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.

Yes, it is very very hard to find time for other DC when your second one is quite demanding - I know that's ridiculous, all babies are demanding, but some more so than others IYSWIM! We have found the same regarding spending time with DD. She was really bad at playing on her own when her brother arrived, but through necessity is now a little better.

GPs can be a bit ill-informed about reflux - 'if the weight is going on, then all is OK' type of attitude. However, I would see if s/he can do something for you nevertheless if your baby is definitely unsettled by the refluxing episodes.

Hi Ladies,

I'm back again already! I spoke to the HV about my suspicions abour reflux this morning when having DS2 weighed. She is an HV for whom I normally have a good deal of respect but she basically advised me to stop feeding DS2 so much (he has gone from 50th centile - but 3 weeks early - to the 98th). She suspects (probably correctly) that this is the result of the reflux. I know he is big but this is on the new breastfed baby charts and DS1 was on about the 95th on the old charts (my DH is 6' 5'') so I had just assumed he was catching up with where he would have been if born at 40 weeks. She didn't actually have much to say about easing his pain though!

Having said that, he is feeding frequently and does comfort suck so may be getting more than he needs.

But - looking at Kellymom it advises that frequent and comfort feedings of a reflux baby can help to alleviate symptoms.

And my baby's red book chart says that they do not worry about babies gaining 'excessive' weight in the first year.

So confused (and rambling, sorry). Any experience or advice appreciated!

Hi ladies, awful times for us at the mo, DS2 refusing feeds, constipated and my lovely nan died last weekend so not a great start to the year. narmada how are you and DC? Have you had any more tests/results back for DS yet? We went to gp with Ds2 as fluid intake stayed down the next day and...despite a registrar and paed consultant saying so he's still not having it that It's reflux! DS2 is very rattley with his breathing and consultant had picked it up but gp thinks that's the source...apparently blocked airways cause negative pressure inside the chest which draws up the refluxed food. He has given us two inhalers and hopes we'll be investigated for this when we go back. Why cant they say the same thing? dairy free and losec haven't done anything so Ive decided to do gluten free too so when I go back they dont fob me off for another 4 weeks. Had awful night last night he woke at 11.30 then screamed til after 3 and only settled because I drove him around the city. Thought of you narmada at one point as I was running around the lounge with him and felt very much like said hamster in wheel! mini firstly hello, and sorry you're having a time with LO. You'll soon see from us that the medical profession seem to vary with advice etc. My DS was born on 50th centile and within 2 weeks was on 91st-98th where he stayed til 14ish weeks gaining sometimes a pound a week. I was told by a registrar he was sick (proj vom and some!) because I was feeding him too much and I should stop...pah whatever. He would always feed again after throwing and then keep second one down so if he was full, surely that'd come up too? I found it did help to feed from one boob until empty then swap to the other and also if your let down reflex is fast then it can cause issues so you can let them suck to get milk flowing and then let it drain or express a little before feed. Hope that helps. Really hope for sleep tonight :(

Oh lady you poor thing and your poor DS2. You must be exhausted. Did you get a better sleep last night. I hope he starts eating again soon. It's terrible when they won't eat, we had a little taste of it recently and to be honest my DS has not really got back into his milk very enthusiastically since then although we are getting it down him. It feels awful, like you can't even nourish your child but of course it's not your fault. You are doing your damndest.

I am so sorry about your nan. You must be really struggling at the moment - well done you for keeping going.

We are going to the consultant tomorrow for DS, I am hoping his chromosome analysis is back in time and we can put that to one side. It is hard not to worry as one of the things they are testing him is a really worst-case-scenario disease. But thankfully rare.

PS my DS also has terribly rattly breathing. My (really good) GP said he thought it was due to aspiration during feeding - and that babies were not very good at coughing so sometimes the bits and bobs they've regurgitated go where they shouldn't. Do you think it could be that?

ok, we now have lansoprazole - seem to remember someone else on here has/ had that too with mixed results to say the least....

narmada we had Lansoprazole 10mg. Nightmare to administer but like I said before you have to keep tipping syringe up. Didn't work for us but it works by turning acid pump off in stomach so theoretically there's no acid produced. Ds2 was still the same tho and same for omeprazole which I think is same class. If one more person tells me that he'll grow out of it...... Also had consultants letter to gp today that says she suspects reflux is result of cow milk protein allergy...well it's 5 weeks with not a sniff of a chocolate, lump of cheese or butter on my toast and hell, im even having rice milk on my porridge. No different and he is still being sick here and there!

lady OH how lovely for you :( re the letter. I am so sorry - you just want an answer now, don't you? I hope you get one soon.

This lansoprazole is supposed to dissolve, so I am hoping it's easier to get into him than the Losec MUPS with all those little pellets. Omeprazole worked well for DH so I am hoping his offspring is similarly wired.

We had a rotten day today - went to Paed appointment to get results - supposedly- from chromosome analysis only to find they have been delayed. So frustrating as they are testing him for something really awful (spinal muscular atrophy) and we obviously want to know whether he has it :(

My night off tongight - thank goodness. I look like I've been punched in both eyes due to lack of sleep.

Sorry Lady, I remember now you gave me tips on how to do the omeprazole..... sieve brain.

Hi ladies, HNY! I'm a 'dropper-in' to the thread and every time I look I remember why I use it - it normalises what is essentially this weird twilight zone where you do anything and everything you can think of to keep your baby comfortable, and everyone else thinks you're mad!
We started ranitidine at the end of Nov, and the change in dd was awesome - we could actually put her down! But over the next few weeks she deteriorated again and at 6 week review last week we were almost back to where we started.
Paed doubled the dose, and we seem to be on an upswing again, but still troubled by incredibly effortful pooing - she can thrash around for literally hours, followed by a full on purple faced strain, dreadful wet farty noise and pints of curdled yellow goo, so we usually end up in the bath. Sorry to be so graphic. And ok, it's waste so never going to smell good, but absolutely reeks, so that my roughy toughy ex squaddie dh is gagging. Do others have similar? She's still ebf at 23 weeks, HV suggested baby rice but she was much worse - awake every hour and screaming sore again. Think she just can't digest it. Does domperidone address the poo - paed mentioned maybe swapping at next review if no better, but we're reluctant to stop ranitidine as it seems to work, kinda. Sorry I'm doing more taking than giving to this thread - keep thinking we'll come up for air at some point and be in a position to be helpful to others, maybe...

ellnol, I am in no way medically trained but I think reflux is characterised by under-development of the digestive system in general - e.g., the action of the stomach, co-ordination of the intestine, etc etc etc. I think there is a theory that reflux is exacerbated by a failure of the stomach to empty as it should. Domperidone is supposed to speed the passage of milk/ food through the digestive tract I think. Other motility medications are sometimes used I think as well.

Have you done the usual things like excluding dairy from your diet, ellnlol?

PS I know what you mean about coming up for air at some point. I hope it happens soon!

Thanks narmada - ok, so I know I said I'd do anything to keep her confortable, but...
I had a go at going dairy free a couple of months ago - only did about 2 weeks and didn't notice any significant changes in dd (someone said it takes a month to kick in?), plus I was so knackered that constantly reading packets, making 'proper' food and trying to make lifestyle changes when I could barely function was sending me even madder, so when the paed said he thought it was an interesting experiment but nothing he'd specifically recommend, I breathed a sigh of relief and went back to dairy - maybe I'm too lazy or just a crap stressed Mum! On HV advice, I've given up orange juice and onions, again to no real effect. Might give dairy free another go though, if I can face it - i'm sure it's not as difficult as I'm making it, and dd sleeps little enough as it is without spending 8 hours thrashing about trying to poo. She goes every 2 or 3 days but then has a good empty out - 2 or 3 dirty nappies in close succession, but never without almost turning herself inside out first!!
I wondered whether to skip baby rice and go straight on to mashed fruit/veggies - instinct says baby rice isn't likely to be easily digested, given that it looks and tastes like glue! Maybe something fibrous (sp?) would transit more easily? But also heard that weaning as late as possible is the way forwards for refluxers, especially as even breast milk seems to defeat her at times? She's a silent refluxer so keeps it down, but still fights with it for ages after feeds! She's 6 months in 3 weeks so we need to make some decisions, I think...

Oh I so sympathise. When I was BF I tried the dairy thing for all of about 2 days and got so fed up - it was impossible to cook family meals that my toddler would also deign to eat.

Hope you find the solution soon.

Hiya,

Just my experience from very recently weaning refluxy DS - started him on baby rice and purees at 5 months, which he seemed happy with to begin with but then started to get horribly bunged up in his tummy and we were back to the back-arching leg-thrashing hours of screaming, like the early days. Since he turned 6 months I have given up on the spooning and just been giving him finger foods instead (I did BLW with DD a few years back so it's more familiar territory) and he is much happier. I think he was over-feeding on the mush whereas he controls his own intake with things like veg sticks and ricecakes.

I know they're all different and you'll find your own way but HTH!

Hi ladies narmada hugs about delayed result it's so hard waiting for something that could be so life changing. We had CF tests on Ds1 and I still remember the wait like yesterday. I hope they come through soon. How are you getting on giving the Lansoprazole? I found it easier as it didnt have to be with apple sauce all of the time! ell baby rice made my Ds2 go mental. Really didn't agree with him and I went for simple veg purees in the end. Its taken about 5 weeks to get to where we are now but he will eat from a spoon without gagging and wretching. He really wants to have his hands in the bowl and wants to feed himself that as soon as I think he wont choke I will give him more finger food. Im dairy and gluten free and im weaning him onto the same free diet. Its soooo unbelievably hard gluten is in EVERYTHING and I could kill for a KFC and bar of dairy milk washed down with a beer but reckon if it makes a difference to Ds then got to be worth it?! I have found that he is a bit more bunged up with solid food and I am trying to get him to drink water at meal times. Going back to paed on monday feels like forever since we were there last time. Got so many questions to ask though will have to write down he is so very rattley and inhalers doing nothing. Also not to be a negative nellie but there are so many people with swine flu around here starting to get very worried about Ds1 and inhalers of course Ds2 if He's going down that road too! Bring on monday and a possible binge on really crap food :-)

Hi Lady, well, the lansoprazole is the same formulation really as MUPS - it's still the little beady things when all said and done. I have been managing to get it down him though. Not noticed a massive difference - although the horrible acid smell on his breath has now completely gone so that is probably evidence it is getting into his system.

I hope you get some joy at the paed's on Monday. Does your DS choke on most foods? I remember my DD coughed and gagged a few times on finger foods but actually did much less of it than with the purees for some reason. YOu are so heroic for continuing with all the food avoidance.

DS is having an MRI brain scan on Mon afternoon so lady I shall think of you when at the hospital. The MRI lady told me to feed and wrap DS before the allotted appointment time, and assured me that 'most' babies lie still and most go to sleep when they dim the lights and turn the scanner on . I cannot see it working with my boy but hey, maybe a miracle will happen!

Hello everyone, can I join? My GP says ds (10 weeks) is just colicky, but we saw a cranial osteopath today who took a proper, detailed history and said she thinks it's silent reflux. I'd be grateful for any suggestions as the sleep deprivation is driving me potty! I was in tears after meeting my NCT group yesterday and seeing/hearing about their happy babies...

DS is ebf and has no set feed times - he is on and off the breast all day with hours of fussing, esp in the evening. Naps are either on me (on the boob) or in the sling (will tolerate my dh for this, than god, so I can send them out for an hour or so to shower/nap). He is miserable a lot of the time and fights sleep so gets overtired most days, leading to an early evening meltdown :(

Night times are currently our biggest issue - dh is in the spare room and I am co-sleeping with ds to get any sleep. He will not sleep in the cot at all - wakes immediately he is placed down and skips straight past grizzling to immediate hysterical screaming. At night he thrashes round for hours, especially after feeds. I just don't know what to do - how can I help him sleep?! Can't use a cot wedge as that needs a cot!

Does anyone have any ideas? We are all miserable and I spend nearly as much time crying as ds at the moment...:(

Hello,

I hope you don't mind me joining you but I'm wondering if you can help me and let me know what you think of
y daughter.

She is 12 weeks old, so not sure why things have suddenly changed-we're now questioning everything! I mix feed her, she has two bottles of formula a day and the rest I breastfeed. Recently she has become very fussy especially on the bottle at bed time. We thought it was due to needing to move teat size but although she took the variflow teat (tommee tippee) a couple of days ago really well we were back to the same problem that night. She thrashes about and goes like a rod of iron, throwing her head back and arching her back-she then had a hell of lot of wind, more than she's ever had! We have tried me breastfeeding instead or putingt the old teat on and she was ok ish in the end. She is also then waking up every couple of hours and feeding through the night. She is also occasionally waking up screaming, or crying in her sleep (mainly this is in the day) which is very upsetting for us both!! She is much better at feeding through the night and in the day though is still a bit unsettled. I have wondered if she is not getting enough milk from me but as she is doing it on the bottle more I just don't know. We have now bought the medium flow teats as she is a very strong sucker so was taking in far too much on the variflow and we felt was getting frustrated on the slow flow.

She seems to be in pain when feeding but then happy enough the rest of the time......on saying that it's really affecting her sleep now and she seems to be a baby who needs her sleep. She's waking up a few times in the night and it's a real battle to get her to sleep in the day.

I have the baby clinic on Monday to see the health visitor and get her weighed (she has been steadily putting on weight since birth) so I will mention it to her then. Is it worth going to see the dr?

Any advice is GREATLY appreciated!

Hi Plastic Spoon, that does sound refluxy - it is all very familiar, the pained screaming and thrashing . If it was me I would go back to the GP and demand to try Gaviscon at the very least (needs syringing in after every feed for a bf baby). Getting the right meds has made such a huge difference for us - Gaviscon and now ranitidine - out of the woods of sleep deprivation and everything else gets easier. There is hope!

NoTea, I hope the HV says something useful... not sure from the sound of it whether you are dealing with reflux there or colic... have you tried Dentinox or something like that for the windiness?

Baconflavour can I ask why you think it sounds colicky? Is it because of the time of day it is happening? Does anyone have any good remedies I can try? She is burping ok, with the aid of Infacol but still seems in terrible pain and is refusing to go back on the bottle, or clamps and yanks on and off the breast (ouch!!) Its really getting upsetting to see her in so much pain, and other than this I think she'd be such a happy baby! (if she'd only stop waking up in the night!!)
Anyone? I know this thread is about reflux so sorry if I'm hi-jacking a bit!!)

Thanks

Just because of the wind I guess... I am no expert at all - but extra night wakings might just be growth-spurt hunger, you might find this settles down again in a few more days (fingers crossed!).

gosh notea, it could be reflux, or any number of other things, or nothing - maybe a chat with the GP - or perhaps a BF counsellor - would be helpful.

Have you ruled out oral thrush? that can sometimes cause fussiness. Could she be teething? that can sometimes cause them to clamp down on things.

The variflow teats I find cause DS to swallow much too much air. Even rotated to the slowest opening he just gulps it down.

lady how did it go at the paed's? as i suspected DS's MRI wasn't a roaring success...cried and shuffled all the way through it. unsurprisingly.

plastic hugs to you its awful when you hear of other bouncing babies smiling away. I had a friend say to me the other day you've had a rotten time of mat leave haven't you? To which I think yes I bloomin well have but nice when someone else notices and you're not going as crazy as you think. Have you seen the AR pillow (i think if you search for that it comes up) could be ok? It has like a little strap to keep them in so could imagine that it would work on a bed or cot? notea sounds like reflux to me. I think the bottles are probably not helping with the wind situation but you've already acknowledged that. I think refluxy babies can be very windy. What's you hv said? narmada did think of you today. Poor little man. What did they do with him? You had chromosome results back yet? Our appointment ok. The consultant is lovely. Weight gain is about 11oz in 6 weeks but as I said to her he isn't pooing so I believe weight gain is less. Its reduced me to tears today as He's been really, really sobbing and getting hysterical trying to go. Ended up at gp and got script for Lactulose. Has done some very hard pellets tonight but again in agony. Dietician doesn't think He's got cow milk protein allergy or gluten so we're both back onto normal diet Yay! They said, He's putting weight on blah blah blah dont worry blah blah we've had women in with unconsolable crying babies yours is fine. Made me feel a bit of a fraud tbh. Anyway, they asked about sick and if it was just milk or solids in sick too. Well is WAS all milk until today. He has thrown up lots today and tonight twice that was proj vom felt like id gone back 3 months! Anyone know if constipation could have caused it?...Really hope we're not going backwards. Review in 3 weeks though. :)

Lady DD is intollerant to dairy soy wheat gluten etc, my pead seemed a bit sceptical but dietician a lot more understanding.
Dairy soy makes her proj vom, and very often. Wheat gluten has a totally different effect, she's all cramped up, farting like a trooper, but in agony. Screaming in pain with her tummy.
Sounds like lactulose isn't doing enough, try asking for some movicol.
9m old here and she still only sleeps either in my arms or finally for a 5-7hr stretchin her ARpillow at night.

I have come to the conclusion that no one can do anything to help. Crap crap crap crap crap. Been to out of hours as another day with hit and miss proj vom also 4 hours screaming this evening which is unusual for DS. They say no infection anywhere, just reflux keep an eye on him. I just want a magic cure now! Felt like such a fraud yesterday and now this. Little darling children never do it when you need someone else to see so they know it's not just you :(