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.

msscarlett babies still put weight on drinking milk with high lactose content - lactose is basically sugar so IMHO your HV is talking complete nonsense!

Sorry you're having such a hard time :(

Narmada I think I've got it all wrong! Thanks for correction on lactose-think I knew it was CMP, not lactose that corss over. Sorry for misinforming.

As for lanzaprozole - I think it does say to give it half an hour before. It seems to help DS whenever though, although obviously optimal to follow the instructions. DS2 is such a gannet that I would struggle to get it into him 30mins before food/milk in the morning!

Hospital appointment for DS1 was cancelled yesterday as they'd booked him into the adult clinic by mistake. Wouldn't have minded so much if I hadn't rung adn asked them this 3 weeks before! I got a whole 3 and ahlaf hours' notice! As you can imagine, I am not impressed. Have to wait another 2 weeks now.

Sorry for spelling errors-I'm supposed to be working so typing too fast!

bethylou I get everything wrong, all the time, so you're in good company if you did!

What an absolute bummer about the hospital. You must have been livid.

We also have had the problem getting meds in on an empty tummy, but more because it always seems to have residual milk in it even 4 hours after the last feed :(. I think I need to ask the paed about transit issues :( :( :(

All fun and games here. Our 18 wk DS is either taking a very long time to come down with an illness or has developed a feeding aversion. It sounds totally bizarre but I am desparately hoping it's the former. For the last fortnight, it has been taking me ages to feed him and he pretty much won't touch anthing until about 2 pm - whether this is when the meds kick in or when he just can't hang out any longer I do not know.

Ps bethylou, I give the lansoprazole after the first milk feed but about 30 minutes to an hour before the next feed. Or at least I used to when he was drinking :(

PPS has anyone whose infant is on losec/ lansoprazole discussed with their paed giving the meds as a split dose - eg morning and evening instead of all at once? I suspect DS's lansoprazole is wearing off by around 9 pm and causing him to be really resstless in the late evening ...

jjkm welcome to the thread. Sorry to hear about the difficulties that your LOs are battling with. I know of one 2 year old who had a Nissen's last year and it has totally solved the problem for him and the internal bleeding that he was having has healed. However, I don't know of any little babies having it done. I know that a lot of us on here have had problems with the reflux meds not really doing enough. It has taken a long time for my DS to hold his own, pain and vomiting-wise, on any of the drugs and I'm sure that's because he's now beginning to outgrow it. I'm sorry I can't be of any further help. I understand that having the procedure done is not to be taken lightly, but I'm sure you know that already. Good luck and do come back and talk to us along the way.

narmada I'm afraid to say that reflux saw off breastfeeding with both my two from about 16-18 weeks. I'm sure it's a coincidence, but thought I would just let you know what happened. DS1 hadn't been on meds by then as he was a silent refluxer and wasn't picked up as generally happy apart from the horrific screaming feeds. He just became aversive, plummeted down the scales and totally refused any milk in bottle or breat for 2 days. After 4 months of screaming, we decided that he would be better on a bottle that he could have upright and it would help my sanity as DH could share the load/deafness!!

Sadly, DS2 followed suit. I swore that I would not try and carry on for so long the second time round as I had also to think of DS1, but DS2 wouldn't take a bottle so we got to 5.5 months of screaming/arching/covering us both in sick before I handed DS2 to DH with a bottle and went out. It took 15 minutes of resistance (screaming) before he decided that it was okay.

I really hope for you that it is an illness (of that makes sense), but I'm afraid that from my own experience, it may not be. I would say that we were told never to try and force them to feed, as that doesn't help the aversion but it was a horrid situation to be in. It was only when DS2 was born and fed well initially that I realised I wasn't a 'failure at breastfeeding', as I had labelled myself, but that my boys were not able to cope with it due to the reflux.

dd 4wks i waking for feed in the night but then wont take it,she is rooting and crying and takes the teat ok but then as she starts to suck and the milk comes out she cries and wont take it,sometimes she will then have a dummy and a cuddle and then i try the milk again and she takes it or sometimes she will eventually take it if i just persvere and keep offering it. She is on gaviscon,ranatadine and dom peridone.The 2 meds she has thru the day-last dose at 10ish and the gaviscon in every feed.Am i doing something wrong?Its annoying cos she has a cleft palate too so feeding takes ages and then i have to keep her upright so feeds can take up to 2 hrs.I have also noticed her doing this in the day as well but not as badly and she is also starting to snack rather than take a full feed which is very time consuming.DH is back at work Mon so i will hav to fit it all in with the school run etc,any suggestions?

Welcome jjkm it does soud like you have an awful lot on your plate. I do so hope the surgery's a success.

Is there no way the hospitalcould supplement with either the preemi version of neocate or banked breast milk? At least then you could rule out cow's milk issues as part of the picture. If your DP cannot drink milk and is intolerant to the protein, it seems mad that they are giving your babies cow's milk based formula. I think also that cow's milk protein issues are often suspected where maximum doses of medication don't seem to make a dent, but I could be wrong about thst.

Bethylou, I made it to 5 weeks BF with DS, and gave up for almost identical reasons to you - needed DP to share the load. DS has been pronouned fit and well, no urine infection, nothing, so it looks like we are facing feeding aversion - what I dreaded. I don't think trying to wean him onto neocate has helped as presumably now he also associates the bottle with the yuck taste.

Hi everyone, have just discovered this thread. I have a 4.5 month old DS with reflux, diagnosed when 6 weeks. It's terrible! He needs to be jiggled all day long and is constantly uncomfortable, straining and grunting unless asleep (which he mainly only does in the buggy during the day). He's on ranitidine and omeprazole (started omeprazole last week) and as of last Thurs I cut dairy out of my diet to see if any effect, am bfing him. No results yet but hoping for some improvement.

He wakes between 2 and 5 times per night and at the moment won't sleep beyond 6am. An hour before his 2.8 yo sister wakes up. It's so hard to face the day! I'm not getting anything done either, our flat is a tip and my admin is months behind. I'm being treated for depression too (cognitive behavioural therapy), partly PN I think and partly PN from last time that I didn't recognise. And my family (though very supportive) lives on the other side of the world so no practical help, it's just me and DH, who is great but exhausted too and frustrated at having no time to do anything but work and jiggle.

So there's my rant! Hope to be able to share a few tips and some support on here. It's hard to discuss in RL as I find people's eyes glaze over when you mention you're having a difficult time.

I am in almost the exact same position as you bambinocino. DS, same age as yours, is on PPIs and we are currently attempting to go milk free. It's really, really tough and I also have PND, so you have my deepest sympathy.

The having-no-time-to-do-anything but work and jiggle is oh so familiar and oh so depressing. I am adjusting but it is very hard to recover from PND when you've got no headspace. In fact, I think it is a monumental task, especially when coupled with sleep deprivation.

Does your DS eat OK or does he have food refusal issues?

Big hugs.

Thanks so much narmada! It really helps to know others are going through the same thing.

Re feeding - DS pretty much snacks all day long, is never latched on for more than a few mins at a time. He's gaining weight pretty well, following the 25th centile, so am grateful for that. But I managed to get his sister (didn't have reflux) into a good feeding routine when she was a baby, 5 feeds a day, and had some sense of control over my day. With DS am finding the constant feeding a real pain and never know where I am. Basically if he cries I try feeding him and if he has some then he does! Not sure how that's going to work when it comes to weaning.

The CBT that I'm having for the depression seems to be quite good in theory but is definitely diffciult to make progress when you have no sleep or time! I find I tend to just go into a panic when I'm trying to put the techniques into action so it's a bit up and down. Having another session on Weds though so hope it might help.

Hope you are making a bit of progress with the PND. Is the pits.

I am on loads of meds (mirtazapine and sertraline too) and they have really helped. Are you considering them? Sertraline is considered relatively safe for BF if so. I am on wait list for CBT but I am not holding out for it happening anty time soon, the NHS being what it is! Hope your session on weds goes well.

My first DD had reflux but to a lesser extent. She was BF and a 'little and often' girl, but to be honest I think that is the norm for most BF babies, refux or not. It's hard with another little one around though.

It is great that your son is gaining weight - you should be really proud of yourself for that as feeding a refluxy baby is HARD work.

Hi both. Having had two refluxy ones, can I mention the routine that I used? I totally know that routines are not for everyone, but they did work for me and meant, that despite the hideous screaming feeds that I endured with both boys, they only started the next feed three hours after the previous one started. We used the Baby Whipserer's EASY approach which was for eat, activity, sleep and 'you' time. I know that 'you' time is rather tricky with the jiggling, but it at least meant that the sitting upright was limited to after every three hours and not less (especially at night when a 90 minute sitting up session was awful). DS2 was on a three hourly routine of this type by a week old. I'm guessing I'm lucky that both my two suited routines, but maybe it's worth a go. I also realise that with very unsettled babies, feeding so that you get a break from the crying is also helpful.

Bambino I vivdly remember the glazing over from even some of my quite close friends when I mentioned reflux for about the 8th time! I think that if people haven't experienced it, they have no idea what we are on about!

Morning - a bit groggy today after 3 wake-ups, gah. Narmada - yes have considered meds and in fact have a prescription for Setraline in my drawer, but haven't filled it yet as in my typical anxious way am worried about possible unknown long-term effects on DS...I thought I'd box on with the CBT for a bit longer and see how I got on. I do feel less desperate these days than on the day I went and got the prescription, must be a good sign.

Thank you re the weight gain, is easy to forget small achievements in the daily slog!

Bethylou that is a vg tip, haven't tried that routine but might give it a go. I am keen on having some idea of what's happening in the day and when I'm going to be feeding DS. As opposed to my current chaos. How did you make sure your DSs got enough milk at each 3-hrly feed to keep them going? My problem is that DS will feed for a few mins then pull off, and sometimes then refuse to feed for 5 hours or something, then have another go. Is very messy and newborn-esque, I basically just keep trying all day, each time he seems as if he might need something. God knows how he's gaining weight!

This sitting up for 90 mins after a feed thing, does that mean bolt upright as in you have to hold them, or does sitting in a bounce chair count?

You only have to hold them upright if they squiggle and squirm (and sometimes puke!) if you lie them down. My DS1 and 2 both woke after 5 mins if I tried to lie them down after a feed, day and night for about 6 months. A chair will do and my HV actually advised sleeping them in their car seat for a couple of hours after a night feed so that they could be upright and I could sleep. She suggested setting an alarm then to get me up and to lie them down if they didn't need another feed. We only did it a few times when desperate as we knew that car seats weren't great (and actually the angle was all wrong for DS2's reflux anyway - he screamed when we put him in it) but it's another thing to consider as and when you need to.

I was very lucky with my milk supply I think, in that I had a lot of milk. Both boys only ever fed for 10 mins and then went approximately 3 hours. There is a section in the Baby Whisperer book about changing a baby from being a 'snacker' into following more of a routine. I have to admit, when DS1 started pulling off the breast due to the reflux, I did have to wait until he'd calm down and have another go several times at times (but definitely not forcing him to latch on). I guess making a note of how long they feed for and how long they go between feeds afterwards for a couple of days will help you to guage this. In the early weeks (about the first 4 or 5 weeks I think-it's all a haze!), I did feed every three hours day and night whether or not they were demanding it. This seemed to help at night though after a while, as both boys stopped needing a feed in the night from 8-10 weeks, as they got plenty in the day to keep them going (and a dream feed at about 10pm with the long sit up after) It often felt a bit strange to start with to wake them for a feed, but did seem to really help in the long run. I'm no expert at any of this - it's just worked really well for us, especially having now had two refluxers.

The other thing I did was to use a dummy for sleeping. If I wasn't sure whether the baby needed feeding, I put the dummy in briefly. If the crying stopped, I knew they weren't hungry. If they carried on making noise, then I fed them. I know this would be much harder with an unsettled baby-I was very fortunate that my two, despite having real problems with reflux, were generally quite happy babies. I think refluxers can become comfort eaters (my DS2 is at the 90th for weight!) and I'd have to read back on here to see whether snacking is supposed to be a good thing or not. I know for my two, the break between feeds was a good thing, but I'm sure I'd have fed them non-stop if it was the only thing that comforted them!

Hello folks. How's it going?

Sadly I think our LO has now developed a feeding aversion - what I was absolutely dreading as we have a friend whose baby has this and she is in a terrible state really.

For the last 3 weeks DS has been fussy on the bottle, and often won't drink more than 2-3 oz at a time. HAd him at the GP twice inside a fortnight, really hoping they would find some infectious cause but no, nothing (how odd does that sound? But infections can be relatively easily treated....)

I am finding it really stressful - now I am having to battle to get him to sleep as well as feed and the two things together, well....!

Narmada I sympathise entirely. For me, it was the worst part of the reflux I think. Are you using a sippy cup for water yet? I introduced mine a bit early for DS2 and this took the pressure off. He managed a whole 3 sips of milk tonight before bed and a grand total of 10oz over the whole day. I offer more yoghurt and cheese when he's like this (can't remember if your LO is on solids yet). This time round, I have not worried about it because there isn't a damn thing I can do about it but the first time round I had a lot more time to worry and a lot less experience to know that in the grand scheme of things it doesn't make a lot of difference - I'm not saying it isn't extremely frustrating though. DS1 didn't get through a 7oz bottle for 11 months by which time I was supposed to be weaning him off them!! My friend was amazed that it could take us an hour to get 5oz in to DS1. Poor DS2 gets two goes and then goes without {sad].

Hi all. Narmada that sounds so frustrating and stressful. There's nothing worse than spending all day trying to feed. And you have a DD too don't you - is so hard to cater to both of them in that situation. Is your DS gaining weight? I do remember that my DD when a baby went through phases of seeming to eat very little and that it didn't seem to make much difference to her overall weight gain.

Bethylou thanks for the tips, I might try the car seat, sounds like a good idea.

We have had a pretty bad few days - DS is still waking up 2-3 times a night for half an hour or so at a time, and requiring enough jiggling then and in the day time to make my back ache all over. I just feel so exhausted and really really wish my mum could come over and give me a hand. (She lives in NZ so not much chance of that sadly!). I kind of lost it a bit in the night last night and felt really weepy and fragile this morning. Then a trip to the doctor with DD who has a bad cold and the library, had to get DS out both times to feed him then put him back in the buggy screaming. Ended up in tears in the supermarket.

On a slightly more positive note am wondering if my dairy free diet is making any difference, I have a feeling the spots on DS's face and the cradle cap have improved a bit, and he seems to be able to go to the loo more often and with less effort than before, but that might all be wishful thinking! Has been 8 days and counting so will see how things go over next week or so. I have been ransacking the free from aisle in the supermarket in search of dairy free cakes to cheer me up!

Hope everyone has a good weekend, I for one am looking forward to having another pair of hands in the form of DH to help deal with all this!

bambinocino thanks for the message. Actually today DS has clearly got something infectious and he has yellow pustules in the back of his throat - doctors this PM. It's bizarre but I am relieved and alittle hopeful that his appetite might pick up when the infection's gone. DS is gaining weight, but woulddn't be if we left him to his own devices. My DD is in nursery 4 days per week but the other 3 days of the week....arrrgh.

Re. the dairy free- It sounds like it's having an effect. I read somewhere that cradle cap can be linked to CMP intolerance. My DS has suspected CMP and has awful cradle cap.

I am really sorry about the supermarket episode - how horrible for you, and your mum so far away .

The back ache I can really identify with. Do you ever wonder how much of your baby's sleep issues are behavioural and not attributable to reflux? I do.

Hi all, sorry for your troubles, and yay for the triumphs! OK, so I emailed MNHQ about getting reflux into the media - some sort of documentary, to help us all feel less isolated, and to help people 'out there' understand (instead of glazing over!), but had no reply. I don't know if someone else wants to have a go, or whether it's just a crazy idea anyway? I also suggested a webchat with a reflux expert, as many of us seem to go through similar episodes or have similar doubts/anxieties (depressions?) - not to replace individual health care/advice, but to chat through some recurring themes?
For Bambinocino - I Bfed on demand, at its worst every 40 minutes and 8,9,10 times a night. We're weaning 7mo DD now and she pretty much eats at the 'right' time - sometimes she's not too bothered, and I tend to top her up on the boob in between, but we attempt 3 meals a day and it's often successful. I know they're all different, but hope that helps with your worries about weaning? I tried the routine thing and either she or I couldn't manage it. But I know what you mean about the unpredictability, especially when out and about. It took me ages, but eventually I stopped fretting and just went with whatever she wanted, and it kinda worked, so long as you allow twice as long for every trip as you would anticipate, for all the extra feeds/jiggles!
On a more personal note - does anyone have/know anyone who has more than one LO but not all are affected by reflux?? We're debating no 2 but don't think we can face this again...

Narmada that is good re your DS - what did Dr say? Also I meant to ask yday, how is the milk free going for you? Any better?

I do wonder a bit about the sleep issues being behavioural, but almost every time DS wakes up he seems to be uncomfortable with gas or wind and once he's got rid of it he relaxes and goes back to sleep. So I think it is something physical. But makes me wonder whether the night issues might be caused by something other than reflux altogether....though I think I've read that gas/wind can be part of reflux or associated with it. Or with CMP intolerance, which we're trying to check for at the moment.

Ellnol - far out that must have been taxing BFing so often. It's v reassuring to hear that the weaning has gone OK. With DD I was in much more of a settled pattern by weaning stage so this will be quite a different experience.

In answer to your question - I have an older DD (now 2.8) who didn't have reflux. This is a whole new nightmare for us! She was a bit unsettled as a baby but nothing like this. I also know someone whose first DD had reflux but not the second. If that's any help!

I think a webchat with a reflux expert would be fantastic.

Hi Bambinocino, thanks for the response - re. milk free, well, DS is pretty much on a milk strike at the moment no matter what's in the bottle. Dr said either virus or bacterial infection, and if the former the fever would be gone today (it has) so no need for antibios. He is drinking less than ever, today down to 15 oz, to the point where he is going to become dehydrated surely if he carries on like that?

I am sure your gut feeling is right - you know when it's pain and when it's not. Gas and wind can definitely be a reflux thing, CMP even more so. Also, some reflux meds can cause wind, can't they?

I think a reflux event would be great, ellnlol, will help in any way possible.