All new deluxe reflux support thread

(323 Posts)
buttonmoon78 Fri 23-Sep-11 08:04:53

Welcome one and all!

highlandbird Fri 23-Sep-11 10:44:13

oh, hello, is it alright if I join this thread? My LO is 6 months old and has now been on ranitidine for the past few days...hard to see if its making a difference yet as he is sooooo constipated that he's constantly crying with that now. Really thought his SR would have improved by now but we're still having 3 hour screaming marathons every evening. He's fine in the daytime really jolly and smiley, between 8 and 11pm is his really bad time. Would be really nice to hear I'm not alone in this (if that doesn't sound too selfish!) and to know how anyone else's LO that is on ranitidine is getting on, how long it takes to work etc?
He's also on lactulose for the constipation, gaviscon I think is what caused it in the first place, poor mite, feels like I'm stuffing him full of bloody prescription drugs but just at a complete loss as to what to do next sad
Also does anyone else feel that their HV doesn't take them seriously or is it just me thats been unlucky?!

Bubandbump Fri 23-Sep-11 10:46:31

Morning all

<peers at squeaky new thread whilst stettling down comfortably for the duration, would take out knitting but I don't do it and would pour myself a cup of tea but can't as dairy free...>

BBB welcome from AIBU. I second everything re Dr Lindley - our DD is under him <wonders if mumsnet is taking commission from him> and he is lovely but most importantly really listens and fills you with confidence (as opposed to my GPs who asked what medication I would like..). DD is cmpi as well as soy, wheat and eggs.

Just an update, we are on day 3 of sleep at night- the injections knocked her and started the reflux again even though exclusion diet was working. It took 6 days after her injections whereas it normally takes 9 days after a slippage in my diet.

We are going to start her on formula next week now (fingers, toes and everything crossed) she seems to be stable again (she is ebf and a bottle refusenik unless it has gaviscon inconfused. The GP has given us nutramigen instead of the neocate that Dr Lindley recommended. I don't know whether to try her with this as she is super super sensitive to even a trace of dairy and don't want to go through 9 days of hell instead of going to GP and demanding neocate.

Does anyone have any thoughts on nutramigen v neocate?

Bubandbump Fri 23-Sep-11 10:53:44

Highlandbird welcome to this highly undesirable club. My DD is on ranitidine and it does take a week to start kicking in. It doesn't stop the sickness, just how much it hurts. Also it seems that the minimal amount the GPs feel comfortable prescribing don't often have any effect. If so, you need to get a referral to a paed.

My HV kept insisting it was colic and colief should work (yeah that's for really rare lactose intolerance, so she was clearly just making it up). I just ignored her and turned up at the GPs every week with a screaming baby. They got very fed up of me very quickly..and I got my referral.

MotherPanda Fri 23-Sep-11 10:59:19

Hello, Everyone -I'm going to jump aboard.

Highlandbird - I know what you mean about HVs - I think its because a lot of people say their baby has reflux when actually, their babies are just a little bit sick sometimes.

I figured out my baby had reflux around 4 weeks - we are now 8 weeks and things are so much better! She was constantly bubbling at the mouth, sick at least 5 times between feeds (what a PVer!), I couldn't put her on her back ever and she was just always screaming in pain. Weight was gaining very slowly - which was my main worry.

Thankfully for us a mix of infacol and gaviscon has made all the difference - she is a bit constipated now, but it doesn't seem to bother her as much as the acid pains did. Have been doing lots of baby massage to help things move along. It's funny because my DD is breastfed - so everyone I ask for help with just tells me that breastfed babies can't get constipated...hmm

My magic remedies: Infacol, before every feed, Gaviscon, I wish I'd had a bouncy chair from the start - I can finally use the toilet in peace! I tilted her moses basket with books at the head, Using the sling around the house. Make sure I sit DD up for 30mins after a feed - sleeping at night in the car seat if it comes to it.

I'm curious as to weather my dd is actually milk intolerant... Lactose intollerance seems to run in my family - and we have some awful smelling wind and poos (somebody told me bf poo smells like freshly baked bread - dds smells like dog poo or worse). Has anybody else noticed this? I've switched over to goats milk to see if it helps but I really don't want to give up cheese sad

Sorry for the long post!

Bubandbump Fri 23-Sep-11 11:09:52

Motherpanda welcome too. Just a quick one, yes DD's poos were runny and smelly, now 'normal' on exclusion diet. Goats milk unfortunately normally won't help as the proteins are too similar to cows milk. Some cmpi babies also react to soya for the same reason. My DD reacts to any trace of dairy and similar proteins, no matter how small.

And to answer BBB on the previous thread, excluding DD's intolerant foods turned our lives around. From a baby who would only sleep in our arms at night otherwise she would arch her back and bang her head against the cot whilst clawing at her ears, to a sleepy contented baby who doesn't really have any reflux. I am on a pretty restricted diet but it's more than worth it to see all of her symptoms disappear. There are so many alternatives to dairy and soya that it's not even that hard.

MotherPanda Fri 23-Sep-11 12:03:28

Thanks Bubandbump. oh dear - looks like I need to start excluding things too then... I guess things like rice milk should be ok? Think I'll have to get in touch with my vegan sister and ask for some guidance. So many things have soya or dairy in. hopefully dd's fine with eggs...

buttonmoon78 Fri 23-Sep-11 12:50:36

Well, we still seem to be having a good day. I don't know whether it's the new bottles or the new formula. I don't really care - the formula is no more expensive really and if it means another few £s to complete the set of 6 bottles that's a small price to pay for such an improvement.

Ironically, I met a friend for coffee this morning (first time out socialising because of reflux) and she was going 'oh, he's in such pain isn't he? what a lot of sick! you must be at the end of your tether...' etc etc. I didn't dare tell her that this was a good day! It has put into perspective what a 'normal' baby should be like and made me realise that yes, we do still need to see the paed!

daisylulu Fri 23-Sep-11 12:50:37

bupandbump sorry to make quick but need to attend to J- however just wanted to say I would strongly push for neocate. Ime it's as palatable as nutramigen but more importantly less likely to get reaction. J still had funny runny poos on nutramigen - well actually she was ok for first two weeks then proteins built back up. Lindley also said neocate has healing qualities which nutramigen does not have. He said gps are told not to prescribe it as it's £37 a tin vs £14 for nutramigen. But he also said that as he was recommending it in his letter to the gp then they should prescribe it.

Hi newbies and welcome to our horrible but very supportive club. Will be back later to catch up with posts properly.

highlandbird Fri 23-Sep-11 13:31:56

Ah, it would appear we're not the only ones suffering then, although I think our problem isn't as bad as it is for some of you.....we don't get all the projectile vomits its silent reflux in this house, and he's generally really jolly and smiley in the day, his bad time where he wakes up and screams and screams is about 8pm to 11pm, really hoped he would have grown out of it by now. We're doing BLW here and I thought the introduction of solids would have helped a bit but it hasn't, we've been doing the rounds of colief, gaviscon etc since he was about 4 weeks old but nothing seems to work, so fingers crossed for the ranitidine now, its just I won't know if it works until the constipation has eased....just bf him today no solids as don't want to bung him up any more sad
Not a fun club you're right but always good to share advice smile keep telling myself it won't last forever (let the 'it will pass at 12 weeks' mantra slip a loooong time ago!)
Thanks.

Bubandbump Fri 23-Sep-11 13:39:19

Phnyes I did the 12 week thing - I am now on the 6 month thing and burrowing my head firmly in the sand..

Daisylulu we are back to see Dr Lindley on Tues and he did say in his letter last time that she should be prescribed neocate if on formula. We haven't tried her on any yet so wasn't too fussed when the GP gave us nutramigen but now we are planning to introduce one bottle a day, I want the best possible outcome especially as she needs to get used to the taste. I'll go back to the GP and tell them she reacted to nutramigen - just pre-emptingnwhat is likely to happen!

Bubandbump Fri 23-Sep-11 13:56:53

Motherpanda yes rice milk is fine. I honestly didn't find non dairy too bad, it's the wheat and eggs that are a bit harder for me!

M&S do some non dairy and non soy bread, there is rice milk or oatly which is creamier and has cream alternatives. Unfortunately I think most of the cheeses aren't supposed to be that nice but there is normally a free from section in the supermarket. Double check chicken breasts and ham - it's amazing what cr*p they add to straight forward food..

camdancer Fri 23-Sep-11 14:06:15

I'm in. DD2 is 16 weeks and on ranitidine. Luckily after DD1 was also on ranitidine but max dose, my GP just prescribed the maximum dose immediately. She is ebf so I'm trying to find out what in my diet affects her. So far it's gluten and dairy. Dairy was this week and almost immediately she got spotty and her poos were just nasty. It is so hard trying to work out what is doing the harm as there are so many other things it could be. Next week I'm going to try corn and if that is ok, egg.

Anyway as a veteran reflux-mum (DS was a happy spitter, DD1 had silent reflux) my big tips are:
use a sling
but lots of muslins and washing powder
use a dummy
hassle your GP until you get a referral or they listen to you. No baby should be in pain.

motherpanda be careful with rice milk. Aparently it has high levels of arsenic that can pass through breastmilk. It isn't recommended for under 4's for that reason. sad

highlandBird DS and DD1 were both blw and the reflux didn't stop until about 9 months. Sorry.

beckieperk Fri 23-Sep-11 14:19:02

Hi everyone. I have had a similar experience to buttonmoon78. My ds now 8 weeks was so uncomfortable just a week or so ago I thought I would go crazy. However have now changed his bottles (dr browns), have been prescribed gaviscon and using dentinox with every feed. He is like a new baby most of the time. I keep the gaviscon feeds for both his 10 o'clock feeds and nighttime feeds where necessary. This seems to make him a little more settled through the night. He still has bad spells where he screams and screams don't get me wrong, but compared to before it's like heaven.
Chances are all the things we have done have helped, but of course there's also the possibility he's just grown out of it too. Who knows/cares...so long as it's better.
Just a couple of questions - my ds is now so content during the day he is sleeping loads 2-3 hours between feeds sometimes, which i am presuming is why every morning 0430 am is party time in our house, should I just ride with it for now?
Also he is still having 150ml feeds (which he hardly ever finishes!!) every 3 hours roughly -again should I just ride with it? My ds was 12lb 13oz at last weigh in so not too concerned about his wellbeing - he's a big lad.
TIA. smilesmilesmile

buttonmoon78 Fri 23-Sep-11 14:54:25

Hi Beckie

I think you must be me! After gloating about how good he's been this morning he's screamed non-stop since blush. Now passed out in an exhausted stupor...

DS is having 4oz (120ml) but about 7 times a day. Sometimes he might have a feed where he only gets through an oz or 2 but generally he manages 4. It seems to have helped, rather than to offer him 5oz. Again, he goes 2-3 hours and yes, we are also having party time early doors though usually about 5/5.30 for us! I wouldn't mind so much but he generally goes down about 11/11.30 but is up 1/2 and then again 4/5. It was soooo much easier in that way when he was bf - I regularly beat myself up about that at night.

DS was 12lb 12oz last weds (nearly 9wks) so his weight is not causing anyone an concern. Apart from me earlier this week when I thought that the sheer amount he was vomiting must mean a slow down soon. However, with the improvement I'm hoping that won't happen. Am planning to get him weighed again on Weds next week in anticipation of the paed appt on Friday so it'll be a full fortnight then - a reasonable gap to assess what he's been up to.

beckieperk Fri 23-Sep-11 15:00:10

Our babies are mirror images of one another buttonmoon....I'm not counting my chickens that the day sleeps will last.....just making the most of doing washing, cleaning and reading my book (while eating Jaffa cakes) while it lasts!!! Ha.
I am also waiting for a paed appointment....said it could take up to 6 weeks....please god no!!!!
I'll keep my fingers crossed for you. Let me know any updates/tips as you have them....ds just stirring after another 1.5 hour sleep!!!

Bubandbump Fri 23-Sep-11 15:27:10

Camdancer how did you figure out gluten intolerance? I did cut out all gluten though honestly just thinking it was wheat, so after a few stable days decided to have porridge for breakfast. She has just started refluxing again arghhh..

camdancer Fri 23-Sep-11 15:55:42

Bubandump Did you use gluten free oats? I found out that even though oats are naturally gluten free, they are milled in the same places as wheat. So you have to try to find the gluten free oats, rather than just normal ones. Yet another expense. Grrr.

I did a total elimination - ended up on just chicken, rice, potato, courgette and butternut squash. I never managed to get her completely symptom free, but good enough. When I brought back the gluten she was writhing around again. She wasn't dreadful but bad enough for an intolerance rather than allergy IYSWIM.

camdancer Fri 23-Sep-11 15:56:22

Sorry, bubandbump. Damn those spelling mistakes.

buttonmoon78 Fri 23-Sep-11 16:25:44

Aaaargh.

Just had another major acid reflux episode at school. We were doing so well. It was gushing out of his mouth - almost pure acid with a few white bits of milk in. Poor love, he was shrieking sad

Beautifulbabyboy Sat 24-Sep-11 03:54:09

Well it is 3am, and am back on shift! Am so glad my hubby doesn't have to be in an office at 9am, so we can split the night in 2, otherwise we would be going insane.

So sorry for not responding during the day but my BBB who was happy and smiley when awake during the day, has unfortunately disappeared :-((. Generally now when awake at any time he is screaming. We bought a baby bjorn sling and it would appear that it is going to be a godsend. Am still nervous I will fall over and squash him - but hey I am nervous about everything at the moment, so will just add that to the list. :-))

Thanks for all the positive statements about Dr Lindley - it is actually because of mumsnet we are going to see him. I don't think there is any better recommendation than other mums. Might tell him "I am here because Buttonmoon said you were fab"

Also Buttonmoon, we bought the Dr Brown's bottles this morning! My DH said he thought they were a gimic - and I uttered the immortal words "but mothers on mumset said they were working...." so we now have 2! I think this phrase may start coming out of my mouth a lot! However, given we are now also on Gaviscon (another emergency trip to GP with a "you have to help me...") - can anyone tell me what number teat they used. It appears that Gaviscon thickens milk and it is not flowing easily through the teat - should we get number 2 / number 3 teats?

Finally, for the first time in a week, the little one is currently not asleep on my chest as I write this. Hubby in his shift, put him to sleep on his side in his cot (arm outstretched, small towel wedge in front of him). I am sat in the spare bedroom next door, can hear him through the walls, through both open doors and see/hear him on the video monitor (samsung - amazing - definitely recommend). There is no way I would go asleep when he is on his side - am going to speak to HV about it before I consider it. But has anyone found that sleeping on their side makes a difference to reflux babies? He still makes a lot of noise (i.e. grunts/growns every 2 minutes) but is actually calm which is first ie. haven't had to pick him up to stop the pain escalating..

Beautifulbabyboy Sat 24-Sep-11 04:06:59

Sorry highlandbird if your HV doesn't believe or support you. Try and speak to another HV - I have been really lucky and have a supportive team, and it does make a difference just knowing that people want to work with you. Is your GP supportive?

(Also even if your HV is a pain - be rest assured we believe and support you, and I think even just since starting on mumsnet i feel so much calmer - I really wasn't calm before....)

minicorrect Sat 24-Sep-11 04:37:48

Morning all [rubs bleary eyes]!

My DD is 7 wo and has been diagnosed by GP as having reflux and prescribed Gaviscon which we syringe into her mouth after all daytime feeds. Haven't bothered at night as she falls asleep feeding and S don't think it's right to wake her.

She will generally only sleep on her front or side and will wake up if we try her on her back. We co sleep though which seems to work and by the end of the night, when she's really congested, pre sleeps propped up against my tummy!

Reading through your posts above, I wonder if I should be trying anything else apart from Gaviscon? It has made a difference but she chokes and splutters on it and sometimes vomits it back up quite severely - to include all use milk too. Are we doing something wrong? It takes ages to give her just one dose and at nearly 11lb she should be on 2.

Look forward to getting to know you - although wish I didn't have to!! wink

Beautifulbabyboy Sat 24-Sep-11 05:06:21

Hi mini correct - am glad to see that you find sleeping on side helps. I wonder why it is?

We have just started on gaviscon, and after feed number 2, Little BBB did a vomit which put his previous massive vomits to shame. I don't know if that is the gaviscon or just the reflux taking another twist and turn. As we are bottle feeding we add the gaviscon to that - wish i could advise you on BF, but am no help there, sorry.

SkiBumMum Sat 24-Sep-11 05:10:21

To anyone in Herts - we have a Reflux Support Group here in Harpenden and it's fab. PM me if you want details.

Beautifulbabyboy Sat 24-Sep-11 05:11:25

also minicorrect we are on ranitidine. But tbh we have only just started medication so I am not the best to advise you, nothing has made a difference yet, however, give me a few weeks and no doubt I will be an old hat :-(

beckieperk Sat 24-Sep-11 10:40:31

Hi again everyone. LO sleeps so much better on his side/tummy, especially tummy. This is of little help however as I can't sleep when he's on his front.....I just sit staring at him making sure his back is rising and falling....ha. Still no sleep....Zzzzzzzz!! Anyway he has now taken to half rolling onto his side (kind of from the waist up?!) even when I lie him on his back. He still splutters/coughs but nowhere near as much. smile Again he seems a little happier again today....even after 0430 party time. Would deffo say that the new bottles have helped beautifulbabyboy, gimic or not which is what I thought, so persevere and I'll keep my fingers crossed. My LO was diagnosed with colic also.... Which I think is often a symptom of reflux....so perhaps the bottles/dentinox are making that better not necessarily the reflux. Iyswim?! Xx

Mollcat Sat 24-Sep-11 13:20:32

A quick question about CMPI poos: when my son was fed more formula than he is now, he poos were browner, runny (still BF consistency though, not super runny) and pretty smelly. He's now almost exclusively fed EBM with say 100mls of Aptamil twice a week when I've just not managed to pump enough. Poos much more normal BF poos now.

Seems to be responding well to ranitidine (only started on Thurs pm though so hmm) or it could be the latest CO session yesterday. Seems to be much more like his adorable old self today - yay! (Welcome back lovely boy, we missed you).

Should I be a bit suspicious of the earlier poos and CMPI do you think? I sort of am anyway but am just wondering whether I'm being paranoid as we have had a lot going on in the last 4 months... (TT, thrush, SR, birth trauma).

buttonmoon78 Sat 24-Sep-11 19:55:35

Gimmick shimmick. I've just bought 4 more. I think they're ace.

Apparently sleeping on their L side is the best position and ds finds it better as he chokes less when sick.

I must be a really blase mum as if he's asleep so am I - even if he is on his side...

Beautifulbabyboy Sun 25-Sep-11 04:06:16

Hi all, so we have had the worst day yet. :-(( Prior to starting the medication, little BBB was a silent refluxer, which for us meant that when laid down on his back he was constantly writhing and groaning in what looked like agony, which is what prompted the first of the trips to the doctors. The rest of the time he was a happy baby boy. Since starting the medication (ranitidine 6 days now, gaviscon 2 days) every day has been worse than the last, and today we have had the worst day yet. He projectile vomited 4 times, and once retched until his mouth was swirling with sick, before I turned him over, banged him on the back, until it fell out. DH and I are now thinking we have turned what was a bad situation, into a nightmare one. We don't know what to do. I am once again writing this with him asleep on my chest. We have decided to stop the medication until we see the consultant on tuesday, I know this is probably stupid but i don't want him to get worse. Today- if awake he screamed.

Alison thingy's book with the chapter on reflux arrived. I read that and then panicked as she says she knows of reflux babies who have died and that breathing alarms should be used with them. I was trying to avoid the whole breathing alarm thing as I didn't want to be overly hyper cautious....and was relying on the stats that only 0.04% of babies born in UK die of cot death, and we don't smoke etc. Anyway, we now have breathing alarm in his cot - not that we need it right now, given he is asleep on me.....

Don't worry Buttonmoon, you are not blase just getting the sleep you need to cope.

On a lighter note, my best friend came to see me today and arrived at moment of breakdown, me crying with exhaustion, baby crying in pain, DH trying to figure out how to use breathing alarm, all of us very stressed. My first comment to her was "you know how all our friends makes motherhood look easier, and act as though their babies are a dream - I said they're lying, it's blooming hard work, and stressful and scary" To which she went quiet and said " i am 9 weeks pregnant" - poor girl, I was so not what she needed to see when just having found out she is pregnant!! :-))

Laurale31 Sun 25-Sep-11 09:02:36

Hello everyone! Sending hugs to u all! My ds is 8 months now, silent reflux, cmpi too, things are so much better now but I have to say it's been the hardest thing I have dealt with in my life!
He was diagnosed at 12 weeks, put on ranitidine ( took around 1 week to work) but he also has carobel thickener in his neocate which has made a huge difference, and doctor browns bottles with number 3 teats, we started all at same time so I don't know which ones making the difference and im too scared to eliminate any just incase! He still only takes little feeds 4oz 5 times a day, is only 14lb6oz at 8 months, he Is a very happy baby now and you wouldn't know it'd been so bad back then!
From about 12 weeks he would only settle on his side or stomach,
I have tried cranial osteopath but don't think it made any difference- if anything he started showing signs of reflux after again confused ,
Always check ranitidine dosage with weight gain- most times he starts to show signs again it's because hes gained weight and dosage not working,
Hope u all start to see little ones getting better, xxx

Bubandbump Sun 25-Sep-11 11:36:37

BBB that's exactly what happened to my DD. In her case, it was the cmpi which apparently starts at about 5 weeks old which was building up and getting worse. Also the longer it goes on, the more the acid burns and the more it hurts so you are bound to see an increase in symptoms.

At least Tuesday isn't far away (we have an app too on Tues at 12.30 so might see you there!) and then you should have a diagnosis and a way to getting it better or managed on medication. That's only 2 more nights and it's amazing what we can do for the sake of our babies.

We had much writhing and smelly poos and farts last night from the oats but no where near as bad as when it's cmp so fingers crossed we might see an improvement before 9 days.

buttonmoon78 Sun 25-Sep-11 15:19:56

We've had a pretty ropey day here too.

DS was sick an awful lot this morning and was choking on the quantity. He gets particularly distressed when it comes down his nose as he can't breathe at all then. He was pretty bad during the night too. I really thought these new bottles were helping, as was the new formula. I suppose it might be, but it still seems to be getting worse each day.

ALthough, as I type, he's sleeping peacefully in his car seat, looking like an angel. Smelling like something else entirely!

I guess we just grit our teeth and get on with it until Friday. At least DH is only away Mon night this week. Though, I get really tetchy about that as I'm so aware of how the interrupted nights impact on his sleep and he does an awful lot of driving for work which really makes me worry.

beckieperk Sun 25-Sep-11 16:25:02

Me again. Sorry to hear things are bad at your end buttonmoon. That's really rubbish. Ds seems about the same today.....only really bad after feeds which don't contain gaviscon now really....which isn't a great help in the long run!!!
Can anyone advise me on whether they have tried spreading the gaviscon between all the feeds? My ds is over 10lb so according to the packet can have 2 sachets...however he is still only drinking 150ml so not enough liquid to mix 2 sachets iyswim? Dr said only 4 doses a day a few weeks ago when first given.
Any advice? I'm still waiting for my appointment with the paed....until then need to try whatever I can.
TIA. smilesmile

Boobz Sun 25-Sep-11 19:42:04

Minicorrect! Come and tell us on the homebirth thread a about the arrival of your DD, or else I will wipe your name from the list!

Homebirth thread you put your name on and now we demand a birth story and perhaps a photo

fizzypigs Sun 25-Sep-11 20:20:27

Hi a newbie here. 7 wko Baby diagnosed with reflux on fri. Being giving infant gaviscon since then. It seemed to be going ok (managing to sleep!!) until today. Bf so having to give after feeds by bottle baby is now refusing or falling asleep. Baby has also developed constipation. Has anyone got any tips or tricks about how to get gaviscon in when bf? How to deal with the constipation? Or is there an alternate to gaviscon? Thanks!

buttonmoon78 Mon 26-Sep-11 07:35:40

Hi beckie

We were advised by our pharmacist to add one sachet to each bottle (as he's generally on 6ish) of 150ml as that's what he'll take if that's 5oz. I couldn't work out what to do either as he was a good weight but only taking 5oz. I had visions of making 8oz and chucking 3oz away and with the cost of formula I wasn't happy!

Beautifulbabyboy Mon 26-Sep-11 07:36:18

Sorry to hear Buttonmoon about your bad day, thinking of you (and all the other mums on here) - we get so optimistic when something good happens (ie a few good hours / good night) that we actually begin to think we are at the end of the dark tunnel, and then the tunnel bl**dy lengthens....Also, please don't worry about your DH driving but I know its hard not to worry about everything when we are tired and anxious about DC.

BubaandBump I can't believe you are at GOSH on tuesday as well. Mr Linley really does owe his following to mumnset. Our appointment is 10.30 so if you see a woman with (fake ;-) blonde hair and a tall thin hubby with slightly curly hair with a baby boy, that will no doubt smile and coo for the Dr (grrr), that will be us.

Anyway, I am pleased to report that we had a better night. Stopping all the medication has put us back at "bad situation" but at least we are out of "nightmare situation". But it makes no sense. He still spent large periods of last night, coughing, arching his back and making straining and squealing noises (on his side in his cot) but he has not cried inconsolably or projectile vomited, which makes it seem like progress. HOwever, worryingly his fluid intake is going further down though - fortunately in week 3 of his life he put on lot of weight (600g) so we have a bit of buffer. You can see the pain in his face when he eats. Overall, am really beginning to think he has CMPI....

Beckiperk - sorry I can't help on your gaviscon question. Why don't you phone GP again and ask what you can do. If you DC is better after having it in their feed, then it makes no sense to omit it.
Welcome fizzypigs - I am afraid I didn't BF. So can't help (I am beginning to think I am no support on this thread as can give no advice - am sending positive thoughts to everyone though).

daisylulu Mon 26-Sep-11 08:07:38

Hi everyone

BBB really glad you only have to wait until tomorrow to see Lindley. Not that I'm a doctor but it does sound like your LO may have cmpi. It will be good to get a proper diagnosis and be on the road to making things better. Please let us know how you get on. Also please don't worry about not giving advice! When my LO was first having her reflux symptoms I was on here all the time asking for advice and coming here to offload- it's only now J has improved and that we've had a proper diagnosis that I can offer any kind of advice.

Hi to all the other newbies. Sorry don't know much about gaviscon as my LO went straight to domperidone and ranitidine.I hope you manager get your LOs improved soon- there really is light at the end of the tunnel with the right meds and formula.

Did someone ask about cmpi poo? (sorry can't scroll back as on iPhone). Js poos were runny when having cmpi reaction . She would struggle to go and then when she did they'd be very runny and explosive - apparently a key symptom of cmpi. J also used to be very windy before going on amino acid based formula. Her poos are now nice and normal. Apparently cmpi poos can be blood and mucus streaked though J only had a bit of mucus once.

As for us... j had her jabs on Thursday and we saw a reflux flare up as Lindley warned us. We had projectile vomiting fri eve but she seems better now. We've also managed to reduce her domperidone by a third over the last week and so far so good. Assuming she remains stable this week we are going to drop another dose next week. Interestingly J threw up her omeprazole two days in a row with no ill effects so we are going to start reducing that too as soon as we've got her off the domperidone.

We started weaning J 2 weeks ago (on Dr Lindleys orders! We were going to wait until she was 6 months...) and that seems to be going well. Just one meal a day at the moment but will start increasing that soon.

Hope you all have a peaceful non-refluxy day with your LOs.

beckieperk Mon 26-Sep-11 08:09:38

Thank you buttonmoon....just scared in case I od him....but im sure 2 extra sachets in 24 hrs is not going to be harmful at his weight. Is it?!
Thanks for reply beautifulbabyboy. Good luck at gosh. wink

buttonmoon78 Mon 26-Sep-11 22:03:19

Beckie I've only just read the bit about the dr saying only 4 sachets. I think the instructions say 6 max? DS was nearly 12lb when gp said to give him 6.

Since changing to Aptamil his constipation has eased significantly so today I've put him back onto a full sachet of gaviscon in each bottle. His vomiting has decreased again but he's had several bouts of pretty much inconsolable screaming which I don't understand confused

I'm really envy of those of you who have access to a specialist who understands. I'm so worried that our paed on Friday will be one of the doubters. After last week's major wobble, I feel much more positive but it wouldn't take much to tip me back over the edge again. I reckon a doubting dr would do it in a flash sad

buttonmoon78 Mon 26-Sep-11 22:04:12

Also, I think that od-ing would probably lead to constipation but not much else. So totally reversible if a little distressing at the time.

highlandbird Tue 27-Sep-11 14:58:02

Finally been referred to a paediatrician after a week on ranitidine and absolutely no difference at all, hopefully we'll get to see him next week so fingers crossed he has some answers although looking at all your experiences I doubt he will....

Glad the doctor is finally taking me seriously though.

Ive also now started having him sleep in bed with me (at 6 months old, god knows how long it will take to reverse that habit!!!) I am just so sleep deprived I don't know what else to do, at least I can rub his tummy and try and comfort him without pacing the floor whilst falling asleep myself! And he likes to have booby for comfort which is fine with me, whatever helps really!

fizzypigs my LO never took a bottle so I used to express a wee bit and then put it in a little cup with a lip on it, mixed with gaviscon and feed it to him that way, its a faff though! Also I don't know if you do baby massage but that done corectly on their tummies can help with constipation. Good luck!

Mollcat Tue 27-Sep-11 18:50:58

daisylulu that was me with the poo query - thanks!

daisylulu Wed 28-Sep-11 09:46:36

highlandbird good luck with the paed next week. Don't worry about setting bad sleeping habits- do what to have to do to get through this. Being sleep deprived is going to make a bad situation unbearable.

mollcat glad to have helped grin

BBB and bubandbump how did you both get on with lindley? Did you bump into each other?!

buttonmoon78 Wed 28-Sep-11 09:56:53

I agree with daisy highland - deal with one thing at a time - you are not superwoman! All my other three hardly slept on me in the day but ds2 is constantly cat-napping on me - hence me being on here all the time, it beats Jeremy Kyle! My GF following friend raised her eyebrows at that (the sleeping on me not not watching JK!) but I think 'stuff her - she's not had to deal with this'. I'll worry about his self-settling abilities or complete lack of them when we've got over this hurdle.

And I too was coming on to find out how BBB and bubandbump got on yesterday with the sainted Mr Lindley wink

Friday and our paed appt is approaching and I can feel myself getting well stressed about it. It doesn't help that my gp has never heard of Dr Tabor so I've no idea what to expect - sympathy and help or disbelief and the brush off.

I had S weighed yesterday in anticipation and he's now 13lb15 so he's really levelled off on his gain over the past 2 weeks. I guess that could be because he's found his level or it could also be due to the mega vomiting he's been doing. I don't know!

DD1 is 14 tomorrow so I'm going to make her a cake today if it's the only thing I achieve!

Bubandbump Wed 28-Sep-11 17:16:02

Hi, sorry for the delay - been making the most of the lovely weather! We didn't bump into BBB but we had a great appointment. We knew she was definitely intolerant because of her reaction to dairy, soya, wheat, eggs and oats.

He doesn't think she has reflux so when she has been stable for 3 weeks we can drop the ranitidine. We won't wean her early and when we do, we will not give her the foods she reacts to, we will do controlled food trials with these when she is 18 months old.

We got neocate, picked it up from the gp this morning and will be starting her on a bottle a day to get used to the taste as she has been ebf.

And most of you will hate me for this but last night she did a solid 7 hours - after 4 months of 2 hourly wake ups at best, I kept waking up to watch her breathing..

beckieperk Wed 28-Sep-11 19:20:35

I think that is brilliant bumandbump (even though I am a little jealous!!wink). Well done u. I can't wait for my paed appointment and will hopefully get it sorted and have my own 7 hours sleep fest....ha. Fingers crossed. smilesmilesmile

Bubandbump Wed 28-Sep-11 22:30:11

Well that lasted all of 1 nought gahh

Bubandbump Wed 28-Sep-11 22:30:40

That would be night..not nought..

Beautifulbabyboy Thu 29-Sep-11 20:38:48

Hi bubandbump and everyone else - sorry for the delay in being online, but have been even too tired to check posts etc. I am a first time mum and can honestly say am in shock about how hard parenthood is - it is unbelievable. I am so looking forward to DS's first smile - i so need him to be happy. Given he is 6 weeks now, it should be any day....

Also, glad to hear your appointment with Lindley went well. He prescribed necoate to us too - protein intolerance. So we have been on it for a little over 2 1/2 days. I don't know if it is the weather or what, but today my little boy has hardly eaten/drank anything. Normally in a day he consumes 800ml, and today we will be lucky if we reach 700ml, and every feed has been a battle to get fluid into him. Apparently the neocate tastes different to Aptimil, less sweet, but Lindley said he wouldn't be able to tell. Overall, we have seen some little changes, but I don't know about longterm whether they will stay or go. Trying hard not to get excited about the little things, in case they are only temporary.

I think i going to check out a new parents thread on here as well - I do like the camaraderie that this site provides. :-))

buttonmoon78 Thu 29-Sep-11 20:58:32

After such an improvement we've had a total backsliding today - mucho vomiting. He's also really mucousy - always rattling and snorting, but that's not a new thing. And the last couple of weeks he's taken to rubbing his nose on anything he can - as soon as you pick him up and put him up to your shoulder he rubs his nose as hard as he can. He looks like I feel when I have that nasty persistent hayfever itch but I don't think it's that!

I'm glad you've both got somewhere. We've got our appointment tomorrow morning so I'm really nervous. Thankfully, DH was due to be at home today but instead has arranged to be here tomorrow so he's coming with me.

BBB ds2 smiled lots and lots at 3 weeks at dh, at dds & ds1, at dh's aunt, at dm, at dmil, the dog, basically at everyone. Except me. The little git darling made me wait until nearly 7 weeks for more than a single solitary smirk he had thrown me like a sop at nearly 4 weeks.

DS not been coping too well with the heat today. I think it's more to do with the humidity than the heat tbf but each time I picked him up after a nap there was a nice wet circle where his head had been on the carrycot/basket mattress. Niiice - a total sweaty betty!

LoveBeingAMummyAgain Fri 30-Sep-11 05:47:36

Hi guys don't want to jinx it, like it appears to have happened for done of you but da has just slept from 11-5am grin. I can't believe it. After lookingonline again last night for some advice I realised that maybe I hadn't raise the end of the Moses basket enough for there the be any effect. It said it needed to be 6-8", I'd only used one book. So two hardbacks lasted and he slept like a baby wink. I can't believe I had 4 hours of sleep in one go (he slept but dd woke up sad ). Anyway its probably going to only be tonight so thought I'd share. Going to the gps tomorrow so we'll see if they are a believer!

One question in anticipation what are your top tips for getting ga is on into a ebf 3 week old?

Tia

LoveBeingAMummyAgain Fri 30-Sep-11 05:48:52

Oh and after a feed has gone straight back to sleep without a sound [
Shock].

beckieperk Fri 30-Sep-11 14:23:54

I had a relatively good night too. 7.30 till 12 then till 4.30. Woke again at 6.30 but put him in bed with me for a cuddle and he slept till ten to eight!! Think that might be cheating.....but it's the most sleep I've had in 9 weeks so who cares!! Lol. wink

buttonmoon78 Sat 01-Oct-11 09:44:44

Well, we had a good appointment. The dr was very lovely and gave us the option of anything we wanted! shock In the end we're going to try gaviscon and ranitidine in conjunction with eachother as we've not been allowed to try that yet. Dr has sent a letter to gp saying that if, after a week, we feel there is little or no improvement he is to prescribe domperidone immediately and omeprazole after that.

So I'm feeling a lot more positive as I was half expecting to deal with someone who didn't even think it was a problem!

Funnily enough, I said that we were advised to wean dd early to help with the reflux but that I wasn't keen to do that again. Dr laughed and said 'if you get to 5 months with this bruiser I'll eat my words' grin When I questioned her over the 6m milk-exclusivity thing she said what the WHO failed to take into account is that larger babies often have maturer guts than smaller babies and lose their gag reflex sooner and therefore genuinely are ready sooner. I've not heard that before so can't comment on its accuracy but I thought it interesting!

However - after all that positivity, it was always going to shatter wasn't it? We've just had the worst night EVER with ds. As in worse than night 3 before my milk came in. Just plain hideous. Of course he's now in his basket sleeping off the stresses of the night. I'm sitting here mning being very busy. wink

LoveBeingAMummyAgain Sat 01-Oct-11 13:04:20

Well yes it was just a one off sad gp did give me gaviscon so he had that last night for the first time and he's just had his second lot now.

I'm right that it's not something that builds up to work aren't I?

silverangel Sat 01-Oct-11 19:55:42

Hi all,

Can I join too please? I have nearly 9 week old identical twin girls born at 31 weeks, they have been home from SCBU for nearly four weeks now. They have been on gaviscon, ranitidine and domperidone from about 3 weeks old. They are currently on 100ml of formula 6 x a day with a sachet of gaviscon per feed, 1ml domperidone 4 x day and 0.25ml ranitidine 3 x day. The meds are keeping on top of it but from what I have read on here that seems like quite high dosages. They have just had the domperidone increased after review with the consultant in line with their weight gain and the sickness is back under control again, posetting a few times a day but nothing I woudn't consider normal. They are more bothered by trapped wind and acid from what I can figure out and they won't settle well if we dont keep them upgright for at least 20 mins after feeding - if not they are arching their backs, sticking their tongues out and writhing about.

I guess I'm just looking for other people's experiences and tips to keep them out of pain as much as possible. They have just got big enough to be able to sit in their bouncy chairs and they seem to be a godsend as keep them upright without me having to hold them up which, with two, is pretty difficult!

(Oh, and they currently weigh 5lb6 and 5lb1 respectivley).

buttonmoon78 Sat 01-Oct-11 21:50:21

lovebeing my consultant says it does.

silver welcome. I guess the drs are probably thinking that with such early babies there is no room for error. Better to over rather than under medicate maybe?

LoveBeingAMummyAgain Sat 01-Oct-11 21:51:28

Blimey today has been a tough day but think it's the heat.

Superene Sat 01-Oct-11 22:08:07

A friend swears by mixing up formula with fennel tea, not water. She also adds gaviscon and a dose of gripe water. Her dd1 had terrible silent reflux, and her dd2 didn't suffer as much due to the above cocktail.
My ds1 had it really badly, gaviscon and ranitidine were a godsend. He grew out of it by 9 months. It was horrible, keep going to the doc (not HV, didnt even bother telling them) until you get proper treatment, and don't let yourself be fobbed off with "oh it is just colic, he'll grow out of it". That is nonsense, and cruel to your child.

buttonmoon78 Sun 02-Oct-11 06:35:41

I hear you lovebeing. DH and I were saying the same last night!

LoveBeingAMummyAgain Sun 02-Oct-11 09:18:56

So my 3 week old, how many does a day do you think will make a difference? I thought maybe I could just give as and when sad. Feels so wrong to be spooning anything into his mouth.

beckieperk Mon 03-Oct-11 16:27:56

It depends on your lo's weight I believe. My ds is on about 5 sachets a day. He was 12 lb 13 at last weigh in. Think he could have more according to the box but he only has small feeds often so don't want to OD him. Ask your gp if you're unsure?! Good luck. It's not easy getting the balance right.smile

buttonmoon78 Fri 07-Oct-11 08:04:02

Think we're on the omeprazole route. Even with ranitidine ds is not happy at all. sad

buttonmoon78 Fri 07-Oct-11 11:38:54

Bloody doctors. GPs have said they'll fit him in at 12.20 as he's a baby despite being chocka - good stuff.

Letter to GP from consultant arrived just now saying they can prescribe domperidone if required but not mentioning omeprazole at all. So when I turn up at GP's what is the chance of them giving me it? Nowt.

Am so cross. I've rung consultant's secretary and she's trying to track her down to see if they can fax something over.

V v angry

And tired.

buttonmoon78 Fri 07-Oct-11 15:47:43

All's well that ends well. Consultant is v embarrassed for not putting both meds on the letter.

GP was happy to prescribe omeprazole anyway but had to ring consultant after all to check how to prescribe it!

So... what do others do? Pharmacist said I could mix it with fruit juice but I'm not sure about giving him juice yet confused

bethylou Sat 08-Oct-11 22:16:23

Just wanted to pop in and offer my support to you all. I have two DS who were both refluxers - one silent and one who has ruined my carpet by most definitely not being silent!! Having said that, I was lucky that they only screamed when they were feeding. We've been through every medicine available between the two of them and different things worked for each at different times.

DS1 is now 3 and a 1/2 and still burps a lot during meals. DS2 is 18 months and seems to be over it, although he goes through spells of retching when eating.

I think my two were unlucky not to grow out of it sooner as I read a lot on MN about babies outgrowing it by a year. Even having taken the long route with my two, I have survived the difficult times that you lot are currently going through and I just wanted to offer some reassurance that you will get through too.

Keep going to the doctors (mine all know me personally now hmm) and make sure you know what you want to achieve - whether you need a referral to a consultant (GPs have to have a good reason to say no) or which medicine you want to try. If your own GP doesn't support you, find one who will (and I second not bothering with your health visitor, unless you have one who really understands reflux and will give you some real support). The understanding of reflux is so crazily varied and our babies have to rely on us as mummies and daddies to get what's needed to keep them comfortable and happy. Just keep going and know that everyone on here understands how you are feeling. One day you will wake up and realise that the puking and/or crying has reduced without you really realising it. Don't be too distressed when you've had a few good days followed by a relapse. Over time, it will improve. Good luck.

buttonmoon78 Mon 10-Oct-11 07:20:52

Aaaargh!

DS (12wks) is now on omeprazole and gaviscon. I make it up with 10ml apple juice and then give him 5ml. He took it fine from dh on Saturday but has now got wise to it and is simply spitting it out. I put it into a syringe and have tried front of mouth, back of mouth, it makes no difference.

Any ideas? I'm at my wits end. We came off ranitidine as it wasn't working well, and the omeprazole seemed to work well on Sat but if he won't take it anymore then obv it's not going to work. is it?!

beckieperk Mon 10-Oct-11 19:49:08

Oh bugger...poor you.sad No advice really just wanted to pop in to say good luck with getting some decent replies...not from me cos I'm useless....but from someone wiser!! Ha. I'll keep my eye out and my fingers crossed. Good luck. Just out of curiosity is you LO still gaining weight? If so is that through comfort feeding do you think?

buttonmoon78 Mon 10-Oct-11 20:22:16

Well, if I said that he's already had 28oz so far today and he's got another 2/3 bottles to go before 7am tomorrow that might give you and answer! To be honest, that's not typical - he's been really 'in need of comfort' today.

I posted in children's health too and have had a few good tips but more than anything total shock over the paed telling me to use yoghurt if all else fails and that I should wait to wean. FFS I said it was not weaning - it would be only a means to an end! I've every intention of not weaning for a good long while yet, but I can't deal with another day like today sad

I guess I'm probably a little oversensitive tonight blush

buttonmoon78 Mon 10-Oct-11 20:23:16

As for weight - I don't know. I'll be popping to get him weighed tomorrow - will let you know then!

buttonmoon78 Mon 17-Oct-11 10:14:18

I am getting really down with this reflux. On Thursday we began the numtramigen. I mixed it with the aptamil and reduced the A and increased the N by one scoop every other bottle so by Friday night we were totally on the N. On the upside, the little bits of eczema he had have disappeared. On the downside, he is even more sick than before. It's pure watery acid that's coming back. It doesn't seem to bother him much during the day but having been a bit more settled during the evening we're back to screaming til he falls asleep exhausted and sobbing.

Also, his nappies are much less wet than they were before. We're using cloth so it's quite easy to tell - whereas after 3-4 hours the whole thing would be wet, now the top, sides and back are bone dry, even after 4-5 hours.

I'm going to ring the paed again this morning because I'm quite worried, esp about the nappies. I feel like a neurotic mum with a pfb though.

I feel like everything I do just makes him worse though. Everything we try seems to have more down than upsides sad

DevonMummyofTwo Fri 21-Oct-11 22:51:53

Hello - I'm new to this group and wondered if anyone had any advice re reflux and teething. My DS2 has silent reflux - he wasn't diagnosed until around 5+ months as were told by several doctors that it was colic, fussiness, etc, etc. We finally got a paed referral and he has been on Ranatidine and Domperidone since 6 months after Gaviscon didn't work. He has been great for last month or so, especially since changing into the bigger car seat but has just started to get really bad again - lots of screaming lying down, not sleeping well during day and general fussiness. He's 8 months now and I think he has a first tooth coming. Could this bring on reflux again? We have also not been advised to increase the dose of either of his meds in line with his weight, which has increased quite a bit since he was prescribed them. He is still EBF and eats well in the day, although been a bit fussier with food and BF last 2 days. Does anyone have any similar experiences/suggestions? My DS1 had reflux and was very sicky but as he was never in pain and gained weight well, the paed didn't want to do anything. He didn't grow out of it until he was gone 1 so we may have some time to go yet!

bethylou Tue 01-Nov-11 20:11:32

Devon we found the same with DS2 regarding teething and for us it carried on until he recently finished teething aged 20months. The good news for us was that each time he had a spate of teeth coming through he dealt with the reflux better, until he was only retching, rather than being sick all the time. We did keep upping his dose of his meds with his weight and that helped, but to be honest, time was the best cure in the end. Good luck.

buttonmoon78 Wed 02-Nov-11 09:57:21

We're constantly unsure of our progress here. DS seems a little better one day and then worse again the next. I've still not seen the second specialist - I'm about to call the hospital now to see where our referral is as the GP has faxed to expedite it.

Fingers x they'll have some news for me...

Fumblefawkes Wed 02-Nov-11 21:25:01

Hi, Am pleased to say our reflux days are over (DD is not 17 months) but have definitely been on the darkside with reflux. I don't post much but hang around and lurk a bit to see if I can help by answering anyones questions.

Devon Yes, teething can aggravate. Something to do with different enzymes in the saliva at this time which can aggravate.

We were told it is ok to use Gaviscon at the same time as Domperidone and Ranitidine, which we did on particularly bad days so may be worth a try?

Buttonmoon Sorry if you already have but have you tried squirting the syringe in the side of the mouth? In little squirts at a time? Apparently they can't spit it out then. DD got wise to me though and used to purse her tiny lips at the mere sight of a syringe wink

Support to everyone else too. It does eventually get better,even if that appears forever away a long way off at the moment.

buttonmoon78 Wed 02-Nov-11 22:36:59

<bitter laugh emoticon> can't spit it out?! Pah. Think ds must be part camel then grin

Actually, he takes the ranitidine fine now. He still screws up his face but he swallows it now. And as that's the only meds he's on I'm not worried about that.

On the appt front - we'll be seen within 3 weeks. So another lifetime then...

Sargesaweyes Thu 03-Nov-11 08:37:22

Hi, not had chance to read through yet as just came on to start a thread asking for help and saw this so sorry if this has been answered earlier.

Bertie is 9 weeks and was diagnosed with reflux on Monday after previously being told it was colic. He was b/f for 6 weeks but gave up as so many issues due to him hating being fed (now obv why that was sad). Anyway he was prescribed infant gaviscon which has already helped with constant crying, arching back, vomit etc but now he is in pain going for a poo. Last night he was awake for 3 hours straining and finally had a huge solid poo.
Basically I don't see the point of him being on the gaviscon if it's just making a new issue. Feel really low about it all 2 be honest as it has been one thing after the other and just want him 2 be happy. Have an appointment at 10.40 with the dr so wondered if anyone had any advice on what I could ask for 2 help him. Thanks in advance smile

buttonmoon78 Thu 03-Nov-11 09:47:52

My ds was the same when we first put him on gaviscon. He was having C&G formula at the time. I swapped to aptamil and the effect was almost instantaneous - no problems at all!

We're a long way down the road after that but for that particular problem that was the answer for us.

Sargesaweyes Thu 03-Nov-11 12:15:22

Using aptimol aswell. Was using comfort and swapped 2 ordinary a couple of weeks ago.

Dr has prescribed lactulose. Any experience?

I've read some of the thread now and I feel thankful as I don't think my little one is as severe as some of your experiences. My heart goes out 2 anyone going through this as mine has been hard enough.

fizzypigs Thu 03-Nov-11 12:23:05

we gave our baby lactulose after gaviscon brought on constipation for baby. it is a stool softener rather than a laxative. didn't help us much. but hopefully it will be a different for your little one. we are now on domperidone instead of gaviscon - which has reduced sickness but not stopped it completely. still having probs with constipation (6wks later!!) - no longer sure if gaviscon was the culprit in our case...

buttonmoon78 Thu 03-Nov-11 12:46:14

Have you tried anything else though? The point is that not all formulas are the same for every baby. For eg mine vomit profusely on SMA whereas my friend's ds flourishes!

I preferred to try another formula first as I really didn't want to go down the route of medicating to deal with the side effects of medicating. After all - where does that end?

In you shoes (which I was ) I would be trying another brand of formula first.

fizzypigs Thu 03-Nov-11 13:08:56

I hear you button about the reluctance to medicate the side affects of other medicine! Just to offer some reassurance - lactulose is very gentle and apparently you could take every day till your 100 without any harm - I'm quoting the out of hrs dr at hospital who was reassuring me about baby taking lactulose for a few weeks.

fizzypigs Thu 03-Nov-11 13:12:07

Meant 'you're' not 'your' - am sure there are other mistakes in my post so will stop re-reading after posting and try to to do it in advance next time! smile

MamaLaMoo Thu 03-Nov-11 19:03:07

Oooh, hello, a new reflux thread!

I was on the old one but had given up after baby trauma (DD2 was hospitalised for 6 days with reflux, DD1 in hospital for 15 days with terrible eye infection/injury).

All is much better now, DD2 is 12 weeks EBF and since she got proper Gaviscon (I will explain) and ranitidine and domperidone she has become more and more relaxed, developing well and sleeping for longer and longer. The most amazing thing is the complete lack of hysterical, inconsolable screaming.

Do you do gaviscon as it says on the packet? In hospital the nurses mixed up 6 sachets in 30ml of cold boiled water and gave her 2.5mls by syringe before each feed up to the maximum of 12 doses in 24hrs keeping the solution in a sterilised bottle for the day. This is sooooo much better than making up the 15mls by spoon that the packet says.

The poo issue resolved itself after 10 days, her body adjusted and she poops once a day or more, sometimes playdough poo, sometimes more like porridge. Too much lactulose made her very windy. We do 1ml in about 10mls of cooled, boiled water and it works to relieve her and no excess wind.

Syringes are definitely the way forward, as she has 4 doses or domperidone, 3 of ranitidine and up to 12 of gaviscon a day, we got little 1ml and 3ml syringes from chemist in town and keep them full of and sitting in sterilising fluid (good old milton and water) in a glass until used.

ekkiethump Thu 03-Nov-11 19:24:48

new to this thread but wish i had known about it with my first ds. he had silent reflux and those days were terrible as wasnt diagnosed till 5 months.
now have my second and she also has reflux. on gavsicon currently and helped a lot - no longer having screaming fits (well sometimes) but still fussy with bottle sometimes will only take 2oz before getting upset and stopping. eventually can coax her to have more but takes up a lot of my day.
anyway, in people's opinion would you advice further treatment to help her feed more comfortably or would you just leave it and accept it is better at least? dont know what to do - seeing paeds next week and want to know what i would prefer as am sure they will give me choice.
just remind me it does get better doesnt it?????

buttonmoon78 Mon 07-Nov-11 17:20:40

AIBU to want one sodding evening where ds does not shout at me and try to claw at my face and chest? And why is it that 99% of the time dh is about he is fine?

10 days til our paed appt. I can't bloody wait!

bishboschone Mon 07-Nov-11 18:25:10

Hi all, can anyone tell me do their babies cry alot during the day but sleep all night? Tia

buttonmoon78 Mon 07-Nov-11 18:47:29

Yes - mine. If it wasn't for the amount of puking he does at night (btw - he wakes for 2/3 feeds but sleeps again straight after) I would think he was a totally different child from the one I have during the day.

Sargesaweyes Mon 07-Nov-11 18:52:46

My ds much worse in the day between 12 and 6. Ranitidine prescribed today and hoping this makes a difference as gaviscon worked at first and then yesterday had the worst ever reflux day. Ended with him and me sobbing so have everything crossed for new meds.

buttonmoon78 Mon 07-Nov-11 18:57:45

Don't pin your hopes on it helping immediately. It might take a few days as there might be some damage to the bottom of his oesophegus which will need to heal.

Sargesaweyes Mon 07-Nov-11 19:12:27

Thanks Button, that's good to know as gp said 24hours. I would have been gutted if no difference (I know there still might not be). Does anyone have any sleep tips? Ds only happy on his tummy or on me. He sleeps on his back in his cot until 3 when wind wakes him. I am totally with you by the way regarding the clawing of the chest- ouch!

bishboschone Mon 07-Nov-11 19:28:27

My ds is on ranitidine and domperidone .. He is 5 months old 7 weeks prem) and he sleeps 12 hours at night but is very grumpy during the day. He can be distracted though. Do you think this is the reflux and is it pain or just annoying him?

ekkiethump Mon 07-Nov-11 20:09:25

my dd sleeps well at night until 4-5am and then cannot get back to sleep. i am pretty sure she is not waking up hungry as when she is hungry she wakes up by sucking her fingers. when reflux wakes her she wakes up with a lot of squirming and grunting before crying.
during the day she hardly sleeps at all but think it is because she only drinks 3oz at a time and so is always hungry.
does anyone find that they wake in the night and are tired but wont go back to sleep but not crying either? that happened with my ds and now with dd too. they drink from their bottle just about fall asleep and then wake up and stay awake.
waiting for my paeds apptment on friday - cant wait. am scared i might just walk in and burst into tears though and then they will think i am just a neurotic PND mother.

buttonmoon78 Mon 07-Nov-11 20:16:59

I hear you ekkie. I was so convinced I'd do that with my first appt I insisted that dh stayed home that day to come with me.

ekkiethump Tue 08-Nov-11 06:52:08

this is so hard. been up since 4.20am and still no signs of sleep. she wont drink an milk and i am so tired. toddler will wake up any minute and any chance of sleep will be gone.
i cant do this anymore. i know it will get better but this is so demoralising. nothing else to say apart from this is so hard i just want scream or break something.
i dont understand why this has happened to me twice. i just want a normal baby.
i am sorry to go on but this is the only way i can think of to vent my frustration without throwing my baby out the window. i feel all alone. my husband has just left me for the week and i dont want to call my friends or family as i think they think i cant cope and am exagerating.
it will get better, it will get better, it will get better...

Sargesaweyes Tue 08-Nov-11 07:05:27

I know it's not very 'mumsnety' but sending you a big hug. It is shit! I can cope most of the time in the day but a bad night is soul destroying. It will get better. If it makes you feel better I had ds sleep on me all night as just can't lie him flat and feel I would be more likely to know if he was suffocating on me than into his cot mattress. Today is a new day!

buttonmoon78 Tue 08-Nov-11 07:07:53

i dont want to call my friends or family as i think they think i cant cope and am exagerating mine though that until they turned up one day and happened to witness a bad session! /they were gobsmacked!

It will get better and I know what you mean about being alone. Let it out here. We're all in the same boat - no judging.

ekkiethump Tue 08-Nov-11 08:02:10

had a big cry and now feel much better.
as you said today is a new day.

MamaLaMoo Tue 08-Nov-11 09:17:30

ekkiethump I know just how you feel, I felt so awful after weeks of escalating crying and sleeplessness I started thinking about harming the baby. I told my health visitor and she sent me to the doctor that day. It got worse over the following week until me and the baby were admitted to hospital. I also have a toddler and that lying in bed knowing there is no point trying to sleep because she'll pop in any minute is a familiar feeling.

I hate the word coping, it seems to mean getting on with it so as not to bother others. Not coping means letting others know you need help! I am all for not coping. Seeing the GP and getting help was the best thing for both me and the baby. So what if you walk into your appt and burst into tears? Do it. I couldn't speak without crying for 4 days at one point. There was no doubt in the docs minds about how exhausted I was or what a crisis we were in. Paediatricians treat the mum and baby as a unit, so should your GP. If they see you are at the end of your tether they will act faster.

How old is your DD?

ekkiethump Tue 08-Nov-11 13:23:31

she is 16 weeks old, so just hitting the peak of reflux.
have been hear before with my first son and it was a this point i had a meltdown. not as bad as that time. was exactly like you MamaLaMoo. hit crisis point and was sent straight to GPs. thnigs got better after that as people started to take me seriously. before then HV thought was fine because i had managed to draw open my curtains so was not that depressed!
the thing that frustrates me most is that i am constantly questioning myself on whether i have got the right diagnosis. some days we have good days and she has a 2 hour nap and i think maybe she hasnt got reflux maybe she just doesnt need/like her milk and sleep like eveybody tells me. she no longer cries that much anymore since starting gaviscon but still not feeding/sleeping well so i think that is still a bit of reflux but maybe not... who knows.

buttonmoon78 Tue 08-Nov-11 16:39:43

I question everything too. You begin to doubt whether it really is that bad or whether it's just that you're not coping. Or at least, I do especially when people look at me gone out because he's always perfect when we're out!

buttonmoon78 Tue 08-Nov-11 17:07:38

And so it begins. Again.

I'm sure I'm not imagining this - it's getting worse.

ekkiethump Tue 08-Nov-11 17:21:49

we are getting worse too. have regressed from nearly 4oz bottles back to 2oz bottles and a lot of frothing at mouth.

ekkiethump Wed 09-Nov-11 21:45:42

is anyone bottle feeding? what size teat do you use? i was using size 1 cos i assumed would be better with reflux but when tried size 2 she drank more milk without adverse effect. still only taking 30z max at a time. just wondering if going to fast flow would help more or make reflux worse. anyone got any experience?

Sargesaweyes Wed 09-Nov-11 22:28:43

I've just got some dr brown bottles. Was using avent size 2 before and these have come with size 1 so also interested to see what people say. Ds seems to be better having less at a time- with a 5oz bottle he will have 3oz and then a bit later the other 2. Because his is silent reflux though he isn't that sick.

Back on a comfort formula and crossing everything that the meds start helping. The constipation seems to have stopped today so that's something I suppose. My mum witnessed a full reflux episode earlier. It sounds stupid but I try and cover it up as don't want people to think ds is difficult or that i'm totally fed up. Very hard

buttonmoon78 Thu 10-Nov-11 07:57:26

We've got dr browns. DS is nearly 17wkis and on size 2. I think that the dr browns make them work a bit harder so he didn't seem to drown with the size 2 whereas the size 2 tt ones choked him.

DS still takes only 4/5oz a time apart from his first night feed where he takes 6oz and hardly ever chucks up anything confused

DS1 was on 7oz bottles x 5 at this stage and therefore sleeping 7-7. I am envy at my former self!

fizzypigs Thu 10-Nov-11 11:33:22

Well just back from dr and now they think baby has cmpi which is aggravating his reflux. Has anyone had a similar thing? I'm mixfeeding so have been told to exclude dairy and been prescribed special formula (can't remember the name). How did you get on with the formula and excluding dairy from your diet?

ekkiethump Thu 10-Nov-11 12:54:52

just thought i would share with you all, that i have finally found a positive aspect of having a baby with reflux!
you lose your baby weight quickly!
have been spending so much time either feeding, holding baby upright after feed, comforting baby and then running to my bed as soon as baby is asleep i just dont have time to eat.
so mums there is a positive to all this.

also do believe it makes me a stronger person in the longrun (but would rather not be a stronger person and just have a happy baby who feeds and sleeps) and you realise who your friends are that you can really rely on. Ironically my most suppostive frinds are the ones that have not had babies. the ones that have had babies think that this is just what babies do and i need to deal with it like they did. little do they know.

Sargesaweyes Thu 10-Nov-11 14:17:12

Can I ask the more experienced among you what your day is like? How much do your babies cry etc? Even though ds has been diagnosed I am worrying now incase he isn't and it's just me- silly I know! The ranitidine seems to be working as ds has had some happy time on his mat and in his swing today. Also seems more smiley and generally more content. Hoping we may be turning a corner.

ekkiethump Thu 10-Nov-11 16:24:32

Sargesaweyes. This is my second baby with reflux so feel i am experienced in reflux babies!
with my first after 3 months of constant crying in the evenings and night he gave up crying and would just wake in the night but not cry at all. once on treatment he was really happy on playmat etc and hardly ver cried.
with my dd she does not cry much anymore now on gaviscon but still not taking full bottles and waking in the night and not settling, she just doesnt cry. she is also fairly happy on the playmat at times.
dont make the mistake of thinking they dont have reflux or doubting your diagnosis. we constantly did that with our first one and kept reducing his medication, only to go back to night waking and fussying at bottles.
i doubt myself everyday on whether i have got it right or not. especially when you hear terrible stories of babies who dont get better with any medication and are 8 months old etc...
i am glad you asked that question because i think the same everyday. but the fact is that she is much better on the medication and that is the ultimate test.
hope that helps.

Sargesaweyes Thu 10-Nov-11 16:46:50

Thanks ekkie. That does help. Like you I panic myself about him having it like this for months and months. Just need to get a few good days in a row and I will believe it's helping. With your first how old was he when it got easier?

ekkiethump Thu 10-Nov-11 17:05:28

its all a haze - that is one good thing, i cant remember a lot about it just that it was awful so hopefully ds doesnt remember any of it.
but i think it got better at 6 months coinciding with when we weaned him. the only times it got worse was when we stupidly would try to stop his medication. we have only just stopped his gaviscon and he is 2yr 4months.
how old is your ds?

ekkiethump Thu 10-Nov-11 17:08:48

Sargesaweyes how long has ds been on ranitidine?
we are seeing paeds tomorrow and hoping he will start dd on some to improve feeding and sleeping.

Sargesaweyes Thu 10-Nov-11 17:31:55

10 weeks old. Have had feeding issues from birth. Gave up breast feeding at 6 weeks as was awful. Got fobbed off for ages that it was colic as he doesn't throw up a whole feed and has been putting on weight. It was only when his weight gain slowed down they considered reflux. Been on it since Monday. Today ds had his first ever substantial afternoon sleep which has been great. Before today I have not been able to get him to sleep in the day for longer than 20 mins at a time. Am desperate to start enjoying our time together fully.

camdancer Thu 10-Nov-11 18:02:29

ekkie you want to really lose weight quickly - go on a total elimination diet to sort out reflux. It just drops off regardless of how many bags of crisps I eat.

Can I have a small rant? On Monday I got DD2 weighed. She's growing fine but very nice health visitor suggested seeing a dietician because of DD2's reflux, possible cmpi, gluten intolerance and a whole bunch of other intolerances. She referred me to my gp's health visitor who is now saying there is no research to say mothers diet affects baby's reflux so no point in referring. Aagghh. Meanwhile we are getting towards weaning and I'm still only eating about 6 things.

Just to give other people good news. DS and DD1 both grew out of their reflux by about 10-12 months. It was very gradual. With DS, I just realised we weren't doing as much laundry - he was a happy spitter. With DD1, we just didn't have to keep increasing her dose of ranitidine for a while so gradually reduced it until she was off it.

ekkiethump Thu 10-Nov-11 20:07:12

camdancer have you had 3 babies with reflux?
I have had 2 babies so far and would really like a third but worried may have another refluxer. my husband says HE cant cope with another one! would love to have a baby who enjoys feeding and falls asleep on the boob and i can breastfeed lying down.

regards to referral to dietician i would push for one. research smesearch. i think it would be worthwhile to see dietician to give advice on how to start weaning. it is likely that your dd2 wont have the intolerances lifelong, they will grow out of it but advice on how to start and find out would be good. the main one would be the cmpi.
also one of my friends treated her baby's reflux with diet alone - cut out tomatoes, onions and mushrooms - but she is absolutely fine eating them (not sure from what age though - at least 1 year+)

camdancer Thu 10-Nov-11 20:38:38

DS was a happy spitter, so not really reflux but would throw up all the time. It didn't bother him and apart from doing lots of laundry, he wasn't really a problem. He did like the falling asleep on the boob and loved feeding, it was just that he'd generally wake up in a pool of milk!

DD1 and DD2 have had proper reflux - pain, back arching etc. But I have a lovely GP who is happy to give proper medication and will listen to me. I think that makes all the difference. I don't enjoy the baby months though. It is just something I have to get through to get to the fun bit once they can walk and talk.

I'm definitely going to push for a referral - even if I have to go privately.

ekkiethump Thu 10-Nov-11 20:57:29

i am seeing paediatrician tomorrow but have gone privately.
could not be doing with arguing with my GP about a referral as she did not seem that interested. the thing that annoyed me the most was that she told me her ds also suffered from reflux - thought that would make her more understanding but i was wrong!
am pinning all my hopes on getting ranitidine and that that is going to make my life much better.
i am so glad to hear somebody else doesnt like babies either. all i get is people saying how lovely babies are and when i tell them i hate babies and just want the six months over with they look at me in horror.

buttonmoon78 Thu 10-Nov-11 20:57:54

camdancer my nephew has allergies requiring epi-pens - egg, dairy, potato. he was diagnosed before weaning. how? because they were being transferred through the bm. sil's immunologist was almost salivating as she is such a researcher's dream. being written up for journals as we speak.

please excuse typing. sat here with ds fitfully asleep in my arms. been screeching all evening. both been sobbing. dd2 came up trumps and opened wine. not eaten or anything yet. so i'll be trolleyed shortly.

feel so damn guilty that i cant do anything to help him.

Sargesaweyes Fri 11-Nov-11 11:12:14

Fingers crossed I have a much happier little chap due to this ranitidine. Last night he just went to sleep!!!!!! No huge screaming fit. I was almost more worried because he was quiet. Good luck today ekkie. Ds is on 0.8 3 times a day which I think is quite high. Def helping though.

ekkiethump Fri 11-Nov-11 13:05:49

thank you. you have given me hope. have been awake since 4am due to dd. by the time i got her back to sleep at quarter to seven, my ds woke at quarter past seven.
have just managed to get them both to sleep at the same time so am off for a nap and then looking forward to my paeds apptment tonight.

buttonmoon78 Fri 11-Nov-11 13:47:50

I can't do this anymore. DS slept 9-11, 1-4, 5-7 last night and shrieked the rest. He's now decided projectile vomiting is a good thing which is just great. I can't do anything to help him. He's upstairs wailing because I just don't know what to do with him.

Sargesaweyes Fri 11-Nov-11 14:12:09

How old is your son button? Phone up your doctors or hv and explain how desperate you are for help and support. I feel very lucky as I have a great doctor and he has always listened to me (hv useless). I really feel for you. If it's really awful why not go up to the hospital and explain the situation. Is there anyone who is understanding enough to take him for half an hour so you can get out of the house for a bit of space. When ds is really bad I pass him screaming to anyone just to get my head together again.

jan2011 Sat 12-Nov-11 20:23:46

hey
its awful this reflux so sorry for everyone dealing with it. we want our babies to enjoy their feed times not dread them, its awful how they want the feed and can't stand it at the same time. its heartbreaking the pain.
i am breastfeeding in day and ff at night with prescribed enfamil, dd was given ranitidine earlier this week and it seemed to have helped her be more settled in between feeds but shes still in discomfort during and just after feeds.
yesterday i cut out diary to see if it would make a a difference. my baby has the silent reflux and seems to be very gassy....i am now questioning my diet...i am going to try to stay off lots of vegetables that might make her gassy, and citrusy fruits and diary. ive stocked up on rice milk and oat mllk. ive heard that if you are diary intolerant you can't have soy milk either as it has the same type of protein as cows milk, is this true? has anyone had experience of cutting diary out and did it help? soy would be better if i could have it as i do like yoghurt etc but i will do this if i need to. also do you think having very small amounts of diary would matter, like the odd cappuccino or does it have to be very strict? if anyone has been there and done that please give me some advise! thanks

emmywoo Sun 13-Nov-11 20:58:33

Hi all,
So pleased to have found this thread.
Will cut a very long story short for you all:
Jamie is 15wks and has a floppy larynx and reflux, he started on Gaviscon and then onto Domerperidone and Ranitidine, then taken off ranitidine and put on domeridone and omeprozole and now since Wednesday he is now on domerpidone and lansomeprozole. Consultant increased his domperidone dose on Wed also.
We were also told to wean early to help with the reflux.
His milk intake is very poor hence the weaning.
My problem now is since Friday he has screamed and screamed which is completly unheard of as he is normally so happy and giggly.
I have jsut read on a board that a little baby also started screaming after domperidone dose was increased as it can cause stomach cramps - is this true? He was on 2.6ml x 4 a day and now increased to 2.6ml. Lansomeprozole is 1.17ml x 2 a day.
I am at a complete loss as to what the issue is at the mo and have spent all weekend in tears as nothing seems to console him.
xxxx

ekkiethump Mon 14-Nov-11 13:19:56

dont feel i am entitled to be in this thread anymore. went to see paediatrician on friday. he told me that it is unlikely my baby has got silent reflux as it is VERY rare in normal babies! told me it was likely colic. when i asked him why the gaviscon made it better and why it was getting worse and not better at 17 weeks he didnt really answer but told me to continue the gaviscon. he also said that i shouldnt feed baby overnight and just check on her but not pick her up.
have decided to continue on gaviscon as does make her much better and try to get her onto a routine to see if things improve.
i couldnt believe he said that reflux was rare! i nearly told him he needs to go onto mumsnet and see how rare it was but kept my mouth shut. my baby may not be losing weight and he proabably wouldnt find grade 4 oesophagitis if he looked down her throat but it is clearly upsetting her everytime she feeds and if she lies on her back too long, never mind the screaming sessions (which have settled with gaviscon).
he also made out she was waking up for comfort from me. dont know why you would wake up for a cuddle from your mummy and then decide to cry the whole time!
have decided to give up on finding a resolution for this and just try to keep going till it gets better. having read lots of posts i know my baby is no where near as bad as others
jan2011 it is true about soy milk. a proportion of children who are cows milk protein intolerant also react to soy. in terms of strictness of diet i have heard you have to be incredibly strict. i suspect oyu may be very strict initially unitl things settle and that way you know for sure if she is unsettled it is not becuase there is no CMP getting through. if she settles then you could slowly re introduce things.

buttonmoon78 Mon 14-Nov-11 13:49:08

Personally ekkie I'd be asking for a second opinion. All the paeds I've ever encountered say reflux is under rather than overdiagnosed. Was this a paed with specialism in gastro-enterology? I only ask as the first paed we had contact with this time said (without examining ds or speaking to me) that it was not reflux but was over feeding hmm The fact that he was in pain was not worth addressing as he was continuing to gain weight hmm Our GE paed said he was an idiot!

As for refusing to feed or pick up a 17wk old baby at night shock Why would someone do that?

I hope you don't think I'm being ott - but I really would ask for a second opinion from a paed with a gastro-enterology specialism.

buttonmoon78 Mon 14-Nov-11 13:52:25

sarge he's 17wks. Thank you for being lovely. The w/e wasn't too bad as dh was there all the time to help with him. And he's home 2 nights this week which will help. I think I'm goig to limp on til Thursday and see what the paed says. In the absence og a magic wand I'll then go to see my gp.

Sargesaweyes Mon 14-Nov-11 20:30:41

He sounds like an arsehole! My ds has been so much better on meds so def get asecond opinion. How frustrating for you!

Glad you had a better weekend button. It makes so much difference when you have support.

buttonmoon78 Tue 15-Nov-11 12:35:49

Had a lovely day yesterday leading me to question if it was really reflux.

Today? Oh, I'm in no doubt. He's not stopped screaming since 10.

Poppet45 Tue 15-Nov-11 19:59:08

Oh goodness, no offence, but I really don't want to join this thread, but room for another one?
DD is currently one week before her due date, but was born at 27 weeks +3, so 12 weeks old, and we've had a long road already. However she's a fighter, was only on a ventilator for four days, and has endured brain scans, lumbar punctures, more blood tests than anyone should have at her tiny age, but scrapped onwards ever since. She began on TPN, then on a mix of formula and breast milk, but somehow I managed to express milk every two hours for the 9 weeks she was in the NICU so I have a supply to feed her with and she's a fab feeder (or was), however she's on the second centile so is pretty dinky to start with so we don't have much wriggle room.... and now I think she's heading towards reflux. DS was v colicky to start with and a prolific spitter, but she's doing things I've never seen him do before. From initially feeding well she now squirms, grunts, huffs and writhes during feeds. She has stinky wind, and loud burps. She also gets v snuffly and congested which makes me think its going up her nose and although she is not sick v much, I think she's often sick up her throat or mouth. And worrying when that happens she holds her breath (just like her bad old apnea days) and goes v still, until I touch her or blow into her face, when she starts gasping like a wee fish. Horrid. Plus she goes on feeding marathons that last 4 hours or so from around 11pm at night. Last night we coslept for four hours or so after i wasn't able to put her down from 9pm til 2am... I did this with DS after he was 7 months or so. But he was born a 9lber. DD was born 2lb 4ozes, and is currently just under 6lbs, sleeping with her is terrifying.
Anyway after my long waffle, I have my HV coming tomorrow as part of her weekly weigh ins, and an appointment with her paediatrician as part of her history in the NICU, what should I be asking these people? What are the best meds - and what are the differences? What should I be doing to my diet? Please help. After all our stress with the early days I wasn't expecting this battle too.

LucyEBGoode Wed 16-Nov-11 11:32:06

Hi there....my little one also has reflux -we're on Renitadine 3times per day by peods...

Doesn't seem to do too much but we just want to try to help her. The speech and language therapist at UCLH advised us to treat her like a bottle of milk with the lid off. ie. keep her upright 20mins after a feed and be very careful when winding her.

We're practicing the Gina ford routine and she sleeps v.well after two bottle feeds at 1 @ 7pm and the other @10.30....they're a mixture of EBM and formular my hubby does it whilst I sleep.

It all goes pete tong at 2.30 when I feed her and we end up feeding winding and trying to go down until 5am!! tis driving me crazy so we're just going to try and figure something out think its to do with the breast feeding as she takes ages to wake up. so we might just leave her and see when she wakes up naturally!!

Ant thoughts would love to know........L x

Bubalie Wed 16-Nov-11 11:46:50

Can I join too please as I feel I am going crazy with worry/lack of sleep!

My baby is almost 7 weeks old and has a reflux. GP diagnosed it last Thursday and prescribed infant gaviscon. He doesn't puke a lot but just starts to eat and takes some food and then starts screaming and arching his back/gulping and that's it. He is bottle fed on Aptamil. On top of this I think gavison has made him constipated so he is constantly scrunched up and straining.. Feeding has become very stressful for me and him now as I am so worried about it. He is putting on weight and I feel that no gp will be concerned as long as the weight goes up. He also develops this flemmy thing in his tube while feeding and gets all hoarse almost like the acid is in his throat. If he happens to get upset at the same time he can not swallow his own saliva and therefore we have had a couple of episodes where he kind of can't breathe for a few seconds. I have phoned NHS direct and they've sent me to out of hours gp on Friday night but all they keep telling me is that this is normal.

Does anyone have any advice as I am struggling so much and constantly on the edge and crying. I feel that I will develop pnd if this carries on as I cannot see a way out and am so worried about my baby?

LucyEBGoode Wed 16-Nov-11 12:08:40

Hi Bubalie, my baby sounded like an old man with a cough very plemmy at about 7weeks. she is now almost 11 weeks and that seems to have gone, she just bring up breast milk, whilst she's still on the boob and vomits quite often.

Sometimes I think it might be stress related as it gets worse when lots of distractions are happening.

LEBG

LucyEBGoode Wed 16-Nov-11 12:12:21

BTW it does seem distressing when your baby vomits, but I don't think it corses them pain - its just upsetting for us. My breast milk is precious and it saddens me when she voms it up and i have to top her up with formular.

She has v.poor weight gain so had te eat eat eat.......

buttonmoon78 Wed 16-Nov-11 12:16:14

Aaargh - just typed a long message and then MN lost it! Will try to remember the gist...

poppet explain your concerns and see what the paed says. The normal treatment path (IME) is non-medicinal ie propping etc, then gaviscon, then G with ranitidine and then the heavier drugs. I hope they listen to you.

Lucy how old is your dd? I've not bf a refluxy baby beyond 10wks. Routine will never happen with ds. He's so busy sicking up milk that he's hungry long before he 'should' be!

Bubalie the constipation might sort itself out. If not, it might be worth knowing that my ds was the same with gaviscon & C&G but fine with gaviscon & Aptamil.

Please, please speak to your gp and explain how much this is upsetting you. I'm having a good day today but if you read above posts you'll see that bad days make me sound like I'd be better off speaking to the Samaritans rather than posting here. And I'm not trying to be funny. Do you have any family help? Even an hour or so every few days away from the crying can really help.

I'm also in the position where ds is gaining weight still. DD1 had it so badly she was hospitalised for FTT - very unwell, yet never had a day's bother with it. DS2 however is gaining weight and yet is bothered by it all the damn time! I really had to fight to get him seen let alone diagnosed. Looking back, I think his weight gain was tailing off before we went dairy free, but he's thriving again now.

Please none of you underestimate how much this can affect you and these precious early days with your baby. It's tough, we all know sad

But we're all here and we all help eachother through it.

Kingsroadie Wed 16-Nov-11 12:40:42

Hi everyone - I have been through this with my daughter and just wanted to offer my support as this thread popped up on "active" and it has taken me right back to how it was with her!

She is now nearly two and finally over it all. But she had an awful time when she was born. She was constantly sick and screaming in pain when feeding (BF one week, horrendous thrush plus she wasn't really latching at all, expressed for 3 weeks then formula, and that was when the problems started), gulping but coming off and screaming, writhing around , pulling legs up etc. She would take an hour to eat a 2/3 oz bottle and could never take more than 3oz for ages. Didn't like being put down.

HV dismissed it as "colic", GP was sceptical and suggested Gaviscon, then after that didn't work (and she got massively constipated) Ranitadine. I tried loads of formulas too. Ranitadine didn't work so at 9 weeks and in desperation I took her to a private paed and he took one look at her, listened to me and diagnosed a cow's milk protein intolerance and fairly bad reflux. She was immediately put onto neocate which she puked up terribly for the first day (system getting used to it I assume) but was instantly a different child. A week later we went back to see him and though she was much better she wasn't totally normal so he prescribed omeprazole (1mg per kilo I think) which worked. He also gave us domperidone but tbh I didn't find it made much difference to her puking and as she was gaining weight I wasn't worried about that. So I stopped giving her that as I felt that she didn't need it so I didn't want to give her more drugs than she needed if you see what I mean.

Anyway she was on neocate until 11 months when the GP (a different one) just stopped prescribing it as I hadn't taken her to the paed recently so there was no indication she still needed it hmm and so I though she was nearly 1 ans we'd try normal formula. Nope. Awful - d&v. Tried soya too but it seemed sh was also intolerant to that as is common. (Interestingly she could tolerate a soya yoghurt - I am told that is broken down even more than formula as processed etc). So back onto neocate until she was 18 months and we tried again. She was a bit funny in the poo department for a few weeks but her system obv then adjusted and could tolerate it. So she eats everything though and loves milk!

Now I know this is all very anecdotal but I just wanted to share my story and if I can help in any way just ask. It's so hard when the HP just think you are being paranoid and it wears you down. It's such an unpleasant thing and had me in tears many times. I sometimes feel like her first few months were a bit tainted by it all (and at 11 weeks we found out she had a dislocated hip so needed 2 ops and a waist to feet cast for 12 weeks + brace afterwards but that's a different story grin ). I would just say trust your instincts and keep pushing if you aren't getting the help you need. And well done all of you - it's bloody tough.

Sargesaweyes Wed 16-Nov-11 13:07:00

Just wanted to add to what has already been said to keep going to gp. If they don't listen then try a new one. Also although meds may not work for some babies they do work for others. My son is so much better since ranitidine (although seems a bit more sick. He previously was a secret swallower but now spits up although not often projectile. Any ideas why?). It is bloody hard work!

Laurale31 Wed 16-Nov-11 20:50:18

Hi everyone , my ds is 9 months old and was diagnosed with cows milk intolerance and silent reflux at 12 weeks, I have to say it's the hardest thing I have ever had to deal with, he was put on neocate with carobel thickener and 3mls ranitidine per day, this worked wonders and his reflux dissapeared, at his last paed appt 1 month ago we were told to gradually take him off ranitidine and carobel thickener as he had prob grown out of it, he seemed fine for about 2 weeks although he had an acid smell off his breath but didn't seem unsettled or in pain, all week he has been up during the night really unsettled, arching his back , screaming for around 1 hr, last night it just clicked that this is reflux again! His wee voice is all hoarse today, feel so annoyed with myself that I didnt see the signs sooner, phoned doc today who has advised me to put him back on the full dose ranitidine again, sad I really thought he would have grown out of it by now, back when he was a tiny baby I posted on here for advice etc , i don't know where I'd be without the Internet!

buttonmoon78 Thu 17-Nov-11 15:48:51

Well.... a 3 hour appt with the paed shock

Upshot is we're sticking with ranitidine, although doubling his dose to 7.5mg x 1ml x 3 daily. We're also introducing domperidone. And once we've been on domperidone for a week we're to restart weaning, and we saw the dietician for advice about that.

She was so lovely. I'd been so geared up for a bit of a scrap and turns out she was so nice that I cried with relief blush

Of course, as I predicted, it was Dr Jekyll who came with me today - all smiles for all the nurses, drs, dietician, other patients and their parents etc!

I know we're not out of the woods, but to finally feel as though we're being taken really seriously was lovely. She said that if it was up to her she'd be prescribing cleaners, childcare and massages to mums of reflux babies. Dr Piggot for Prime Minister - that's what I say!

jan2011 Thu 17-Nov-11 19:03:28

hey guys, so sorry for all your pain. Bubalie i am sorry you are so upset and ur LO is suffering so much I hope you both get relief soon. I feel i have a different baby now - i had to try 3 different meds for her before ranitidine worked, 3 times a day, plus i gave up cows milk and most diary last week and have had great results (thanks for advice ekkie) i am loving coconut milk, rice and soy milks! In general she is much more content. i also always keep her upright most of the time even in the pram, especially after feeds. i sometimes take her into the bath and feed her there and that seems to soothe her and be easier for her. please don't lose hope change can be just round the corner, if something doesn't work, keep trying different things.
the only problem is my milk supply has just crashed i think due to stress but thats another thread...

Bubalie Fri 18-Nov-11 10:42:38

Thank you so much everyone for your words of encouragement. We went to see private paed last night and he has advised to stick with gaviscon and has prescribed ranitidine I think I just need to go and collect the prescription from gp this morning for this (I think it's ranitidine). He has told me to give it to my baby twice a day and continue with gaviscon and see if that makes a change. Has this combination worked for anyone before? I am so hopeful that this will help, although he said that it may take up to two weeks for the meds to work!! sad. Also you know this flemmy, hoarse like breathing which really scares me - does that improve with the meds, I think I could cope with a lot of things but when I think he's struggling breathing that is what freaks me out?

I am so glad I found this thread, please any advice you have share I will try anything. Thank you smile

ekkiethump Fri 18-Nov-11 14:02:17

buttonmoon your doctor sounds lovely. she sounds like she really understands how awful it is to have a reflux baby.
we have had a good few days after increasing her gaviscon and putting her onto a strict routine.
despite appointment with paeds not going well, i still know she has silent reflux and doing all the usual sitting up, propping up crib and i think it is keeping things settled.
studpily tried to reduce gavsocn in yesterday's bottle and she faffed so much. how stupid am i?
anyway, when things improve life really does seem easy after the awfulness of reflux crying and feeding.

buttonmoon78 Fri 18-Nov-11 14:46:54

ekkie not stupid - just eternally optimistic wink

bubalie that medical regime worked for dd1 and she was mighty poorly so hopefully it will with yours too. You should see some benefit straight away - the delay might occur if there's damage to the oesophegus which might need to heal.

Off to pick up our domperidone shortly...

Sargesaweyes Sun 20-Nov-11 17:10:13

Gutted as seem to have gone backwards the last few days. Back to gp tomo. Hopefully it's just to do with his weight changing and needing dosage changed. Back to constant holding for now sad.

Poppet45 Sun 20-Nov-11 18:56:38

Hi all, thanks so much for the support and words of wisdom from the battle hardened. Just to let you know Willow is now on Ranitadine and Domperidone and we've already seen a massive, massive improvement. We were told to give it a week, and if not better to double the dose of the DOmperidone, and then give it another week and if not better they would give her Ompraz...something. I think because she's so wee, they decided to not mess about. I'm also off dairy for two weeks. Then I'll reintroduce it and see what happens, although I think this case is physical rather than an intolerance <touch wood> as she's been on milk in one form or another for 11 weeks now and this is the first problem we've had. We were also given the option of sticking with the Gaviscon too, but have ditched it as its a mare to get into her as she's now EBF. However we're dealing with an unwanted legacy from it - DD is totally constipated! Argh a new reason for sleep deprivation. Anyone have any tips for relieving that? She was up from 1 til 3.40 last night with it.... as well as feeding at 11 and 5.30 and 7am. Gotta love those premmies and their two hourly feeding needs! Wishing everyone sleep and happy smilely babies.

Sargesaweyes Sun 20-Nov-11 19:32:16

Lactulose worked for my ds poppet. Also boiled water with a bit of gripe water mixed in. Gaviscon really bunged him up and took a week and several green explosive nappies to get back on track.

Sargesaweyes Sun 20-Nov-11 19:36:48

Obviously cooled boiled water lol

ekkiethump Mon 21-Nov-11 11:26:02

after a week of getting on track, dd suddenly decided she cannot drink more than 3-4oz at a time again. had been drinking 6-7oz bottles really nicely 9not in one go but we had a system going). nothing changed apart from in laws came and messed up my routine! now going to spend another week getting her back on track.
the paediatrician said i could call him if she didnt improve and he would prescribe ranitidine (even though he doesnt think it is SR but says he is happy to try since ranitiidne is very safe). dont know whether to call him or not. dont want to sound stupid.
oh i hate this. i had grand plans of cleaning my house and meeting some friends this week after things seemed settled last week. oh well. will have to live in mess for another week.

ekkiethump Mon 21-Nov-11 11:28:41

poppet45 once she is weaned then boiling prunes for 5 min in water and mixing it with ripe pears then make it into a puree. it becomes a lovely sweet puree that your lo will love and helps with constipation instantly! i used to mix it in with weetabix.

buttonmoon78 Mon 21-Nov-11 15:46:26

I suffered the trauma of wearing a v neck top today. You know how when its a normal crew neck top you just have to change the top when you're covered in spew?

Oh, not with a v neck - shower, new top & bra!

I am quietly optimistic that the new meds regime is having an impact of sorts. Its too early yet to draw any real conclusions but there are promising signs. Weaning again as of this weekend.

ekkiethump Tue 22-Nov-11 13:38:11

started on ranitidine today! fingers crossed. am full of optimism but fear things may get worse before better. back onto 2-3 oz feeds only, little sleep and generally not happy at the moment.
had 3 wonderful days last week where she fed well and slept well. dont know why its all gone wrong.
oh well, lets hope ranitidine works

KellyKettle Tue 22-Nov-11 14:47:03

Hello! Just booking marking my place. Thanks for pointing me this way Buttonmoon.

Im going to go back and read the thread now.

5 week old DD2 is having massive crying fits until 11pm each night, often later. 3am is our current record. She doesn't actually vomit but I can hear milk coming up and she sometimes looks like she's chewing (does that sound odd?). She won't let me feed her lying down and often wakes up just screaming which scare the living daylights out of me. Burps upset her greatly.

DD1 had colic so I had just assumed this was the same hell but mum (who is a gastroenterologist) said last night she suspects reflux. Unfortunately she doesn't see children so recommended I try my GP.

My GP is a reluctant prescriber/referrer so I don't hold much hope of him taking me seriously.

I'm also going to eliminate cows milk & caffeine. I don't think I have much cows milk anyway but I'm not sure how much it would take to upset DD.

So, hello! I'll be back once I've caught up. smile

KellyKettle Tue 22-Nov-11 16:24:21

Well from reading the thread it definitely sounds like DD has silent reflux & maybe CMPI.

Can anyone give any pointers on the elimination diet? What can I eat? My day starts with two cups of tea and toast with butter on it.

<<waves at Poppet from Nov Babies thread>>

buttonmoon78 Tue 22-Nov-11 16:37:15

Well, not that for starters! I found that any milk which is not cows is gross in tea but others say soya can be ok, or oat. Vitalite or pura or something of that ilk is good.

You'll need to absolutely eliminate all cows milk from your diet so check all labels religiously. Once you know that you've been free for a month (or often much sooner) you will either see a huge improvement or if not you can reintroduce it slowly to see if there is a change.

If your mum is a gastroenterologist, see if she knows of a good paed one. Your gp cannot refuse to refer you so going with a name might be a good plan.

Be strong - it is down to you to try to stop the pain your daughter is experiencing. One paed told me that as ds was gaining weight the issue of pain was not important. He won't be saying that to anyone else in a hurry - and I told our new paed on Thursday so she was going to 'ave a word' too grin

Good luck - and hang about here!

buttonmoon78 Fri 25-Nov-11 11:37:57

Any news kelly?

I've spoken to our paed's secretary today with a view to increasing his domperidone. Generally he's a lot happier as he does seem to be less acidic but he's as sick as ever and that upsets him too.

We're on 1.5ml x 3 daily which I think is quite low - she said she would prescribe an initially low dose to leave room for maneouvre upwards if required.

buttonmoon78 Fri 25-Nov-11 11:39:09

Sorry - 4 x daily blush

Poppet45 Fri 25-Nov-11 15:36:27

Well i spoke too soon, a shit evening followed by a shit night after a fairly shitey few days - apart from yesterday during the day when things felt a bit calmer. DD on ran and double her dose of domp cue inconsolable crying - so have reduced the domp to 3/4 of max dose. She fusses and strresses during each bf but doesnt cry much now i basically dont put her down so the screeching was awful. She is also sleeping on me every night and i'd just like to lie down and sleep on my own. We've gone through hell since she arrived 13 weeks ago and i just feel like she deserves a break from pain.

KellyKettle Fri 25-Nov-11 15:47:31

Well I lasted almost 2 days on the dairy free diet (oat milk tastes like crap, doesn't it?) and then had a ready meal with cream in it so it all went out of the window last night. However, DD2 slept wonderfully last night. Not one second of crying.

My HV has suggested infacol but I thought it didn't have much effect. She doesn't seem to have difficulty passing wind it just bothers her at night (burps).

I'm also going to see my GP about my feelings of not coping & DD2s crying (assuming it resumes over the weekend). Hopefully we'll get things sorted.

KellyKettle Fri 25-Nov-11 15:48:50

Oh poppet that sounds amazingly difficult. How are you doing? I don't know anything about reflux really so I can't comment but I wanted to say I'm thinking of you.

Poppet45 Fri 25-Nov-11 16:24:08

Bless you kelly sorry i didnt wave earlier - having to type - and indeed do everything one handed. i had a ready meal with lots of dairy in it last night too... wonder if it is cmpi too. argh i dont have the mental energy to plan a dairy free diet but i cant give up bfing after 9 weeks of expressing 11 times a day foe dd in the nicu, it'll destroy me mentally - help!

ekkiethump Fri 25-Nov-11 19:02:59

i think things are improving on ranitidine and domperidone. she is taking 5-6 oz at a time instead of 3 and seems a little more settled and last night she even fell asleep on the bottle which is unheard of.
my new problem will be that now she is feeding i dont know what she is like when she is hungry or tired because i've only ever really seen her cry in pain!!
how long did people find it took before things improved with ranitidine+domperidone?

Beautifulbabyboy Fri 25-Nov-11 19:23:01

This message is more for buttonmoon than anyone else as buttonmoon was there for me where i really needed her, and to be honest I have since then been the worst mumsnetter ever, so so sorry. So buttonmoon my biggest thanks for your support it got me through a horrendous period. Also for those of you currently struggling buttonmoon is a god send!

Basically, I am posting now (and have been meaning to for ages) as I want to give you all hope. My baby fit all the symptoms you are describing. I know the pain and the horror of being awake all night trying to console an unhappy baby. I know about the countless trips to the GP only for them to ignore you or not take you seriously.

I managed fortunately, through bupa, to get a relatively quick referral to a paediatrician at Great Ormonde Street, Dr Lindley, I would highly recommend him. (it was actually quite depressing how we were fobbed off on 4 visits to the GP, but when i mentioned BUPA in passing on the 5th appointment, all of a sudden we were happily referred by the GP)

Anyway, Dr Lindley diagnosed my dc has not having reflux (despite having all the symptoms - arching / pain / crying ) but as being protein intolerant. He prescribed a special formula, neocate, and we went on the neocate formula that day. Within 24 hours my ds was so much happier, within a week it was like I had a whole new baby. He has been on that milk ever since and we have not had any problems with him since. It is incredible. He is 14 weeks now and sleeps well and eats well. Weaning we have been told to avoid dairy, wheat and soya until at least a year.

Finally, I just want to say my thoughts are with you all, and reassure you that change may be just be 24 hours away, and my only advice is mention neocate to your GPs, health visitors etc etc. It was miraculous for us and hopefully it could help you.

xxx

buttonmoon78 Fri 25-Nov-11 20:31:56

Aww shucks beautiful you just made me cry! I'm so pleased that your ds is much better. That corner is such a relief to turn isn't it?!

Well, spoke to paed today - we're to increase domperidone from 1.5ml x 4 daily to 2.3ml and the ranitidine from 1ml x 3 daily to 1.5ml. So I did and he was puking all over the auction!

I'm just so tired of the sick and crying. He was fighting me again like mad tonight and he always stinks of stilton no matter how often I change his clothes. He's got a nasty rash under his chin because it's always wet with acidy sick. His eczema's getting worse despite being on a dairy free formula.

I'm just so fed up. That's all.

KellyKettle Sun 27-Nov-11 09:27:21

poppet I searched online for some dairy free menu plans but found nothing edible

I had switched to something like the Atkins diet. And beans. I am not sure it was very healthy.

I can imagine how hard it is for you not wanting to stop now. After all the hard work you've done over the last almost 3 months.

Can you ask to see a dietician? So that if it is CMPI you can do an elimination diet without wiping yourself out too?

I have abandoned the diet. I think I have PND so on top of that I just can't cope with diet faff. Plus DD2 has stopped the long crying fits <<touches wood>>. I bought some baby probiotics this week though so I'm going to give her those every day. Apparently they can help with gut flora imbalance which may cause pain. Worth a try...

buttonmoon78 Mon 28-Nov-11 07:12:30

Soooo

Increase in drugs is having little effect (yet, I hope). Also eczema is really quite bad. I'm wondering if it has something to do with weaning him. He's only been having rice and pear so far as it's meant to be an atopic diet but I've also been told that pear is a rare allergen confused

Am going to make an appt with gp today for his skin as I'm currently using my cream on him which is fine while I get it free but not after that - it costs a fortune, the amount I use!

Am off today to try to buy the fridge I wanted to buy on Saturday. We had to abandon the enterprise as I got totaly out of my tree and had a small meltdown blush

Kelly I hope the cessation of the crying was not a short lived thing. I hope you feel better soon - are you going to have a chat with your gp?

silverangel Mon 28-Nov-11 08:20:37

Hi Button - just being nosy - what weight is your DS, I'm sure I need to up DT's meds but gp is a tad useless and not back to peads until Jan.

buttonmoon78 Mon 28-Nov-11 10:44:40

DS is 7.7kg so nearly 17lbs. Our paed will do med increases by phone. Try calling the secretary - normally pays to be nice to her!

halliwell Mon 28-Nov-11 21:33:00

Hi everyone, I hope its ok to join in here, i've read this thread a few times since I got out of prison hospital..... I'm a bit new to all this forum stuff so excuse me not knowing all the abreviations etc.my little girl is 7 weeks tomorrow (she arrived 17 days early though). She is gorgeous but we're having a hard time with reflux, but, like many others, I am constantly questioning myself and doubting myself - is it just me? are all babies like this? (she is my first and its been a BIG shock!!) but so much of what you describe here fits what is happening - the writhing, grunting, groaning, lack of sleep for all of us except her when she is in sling or on us, me losing baby weight due to sheer stress and losing my marbles too. Sorry this is a tad incoherent - she is having her one consistently good sleep of the day/night after her bath and in these few hours I run round trying to do stuff/eat/have a bit of a life....

I just wondered are you all sleeping in same room with babies and hubbys/partners? How is that working for you? We are now sleeping in shifts with her in another room so at least we both get a bit of sleep. I really want to try and get a routine going but maybe that's not possible? Anyone manage a good napping/sleep routine?

Also it would be nice to sleep in same room as my hubby and be a family - don't feel we've done that since she arrived really. sad

anyway, well done everyone its very very hard and also its been a big reassurance to read this thread tonight as earlier today i had meltdown (daily occurance) thinking I was just losing it, she was fine and it was all just me.

I hope this passes soon - for all of us.

Sargesaweyes Tue 29-Nov-11 08:58:40

Hi halliwell. I am only now starting to get a bit of a routine at 13 weeks but to a parent of a baby without reflux it prob isn't. Ds is also my first and it has been hard to come to terms with these first few weeks not really being the wonderful experience I hoped for.

Gp has now prescribed SMA lactose free and is sending a stool sample off to be looked at. Anyone else on this? Ranitidine now dosed at 1.2 ml 3 times a day. Has anyone else been told about early weaning? My GP said to start at 16 weeks.

Now that ds is more cheerful I am finding it hard to figure out his cries. I'm so used to him crying all the time in pain. I hate it when people ask me 'is he hungry' 'is he tired' and I don't even know. That's when I feel like a shit mum-stupid I know.

buttonmoon78 Tue 29-Nov-11 10:53:52

Welcome halliwell!

Sarge You're not a shit mum. Many parents are only just working out what cry means what at 3m so to only just be introduced to the different cries means that of course you're going to be a little way behind. You'll pick it up quick enough. And if you're asked just say 'oh yes I expect so' to whatever they suggest smile

We're on nutramigen which is full dairy free rather than lactose free. Sounds like your gp is pretty good and willing to help - not like many you hear about!

And yes, we're now weaning. DS was 19wks last Saturday and we've just started. He seems to like it - slurps it off the spoon and swallows it well which was the concern I had - that he wouldn't be physically even nearly ready. After the pear debacle I'm now trying spple and peach which seems to be working ok. If he stays reasonably eczema free then I'll try pear again in a couple of weeks to see if there's another flare up.

halliwell Tue 29-Nov-11 11:02:48

Hey Sargesaweyes - thanks for your response first, you are so not a shit mum so don't even think that, the fact you are here asking about things, seeking support for yourself and your family is important for all of you. I do totally know what you mean though, I have these feelings everyday - so glad i found this thread, might be my lifeline to stay sane - got my 6 weeks check today even though she is now 7 weeks, not sure whether to try and appear sane or just weep my way through it!? Any tips?

I am a bit concerned about the Ranitidine dosage we have been given - 5ml 3 times a day - the strength on bottle says 5mg I think - does this sound a lot to anyone??? That was after the first time we saw the doc as well. I am going to ask about lactose free formula - someone I know said it made a huge difference so its worth a try....

I know what you mean about feeling its not a wonderful experience - I'm really trying to cling onto the cute moments and I can't wait for her to smile cos I need to feedback from this baby who looks uncomfy all the time!!

I feel reassured about the routine thing, each time I tell someone we are struggling to sleep, they say oh you need to get a routine, but its just not really happening - a bath every night seems to work nicely and we get a few hours of her being settled so we can eat and maybe speak to eachother, but like someone else said, the night feeds seem to screw her right up, and she grumbles writhes and groans her way through the night.

I know what you mean cos I read baby whisperer and it says you will figure out their cries, but its tough when it could be constipation, wind, reflux or just tiredness, cos I'm sure the little one can't be getting a very restful sleep with all that groaning. Oh well, it will pass it will pass.....

When did your DS start smiling Sarge? I know that they';re all different but its interesting to know.....

Hope you have a good/reasonable/bearable day everyone!!

buttonmoon78 Tue 29-Nov-11 11:05:50

DS is on 1.5ml x 3 daily but of the 7.5mg stuff. It does sound quite high so it might be worth just clarifying.

IME routine + reflux = stress, but that's just my opinion!

halliwell Tue 29-Nov-11 11:21:21

Thanks Button - I will ask the doc today - I haven't heard of anyone else with this dosage and their babies all seem older, plus, it doesn't seem to be doing anything as far as I can tell and she hates having it sad.

Yea, the only things we are really able to do routine wise are regular feeding times and the bath, the sleep thing and any other 'activities' are at the mercy of her and as for getting out and socialising/having a life etc, pah! Someone from my hypnobirth group has just been to bloody vegas with a 2 month old! Makes me laugh (bitterly) so much that I did hypnobirth, had no drugs during horrendous labour and hospital experience and am now having to pump drugs into my gorgeous girl - it is sad.

I never even knew about reflux before I had her.... so its a whole new worldfor sure, not one I really wanted to be part of though. Ah well....

buttonmoon78 Tue 29-Nov-11 11:30:55

None of us are here through choice. And none of us would be giving our babies such a cocktail of drugs through choice. We do what we have to to get through it. smile

Don't make the mistake of comparing your baby with others - that way madness lies!

PosiesOfPoinsettia Tue 29-Nov-11 11:38:34

Can i add the message that you can't underestimate the power of the swing to give hands free time!

MamaLaMoo Tue 29-Nov-11 13:22:27

Hi,

can I ask about how people are managing gross motor development milestones in a baby who can't/won't lie on their back? I am concerned our LO (16weeks) will not learn to kick or roll over if she is on an incline or tummy down all the time. She even sleeps on her tummy on a slope with a breathing monitor.

HV suggested "back time" like the tummy time ordinary babies have when she is nearing a feed and has an empty stomach.

buttonmoon78 Tue 29-Nov-11 14:18:13

Empty stomach?! DS can spew acid from 4hrs previously and then need a feed!

I'm not that worried. Mine has the opposite problem - can't go on his tummy. It WILL work out ok in the end. DD1 was just the same, never on her tummy. She is the best runner in her high school and has just beaten the county champion.

Sargesaweyes Tue 29-Nov-11 17:12:53

My GP is fab thank god. It's terrible that so many of you are having to go privately.

Ds was smiling at about 8 weeks. He is happy and strong when he is not in pain and I don't think it is really bothering him development wise. He is also chatting happily to himself and anyone who will listen. However sometimes he is in so much discomfort from this reflux he won't do anything but cry- although this is getting less and less.

I even went to the German Christmas markets in Manchester today and ds slept most of the day which is a miracle! Keeping everything crossed regarding this milk.

halliwell Tue 29-Nov-11 18:40:41

Glad to hear you had a good day Sarge - I need to get out more - its official - even the doctor said it! She was on best behaviour at docs appointment as usual but doc said she doesn't think her reflux is so bad as she is not crying a lot and the main issue is her discomfort and lack of sleep and wanting to be upright to go to sleep - if we can crack that I think we'll all feel better. I'm sorry for those who sound like it is really bad - feel bad to be a moaner when doc says this, but maybe I'm in a false sense of security again and tomorrow will be a bad day again?? I'm finding that my attitude to this changes on a daily basis, but one thing I'll say is that reading this forum definitely helps me feel like I'm not a nutter!

Quick Q for those of you whose babies like being in slings/carriers - since mine does and will therefore spend a lot of time in one, does anyone have any recommendations for ones that are good for back/spine/hips (hers and mine!) - I heard the Ergo is good but needs an insert for babies under 4 months so not sure, also it would be fab to have one that can be got on and off with minimum of fuss, possibly even keeping baby asleep!!!!

Any suggestions welcome!

Have a good evening everyone, I am willing us all a good night.

halliwell Tue 29-Nov-11 18:44:21

Also just to say buttonmoon - you are so right - have been driving myself crazy reading books, comparing my baby to others, worrying she's not doing this or that - need to stop that RIGHT NOW! thanks for the wise words!

BTW - she has had a very sleepy day today (making up for last night maybe??) hence why I have had time to come on here several times!

buttonmoon78 Wed 30-Nov-11 07:50:59

Halliwell also remember that some people are sometimes a little 'economical' with truth/memories. My friend said to me the other day that I should get him into a routine as both hers were perfect GF babies, sleeping through at 6wks etc. Which is soooo not true. Her dc1 was - she loved the routine etc but dc2? He didn't even pretend to try to sleep through for months and months and was still having regular night wakings at 2yr+. Bearing in mind he was only 4 in Oct she's def got a bad memory wink

Well, we had a dreadful night! He slept til 11.40, took 6oz like a dream and went straight back to sleep. Woke at 3.50 choking on gallons of acid. When he finally calmed down enough he had another 3oz and did exactly the same at 6. I just don't understand. Why doesn't the ranitidine work? And how can he still have stuff to throw up if he's on such a large dose of domperidone? confused

I'm going to speak to the paed again today. I'm just so fed up. I can't even see the carpet on the landing as there's so much washing waiting to be done. I've totally bypassed the laundry basket as it holds about 1/2 a day's worth! I could probably tolerate that but it's so hard to see him in pain and struggling to breathe as he's drowning in his own stomach acids sad

And then this morning he is such a chirpy little angel it makes up for everything sort of and he's sat in his chair bouncing around being just lovely and I get weepy all over again blush

Bubalie Thu 01-Dec-11 10:27:52

Hi everyone, finally managed to get on here again. Been having a nightmare with my little boy and his reflux for the past couple of weeks again, I really don't know if I can stay sane anymore as everyone keeps telling me it is normal that he can't swallow and struggles to breathe when upset!! We've been on gaviscon for a few weeks now and 2 weeks ago paid to go see private paediatrician who prescribed 1ml renatidine twice a day plus continuing with gaviscon. Gaviscon has made him so constipated it's untrue. In the past week he has been getting upset at around 7pm we can"t comfort him and have had to take him out in the car to get him to calm down. when he cries he struggles to swallow and breathe and I find it so scary. Has anyone else had this, please tell me that he won't stop breathing as I am petrified and don't know what to do. I am dreading him getting upset as I know what's coming. When he breathe he sounds like an old man and has very hoarse like breaths. Does anyone have this? Button you mentioned in your post that your LO is choking on his acid I wonder if this is similar to what's happening to us??
I have booked another appointment with the pead tonight, can anyone suggest what I should be asking? Any suggestions would help. Thank you!

Bubalie Thu 01-Dec-11 10:30:15

Also forgot to ask, does anyone use Aptamil Comfort Milk someone told me that maybe I should try that and ditch the gaviscon as my little boy doesn't throw up he has silent reflux?

halliwell Thu 01-Dec-11 12:18:58

Hey Bubalie sorry to hear you're having such a tough time. Couple of things we do that might be helpful. We had the same prob with Gaviscon - we gave the 6 sachets max in 24 hrs and ended up with a screaming baby for 2 days who couldn't poo- we then took the Gaviscon right down and now only give her half a sachet every other feed - she poos for England now! She's still sometimes a bit sick, but not usually too much and if yours isn't, i would think about reducing the gaviscon. We also use the Aptamil comfort milk which seems to work ok for our LO, I haven't tried many other formulas but when we first went onto formula we used SMA and she would throw the whole lot back up. Just be aware that Apt comfort is a bit thicker and with a whole sachet of Gaviscon which also thickens, we had a nightmare with her not getting it through the teat, so either use half a sachet which is ok or maybe a bigger teat, though we tried that and flow was too fast. Hope that helps and things get easier for you. I know its so so hard but try to take each day at a time, take a walk if you can (with or without LO) and look after yourself - you sound like i felt last week and before and its not a good place. Take it easy. xxx

halliwell Thu 01-Dec-11 12:21:23

Quick Q from me for everyone..... any sling / carrier recommendations for 7 wks onwards (would like it to last a good while) - anyone using an Ergo?

halliwell Thu 01-Dec-11 12:23:59

bubalie - meant to say that I think TBH, the fact we keep her upright after feeds and wind her really well and are generally really gentle with her after feeding has maybe helped as much as the gaviscon - i'm still not convinced the ranitidine is doing anything but persevering with it.

Bubalie Thu 01-Dec-11 13:10:08

halliwell thank you so much for your suggestions. I keep him in upright position all the time and for at least an hour after every feed. I will ask tonight about maybe changing to Aptamil Comfort and either stopping or reducing Gaviscon. We have tried to take him off Gaviscon a few days ago as he didn't poo for 2 days, but feeds got so erratic again and reflux definitely got worse, that's why I think he needs a 'thicker' milk! We also give 6 double sachets in 24 hours so he has Gaviscon in every feed! Over the past few weeks I have had to help him poo, as in as soon as I see his 'poo face' I undress him and start lifting his legs etc. and he poos but it is very solid (sorry TMI).
On the sling issue, we have Baby Bjorn one from M&P, it is very good, but would say it is more for outdoor, I take my little boy for a walk in it almost every day and he loves it (I like the fact that it has a very good head support!). xx

Bubalie Thu 01-Dec-11 13:13:41

Also, has anyone tried cranial osteophaty (not sure about spelling?!). Has it helped?

Sargesaweyes Thu 01-Dec-11 15:21:06

So back on Aptimol comfort as SMA LF made ds a full on demon lol. Also gp prescribed domperidone now. I have to be honest that after nearly 14 weeks I have almost given up on finding a solution to this. Think I just have to accept this is going 2 be an issue until he hopefully grows out of it and fingers crossed medicine will take the edge off. Reflux really is shit!

MamaLaMoo Thu 01-Dec-11 15:59:47

Bubalie my LO had the same breathing problems you describe, she was hoarse like Mariella Frostrupp, constantly sounded like she had a chest infection, phlegmy in her throat.

She has a combination of ranitidine 3 times daily, domperidone 4 times a day, gaviscon at each feed up to the 6 sachet maximum and paracetamol for pain relief. We do ALL the recommended handling suggestions, sleeping on a slope, tummy down, hold upright after feeds, wear in sling, change on a slope etc. DD is now 16 weeks and happy, yes actually happy, sleeps 8 hours a night, no more screaming. It is possible.

Breathing problems, no weight gain or extreme distress which continues after initial GP treatment are indicators for referral to a peadiatrician according to NIHCE guidlines on GORD. Go to GP, get referred would be the next step.

sparkle101 Thu 01-Dec-11 16:02:48

Hi Ladies,

I saw a thread from a MNer asking for happy reflux stories and to post on this thread.... I hope it was this one, if it wasn't I apologise!

My DD is now 15 months old. She was in hospital at 8 days old and diagnosed with reflux and potential cow's milk allergy. We were prescribed nutramigen AA and ranitidine to have 3 times a day. I remember it all so well, so much so I became very close to ending it all (PND as well).

She could never go anywhere without a supply of bibs and we had to put a couple of blankets on her playgym as her acid would come up at all times. The swing/bouncer was my best friend and I dreaded late aftenoon as colic kicked in as well.

Gradually we began to notice the liquid was less and less and her hiccuping and sickness was getting less and less (from about 7 mths), at around a year we tried to wean her off of the ranitidine and everytime she became bad at night therefore we had to carry on, but about a month ago, we tried again and since then she has been absolutely fine. We introduced dairy slowly and she is fine with it which is great news.

All I can say, is that it is true, it will pass. The sleep will come and the reflux will go. I so feel for anyone that is going through it and would not wish it on my worst enemy but it will go.

My DD is so happy in herself, she is super smiley and developing really well, it's as if the last 14 months never happened,, she is great fun to be with and sleeps really well now. There is light at the end of the tunnel, even if it doesn't seem like it, and it didn't for me!

halliwell Thu 01-Dec-11 16:58:23

Hey - does anyone find the Ranitidine makes their bub REALLY sleepy?? Mine was so sleepy yesterday (which I kind of enjoyed cos I was shattered) but she has been the same today and its freaking me out a bit now.... she saw the doc on Tues and doc thought she was fine and also said the ranitidine doesn't have side effects, and chemist said same, but looking online, so many people are asking same question, there must be something in it..... chemist suggested reducing the dose a bit to see if it made any difference....

Any thoughts? Thanks!

ekkiethump Thu 01-Dec-11 20:31:28

some ranitidine have got alcohol in them which can make them sleepy. it is very little the equivalent of 5mls of beer or something. it will be written in the information leaflet if there is alcohol in it.

my LO is now 20 weeks. she is no longer crying in pain and squirmy or chewing/grunting on fists after feeds but she still takes little amounts of milk at a time. have come to accept that this will always be the case

am just wondering whether to start weaning her? dont know...

BTW both my LO had reflux and neither of them rolled. they are supposed to start rolling at 16-17 weeks but mine never have - i think because they spend so much of their time sitting up. but on the other hand my ds started sitting up at 22 weeks and by 6 months was sitting upright unsupported very well.

MamaLaMoo Fri 02-Dec-11 09:43:44

Sparkle101 thank you for your story, it was me who asked for happy ending reflux stories, although tbh waiting until she is 15 months to see an improvement right now makes me want to cry, I was hoping 6-9 months!

Halliwell my LO started sleeping lots at 7wks when first on ranitidine and domperidone, because she had been so sleep deprived before and was then more comfy. She spent a couple of weeks being sleepy like a new born, now is normal. You may have got used to a sleeping pattern where your baby had less than they really needed due to reflux and now their body is getting the sleep they need. Also all babies have sleepy days, often when they grow or develop a bit. DD1 did this regularly after a growth spurt.

ekkiethump I am reassured by your DC not rolling at 17 wks, I think DD will be sitting up early too, she leaned forward out of her bouncy chair yesterday after I popped her in and nearly fell on the floor (had not bothered with the securing clips as was for only a second to administer to DD1 blush)

Bubalie Fri 02-Dec-11 16:48:46

Hi everyone, we have been to see pead yesterday and he has increased Ranitidine to 2ml twice a day and continue with Gaviscon. he is also organizing barium test (I think that's what's called) - has anyone had this and do you know how long it takes for it to come through? We have another bad early evening cry and choking session last night again, I am bracing myself for tonight again and have kind of accepted that this is now going to happen every night sad sad. I am so tired and worried it is untrue. On top of all of this we have had the first injections today so not sure if that is also going to upset him!
Mama I am so grateful you mentioned all the wheezing and breathing problems too sometimes I just feel this is just us, people rarely talk about this. Thank you so much for your suggestions too, but I am rarely laying my LO flat he is always upright and when out in a sling rather than buggy. He mostly sleeps on me as he gets unsettled as soon as I put him down, but then I don't get any sleep sad I'm sure you've all been here but it feels so much better to share with people that understand.

MissusTulip Fri 02-Dec-11 17:50:43

hello lovely reflux ladies, just quickly hopping on the support thread while i have one hand free for typing (other more or less permanently in use keeping lo upright on chest). Have been lurking for a week or 3 as I moved from suspected my wee man has silent reflux to it being confirmed. Nursery nurse called in today (part of hv team) an got to witness him gulping up n down his acid, arching back, boob refusing mid-feed etc. (scuse spelling, wriggler is distracting + little sleep). She said one of worst cases she's seen for quite while sad.

he's 5 weeks and on gaviscon. Doing my head in, not following directions as syringing in 15mls into screaming fighting baby is truly awful. doing i in 5mls boiling water and letting cool before giving. not giving full dose, constipated even so.

main reason for popping on to thank everyone for all great tips / advice / loveliness on thread available even to lurkers

oops he's awake screaming n clawing...

halliwell Fri 02-Dec-11 21:52:50

Hey all - not wishing to take comfort in the situation of others but just wanted to echo how good this thread is because I feel like everytime I see one of my friends they think I am being a bit crazy and that my LO is fine even though doc and pead both said she has it - I guess if you are not there at 3.30 til 7 am with baby on your chest, unable to sleep, it does seem hard to believe eh? I'm glad I'm not only one in this position for a good part of the day and night, but won't it be nice when we can all lie down in our own bed without a baby on us (even though it is kind of nice too).

My LO has gone down as usual after her bath and is nice and settled, (though it took ages) no squirming, groaning/grunting.... so why oh why can't she do this after the night feeds?

Wishing you all a good night.

PosiesOfPoinsettia Sat 03-Dec-11 08:07:25

Three of mine had reflux, two went undiagnosed sad. My first was just dairy intolerant and sick alot....I would frequently be covered but he had a dummy and I think it stopped the pain. DD was a whole other story, she screamed day Drs weekly say she wasn't right. She was my third and so I knew that there was something wrong. She and I co slept until she was about 18 months. She's five but still gets acid when she laughs too much, as does DS now 9. DS3 had it too, possible worse than dd, we had to go to a consultant for something else who saw ds3 feed and said he had classic signs of reflux and to give him rantitide. Phew, that along with a swing practically saved mine and his life.

He's three now with no signs whatsoever. smile

PosiesOfPoinsettia Sat 03-Dec-11 08:08:23

she screamed day and night. I would visit the Drs weekly say she wasn't right

buttonmoon78 Sat 03-Dec-11 10:15:47

Bubalie I would ask about the gaviscon possibly causing more problems than its solving. We came off it for a while as paed said that if there were sore patches then the thickened milk could be sticking to them for longer than unthickened milk so allowing the problem to persist. We're back on it now as we think he may be better from that pov and he was puking so much (even with domperidone) that his nappies were getting quite dry.

So - we're off the ranitidine, back on omeprazole and gaviscon along with domperidone. I look like a flipping pharmcay store!

We're also to avoid fruit as it's def contributing to his eczema and possibly his reflux too. He ate parsnip like a trooper last night and only took 2oz overnight!

Poor love is covered in eczema though. His little hands go straight to his tummy and scratch scratch scratch the minute his nappy/vest is off. He's got raw patches behind his ears sad

Off to do some Christmas shopping today!

Sargesaweyes Sat 03-Dec-11 14:57:57

Your poor son button. Eczema is the last thing you or him needs. Is it just reflux he has been diagnosed with or is it an intolerance 2?

Mum and dad bought me and ds a door bouncer/swing today. He loves it! Happiest I have seen him and then he had a poo, bottle and now he is asleep!!! I was actually able to have some cheese on toast and a cup of tea without him attached to me in the harness. Only £20 from Argos and considering I have spent a small fortune on various swinging/ bouncing chairs which he isn't interested in at all this could be a real bonus. Crossing fingers and toes.

Has anyone heard any stories of babies growing out of reflux before 6 months? Don't think I could cope with over a year of ds being like this especially when I return to work.

buttonmoon78 Sun 04-Dec-11 05:42:50

He has been dx with reflux and probable CMPI but this fruit thing has come out of left field! I've been a bit more alert as his 1st cousin has lots of allergies, but fruit?!

My DD1 had bad reflux. It didn't bother her particularly but it was bad in the sense that it made her lose weight etc, but once her drugs were established, she was so much better. There was a huge leap at about 5m and then by 9m it was almost all gone. I hope that gives you some hope!

sparkle101 Sun 04-Dec-11 08:25:29

mama sorry should have said 15 mths is where we are at now. The screaming, the sleepless nights, the vomitting stopped at around 6 mths when she was weaning and sitting up more, we had a couple of flare ups between then and now but it was a couple of days at a time, never long periods and we all know when you get enough sleep you can cope with those flare ups. I really didn't want to make you feel you had to wait 15 mths sorry! Didn't want to scare you!

MamaLaMoo Sun 04-Dec-11 18:38:42

MissTulip the instructions on the gaviscon packets are a load of c**p. My LO was hospitalised with reflux and the paed nurses did something completely different...

They mixed the full 6 packets max dose for 24 hours in a bottle with 30mls cooled boiled water each morning and syringed in 2.5mls of this before each feed then chucked out what was left at end of the day. This solution is thicker than the packet recommends but is still a liquid and easily syringed and swallowed. 15mls is too much to feed a small baby each feed, takes ages.

Sargesaweyes Tue 06-Dec-11 08:59:26

Can I ask how much milk your babies are taking in a day? Ds will prob take anything between 18 and 26 oz in a day depending on what sort of day we are having. Guidelines in the box say 30oz! If one more person says to me 'you need to get 7oz in him before bed if he is going to sleep' I could end up becoming violent. It takes about an hour to get 4oz in him!

Sargesaweyes Tue 06-Dec-11 09:01:50

Ds is 14 weeks now.

MamaLaMoo Tue 06-Dec-11 11:13:31

Bleugh. 4 month sleep regression. Double bleugh.

I was dreading DD waking more at night, couldn't face the 20 mins sitting upright after each feed I was doing in early days. So I didn't. We moved to cot rather than crib/bassinet over the weekend. I have tilted the whole side car cot up on big books to about 15 degrees and fed her lying down then left her. It worked. She is SR not a spitter though. I had really missed co-sleeping with this LO having done it with a sidecar cot with DD1. I didn't think it would be possible to feed her lying down or have a full sized cot tilted up enough.

We've also just got out the high chair, it reclines and she sits supported pretty well aged 17 weeks. Off to see her peadiatrician for a review tomorrow. Got a load of questions about weaning and growth.

MamaLaMoo Tue 06-Dec-11 11:14:46

Sorry Sargesaweyes I EBF so can't help with volumes of formula. I don't think the volume of food consumed in the day has much to do with STTN tbh.

buttonmoon78 Tue 06-Dec-11 12:32:40

Working backwards over the last week, DS (20 wks last Sat) has had 26, 34, 21, 25, 36, 29 and 29oz. For his weight (17lb1) he 'should' be consuming 31-47oz per day.

Yeah right hmm

buttonmoon78 Tue 06-Dec-11 12:35:37

It's more to do with their weight TBH.

Work out the weight in kgs. Then multiply by 120 and divide by 30. That's the min recommended. Do the same but multiply by 180 instead. That's the max recommended.

ekkiethump Tue 06-Dec-11 13:50:55

my baby is 20 weeks too and drinks anywhere from 20 oz to 30 oz in a day. need to get about 27 oz in the day to know i will be getting a full nights sleep otherwise i expect a night waking. her weiht gain is slow but still gaining so obviously no one is worried about it (even though the only reason she is drinking and putting on weight is becuase i sit in all day feeding her little and often)

am getting a bit fed up with it. i am pretty sure her reflux is well controlled now as she doesnt cry or grunt/chew fist after feeds but she still wont take more than 4 oz at a time. trying to split feeds so i offer her more 40min later but sometimes she takes it and sometimes she doesnt which means i can't leave the house as i know she will start screaming at some unopportune moment demanding to feed 2-3 oz.
i officially give up. just waiting for weaning to come and reduce number of bottles she needs so dont need to do these daily battles.

anyone else started weaning and found things better? did they have problems getting minimum amount of milk into them

MissusTulip Tue 06-Dec-11 14:56:23

thanks mamalamoo, I agree completely and have been happily disregarding the instructions after 2 tries at following them - felt confident enough to do so mainly cos of advice on this thread including the 30ml nurses' strategy you'd posted upthread (thanks for posting again for me). I make it up in 5 mls, have managed to get 5mls in approx twicev so far. Great feeling of accomplishment compared to usual maybe 2.5ml in, 2.5ml coughed/spat out... Noticed ds getting wee rash round neck line, prob from gaviscon trickle.

Had hellish weekend esp Saturday. 12hrs screaming/grizzling/wantig to feed hrly. ended up phoning ooh gp as we were losing our marbles. Didn't need to be seen in the end as he fed again, then slept at last for nearly 5 hrs (!) - we'd agreed to take him to gp in an hr if he hadn't settled. Thank god dh was off all weekend.

So after that booked appt with gp today and we're on zantac. So fingers firmly crossed that we'll see a difference soon!

Has anyone else found their previously unused birthing ball a lifesaver? Bouncing on it is one of the few reliable ways to settle ds, esp when windig him is proving tough.

Nursery nurse advised giving some fennel tea - 2 bags in pint water, infuse for 25mins before takimg bags out, keep in fridge. Balls, can't remeber anything about how often u can give it! Sorry. Just that u can give the gavscon in 30mls by bottle and get gaviscon in, fennel tea in for sore tum and extra fluid to off set the gaviscon constipation (replacing the fluid gaviscon draws out of the bowel). She was vvvvv helpful.

Anyone used the dummy with a built in syringe for giving meds? think it's called easimed, random amazon find, ordered it but would be good to know if anyone has good/bad things to say about it.

Sorry, this turned out long n rambling - v tired today. After horrible weekend, now have v sore nipples and a nice red break in right nipple. Right breast is aching today, am hoping v hard that it's not mastitis. Struggling to cope as it is without getting sick...

hope everyone else having good day.

MamaLaMoo Tue 06-Dec-11 15:32:39

MissTulip - Birthing ball grin been using that since the start, even take it and pump with us when we go stay with someone. So much less tiring than pacing the room.

Persevere with the zantac, it took several days for it to calm LO and a full fortnight for complete effect to kick in, then she started sleeping 8 hours a night. Glad your GP is on the ball and not faffing around about paed referrals etc.

Have tried the easimed dummy with DD1 to get calpol in, she wouldn't drink off a spoon until 11 mo (bizarre child), if your LO uses a dummy it makes sense, works just as you'd imagine, can be a bit harder to control the flow than a syringe as the plunger is shorter and there is no guarantee they won't spit it out. With syringing the position I squirt it in makes quite a difference, into the side of the mouth at the back or up to the roof of the mouth (like breastmilk). My LO now 17 weeks is a pro and drinks it up if I place the syringe on the tip of her tongue. She also drinks off a spoon no problem as a result of all this swallowing practise. See reflux has some advantages hmm.

MamaLaMoo Tue 06-Dec-11 15:51:19

Oh yes, gaviscon is an alginate - it forms a jelly in reaction with the stomach contents, it thickens and makes feed heavier, it can't draw water out of the bowel, not sure why your NN would say that. EBF baby wouldn't need more water on a regular basis. I'm a bit hmm about people suggesting fluids in addition to BM if you are BF. Is this your first baby?

Your baby will adjust to the thicker fluid in their intestines and poop daily after a while (about 10 days of no poo, no poo, playdough poo in our case). A tiny amount (1ml) of lactulose in about 9mls of water is all I use now on the odd occasion she hasn't pooped for a couple of days. A EBF baby on gaviscon will not poo some days just like and EBF babies do normally anyway. DD1 (no reflux) didn't poo for several days once, she was fine.

Anyway, hugs for your dreadful weekend, you have got all the right meds in place now, hold your nerve and stick it out for a week. Then you can come on here and tell us how it is much better grin.

buttonmoon78 Wed 07-Dec-11 07:46:38

I think MN need to create a [guilty] emoticon.

We had to go out last night and half way down the motorway I discovered (when trying to make a bottle up) that I had left the powder pot at home shock

Of course you can't just buy nutramigen like that so we decided to get a carton of aptamil as a desperate measure. Well, it has proved his CMPI. His eczema is terrible [guilty]

Actually, it has proved useful as DH was questioning the paed's decision that he has CMPI so now he's a believer. Ho hum.

ekkiethump Wed 07-Dec-11 11:38:31

why is it husbands never truly believe the problem until you prove it to them??? I swear my husband just thinks i am neurotic.

buttonmoon78 Wed 07-Dec-11 12:07:57

Because it is always better when someone else is around. Because they (mine, anyway) seem to thing that babies are just being awkward when they cry - it's not because of pain or anything.... Because (often) they rarely see the problem to the same extent ie all flipping day!

What's worse is that the gp would only give us a 15g tube of hydrocortisone ointment on Friday which was all gone by Sunday pm. So I've been using some less effective hydrocortisone cream all week awaiting the repeat. Only to be told today that the gp won't do a repeat - they need to see him again. How the hell do they expect a 15g tube to last him for a week when he's covered in eczema?!

halliwell Wed 07-Dec-11 15:16:07

Does anyone else find that just when you think things are improving, your LO has a terrible day?

Mine has just spat, coughed, spluttered and cried through a mere 60mls of a feed (she will normally have at least 120) and promptly gone to sleep like she's trying to shut it all out. She was making sour faces and holding the milk in her mouth rather than swallowing, then spiting it out and crying - heartbreaking.

Does this sound familiar to anyone?
She's not been this bad for a bit and thought we were seeing improvement but she did this yesterday as well - its not at every feed, but we had just come back from a walk and she was a bit sick when she woke up, so i gave her some time then tried to feed but she was definitely in pain. sad

bishboschone Thu 08-Dec-11 12:17:16

Has anyone on here weaned their babies yet ?

Sargesaweyes Thu 08-Dec-11 12:53:40

Halllwell- I had this all the time- good day then bad day then awful day etc etc. Touch wood though we have had a good day since last Friday!!!! Hoping medicine finally helping.

The prob I have is now that ds is totally fed up of milk/ bottles due to the fact they have caused pain. I b/f was 6 weeks and gave up because of all of the problems reflux have caused and to be honest can't wait to wean now. The only prob is you still have to get the bloody milk in them. I have started giving ds rusk and milk once a day which he likes. Only 14 weeks though so I know it is really early.

Sargesaweyes Thu 08-Dec-11 12:54:45

Sorry for typing errors- stupid iPhone guessing my words!

buttonmoon78 Thu 08-Dec-11 13:52:27

Yes - I am, been weaning for a few weeks now. DS is 20wks. It making no impact on his reflux yet but then its not meant to be a rapid cure all. And it's bringing as many problmes as it might solve as it's throwing up (pardon the pun) lots of allergies/intolerances.

We have good days and bad days too. It's not much fun! Am also going to start splitting his omeprazole into two doses so the half life effectively covers him for the whole 24 hour period.

bishboschone Thu 08-Dec-11 15:51:05

Oh well I started Monday with baby rice and we had severe vomiting all afternoon yesterday.. Ds reflux presents itself as mostly pain so vomiting isn't really a problem . I have decided to stop as I'm not putting him through all that. I was told it would get better with weaning so I'm a bit confused. He was prem so I started at 6 months actual as instructed but I think I'll wait til the new year to start again.

buttonmoon78 Thu 08-Dec-11 18:15:04

It will get easier with weaning but it's not a quick fix. The idea is that you try to oncrease the amount of solids asap with the result that they decrease their milk intake (obv you need to ensure that they are getting all the vits etc they need). Also, with thicker food comes more staying down, or so the theory goes! The problem is that first baby foods are necessarily runny and therefore are not that much good at keeping vomit/acid down confused

The vomiting might have been unrelated or it might be to do with the rice. I think the idea of waiting for a few weeks will help.

I hope things improve soon!

bishboschone Thu 08-Dec-11 19:26:37

Thanks, a few people said it was a bug but it was only 3 hours so unlikely. Im going to wait, he gets himself in a right state when he is sick and chokes. sad

buttonmoon78 Thu 08-Dec-11 19:36:45

Yup - with you there sad

I don't reckon a bug would be over that quickly. Solids are a lot for a baby's system to deal with. And of course, if he begins to associate solids with pain/vomiting then that could be bad news too.

When I said we've started weaning what I mean is that some days he'll take a couple of spoonfuls, some days nothing as I won't force him to do it!

bishboschone Thu 08-Dec-11 20:23:03

The problem with this blw is because he was prem and spends his days crying his development is behind and he hasn't found his hands yet . So I have to feed him.

bishboschone Thu 08-Dec-11 20:23:42

Remind me how old you baby is and were they prem ?

buttonmoon78 Fri 09-Dec-11 09:16:29

DS is 21wks tomorrow and wasn't prem - born at 38wks.

The whole thing's a bit rough isn't it sad

bishboschone Fri 09-Dec-11 12:03:53

Yes it's rough. I am starting to resent my friends with happy babies which is really sad sad... Ds cries all the time with moments inbetween of being happy . I was in the chemist earlier And someone said to me " mum , does he need a feed" .....talk about patronising ! Err no , he has reflux and is in pain,!

We saw the physio this morning who is going to refer us to another paed (yay) because he hasn't started using his hands yet and he has neck lag. I know this because he was in an incubator for a month on a drip and slept for a good 6 weeks pretty much 24 hours a day . He also had delayed visual materuration . But in top of this I think the reflux is holding him back as he is either crying, sleeping or feeding. There is so little happy time in between for learning. sad

buttonmoon78 Fri 09-Dec-11 12:23:45

It will get better bish. I know what you mean about resenting friends though. And then you feel worse for being an unreasonable bitch, no?

I hope you get some reassurance over his other issues. None of mine have been very forward but they're all bright happy kids now with no physical issues. DD1 had FTT with her reflux and spent til 18m catching up but she's now a beautiful 14yo with no issues. And DD2 who didn't crawl or walk til quite late began talking at 9m (as in proper words) and is the brightest kid in her year. I'm sure he'll be ok.

Lots of hugs.

bishboschone Fri 09-Dec-11 14:07:42

It is rough sad... I do worry so much about him sad..

bishboschone Fri 09-Dec-11 14:09:52

I think the whole comparing thing is hard .. I know not going to cope when he is the last to do everything. I don't want him to do it first just know that he will be able to do it. I have had problems since the beginning of this pregnancy and feel like its just one thing after another.

buttonmoon78 Fri 09-Dec-11 14:14:24

Oh, I wish I could just hug you. You sound like you need someone to look after you.

Comparing is one of those things we all know we shouldn;t do but can't help doing. Make sure you don't listen to the competitive parents - you know the ones, whose dcs do everything first and best, yet this is never independently verified wink

We're having a ropey day here todya. Whenever I'm on here a lot it's because ds is bad! All I can do it hold him sad He won't take more than an oz or two so is hungry but can't settle to it. I said that as he's my last I wouldn't wish his life away, but damn me, I wish he was one and all this was over sad

bishboschone Fri 09-Dec-11 17:02:00

Yeah he is my 2nd and I waited 7 years because of a horrendous birth with dd. and I feel guilty because I think the reflux is because he was prem as I had pre eclampsia ! Anyway , I have a fab husband who is brilliant and ds does sleep all night . I just wish I could take his pain away in the daytime

bishboschone Fri 09-Dec-11 17:02:34

Ps ... I am wishing his life away too sad

Sargesaweyes Fri 09-Dec-11 20:43:15

Don't feel guilty bish sad. It's hard to think straight with reflux going on. When ds was at his worst I kept blaming myself as I didn't know I was pregnant til 7 weeks. During that time I boozed, smoked and ate all the things you are not meant to- it was Xmas after all. However, it's not your fault, my fault- anyones fault and in a few years we will just be one of many women who turn round and tell their children what a bloody nightmare they were! Also I think we will appreciate their happy times that little bit more than parents who haven't been through this! I treasure every single smile from ds. Big hug x

buttonmoon78 Fri 09-Dec-11 22:14:18

The reflux is because he has reflux. That's all. It is nothing to do with you at all. Which is easy to say and difficult to believe, I know!

After a terrible day, ds has been asleep in his car seat since 6.30 shock

And I'm going to leave him there! After all, let sleeping babies lie, eh wink

bishboschone Fri 09-Dec-11 23:18:08

Thanks , I know the pre eclampsia wasn't my fault but still I feel sad that he has to go through this . Things like going to tesco and shops I don't do because he shouts the whole time . I stay in a lot of the time simply because it's easier . I know it isn't forever and he is Lready 6 months so hopefully he will get better soon ( optimistic. Emotion ) wink

bishboschone Tue 13-Dec-11 16:27:51

How are you doing button moon?

buttonmoon78 Tue 13-Dec-11 16:32:45

Can't shift this latest lot of eczema which was due to my stupidity that stray bottle of aptamil. Back to the gp tomorrow for another review!

His reflux seems to be a little more controllable. I'm sticking with the gaviscon despite the plasticine poo effect. The domperidone may or may not be helping - who knows! I've split his omeprazole dose in ntwo so he gets the benefit of an extended half life rather than getting super cranky after 20 hours.

So on the whole, not too bad! How about you?

bishboschone Tue 13-Dec-11 17:22:47

Well.... We have had in the last few weeks cold. Cough bronchitis and sickness and diarrhoea . I dont k ow how much of that is the reflux . I suspect a fair bit because his gag reflex is quite strong . He is much much better but still has diarrhoea . I took him to the doctors who was pretty evasive and said see how he goes . Anyways in himself we have had a few good days which I'm grateful for . He even let me Hoover while he watched waybaloo earlier which is unheard of . smile

wakarimasen Wed 14-Dec-11 15:48:52

Hello,

Hoping to get some advice from those of you who have experience of reflux in babies. My baby boy was diagnosed with reflux 2 weeks ago (he's 8 weeks now) after I went to see the GP. He cries after every feed, lolls his tongue and bubbles at the mouth. He is sometimes sick too (but not very often) He is obviously very uncomfortable with it so we tried Gaviscon in his evening bottle (He is mostly BF with 1 FF at night) and 1 sachet made him constipated for 3 days! We are giving him 0.3ml of Ranitidine 3 times a day..

The upshot is that he is still crying a lot after feeds and at night he sounds like he has a cold - he gurgles liquid in his throat and his nose sounds stuffed. We have raised the end of his crib with books to create a slope. We just dont know what else to do - he looks so tired as he can't sleep for more than 1.5hrs in one go and I am on my knees trying to look after him all day and night. We have a review with the doctor in a week and wondered if anyone had any suggestions for other things to try? Should we continue with the Gaviscon as that did reduce the amount of liquid gurgling in the night? Do they eventually get used to the Gaviscon and stop getting constipated? It ust seems like Gaviscon sorts one problem but creates another.

Sorry this is a long post....felling totally clueless just now and its getting me down :-(

bishboschone Thu 15-Dec-11 07:37:02

I'm no expert as im having my own struggles but I just wanted to say hello . Reflux makes my ds very unsettled all day and he cries a lot . We have found his best point is having ranitidine 3 x a day . We didn't do the gavsicon route as he was prem and had feeding problems from birth. My go told me first line of attack is gaviacon, then ranitidine and domperidone , then omerprazole as last line . We were on do domperidone too but we found it upset him more. Anyway I hope you are ok . I think we all feel the same . I have stopped seeing my friends as I can't hear what they are talking about over da crying and just got upset . I think reflux can make you feel horribly isolated .sad

JoneseyA Thu 15-Dec-11 12:53:27

Hi all

I am trying to figure out what is wrong with my son... He is 17 weeks and for the last month he had become v difficult to feed during the day. The only way he will feed is if i feed him a soon as he wakes from a nap and then he quite often only feeds for 5 mins and then comes off and cries. He is ebf and won't take a bottle. His evening feed is normally fine as are his night feeds. He isn't gaining enough weight and has phases of brining up milk after feeds.

If I dont time his naps right he will refuse to feed in the day for upto 10 hours which is really stressful.

Does this sound like reflux? Any advice greatly received!

Sargesaweyes Mon 19-Dec-11 18:41:27

Jonesey, I would go to the gp or talk to your hv. Ds showed signs of reflux from birth. Has your ds or is it a new problem?

Ds is now on 2.5 domperidone and 1.9 ranitidine. I am finding getting the ranitidine in him a nightmare! He hates it and attempts to spit it out. Any tips? I've done the aim it at his cheek etc and it appears where ever I aim it in his mouth he can still spit some of it out. I dread medicine time as he gets so upset sad. The domperidone he happily takes off the spoon!

Poor little love has a cold at the mo which isn't helping but heh ho.

banana87 Mon 19-Dec-11 22:05:08

Hi all, I'm new here. DD2 is 5 weeks and has silent reflux. She's started omerpezole (sp?) Friday once per day and I've cut dairy effective today. Her main symptom is nasal congestion, does anyone elses DC have that as a symptom? I'm also thinking of trying cranial osteopathy as I hear good things about that. Has anyone successfully tried any of the above?

hadak Mon 19-Dec-11 23:11:59

Hello ladies.
I found this thread froma link on one of the pn threads and I am very glad I have. It is good to know there are other parents who know how this feels - although obviously wouldn't wish reflux on my worst enemy.

my son is almost 5 weeks old and has generally been unsettled from birth. He is BF. We have today been pescribed Gaviscon after using colief and me now cutting dairy from my diet (since Friday)I was wondering if anybody could advise me how long it would take to see an effect from being dairy free? and also from the Gaviscon? The GP advised if the Gaviscon were to work it would be pretty quick and told me to return in a couple of days if there is no effect. Would it work this quickly?
Also GP instructed Gaviscon before feed but instructions on packet say after- whch do you do?
He has had 3 doses up until now and to be honest I can't see any difference he is still in pain. Can you advise as to what the next step medication wise may be and how easy any other medications are to administer as to be honest I am having a bit of a nightmare getting the gaviscon and colief (which he was pescribed previously and Gp today told me to continue with) into him and that's before feeding him!!
Any help advise appreciated

MamaLaMoo Wed 21-Dec-11 11:49:49

Hi Hadak, my LO has taken Gaviscon since 5weeks old. This is how we do it which is different to what it says on the sachets (she was hospitalised with reflux and the nurses made up the gaviscon this way).

First get 3ml plastic syringes from a chemist and a 20ml syringe. Make up 30mls of cooled boiled water and the correct number of sachets for your child's weight (6 in our case as she was over 4.5kg) for 24 hours. Syringe in 2.5mls before each feed up to a maximum of 12 doses in 24 hours. Slowly squirt the liquid into the side of the mouth, tilt your baby back slightly so it doesn't immediately dribble out. They learn to swallow it pretty quickly although there is a bit of spluttering and coughing for the first few days. Stick with it. Use a bib.

The gaviscon immediately thickens the stomach contents and forms a layer on top of the milk to keep it in the stomach. It will therefore work straight away. If it is not improving your child's condition to the point that they are comfortable then the next step is something to reduce the acid production in the stomach, ranitidine or omeprazole and possibly a motility drug which speeds the transit of food through the stomach like domperidone.

Read the book Colic Solved: The Essential Guide to Infant Reflux and the Care of Your Crying, Difficult-To- Soothe Baby available on Amazon written by a paediatric gastroenterologist.

Coleif is only helpful if your child has the fairly rare condition of lactase deficiency, their body doesn't have enough of the enzyme lactase which digests the sugar lactose in milk. Not sure it will help unless you know your LO has a lactase deficiency.

MissusTulip Thu 22-Dec-11 09:34:41

Hi all,

yes, the zantac has helped a lot! Reflux by no means gone but he is no longer tortured by it every time it happens (just sometimes, mainly afternoon/evening oddly). He is still putting on weight like a trooper, so I'm a bit anxious about when he will 'outgrow' his current dosage and need it upped. Mainly as I'm getting used to him settling into a pattern where he sleeps (in his tilted moses basket most of the time, hurrah!) and plays on his baby gym or bouncer contentedly - dreading any return to the awful time of him screaming and me trying fruitlessly to comfort him. He is snoring away blissfully atm, while I type this with both hands.

I also switched to latcofree milk and cheese for the past 2-3 weeks, which overlaps starting the zantac and him settling well. Probably just a coincidince but thought I'd mention it. Haven't been anywhere near as good as some ladies on here at excluding things (my heart sank at the thought as cups of tea and naughty food treats were all that were keeping me going!) but have cut caffiene out in the evenings too, again, with a good effect on his general settledness. Still need it in the mornings tho <bad mummy emoticon>...

I'm sort of copying your method for making up gaviscon method mamalemoo - 20ml boiling water into a sterilsed tommy tippee storage pot, 4 sachets gavison, into fridge etc. It's good how it dissolves so well standing in the fridge! I've found that eazymed medicine dummy a godsend - was always worried i was going to hurt his wee mouth with the 5ml syringe, so poking a dummy in the cormer of his mouth and squirting in the gaviscon is much less stressful! Mind you, he still manages to spit a reasonable amount out 50% of the time...

Oddly, I'm not frightened by the 1ml syringe for the zantac tho I'm just as likely to poke him in the mouth with it - maybe more so actually, as he bloody hates the zantac! The taste of it is so strong it actually takes his breath away for a few seconds and then he foams at the mouth and is v upset until I can get him onto the boob to take the taste away...

Really hoping either something works for everyone else's poor babies - or that they're helped by passing the 'magic' 4 month period or weaning. Button my heart goes out to you - I remember you from the spd birthing ball thread - hope you're fully recovered from the horrid pgp. Mine is more or less gone 8 weeks on, I could not imagine coping with that on top of just reflux, never mind allergies and eczema...

hadak Thu 22-Dec-11 22:33:17

Mama Thanks for that info re Gaviscon.
We went to GP again yesterday morning after trying Gaviscon since Monday and him seemingly worse. He was crying and in pain when we saw GP who sent us up to the hospital.
He managed to fall asleep on the journey there (about half hour drive away) and was ok whilst we were there!! However the hospital gave us ranitidine 0.3 x3 times a day. Although they said that none of the medicines given for reflux are proven to work (?) and will see us in clinic in 2-3 weeks.
He appeared a lot better today but still a little unsettled although did have a sleep this morning and has sat in his swing for about 10 mins which is great. So we will have to see how we go.
Button I feel for you re eczema. My older son had terrible tummy problems (we were told colic) forever and then as soon as he was weaned got awful eczema. He wass intolerant to Dairy and gluten with a few other allergies. We used to wet wrap him then he went onto pro topic creams which were helpful and we still use. I do hope your little ones eczema clears up soon.

bishboschone Fri 23-Dec-11 07:27:34

I'm not sure if this helps but we have turned a corner with our ds. He was 7 weeks prem and is now 6 months actual . He used to cry pretty much all the time but we have got it down to about 15 minutes in 24 hours . Only when he is tired or bath time .! We were sent home from hospital on domperidone and ranitidine ( Zantac ) he is now on 3x 1 ml of ranitidine only . We discovered the domperidone was causing pain as it pushes the milk down really quickly so we stopped it . We stopped the ranitidine too but he cried again do we put him back on it . He is very behind on his development , partly because he was prem and partly because he was crying in my arms the whole time do no time/ interest for playing or tummy time etc . But on the whole he is much much better so there is light at the end of the tunnel .smile

Sargesaweyes Fri 20-Jan-12 10:30:41

Just wanted to bring this thread back to life with some good news. My little one- now 5 months is being weaned off the ranitidine. He has gone from a sicky, crying poor little mite to the happiest baby in any room. The change really began at 16 weeks and fingers crossed our reflux journey is coming to an end. I just wanted to let people know that there is hope as when my son was 12 weeks I thought he would never be happy. I hope others are also turning a corner.

jan2011 Sat 21-Jan-12 20:01:16

hey it is encouraging to hear good news im glad your babies are happy now.
my baby had reflux bad her first month and a half, started the ranitidine and things have been going fine until the last week or so - we brought her to the doc again and he has given us gaviscon as well as the ranitidine. it helps a bit but i am just worried the whole thing is kicking off again. it may be just as she is going through her 4 month growth spurt and will calm down after, im not sure. she is already on 0.5ml of ranitidine 3 times a day so i don't think there is much more we can do. it seems to be worse with breastfeeding than her bottle at night (thickened formula). this is discouraging for me at the minute as sometimes when i put her to the breast she starts screaming before i even feed her. its hard when you know she is hungry but she won't feed. then she tires herself out and does feed in the end, but chokes on it quite a bit - its mostly silent reflux.

littletomato Sun 22-Jan-12 09:35:16

.5ml x 3 doesn't seem like enough -- mine had to take around .75 at 8lbs/8weeks...

Sargesaweyes Sun 22-Jan-12 09:44:04

At 4 months my son was on 1.5 ml so maybe dose needs looking at

jan2011 Mon 23-Jan-12 07:30:04

wow - i was told that the dose was weight related and would go up if needed as their weight went up. i thought she was on the highest dose for her weight. 0.5 3 times a day? she is now 11lb, i will ask the hv about it again, as the meds really did help. she only increased it from 0.3 to .5 when she went from 8 to 10lb.

Tinks30 Sat 04-Feb-12 12:32:04

Hello,
I'm so glad I found this forum. I have ten week old twin girls who both have reflux but one is worse than the other. Literally after every feed she will projectile all over the place or all over her sister. When feeding them on my own I try to feed them at the same time otherwise i end up feeding babies all day but I'm starting to think I might have to feed them one after the other.
Does anyone else have twins with reflux? It's starting to really get me down - I literally spent the whole of yesterday changing babies and doing the laundry!
Tinks xxxx

littletomato Fri 10-Feb-12 07:13:15

hi all, I am new here. My 13-week-old (8 week adjusted) has moderate reflux. He doesn't sleep much (and certainly not on his back), so it's been pretty much a three-month marathon of holding him around the clock. He's on ranitidine, & we're trying to manage the vomiting without using domeperidone.
Anyway, I noticed a little while back that he started farting almost constantly. Everyone tells us that it's "better in than out". great, but it does interrupt the little stretches of sleep that he's finally starting to enjoy. he used to wake up because of acid, but now he wakes up to pass gas...
for a while i was hoping that it was his digestive system maturing, or the fact that i switched him to Hipp formula.
But I've just noticed that sorbitol, one of the ingredients in ranitidine, can cause gassiness/abdominal pain, and the fartiness started after his dosage was upped. I'm starting to convince myself that it's the sorbitol. Anyone have any thoughts, or (if my crazy little theory is correct) know if there's sorbitol-free ranitidine?

Bubalie Wed 15-Feb-12 10:59:57

Hi littletomato - I don't have an answer to your question, but can tell you that we have the same issue with my little boy (20 weeks this week and has been on ranitidine since he was 7 weeks old). He is waking up all night long to pass gas. He seems to settle much better sleeping on his tummy but I am too paranoid to leave him like that, so I usually turn him on his tummy while I supervise (i.e. sit in a dark room counting sheep smile). We are going to see the consultant on Friday for a check up and I will ask the question and report back. Hang in there smile

Bubalie Wed 15-Feb-12 11:03:22

Forgot to add regarding dosage, we are under the consultant care and my little boy is 4 months old and is on 2mg ranitidine twice a day (4 ml in total) and has been on this dosage for a while.

narmada Wed 15-Feb-12 13:34:20

bischbaschone I was you a year ago. My DS also had significant head lag (although wasn't prem) and was under a paed until recently for what was finally decided was benign infantile hypotonia (e.g., low muscle tone of no significance in the long term, hopefully).

He had reflux too - I wonder whether reflux is common in babies with lower muscle tone. I never asked the paed but I suppose logically it's more likely because a lot of the digestive system is comprised of muscles...

xxx

narmada Wed 15-Feb-12 13:35:08

I should say that DS is now totally fine, no head lag any more (altho it took a long time to resolve) and best of all no more reflux. There is hope, but it is very difficult when it's happening.

narmada Wed 15-Feb-12 13:36:54

OH and sorry for the multiple posts but just to say anyone with a baby who is exhibiting reflux symptoms might want to consider milk allergy, which is not that unusual. Not lactose intolerance (very very rare) but allergy to cow's milk proteins. Same symptoms as reflux. Probably been said on here lots but just re-emphasising in case anyone is coming straight to the end of the thread.

littletomato Thu 16-Feb-12 09:07:31

thanks bubalie, i'd be curious to know if the consultant would have anything to say about it.

Bubalie Fri 17-Feb-12 21:33:05

littletomato asked consultant today if ranitidine causing gas and he said not related directly to medication, usually babies with reflux and colic are windy and unsettled as the whole digestive system is disrupted. I did think about it and my little boy has ranitidine twice a day morning and night and he is ok in the morning/during the day and only struggles with wind at night...

Tinks30 Sat 18-Feb-12 16:12:28

Does anyone else find winding their baby hard when they have reflux. My twins are both on gaviscon and ranitidine.

Bubalie Sat 18-Feb-12 16:37:44

Hi Tinks30 - my baby is on the same medication as yours. he always winds well in the day, but nighttime winding is a problem most of the nights as it takes ages sad

minipie Tue 27-Nov-12 19:51:31

Hi, is this the most recent reflux support thread? Marking my place if so. DD looks v likely to have silent reflux. She was premature and is now 38 weeks so not even term yet, she is under 6lb and my heart breaks for her as she is so tiny and so unhappy.

She does liquid sounding burps that smell sour, has white bits in mouth, sticks her tongue out, makes "disgusted" faces and chewing faces, hoarse grunts, oh and of course she is not happy on her back and won't sleep unless held vertically.

We have just started today on ranitidine and domperidone, she seems a little better and I am praying this is the answer for her and for us. However we haven't yet hit the nighttime so it may all go downhill then.

If anyone is looking at this thread - did these meds work for you? How long did it take to see a result if so?

Having read the thread I am now wondering if I need to cut out dairy (DD is EBF) or even try putting her on neocate formula (if I can get a dr to prescribe it, and if I can get her to drink from a bottle... Both big ifs).

Anyone tried cranial osteopathy?

stacikairi Wed 19-Dec-12 20:04:03

hello I am so glad i found this website and this thread! I have had no help whatsoever from my HV with regards to my babies reflux. He is 4 weeks old, and has been showing clear signs of reflux from about 1 week. The crying and back arching after a feed, the constant vomit after feeding, will settle in my arms upright, the minute he's flat in his basket he wakes himself up coughing and choking within half an hour or so, hiccups every feed very severly and the list continues. She suggested a lactose intolerance, and put us onto the Nutramigen 1, which helped to some degree (making his bowel movements more regular etc) but we still had all the above listed problems. This has been 4 weeks of pure grief and distress for both myself and my little man. Because he was waking himself up with the reflux he has been getting more agitated and miserable. As well as us becoming more distraught and exhausted. We have him on the Gaviscon infant now, and we have seen a vague improvement. He is still badly refluxing, but now its thicker and doesn't seem to be as uncomfortable for him, its just the coughing and choking we're struggling with. Thank you so much for the advise on things to try!! Its so frustrating being told 'Its perfectly normal, it will pass, it gets easier!' when all i can see is a brick wall from both my Health care assistance and my own patience! Here's hoping for things to start improving!!! sad

YellowWellies Wed 19-Dec-12 22:07:24

Is this the most recent reflux thread? If so can we join the club? smile

smile4me Sat 29-Dec-12 04:56:16

Hi is this thread still active? Hoping for some help from some of you experienced reflux mums! smile

Seriouslysleepdeprived Sat 29-Dec-12 08:21:33

My DS had reflux & we're 8 months in now. How are you getting on? Reflux babies are hard work but it does get better smile

Passmethecrisps Sat 29-Dec-12 21:59:03

Hello! Is it okay if I join you?

3 weeks ago my now 7 week old started behaving oddly - night feeds became a total trauma and she stopped sleeping as well as she previously had. She stopped taking as much formula and gradually became more unhappy. Then one day she just shrieked all day - literally all day. She was going purple and just couldn't be calmed. The same day she started fighting the bottle massively and in 18 hours took 30ml.

A visit to the GP saw us getting an immediate referral to the paediatric ward where we were kept in overnight and started on rinitidine, domperidone and infant gaviscon. All was ok the next day so we were discharged. However, the next day my DD seemed to decide enough was enough and simply refused to eat. In the end she slept for 24 hours including through medical examinations and a prick test. She was then diagnosed (is that the correct term?) with Milk Protein Intolerance and moved onto soy milk.

Slowly she has built her appetite back and, for the most part, the meds and milk seem to have worked a charm. However, I still have lots of questions and there are still tough days.

I hope that my epistle hasn't put you all off me!

smile4me Sun 30-Dec-12 19:13:42

Hi my 3mo DD has been a happy chucker about 80% of the time up, but the last couple of weeks she has started refusing feeds, and is getting to the stage where sometimes she'll refuse feeding for several hours of the day, screaming until she goes to sleep, then wakes up screaming again. It seems to be getting worse and worse (I read on the cryingoverspiltmilk website that quite ofen babies don't show pain from reflux until they get to 3 months) but the Drs and HVs attitude is just that it's normal spitting up. I don't know quite how normal it is to spit up huge quantities after every feed, and still be spitting up seveal hours after a feed, but I hate seeing her in so much pain when she's obviously hungry.
Any tips on how i get message through to them that I want this taken seriously? And is it worth trialling just Gaviscon first or should I ask to start straight on Ranitidine?
Thanks

YellowWellies Mon 31-Dec-12 22:24:15

Smile we started straight on ranitidine as DS is BF and getting 15ml of gaviscon into a BF baby with each feed is just not going to happen. In the end we've been put on omeparozole, - domperidone and ranitidine didn't cut it. I'm on a soy and dairy free diet too to eliminate them from my milk.

Passmethecrisps Mon 31-Dec-12 22:41:51

smile how are you feeding LO? By that I mean is it possible to keep a log of quantities? My LO is formula fed and docs seem reassured when dealing in exact figures. If you can try keeping a diary so that the extent of the food refusal can be understood.

Being formula fed also makes the IG easier to administer. It seemed to help my LO who was mainly an acid refluxer but latterly became acid and chucking up.

Passmethecrisps Mon 31-Dec-12 22:44:47

Also, smile, I reckon that the more clued up you are the better. Go in wih a clear sense of what you want to happen whether that be a trial of meds, referral to a paediatrician or possibly a dietitian.

I was terrified of not being taken seriously but luckily had a GP who was all over it. Knowing what you are talking about re drugs and so on should really help though.

smile4me Tue 01-Jan-13 07:30:36

Hi passmethecrisps we are EBF so difficult to know exactly how much she takes, but is gaining weight really well, which I think is why Dr and HV don't take any notice. But have read that some reflux babies do this because it soothes their poor wee throats. I think you're right about going in with a goal too... I tend to be a bit too passive (even if I know they're wrong) so must have a plan!

Thanks yellow wellies I hadn't realised you had to get so much gaviscon in! I can see at least 12mls of that ending up on me grin. Think I might ask to trial ranitidine straight away. We have been a bit better today, I've figured out that she will calm down after about half an hour and then can eventually feed but with lots of pulling off and fussing in the process. How long did it take for you to see an improvement after you went soy and dairy free?

Passmethecrisps Tue 01-Jan-13 22:45:38

Good luck soy. We saw very speedy improvement from the rinitidine and domperadone then again with the soy. I would say max a week to see very definite improvement but LO was certainly more comfortable straight away.

My LO has been quite grizzly and upset today so I am wondering if her weight has increased. The medication is VERY weight dependant so ensure that you keep having the dosage increased as your LO grows.

Keep us posted on how you get on.

YellowWellies Tue 01-Jan-13 23:02:57

smile it takes 2 weeks for dairy and soy to leave your system and another 2 weeks to leave the little one's system - so you'll see the full effect in a month but we are already seeing an improvement after cutting them from my diet 2 weeks ago. Indeed within a few days we saw a change, and now if some muppet in a restaurant gives me dairy (it happened at the weekend) despite saying a dish was free of it, we can tell in a couple of hours as LO goes batshit.

Jonas was growing really fast too as he was comfort suckling off me (breast milk is an antacid) now he's on the omeperazole he feeds much more normally i.e. every 3 hours during the day and 5-6 hours at night. Previously it felt like he was on the boob all day!!! I'm expecting his growth to slow down now. It's annoying that some in the medical profession only take reflux seriously if the baby is a 'scrawny screamer' mine was a 'tubby screamer' and that's distressing too!

We are on day 2 of omeperazole and the difference is AMAZING! But we had this for the first three days on ranitidine and then he got used to it / the effect didn't last so I'm prepared for some backwards steps and possibly having to up the dose.

I agree with pass go in and state clearly what you want. I got the doc to miss out the gaviscon step by putting my foot down and challenging him to get 15ml each feed into a BF baby. Also we've a family history of this so I knew more than the doc - sadly we couldn't get the liquid omeperazole on the island I live on (none of the pharmacies or the hospital have it) so we're on dissolvable tablets which aren't quite as good but are doing ok for now.

smile4me Wed 02-Jan-13 02:28:10

Awesome thanks so much for the advice! sad sad that going dairy free is so effective... I'm a bit of a dairy addict but will have to manage I guess. At least if it stops the screaming it'll be worth it!

Passmethecrisps Wed 02-Jan-13 10:47:23

Good luck smile. Sorry for christening you 'soy' yesterday - obviously got soy on the brain

TruthSweet Wed 02-Jan-13 16:15:28

YellowWellies - DD4 is on Losec MUPS omeprazole dis-solvable tablets 5mg a day, I didn't even know there was a liquid (DD2 was on Losec MUPS for gastritis but had side effects so is on lansoprazole). DD4 is also on ranitidine 0.3ml three times a day & domperidone 0.8ml 4 times a day but I think the doses need to be increased as she's been on those since 2w & she's 15w now.

I am wheat, dairy & egg free, I think soya free will be the next step.

Interestingly enough she's also been diagnosed hypermobility syndrome (HMS) which has links with reflux (she has super soft, super stretchy skin, blue sclera & 3 family members with HMS). Tiny bit of info here

Passmethecrisps Wed 02-Jan-13 21:17:54

What is he difference between domperidone and omperazole? We have reduced DD's domperadone dose today as we worked out it was causing her terrible stomach cramps. I am not sure she needs it anyway being a silent refluxer

Interesting info about hyper mobility - I will take a look at that link

TruthSweet Wed 02-Jan-13 22:21:47

Domperidone speeds up the baby's gut so it moves milk out of their stomach quicker, it is also an anti-nausea drug.

Omeprazole is a proton pump inhibitor aka an antacid.

What was causing her cramps? I'm glad she's on the mend

Passmethecrisps Wed 02-Jan-13 22:33:24

Thanks truth. She takes rinitidine so I imagine the omperazole is much the same?

We dropped one of the dozes of domperidone and changed it from 1.5ml to 1ml. She was much better this afternoon and this evening so I presume it was the domperidone causing them. I read elsewhere that it can cause them because it moves the food through hich can then put pressure on the gut

When I rubbed her lower tummy at bathtime today she properely screamed so I presume her tummy is still very delicate. Poor wee sausage.

We will keep the lower dose unless we see any problem with sickness. The only issue though is that she is very prone to constipation and the domperidone seemed to really help this.

Feel like we swap one evil for another sometimes.

She is currently sleeping nicely though so fingers crossed

YellowWellies Wed 02-Jan-13 22:38:13

Pass domperidone made Jonas miserable too - as he's BF the doc let us drop it as milk leaves the stomach pretty sharpish anyway.

Passmethecrisps Wed 02-Jan-13 22:43:11

Interesting YW. At our last checkup the consultant said he was 99% convinced the reflux symptoms were as a result of the CMP intolerance but was happy for her to stay on the meds. We did wonder then why he ramped up her dosage. I am happy for her to keep taking it because constipation was previously making her miserable and she is by no means 'free running' now. I think it will be a bit if trial and error getting the dose right.

YellowWellies Thu 03-Jan-13 10:17:20

Truthsweet the omeperazole liquid is, literally 100x more costly so most GPs fail to mention it!

Interesting about the HMS I have a lot of those symptoms!

Passmethecrisps Thu 03-Jan-13 10:47:07

Am I right in thinking that hyper mobility is what we used to refer to as double jointed?

BigPigLittlePig Thu 03-Jan-13 11:15:33

I've been watching this thread for a while now as I suspected my LO has silent reflux. Having tried many things over the loooong bank holiday periods, have now been to the GP, and feel llike I can tentatively say...

Gaviscon has saved my sanity!

Am keeping my fingers and toes, legs, arms, etc crossed it continues to do the job. Thanks for all the tips!

TruthSweet Thu 03-Jan-13 11:21:52

Pass - yes it is

Passmethecrisps Fri 04-Jan-13 21:09:39

Thanks truth

Hi there bigpig I am so pleased that IG is giving your wee one some relief.

I fear my wee one might have grown too big for her current dosages of meds. She has been pretty screamy and miserable today. It is great she has grown though.

YellowWellies Sat 05-Jan-13 16:17:09

Well done P for packing on the pounds - poor you Pass on the screaming - I think we might need a higher dose for J too (he's on the lowest possible dose of omeperazole), so, sigh, another call to the GP on Monday. We must look like nightmare Mummies!!!

TruthSweet Sat 05-Jan-13 20:36:04

I always seem to get the same GP each time I call up 'Hello Dr XX, it's Mrs Sweet again, I'm calling about my daughter', 'Which one?'.....

All 4 of them (and me) have health problems (nothing serious like a heart condition or liver failure!) that seem to mean 40,000 medical appts - last year we saw physiotherapists, SALT, Paeds. ENT cons., Paeds. cons. for 2 DDs, Paeds. Audiologists for 2 DDs, Paeds. phlebotomist, eczema/asthma nurse, dermatology nurse, dietician, neurologist (me), A&E/ambulances for asthma attacks/bronchiolitis/seizures, admittances for asthma attacks. I'm not even going to go into how many appts I had for DD4's pg.

This year I am wishing for a hospital free year (but as that isn't going to happen as few appts as possible!)

Passmethecrisps Sun 06-Jan-13 09:03:21

Crickey truth! Fingers crossed you and your children get as healthy a year as possible.

I did hear about a couple whose baby had silent reflux. They were both GPs and took there LO to the hospital due to breathing problems caused by the reflux. They took him so often and were not taken seriously to the point where they were branded 'problem parents'

I thank our lucky stars that our GP is on the ball and doesn't mind my googling

TruthSweet Sun 06-Jan-13 13:53:43

Thanks Pass - 1st appt of the New Year is tomorrow though, then one on Tuesday & one on Thursday hmm Start as you mean to go on eh? wink

I got terribly patronised when DD1 had reflux (nearly 7y ago when reflux was a bit unknown) - DD1 could vomit like you were pouring milk out a jug & fed for 1h 45m every 2h at her worst point. I kept being told 'But babies do posset, Mrs Sweet' hmm It wasn't until she started losing weight anyone took me seriously. Prior to that I was considered neurotic.

By that point though DD1 looked like a famine victim - you could see her ribs, she had a bloated belly, little spindly legs/arms, and a bobble head - she still fitted in NB clothes by width if not length (she was approaching 4m at the time & had been 7lb 12oz at birth) and had dropped from 75th%ile to 2nd%ile yet she was between 75th-91st%ile for height!

I am very glad this time round I had a different GP & they took me at my word that she had reflux at 2w & didn't even insist on infant gaviscon before trying domperidone.

YellowWellies Sun 06-Jan-13 14:34:04

Fingers crossed for a nicer year truth and m'eh at least us and our babies make a nice change for the GPs from hoards of pensioners!

Passmethecrisps Sun 06-Jan-13 17:58:50

For sure. Our GP is based on a uni campus - must make a change from STIs and glandular fever

YellowWellies Sun 06-Jan-13 19:10:16

:D haha I bet they love seeing P compared to some spotty little herbert's infected tadger - think of it as doing the GP a favour!

Are you in Scotland pass?

Passmethecrisps Sun 06-Jan-13 20:06:18

Lol at 'Herbert's tadger'

We are YW

YellowWellies Sun 06-Jan-13 20:08:26

Docs up here seem much more au fait with reflux than those south - I wonder why?

Passmethecrisps Sun 06-Jan-13 20:16:34

I had wondered about that actually. I cried when I googled the symptoms and stares reading about people's experiences. Some people were waiting months for any treatment and LOs were developing long-term food aversions. I was so set for a battle - they must have wondered what was wrong with me!

TruthSweet Sun 06-Jan-13 22:08:29

A a good few years ago it was so difficult to get anywhere with finding any information on reflux, let alone a reflux diagnosis! I ended up on US websites trying to track down what the heck was wrong with my DD and why was no one would help me apart to suggest there was something wrong with my milk and to switch to ffing.

ratbagcatbag Mon 06-May-13 04:31:50

Is anyone still around from this thread or has it gone to zombie land? Just onas dealing with reflux and its bloody hard sad

Cupcakemummy85 Tue 07-May-13 08:01:22

Can I join this thread if its still going. My dd has reflux and cmpi and I'm ebf her. I have the formula ready to give her if she would take it but she won't sad everyone keeps saying carry on breastfeeding but I'm basically on water at the moment. Not sure what to do. It's been a tough 3 months.

ratbagcatbag Wed 08-May-13 18:50:26

Hi cupcake - seems not many are around. Ill start anew thread tomorrow (or tonight at 2am ;) ) as I know there are definitely people around.

Sounds like you're having a tough time, were already on formula but still difficult to manage sad

bonzo77 Wed 08-May-13 19:25:06

Hi. Can I join? I'm fairly certain that DS2 5 months has silent reflux. GP and I reached that conclusion as although he rarely vomits (maybe 3-4 times in first month and none since), he bobbed on and off the bottle, screamed and arched his back during feeds. Sometimes between feeds he does a hiccupy burp and brings a little something up, pulls a face and cries but nothing actually comes out his mouth.

Anyway, gaviscon helped, comfort formula helped a bit more, ditto adding in domperidone (I think) and definitely ranitidine. All this from the GP, though he's under a paed occasionally as he was a bit prem and they follow them up.

Oh, epic post... Anyway, 6 days into the ranitidine he's the best he's been, though still a bit fussy when fed when tired, though who wouldn't be?

So I guess weaning is on the horizon. I've been putting it off despite the paed suggesting starting at 17 weeks. Any tips? He's so different to DS1 who though not very interested in feeding just did normal possetting and was happy when he did feed.

KelleStar Wed 08-May-13 21:13:36

Ooo could do with some advice, DS is only 12 days old, but I think he has SR... Possibly. He hurps a lot but not often sick, lots of grunting and gulping noises when led down on back. BF is quick, my let down is forceful and a little overwhelming for him, but he drains the boob in about 10-20 mins, usually takes 1 boob per session, and roughly 3 hours between feeds. He is hard to burp, does lots of farting and loud explosive poos that honk. But he isn't fussing as such. Oh and he had gained 10.5oz in the first 10 days...

MW's told me no, i have first HV appointment tomorrow, scared to mention it as DD ended up over monitored for being bottom centile for weight, though she followed that line for the last 2.5y. Don't want DS to go down same route.

aldeburgh Thu 09-May-13 10:58:18

Can i join too??? Dd2 7 weeks is suffering with silent reflux and i am exhausted and don't know which way is up!!

ratbagcatbag Sat 11-May-13 23:11:06

Hiya kellestar, weight gain is just one thing they should look at for reflux, my dd fed for comfort so no issue with weight gain, didnt stop her screaming after feeds and fighting the bottle. Push for help with drs.

Aldeburgh. Have you been to drs? I've also changed formula to a comfort one which has helped and dr browns bottles, I was finding trapped wind was making it far far worse, the bottles have alliviated most of that so less screaming and discomfort.

aldeburgh Sun 12-May-13 03:52:43

Agree abou t pushing Dr.... Though your best trying to get a younger gp one who has children and/or an interest in them. I know nothing is guaranteed but hedgeyour bets kellestar

Ratbag ...wind def an issue. here. Lactation consultation monday to help assess feeding. Dr prescribed gaviscon first which was a real faff after a breast feed.... Putting it in her bottle sidnt seem to help so we stopped. Now trialling ranitidine but a week in and we think she may be more unsettled.
When you are trying so many things it is hard to know where you are.

How are you all?

ratbagcatbag Sun 12-May-13 07:33:57

I just went to my dr, said you either sort dd or you'll end up treating both of us, I cannot cope on 2hrs sleep per day, I'd seen a paed within four days. I did cry a bit in there and I was quite demanding vocal in wht I wanted. I sort of Weston with "right, gaviscon from a and e not working, I know you can give ranitidine or losec, which will it be?" My drs can't prescribe either which is why I got paed referral in days smile

ratbagcatbag Sun 12-May-13 07:34:22

Weston - went in

JiltedJohnsJulie Tue 14-May-13 12:31:30

Just wondered if any of you lovely MNers could help summer on this thread. Think she is desperate.

JiltedJohnsJulie Tue 14-May-13 12:36:48

Kell not read the whole thread so everyone is welcome to tell me to but out, but just wondered if you'd read this on the milk matters website and if any of it sounds familiar?

Stacks Tue 21-May-13 21:24:19

Can I join in too? I'm fairly sure my DS (5months) has SR. You can see it through the day when he brings stuff up to his throat/mouth before swallowing it back down while grimacing. I was lucky in that he did it in front of a nice dr, so we got a referral to peads and now an appointment on Thursday.
My biggest problem just now is the poor sleep, he's up every 1-2 hours through the night, and feeds every 2-3 hours through the day. He also gets very mucousy has a cough overnight, both of which clear up through the day.

Neverending2012 Wed 29-May-13 22:55:03

5 month Ds has severe silent reflux, on omaprazole domperidone and neocate formula. Was failure to thrive at 10 weeks and hospitalised. Tongue tie, loads of tests, MRI, echo barium swallow, cried for 75 percent of the time for months and never slept , back arching when feeding. We fed him with an NG tube for months - until 3 weeks ago. Exhausted and at the end of my tether.

lem31 Wed 17-Jul-13 06:53:33

My baby just been prescribed infant gaviscon. Di I give it to him every feed anyone know?

Thanks

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