that or there is some sort of misunderstanding on their part.

I really hope you get it sorted on thursday, non MN hug :)

Dairy-free treats, now, I know a thing about this as I have been looking out for things for DS now he's eating some food!:

Fig rolls (but check no whey - some brands have whey powder)
Shrewsbury-type biscuits (again check no whey, but usually OK for some reason)
Green and Blacks and Lindt ultra-dark type chocolates
Freedom (fake) icecream (waitrose sell it) - no soya either, so good if soya a problem too.
Most crisps

Hi all, hope things are getting better with your LOs.

I was on another thread when yoga suggested my DS could have silent reflux and some of his symptoms seem very similar to what I have read on here so I thought I would ask to join and see if you think it could be.

At around the 3 week mark he started massive amounts of crying and drawing his knees up as in "colic" but thankfully this drawing up of knees stopped when I put him in a routine. The crying continued but Infacol did seem to help and we persevered under the impression that it was colic and there was not a lot we could do.
A few weeks later he became a fussy feeder in that there was lots of crying at the start and rejecting the bottle until eventually you got him to take the feed. Generally around 3/4oz at a feed but he didn't eat more often as a result of less. Every now and again he would have a good few days where the feeds went up, I guess for his growth spurts.
I gave in and asked a HV when 10 weeks old and she suggested cow and gate colic comfort milk and changing his bottles to ones with narrower teats (he has a large strawberry birthmark on his upper left lip which has swollen his lip and so we believe it could be messing with his feeding). I did both these things and had a blessed week and a half/ 2 weeks where he stopped fighting every feed and was a very contented little baby. His feeds went up to 6oz and he started sleeping all the way through the night.
Just over a week ago it started again with the crying feeds and now he has very unsettled and crying periods with back arching and sounding like he is in pain, you can't put him down, as soon as you do he starts screaming for you and his feeds have dropped down to 3oz again.

He is 14 weeks old and yesterday he had 15oz during the day and then cluster fed (I think that's the term) from about 9 till midnight with lots of little feeds. Then this morning he had 2 feeds of 3ozs and would only been fed by me. He then went through till about 4:30pm without food when he was delivered to his grandma for the night (I'm having a well deserved night off to de-stress) and fed with her.

Any help or ideas would be much appreciated :(

Nice to meet you all

Hellitops, welcome and :(. Sorry you've been having a difficult time. I would say it definitely sounds like something is not quite right. You're his mum, you know him best, and if you feel something's up, well, you are probably right!

What have they said about his birthmark? I think these can interfere with feeding in a minority of cases if they're on the lips/ mouth, and if so, can be treated. I would ask the GP about this first, say you think it is interfering with feeding, and can anything be done about it?

Is your DS putting on weight OK or is he falling down the charts?

It's hard to say whether or not it's reflux from what you describe - have you tried the GP as opposed to health visitor? You may have to be quite forceful as in my experience some GPs are apt to dismiss any concerns about feeding unless your baby is actually classified as failure to thrive, even when it's obvious to the parents that something's not right.

One thing to consider in the meantime is whether he might have an issue with cow's milk protein (not lactose). This intolerance has almost identical symptoms to reflux; if eczema, wheezing, etc., are present too, then cow's milk protein intolerance is high on the list of suspicion.

Reflux can be treated with effective drugs if it does turn out to be that. Hope not, though.

hellitops, I have just been thinking about the mechanics of feeding with a large birthmark on the lip - if the birthmark's getting in the way, do you think he may be finding it difficult to get a good seal around the bottle teat? He could be swallowing a fair bit of air as a consequence if so.

Also, if you're using comfort milk and normal age-appropriate teats, he may be finding it quite difficult to get the milk out as it's a bit thicker isn't it?; this might be even more of a problem if there's something interfering with his ability to feed/ form a seal around the teat. I wonder if he might do better with a faster flowing teat or a variflow teat? Not sure whether they do these in narrow neck but avent definitely make a variflow - it's what we used when we were thickening DS's milk to prevent reflux.

Can I ask for some collective mumsnet wisdom?

I have an 8 week old DD who a couple of weeks ago was showing all the signs of silent reflux. GP prescribed gaviscon and I went on a dairy free diet (ebf). Thought the gaviscon was working so went back on dairy last weekend, all hell broke loose so back off it as of last Monday and huge improvement since then.

I thought DD was just difficult to get to sleep but as of yesterday she started taking a dummy and it is now really obvious that after being happily asleep (ie floppy armed etc) for 10 mins she then wakes with a start and I have to resettle her - this goes on and on during the daytime.

Nightimes have been better, she normally does three hours at a time. We have been a bit lax with the gaviscon the last few days and have only been giving it with the bedtime feed assuming it to be dairy related and not reflux, these are now her 'normal symptoms':

Arches back when finishing a feed but a very good (very quick, strong sucking) eater,
Settles fine then wakes up after 10 mins but not crying
Wet nappies that smell like battery acid
Explosive poos
Extremely hard to wind

I started to think it could just be wind but after a great start to the nights sleep on 5 hours(!!) and no gaviscon, we have just had a horrendous time from 4-8am of projectile vomiting through nose, writhing, arching back, congested nose etc. I definately haven't had anything dairy related yesterday as I made all the food myself but this to me definately seems like reflux. Any ideas why it might just be worse in the early hours of the morning and have been ok the last few days even without the gaviscon?

Thanks for bearing with me - I just hate seeing her in pain and unsure whether to push for reflux meds from the doctor or whether this could be something else entirely. She is also on colief at the suggestion of the hv but it seems to be doing nothing..

hi narmarda

the health visitor thought the crying and difficulty feeding and everything were to do with him having trouble making the seal round the teat. I don't know if it was changing the bottle and teat size and/or the comfort milk that helped as I did both at the same time, and it worked for a little over a week and thenn started again. When it started again I had the same thought about increasing to fast flow teats, especially as he was falling asleep a lot during a feed. However, it was soon aparant that they weren't working and were in fact making things worse. He started with his very explosive and painful farts and was crying and struggling with every feed. I switched him back and it calmed down a bit.

we've switched bottles and teats again to ones even narrower (no more after this) but I've noticed he still can't get a tight seal around it and so far it doesn't seem to make much difference. He doesn't really have any problem bringing up wind. which would be what you would expect. He also doesn't cry for every feed and every now and again has a good few days where he maybe only cries during one feed of the day or only cries for a short period for his feeds, but there will be long crying periods later and back arching. I'm not sure if he wouldn't cry for every feed if his birthmark and lack of seal was the major issue.

I haven't noticed any wheezing or breathing issues. He does have some rough skin, which is recent, but the health visitor things this is more likely due to using johnsons bathing products (have just recently started using talcom powder). My mum and granddad had reflux and my half brother had cows milk intolerance, I don't know if that means anything

I'm hoping to get an appointment with the GP tomorrow. Will be the first time I see one about this has health visitors were quite convincing that there was little to do but wait and perservere. Will mention both things and try and get a referral to a paed as I would expect them to know a bit more about it :(

Sounds very much like cow's milk intolerance could be the issue. There are specialised formulas that can help - examples include aptamil pepti, nutramigen, and the very expensive (for them to prescribe, and vile-tasting) neocate. The rough skin might be from the johnson's stuff, but could just as easily be milk-related.

The wind you describe sounds like it's being produced in the bowel/ intestines - that's where most farty wind originates, it's not from swallowed air apparently.

HVs are rubbish IMHO, there are a few good ones, but I bet you they wouldn't be 'perservering' if it was their baby. Press your GP, don't just suffer on, things will be very different when you've established what the issue with your son's digestion is, and here I speak from painful experience!

would cmi cause feed amounts to decrease? He used to put on regularly half a pound a week (or a little more) and then he started to put on less and it often takes more like 3 weeks for 1lb than the two. I know they do start to put on less but I'm sure 2 months old is not the usual time for it. He's not that active. I think as well that he only put on the last lb for the last weighing last thurs due to two weeks of 5/6oz feeds. DS only had 15oz yesterday, which cannot be right for a 14 week 14 1/2lb baby to be having. When we switched to comfort milk and the new bottles the feeds went up to around 25-28 a day and he was a very happy baby, always moving and talking and I could always put him in his cot on his back for a sleep (he still only had a couple, usually 45 mins, though during this time I did get a few full hour long sleeps and a 2 hour sleep one very happy day).

But now the crying and everything has started again his feeds have gone straight back to down to mainly 3 and 4ozs and he does sometimes have a bottle sooner but then there will be a big gap too so there's still only 5 feeds a day and no real routine as there was before, he gets grumpy and cries more often with less time playing and smiling and talking. Often just sitting or lying silently :( a lot of the time now I HAVE to put him to sleep, no chance of him putting himself to sleep, except for every now and again on the bottle, and I often struggle to get him to sleep at night sometimes, which were the easiest. Often now as well, as soon as his back touches the cot or the sofa he starts screaming and when he wakes up it's immediate from sleep to crying, especially during the day. But he doesn't sleep well in my arms, always moving and grumpling in his sleep, not a deep sleep like normal.

Don't get me wrong his does play and smile and talk to you but I have noticed a lot more grumbling and crying or sounding unhappy for no apparent reason (perhaps only lasting a few seconds or minutes and then normal and then back) and silent times and trying to go down for naps more often.

As other people have mentioned, I have been told that some babies need less sleep but I'm sure a lot of the time he isn't getting as much as he would like and it seems to have hit him harder after having a break from it, or maybe that's just me struggling now after having two weeks of complete 'normalcy'.

Sorry for the big long rambling replies :(

Narmada you are a very generous lady. :)

The moving and grumbling in sleep was exactly like my DS. He fidgeted so much he wouldn't even sleep peacefully in my arms, even though you knew he wanted to be asleep.

Yes, cow's milk protein intolerance can cause feeding refusal - it's one of the diagnostic criteria, along with things like either diarrhea or constipation, vomiting, and sometimes skin issues.

A agree, 14 oz per 24 hours doesn't really sound like enough for weight gain etc.

Comfort milk has the milk proteins partially broken down (but not much) which may be why he had some relief.

Do see the GP, I hope they can help.
x

PS thanks yoga :)

narmada thanks for the advice. Today has been different and I was beginning to doubt myself, thinking I'd been bothering everyone for no reason (4 5oz feeds, no crying during feed, though some difficulty with crying and very little sleep throughout most of day) and now feel a little guilty that DS cried at start at bedtime feed to show I do have reason to be concerned.

I don't think he has any real issues with vomiting (is generally not a sicky baby at all, very little possetting) or diarrhea or constipation (though the comfort milk has not made stools thinner as it warns but thicker and more solid and generally only poos once in two or three days now, whereas it used to be once a day) so I don't know what to think. The comfort milk does appear to be helping as he isn't crying or upset as many times or for as long as he used to be (thank goodness!).

IMO the only reason he is maintaining a reasonable weight gain is because every few days his feeds are at 5oz and then they often go down again. The HV was surprised when I said he was only taking 3oz a feed most days and wasn't having more than 5 bottles a day but didn't say anything other than "well he's gaining weight so everything must be fine", which as other people have mentioned, is often the very sad case when something is wrong :( I also have slight issues as DP often joins in with the HV in saying I just have to persevere or thinking that he isn't hungry because he's crying and appears to be fighting the bottle, he then gets understandably annoyed and upset and so I often end up taking over and then DS takes it from me, probably upsetting DP further :(

Have you find that once they settle to feed after crying and fighting it that it is often a sleepy feed?

If he's content he goes down fine in his cot or on the sofa, if he's having his little episodes of crying and pain and whatnot you can't put him down or he starts screaming or crying loudly, arching back and stretching legs and clawing at your face. This also happens a lot if you sit down with him instead of standing up

I've also decided to keep more details, other than just times of feeds and sleeps and whatnot in the Baby ESP app I have for my phone, so I can keep track of crying feeds and crying sessions and good sleeps and bad and everything, and can back up everything I say to GP and HV in future. The new bottles have made no difference so it is not the birthmark that is causing the crying feeds (they really did help when we changed last time though, and the time may come if they don't sort the birthmark and it keeps growing, that we need the new ones I bought) so we definitely need help

will keep you posted.

p.s. any good sites with info about CMPI?

Yesterday was a difficult day :( He fell asleep on the bottle at the end of his first morning feed and i managed to put him next to me on the sofa and he slept for 40mins there but when it came for his second nap we struggled. He eventually calmed down in the pram and he fell asleep on the way back from the doctors but only managed 30mins. We spent the afternoon refusing the bottle (had 1oz all afternoon) and struggling to sleep. I managed to get some more food into him in the evening and he struggled again at bed time. Only ate 18/19oz yesterday, which I'm sure is less than a 14lber is recommended to eat :(

Good news though, saw a great GP who immediately said the crying and screaming and whatnot was not good, regardless of the good weight gain and looking well and he wants us to see the paed about the birthmark. We now have an appointment in a few weeks at the hospital and we're trying him on infant gaviscon. I've put him back on the first infant milk though as we think with the comfort milk and gaviscon the feed was too thick (even on fast flow) which is why he struggled and fell asleep so much.

Hopefully today will be better :)

I think my 3 week old girl has reflux, but health visitor says she isn't losing weight so probably not that. Im convinced, she has so many symptoms that many of u have described. I feel awful I don't know how to make it better and my 8yr old girl is getting no tome with me, feel guilty.
Should I go to gp instead and how so I get him to take me seriously?

Fab thread thank u.x

hi birchykel it's seems many people, especially on threads about reflux, get HVs telling them to 'persevere' or not taking them seriously because the babies are gaining weight but they should not be suffering as they are if we can help it and it is the most horrible thing to have your baby scream and cry in pain and struggle with feeds :(

I went to the GP and he agreed the crying and everything was not good and so DS is trying infant gaviscon to see if that helps any

Hi guys

Helli I hope this works for your DS, just watch for signs of constipation as that could cause some crying too! On the feed refusal, my 15lber had a bad day a few weeks ago & only had 16oz, try not to worry too much. She is fine now and up to around 30oz a day. I would recommend a vari flow teat with the thicker milks or with a thickner added.

Birchy I would write down a list of all the symptoms and keep a diary for a few days of how and when screaming/crying starts, sleeping patterns etc & defo go to GP. As has been said babies are not meant to be in pain & if the shoe was on the other foot I'm damn sure your HV would not put up with it. What are the issues you are having?