silent reflux... help!

[aldeburgh]

Dd2 has been diagnosed with silent reflux at 5 weeks although has exhibited pretty much since home from hospital.
Cannot be laid down (even with Moses raised on books) even in the deepest sleep she wakes within minutes so we have been doing shifts holding her at night so we both get some sleep.
She has not gained weight well and has dropped centiles so advised to give a bottle an evening so i could sleep and hopefully help my supply (which is in doubt) and that was working well for a week and a half.
Dr prescribed ranitidine and we started that Saturday but she has been even more unsettled since taking it. I called gp but our fab one is away.... Got told to bring her in just to make sure we are not overlooking an infection... Gp i saw started to question the reflux diagnosis despite me trying to say i wasn't there for that reason just wanted to check ok to carry on with ranitidine and that she was ok. Gp said she was always sceptical of reflex diagnoses and suspected dd was hungry and that since i said i was not liking breastfeeding (i am exhausted and questioning my supply and stressed by my baby being so unwell i am hardly likely to feel warm about it) she said to stop bf and give formula.
I asked about special formula (regular gp had suggested that would be next avenue of investigation for cmpi) and she looked blank and said "i didn't even know you could get special formula" "!!!!!!!! Needless to say i left not knowing which way is up.
Is my baby hungry and can that manifest reflux symptoms???!
Could just one regular cows milk formula a day build up and cause her to be so so unsettled?
Is the ranitidine likely to upset her even hours after last dose? Am conscious that the worsening reflux could have happened anyway and its just the medicine hasn't kicked in yet?!?!
How quickly would dd settle if we switched her nightly bottle to hydrolysed formula? I have not had dairy for 3 weeks....
Help.

Aw, if you're supplementing with normal formula, scoff away at the cheese :)

I made the same decision re DC2 for what it's worth.

Did formula make your dd2 reflux worse? I have read it can....so a bit worried about that.
We are doing regular formula this week then trial next week if no change.
It could all go south but dd seems a bit more settled since she is getting milk in her tummy. Who knows what will happen ?

Oh and "for what it:s worth".... A lot believe me :)

Well, I have to be honest and say yes, in our case it did make things worse because DS had a terrible milk protein intolerance along with severe reflux - he didn't have much right with him, poor lad (fine now though!). Carrying on BF wasn't an option, though, as I was literally falling apart at the seams and going mad with exhaustion and frustration.

In your massive favour, your doc seems switched on in that s/he is talking about the possibility of specialist formula already. If you don't get on with the normal stuff, then you have a next-go-to stage. For all the talk of allergies to milk, there is every chance that your baby will be fine on normal cow's milk formula. And if she's not, well, you can cross that bridge when you come to it.

One thing to beware of with formula is babies' tendancy to suck down gallons of the stuff with scant regard to their actual hunger levels/ capacity to cope with large volume feeds. Maybe google 'paced bottle feeding' to see if you can avoid this issue.

Another thing to bear in mind is that if you start giving formula, it doesn't have to be forever or completely take over. There is often a way back, but it takes dedication and lots of skilled support, especially if your milk supply has been fragile previously. It's hard work, but the idea that if you stop, that's it forever, is not totally accurate.

Feeding a refluxy, tongue-tied, unsettled baby is not easy at all - especially if it's your second child. The BIG advantage with bottles is that other people can share the burden.....

Wouldn't it be great if formula sorted her out ?.... gosh, I was such an ardent BFer with DD1, I would never have rightly believed I would say such a thing . Refluxy, tongue-tied babies do have a knack of rewriting the rule book, though.....

i meant dc2 but auto correct changed it to dd2. sorry about that.
I am with you on the exhaustion. I think that is why the decision to formula feed was easier than i thought it would be... because I am physically broken and dd1 needs me and, as you rightly say, now I can share the load.
Did you see a negative reaction to the regular formula quite quick? she has been a bit mucousy today but both dh and dd1 have stinking colds so i wonder if she had her first ever cold. dh thinks we would see an obvious negative reaction if she was cmpi but i don't know what to think anymore.

dd2 has suddenly had regular bowel movements for the first time in her life and does seem a bit more content. we still can't lie her down on her wedge yet....

would be amazing if the tongue tie division and a full belly would help her sleep somewhere other than the sling or on our chests but i am an eternal pessimist realist... and have taken the view that i will still be holding her for sleep next year.
how did your ds respond to the regular formula. i know babies are all different but it would be interesting to know what to watch for.

has her first ever cold

I can't remember exactly but I think it was pretty immediate. He started to do really wierd poos -they were massively clumpy and had big lumps of undigested material in them. He had what I now know are called dennie-morgan folds around his eyes and most prominently he just didn't sleep, even when being held: he kind of squirmed endlessly in his sleep. Really hard to describe. And the vomiting. That got a lot worse on the formula.

I would say if she is not showing any of those signs (or other allergic-type symptoms) inside a week then things are looking good. Late intolerance reactions can happen though....

The not-sleeping-anywhere-but-on-you thing could just be normal baby behaviour. Really tricky, but could just be run-of-the-mill new baby-ness.

I severely doubt you'll be hodlding her to sleep for a year . DS was sleeping through by 4 months (night-time hours, not evenings, they were a different story) and I breed notoriously poor sleepers.

Hope things get easier for you soon. Don't feel too guilty about your DC1, honestly, this is par for the course when you have DC2, even if your second is easy and undemanding. Or so I understand from all my friends.

crumbs!! were the dennie Morgan folds really prominent? i mean, i would know if they were present?

wow... 4 months... that is brilliant. did you have a spell of having to hold to sleep? give me some hope.

dd has had a pretty good day for her... 3 sling sleeps... 2 for 2 hours!!!! I do wonder if she has just become reliant on the closeness of us...

dd has been really snuffly and gagging on mucous today. Really don't know if it is just a cold and really don't want to read too much into the cmpi link.

my supply was/is very low as I have hardly suffered dropping feeds :(

Well, I never noticed the dennie-morgan folds at the time, but they are clearly visible looking back at photos taken then.

We did have a spell of having to hold DS to sleep, yes. I hope things are getting easier for you now. How's she doing on the formula? Is it a cold in the end do you think?

If you are only dropping feeds rather than cutting out BF alltogether, the lack of engorgement may just be an indication that your body reacts quickly to changing demands for milk. Or it may like you say be an indication of low milk supply, in which case, that rather proves what you thought to be the case all along. If it is that, I am sure it'll have been because of the TT.

are they just a crease under each eye? or more pronounced than that?

sorry for all the questions... no one i know in rl has been through reflux so no experience to draw from.

she seems more content since the switch, which is hard for me as i realise how much i made her suffer in my pursuit to breastfeed her. but of course it is a positive. not sure about the cold... she has been tiring quicker than usual and is coughing and sneezing plenty with watery eyes but no temperature and no real snot to speak of.

gp ringing Friday to discuss formula and review progress.

put her in moses last night and she squirmed for 35 mins before waking herself up crying... so back to being held. going down at all is progress... but surely all the squirming suggests some level of discomfort??

milk all dried up! i was going to drop feeds at a time but quickly became evident that the tank was running on low ... an hour feed followed by hollering for more and taking 3oz speaks volumes. Hey ho... got to look forward, not back. It is hard looking at her with a bottle but she is more content than on the breast.

My LC thinks i should complain about the lack of support we received when asking about TT. No sure what good it would do?

The dennie-morgan folds look a bit puffy IIRC. Google images has some pics: sorry, can't link on my phone [technology duffer].

If she seems more content since the switch, that's great. You didn't make her suffer in your pursuit to breastfeed her . She will have got loads of really important stuff from you - antibodies, closeness, warmth, and all the other things associated with BF.

I know what you mean about looking at her with a bottle. It's so disappointing when you've set your heart on BF. However, you really did try your hardest and you were failed by the professionals. I felt exactly the same with DS, but looking back now I can laugh a bit about it. He is 2.5 and very happy, healthy, and attached to me. Your DD will be too. It's a trite adage, but true, that there is far more to parenting than the way you feed your baby. Our mothers wouldn't have given moving to the bottle a second thought. Not very many babies are recieving any breastmilk at all by 6 weeks of age in this country. You're in good company even if you feel disappointed in yourself. Really, you shouldn't and I'm sure when you look back you will see that it was not your fault and that you were only trying to do your best for your baby

Actually, I think complaining could do some good. Many midwives and even BF counsellors, are not knowledgeable about tongue tie and cannot identify it. Even if they can, some still regurgitate the predominant view of the 1980s, which was that it 'didn't really affect feeding'. This is simply not true and borne out of the fact that most people in the 1980s were bottlefeeding and bottlefeeding is sometimes easier with a TT. Even my lovely GP told me that TT was not an issue and had been demonstrated not to cause problems with feeding, despite NICE guidance to the contrary .

Is your hospital part of the Unicef Baby Friendly initiative? If so, I would definitely complain about this, as they are supposed to be switched on about such things.

Re the squirming, have you tried a really firm swaddle?? Those miracle-blanket type things are really good and replicate the feeling of being all tucked up in the womb.

One last thought, if you are speaking to the GP on Friday, you could see whether he or she would be willing to prescribe a couple of (large) cans of hydrolysed formula, which you could redeem if things got worse?

If still not right in a couple of weeks, I would then go back to GP and ask for further advice.

Thank you Ragusa ... you have been an enormous help for me over the past week or so. means a great deal. loving mumsnet!! I am buoyed by the fact your ds is 2.5 and over it all. seems a lifetime away for me at the moment but it does spur me on.

annoying mil comments about finally going onto formula "she's better now so you ought to put her down before she gets too reliant on you". of course we know that it is going to be hard but until the reflux is managed we are unable to put her down for any length of time. I Guess I missed the memo explaining how formula cures reflux

bit of an unsettled sleep day here even in the sling. hard to know what is going on.

we have a grow swaddle that we could try.

thanks for the suggestion on gp will certainly ask the question.

funnily enough my gp is great but she too has the exact same response to tongue tie as yours. I was quite shocked when I mentioned how many times it had been missed and she said she didn't buy into it!!

hospital os supposedly baby friendly so when this is all over I shall write a letter.

thanks again, you are a star

Ah, thanks :)

The most palatable hydrolysate is Aptamil Pepti - neocate smells and tastes like potato scrapings. Nutramigen not much better. Acceptance can be a problem with the latter two - DS wouldn't touch them despite weeks of trying.

For your complaint, if you make one...

NICE guidance It's not unequivocal, but certainly suggests that there is evidence that TT does cause problems in some cases.

Best of luck for the weekend. Let us know how it's going.

Is it normal to be emotionally up and down with a reflux baby? when dh is home i seem to be much better and feel like it isn't insurmountable but now he is back at work and i have time to think about it all... that's when the despair sets in. i feel low today and like it is never going to go away.
dd2 put on a lb in one week... which made dh certain that it is not cmpi... i wanted to rule it out with hydrolysate but gp wants to give another week on regular.... feel like i have convinced myself that it is cmpi... dh thinks her congestion is a cold and it is a rubbish coincidence...
i just don't know what to think anymore.

Help!!! We have all the symptoms of silent reflux. My little girl is now nearly 17weeks & is averaging 17oz a day. I have been to the GP virtually every week since she was born and no one is listening to me. Last week i was dismissed with anxiety issues. The GP said that he strongly recommended that I make an appointment for myself and he thought that it was my anxiety issues although after some complaint he did finally prescribe some renitidine not that I think it has helped!! As you can imagine this made me feel like I was going round the twist, so I called my mum who came up for the day and I was relieved that my little girl was exactly the same for her. I started to keep a chart of her feeds. They are very erratic and she will rarely take much more than 3oz every 4 hours sometimes she will go for 8+ hours without a feed. Just after she was born she showed signs of having a protein allergy so we are on pregistimil which initially did help and she went up the percentile line.
She shows all the signs of being hungry but will not take the bottle she shakes her head about and screams, it can take me anything up to 2hours to feed her. Afterwards she will scream and will only settle with me if she is upright. She has dropped down on the percentile chart but has maintained her weight growth for a few weeks, but for how much longer we will see. She was just like this when we were on regular formula.
I went back to the doctors again today. We went through the whole bunch of issues, I suggested some different drugs or perhaps a referral to a pediatrician. I even tried to feed her whilst I was there. His response was to tell me that I needed to get the Health Visitors to come round and see how we feed her at home!!!! I rang the Health Visitors who because it is half term and they are a bit thin on the ground probably wont be able to come out until next week!!!!
So yet again I have another GP's appointment booked for Friday morning.
I feel lost in the system. I feel like I am banging my head on a brick wall. I know that there is something wrong with her and NOBODY is listening. I am working on silent reflux but it could be anything. When I mention this to the GP I get the response that it can't be because she is not sick.

Aldeburgh :( Ohhhhhhh, yes! Feeling low and blue is totally normal even when your baby doesn't have reflux or allergies. When he or she does..... well.

I definitely experienced a very difficult time with DS, could not cope at all with him and DD as well, who was under 3 at the time. DD1 ended up in nursery 4 whole days per week (up from two previously) as I just couldn't cope.

I really feel for you. Having a reflux baby is a totally different kettle of fish to having a 'normal' colicky baby. Unless you've had one, it's not possible to have any idea how it really is, IME. Are you getting any time to yourself at all? It's so difficult, being pulled in all directions - needy, supplanted DC1, wailing, unsettled, non-sleeping DC2....

For me I am sure part of the difficulty was because I was confident it would be so much easier the second time around. That's what everyone kept telling me, that's what everyone else expected. It wasn't: Rather than beatifically breastfeeding my baby (come on, I'd done it for two years already) I was instead to be found mopping up sick and chasing a bottle-averse baby around for hours and hours a day on no sleep while also trying to look after DD1 who wasn't (and still isn't) undemanding any sense of the word. Big shock to the system. NO doubt you're having similar.

Are you getting any time at all for yourself? Still doing the night feeds or have you gone over to FF completely now? If you've stopped could your DP maybe do a night for you, and you retire to your DC1's room? spare room with some wax earplugs and a blindfold (can you tell how we survived our refluxy baby!?

Also, if you have given up the BF, then your hormones will be undergoing a major, major change and that might make you feel up and down. Don't underestimate the significance of this would be my advice :)

Congestion aside, how has she been this week? More screamy/ wriggly/ vomity, or less? More sleepy, or less? The weight gain is really good although I don't think it rules out CMPI.

It's good that your GP is still prepared to try the hydrolysed next week if things are not improving.

And about your DC1 - they are tough, you know, and can stand a fair amount of benign neglect in the wake of the new sibling. It's normal to feel sad and confused about your relationship with DC1 - your little dyad's no more: now you are three (and four when your DH is at home).

Mummyandmimi, certainly sounds like something is going on, and it's so, so infuriating to have that feeling like you're banging your head against a brick wall. Generally, mums do know best and it is so easy for docs to write off concerns as 'anxious mum'. Is there anyone else at the surgery you could see? Re-register somewhere with younger GPs who might have more of a clue?

ragusa .... nail and head springs to mind... feels nice to know someone understands... and to be honest i don't even think dd has it too severely... she just can't sleep on her back for more than half an hour and squirms the entire time. she feeds happily since switching to the bottle full time... and her feeding issues before were now more likely to have been down to the tongue tie than reflux ??!! cries much less than in the beginning... could the ranitidine be helping or just that we are propping her so managing it better???

my milk pretty much dried up over night... i was hoping to cling on for longer but sadly not to be. just shows how little she must have been taking.

I thought it would be idyllic this time round and with dd1 starting school in Sept ... she is a late july babe so very young to be starting and i imagined these last few months was supposed to be a wonderful final stretch together doing fun things together. :(

the benign neglect comment made me chuckle... everything you said is how i feel. thank you.

i guess i am finding it hard to see any light at the end of the tunnel let alone envisage a time when we will not be utterly consumed by reflux :(

can't take time for me at the moment as i am just about keeping on top of basics in the house. i am sure i will find time for a haircut soon.

dd is not much better this week... not worse though... smiling and cooing which makes things easier ib some ways. if that makes sense. i guess since it is just the sleeping that is affected then it might not be cmpi?? although her poos are enormous and it makes me wonder. i guess i just want to rule it out.

thank you so much for your support. appreciated more than you know xx

myummyandmimi... second all that ragusa said. younger gp definitely. stick to your guns. push for a referral if they won't listen... you have a right to be referred on.

Thank you so much for all your advice. I have got another appointment this afternoon, I am going to go mob handed with my Mum who has witnessed the stress we are going through at the moment. The Health visitors have been brilliant and told me to go back to the GP and request stronger drugs. I am wondering having been on little refluxers if we have a serious CPI and maybe we need a different milk. Its just so stressful and distressing for all concerned.

aldeburgh my older daughter also starts school in September and likewise I was looking forward to this time with both girls. I am sure we will get there in the end.

is it possible to jinx oneself... grumpy lady in her bouncer chair... she is a bit more sick this week thinking about it bit she is finally getting milk to sick up not just acid.... i suppose i should stop moaning and consider how lucky we are compared to lots x

DD diagnosed with Silent Reflux @ 7 weeks old, which, I add had been a nightmare. HV advised not to change formula but we did, to an Anti-Reflux one. We have been on it for 14 weeks now and we have a baby who sleeps through the night, very few screaming episodes and one who will sit in her bouncy chair no problem. Different things work for different babies, we were lucky a new formula worked for us :)

mummyandmimi ... the starting school in Sept guilt hits me hard. but you are right we will get there. how did yo get on with the gp? hope some help for you. let us know how you got on.

kh1977... that is great about the switch of formula. were you on meds before?

more questions .... have been referred to dietician and paed with dd2... and prescribed pepti ... dd has vomited seemingly more on thepepti as it is so thin and now i am worried it is not cmpi and gp says now we have switched formula we can't stop... is that right? and why? we pushed for the trial but didn't realise it was set in stone or we would have just pushed for the referral first. confused now.
dd's congestion is easing since change and eyes seem less puffy but still refluxing so not sure... her poo has been a bit firmer in general but still huge amounts.
i wanted a referral to get some answers but now i am just worried they will chastise me for pushing for cmpi when all i have is a refluxy baby who needs to be held. i guess the tiredness is just making everything seem out of killer and i am predisposed to the odd stresshead worrying.
any advice on how to deal with paeds? never done it before and slightly terrified. thanks in advance.

*kilter