All new deluxe reflux support thread

[buttonmoon78]

Welcome one and all!

[beckieperk]

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. 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]

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 ) 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]

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]

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]

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 ,
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]

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]

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]

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.

[Boobz]

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]

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]

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]

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]

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]

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.

[buttonmoon78]

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

I'm really 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

[buttonmoon78]

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]

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]

daisylulu that was me with the poo query - thanks!

[daisylulu]

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

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

[buttonmoon78]

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

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]

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]

I think that is brilliant bumandbump (even though I am a little jealous!!). 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.

[Bubandbump]

Well that lasted all of 1 nought gahh

[Bubandbump]

That would be night..not nought..

[Beautifulbabyboy]

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. :-))