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.

Fantastic. I'd heard they were good. Long ,ay it last for you. We've had a poo smearing incident from DS1 (aged 2) and horrid wheezing from DS2 all day today-hoping for a better day tomorrow, despite DS2 teething again, thus puking for England being likely.

hi, my ds is 20 weeks and diagnosed with silent reflux a couolke of months back. his medicines dose has just been upped and it seems to have affected his poo! has anyone a similar experience - it has gone all curdled??!! i wouldn't worry too much except it seems to have set off a very sore bum indeed...
thx

Is it ranitidine and domperidone, driedapricots? I think one or both can affect their poo....

bethylou oh dear, poor you. That sounds very unpleasant. I can sympathise because my DD has now decided that run-up to christmas, hot on the heels of my mini-breakdown and the arrival of a new baby is the perfect time to potty train.

Narmada That's exactly what my DS1 did when DS2 was 3 weeks old. DS2 was only 23 months so it was a trial but I didn't really feel I could ignore his suggestion! Good luck! Hope you are feeling better.

narmada fab news about the swing long may it work. I found it worked for my DS2 for sometime and certainly feels weird to give your arms a rest?!good luck with the potty, hope she gets it quickly. bethylou hugs to you. My DS1 is behaving himself at the moment. We've not had smearing but have had weeing in all sorts of places for attention, tells me this too. driedapricots my Ds2 had poo that seemed a bit lumpy and not fully digested. Really vinegary and often has sore bum even tho he never sits in a dirty nappy. I found bepanthen works really well. Sort of news from us. Seen consultant today. Finally says yes, it's reflux and has given us omeprazole and insisting I do dairy free for 4 weeks...fair enough. Not like it's xmas and I want to eat cheese, pastries, chocolate, custard, cake, mince pies ha ha. Also saw a dietician and got told off for not having enough calcium intake myself now have to take supplements. Got review in 4 weeks hope we see some improvement. Poor little man no weight gain this week now near 50th having been on 91st and his length has dropped a centile too. Got to get better ?? :)

sorry i've not been back on since posting question!! ds is on ranitidine and domperidone yes..doc said quite normal for poo to change like this but his bum is actually bleeding it's so sore i have steroid cream for it now as doc said best to contune with medication and treat bum seperatly. what's the difference with different types of medication..i see you have omeprazole lady
also..weaning... becuase ds doesn't ever seem that hungry and is tiny (and i don't have enough hours in the day)i hadn't really thought about it, but he is 21 weeks and i've heard it can help...what do we think, should i start??!
finally sleep....do reflux babies generally not sleep through? it's really getting to me now. dd1 was sleeping through at 12 weeks and we're still no where neat with ds2..he's up every 2/3 hours - the most he's ever slept in one stretch is 4 hours :-( i'm exhausted!
it's so good to have this support thread..and astonishing how many babies (and parents) are suffering...

driedaps well weaning is interesting! My LO is now 25 weeks and he is awake anything from 2-5(as it is tonight) times. I agree, it's so exhausting. The dietician told us to start very with small amounts of food. DS2 did gag and shudder quite a lot but she said to give constant praise and touch and kiss around his mouth. Also to try purees and baby-led weaning where he has sticks of cooked veg. Purees def working better. He is having only tiny amounts of food but it's getting more each day. He is still refluxing but He's not been screaming for hours like he did at first...watch this space keep fingers crossed. I asked question about weaning helping and they said it tends to cos food sits in tum and doesn't reflux back up the oesophagus. Although, it's not always this simple? Id say if you think He's ready then try some simple carrot or apple and see how he does. Maybe talk to hv for input, mine's been really helpful. Trial and error im afraid. Hope it helps some x

I think weaning helped my first (DD) who also had reflux, although she was slow to get it and really didn't eat a great deal till she was around 18 months. One thing I did notice with her was that she wouldn't have much to do with purees and absolutely hated not having control over what went in her mouth. Apparently this is quite common with reflux babies. So we did quite a lot of finger foods.

We had our paed appointment yesterday: doc suggested keeping him on ranitidine only, wasn't keen to switch to omemprazole as ranitidine was doing 'something' even if he wasn't totally better. I did say he still has problems with discomfort and especially sleeping, but she kind of brushed it off,

I was quite disappointed with that. And then...she also commented that DS has a pronounced weakness in his neck muscle (head lag or some term like that?) and that his arms are more floppy and have less muscle tone than would normally be expected at his age so wants him to have blood test and chromosome analysis 'to make sure we're not missing anything'. She said she hoped it is just transient and nothing more long-term, and we are trying not to worry but it is an additional thing we could have done without at the moment :(

Quick question - for those of you whose refluxers have feeding aversions, at approx what age did they start showing?

PS re the sleeping, driedapricots, IME reflux massively affects the ability of babies to sleep. So you have my sympathy absolutely. DD used to wake up very many times each night, and was very difficult to get to nap in the day. It was the pram, the sling, the car seat or nothing. Things improved hugely when she could roll onto her stomach at about 6 months. Her reflux improved gradually too, to the point where when we were sure she was pretty much unaffected by it we did some sleep training with her.

My 8 weeker is another story entirely. He is also very difficult to get to sleep during the day. It takes serious inducement. At night, though, he wakes only once for food BUT does take ages to get off in the first place (usually 11 pm or after) and has to be coaxed back to sleep after his middle-of-the-night feed. His reflux is worse than DD's was but he is on medication whereas she wasn't.

I suppose what I am trying to say driedapricots is that based on my experience reflux definitely, definitely affects sleep but how much and in what ways varies depending on the baby and their temperament, as much as anything else.

Driedapricots I have found with both of mine that reflux definitely affects sleep. I'm afraid that DS2 is 10months now and still wakes about 2-3 times a night in discomfort. The first time round with DS1 it nearly finished me off. This time, I'm more philosophical and feel it will end in the end. Sorry if this just makes depressing reading-you have my sympathy, for what it's worth. The HV suggested this week giving him calpol at bedtime for a few nights to prove whether or not he is waking with discomfot. Night 3 tonight and so far a vast a improvement. Will be asking consultant on Monday how often we can use it (amongst many other questions obviously).

narmada How rubbish of your paed to dismiss your opinion about your lo...you know best. I wish id have stuck to my guns with our first appt but they make you feel like it's just a trivial thing that will pass and you just have to get thru til they're walking, sitting etc. When does your LO have tests? Big hugs. Also, now you come to mention it altho Ds2 will eat purees better than sticks of food think it's due to the wretching when having sticks. With the purees he wants to have the spoon or have it his hand rather than me feed him. Spose I dont really blame him, the only thing he's ever had is medicine that must taste like sht or my milk that makes him have pain so kinda wants some control maybe? We're over a week into dairy free and a week of omeprazole. Think it's allowing him to have longer milk feeds without pain sometimes managing 7-8 mins instead of usual 2-3 before pulling off. He's still refluxing and waking up lots at night and now has started to be sick again...He's not done that for weeks and ok, so its not proj vom but still strange? He has become really constipated, usually goes at least 5 times a day and not a one since wed afternoon. Anyone know what I can try? Tried some orange juice with boiled water but to no avail. driedaps have huge sympathy to the sleep deprivation I feel like a zombie at the mo. bethylou* good luck at paed tom x

It's interesting re the calpol driedaps. Hope it carries on working and you can carry on using it.

Lady, I think even paeds have no idea what it means to have a baby with reflux, in terms of how demanding it is on the parents and how much it upsets the child. TBH, I was so tired at the appointment that I was far less assertive than I would otherwise have been. Also the PND doesn't help on that score. DP is not very vocal or assertive in those situations, so I suspect she also just thought 'mum has PND, making it out to be a bigger problem than it is....'.

Thte tests won't be till January as we are up at my mum's until the 27th and they couldn't fit us in.,

Being here is stressful - all the visitors keep saying 'oh, just put him down, he will go to sleep if he's tired'. No he effing won't. I am not walking around the room with him replacing the dummy endlessly because I want to indulge him, it's because it's the only way to make him sleep and keep him asleep.

Can you tell I am feeling cross today?

lady re the constipation, could you try prune juice, or failing that lactulose? No personal experience but I think that's what other people have tried. Not sure whether lactulose is on prescription or OTC. I seem to remember when we had our failed trial of omeprazole (prob failed because we couldn't actually get it into him and he was on a tiny dose) the GP warned us that constipation was a known side effect. I am really pleased for you that it seems to be making a small difference. What a great christmas present t hat would be if it carried on getting better - maybe it will as any inflammation of the food pipe heals. Fingers crossed for your family.

The wanting to have the spoon is exactly how my DD1 was. I always put it down to what you describe - e.g., wanting control over what goes in her mouth on account of bad associations and also (retrospectively) her very independent personality which has obviously become more noticeable as she's got older.

Also, Lady again, have you got omeprazole as Losec MUPS or as some other formulation? If the former, how do you go about getting it into your DS? guessing in food?

bethylou how did you get on with your paed appointment?

Hi ladies well its been a rubbish week for us again. Yes we are on losec mups narmada we mix into apple and feed him that way. Tbh tho have said wouldn't know what to do if we weren't weaning. After thinking there was initial improvement we're now back to square one. I think he is still feeding for a bit longer than normal but He's back to pulling away, arching and yesterday was almost climbing out of his feeding chair as I was tryin to give him butternut squash. He is so very miserable. He is still being sick here and there and I think I keep seeing his shakey thing. 17th jan seems a long way away now. narmada I know what you mean about the visitors and I hope you manage to stay calm with them all. I had a random stranger at MIL yest who when MIL pointed out Ds2 significantly throwing himself back whilst being cuddled said, 'He's just looking at the Xmas lights.' Its so very hard to say anything but all my family know exactly what it's like so the rest can jog on. Am sticking to no dairy religously and not having the suggested blow out over Xmas. Not giving docs any ammunition to explain away lack of progress. Hope you all have a fabulous Xmas xx

gosh, lady were you really posting so early????!

really sorry the Losec has not yet been the magic bullet. You deserve a lucky break.

Best wishes to you and everyone else here on the reflux board. May you all have a non-screamy, non-pukey christmas.

SO how was everyone's christmas??!

Our xmas day was actually ok. Not too screamy, ,presents opened, dinner eaten, etc.

DS has since then stopped sleeping in his swing -basically now nowhere apart from the pram which is not practical in this weather. I have nearly broken a bone about 3 times on the icy pavements waliking around trying to get him to sleep. I am at my wits' end with him and the PND, which just doesn't seem to be shifting.

Someome share their happier christmas tidings??!

narmada how are you? Can you go back to gp for review of meds? Reflux is so hard when you are feeling 100% I cant imagine how tough it is when you dont. Our Xmas was ok. Ds1 was so excited this year it made it pretty special. Ds2 right back to where we were pre losec. I am still giving it and we are attempting two and a bit small meals per day but he's definitely not loving the process. He will have some food from spoon but then becomes restless and tries to push up from his chair. Also had a couple of scary choking bits where I could actually see the milk in the back of his throat and tonight he has projectile vom'd it out?! Not done that for about 3 months? On a good note though, we're having lots of smiles from him as he has suddenly gone into that inquisitive phase of awakening to everything in the world. I love it... and both Ds1 and Ds2 worship each other with cuddles and smiles between the tears. Hope things are good for others x

Hi Lady and everyone else. GP has upped my PND meds, my son's got yet another paed review in a couple of week's time - his first set of bloods came back today and (I think) they have ruled out some of the nastier systemic muscular problems. Just waiting on the chromosome analysis which should be done by tuesday next week. The paed also wants to do an MRI of his brain - this came out of the blue yesterday and we were a bit shocked to tell you the honest truth. We have declined until the chromosome analysis is back and still hoping that he has something straightforward that will resolve in time.

lady so sorry the losec not working. What an absolute bummer. But really glad your xmas was OK. And that you are getting some smiles among the tears. Those little glimpses are what make it (almost) bearable, aren't they?

Narmada glad gp increased meds and hope PND lifts soon, honestly cant imagine. Having an awful time here Ds2 having very interrupted sleep and waking frequently then arching in sleep. Has refused most feeds all day including his solids. My boobs are going to explode. Managed to get him to have about 5 mins before bed. Can anyone advise on when to seek medical advice with regards to decreased fluid intake? Been told diff things by diff docs and very confused. I am hoping he has some dream feeds tonight. No dairy shmairy!! He's worse not better! Bad times indeed :(

Oh goodness lady, that sounds awful. Do you think maybe the weaning is making things worse? Just clutching desparately at straws for you.

I really don't know about the decreased fluid thing, I can't offer any advice really - how about calling NHS direct to see what they advise (altho to be honest it always seems to be the same - e.g., go to the out of hours doctor service!). As if you need another medical opinion!

We are really struggling too. You are not alone. I feel like I'm going backward not forward. It's sooo hard when you have another one to look after too. I feel so much for you.

How is everyone? Lady, how is your DS? Did he go back to taking usual fluids?

My DS has over the last 3 days been refusing bottles as the day has worn on. only getting half- to two-thirds of usual quantity into him. He has had a virus involving cough, cold and runny bum, but doc's advice is just keep him at home unless he shows signs of dehydradtion. Very stressful and frustrating. He is impossible to get to sleep, resorted to 2+ hour pram walk this am despite me being knackered. Got the hamster-in-a-wheel feeling again.

Thanks for starting this thread, I'm wondering if DS2 (7 weeks) is suffering from reflux but difficult to tell, he has had a bad cough/cold since he was 2 weeks old so it is all a bit of a nightmare to be honest). Haven't been to GP about this yet but I think I need to.

DS1 had similar symptoms tbh but I don't think it ever occurred to me - symptoms weren't quite as bad and I had time to stay at home and do all feeds lying down which seemed to improve things. Can't do that this time!

Symptoms:

• crying and arching back during and after feeds
• very fussy about how I am sitting - won't latch on unless it is just right
• projectile vomits entire feed if moved around a lot during or after a feed (e.g. bathtime) but only approx once every couple of days now - maybe because we are keeping him upright for longer now.
• Posseting partially digested milk
• feeding little and often and doesn't stay latched for long(partly put down to having a cold and not able to breath properly)
• sometimes takes ages for wind to come up and won't feed when uncomfortable
• very windy (again maybe due to taking on lots of air as needing to breath through the mouth)
• not sleeping for long between feeds
• wet burps and 'yuk' look on his face
• weight gain from 75th centile to 91st.
• Really fussy about which side he wants to feed from but not always wanting the same side.

oh, and nappies always wet and dirty - sometimes 3 per feed!

Many of the symptoms you describe are tyipcal of reflux, Mini. Have you been to GP? What did s/he say?

Sorry you're having a hard time :(

Thanks Narmada, I seem to be having some luck reducing symptoms by making all feeds split feeds but it is hard to spend any time with DS1 that way . I'm going to speak to the HV at clinic tomorrow and see the GP later in the week.