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.

isitme1 i have seen little refluxers website but not easy to navigate on my phone... Lots of scary stories of long battles with reflux which frankly terrified me as even.a year seems insurmountable :(

Dd is having an ok day (not feeding great though)... Has slept for 2 long stretches in the sling. We forgot to take ranutidine so now wonder if it was making her worse so not sure now if we should give evening dose??!!

If in doubt stop it. If its not making her better it might not agree with her x

Agree with isitme, give it up if it makes things worse.

Hi adleburgh

My dd is 8 weeks and can't lie on her back either, I co slept exactly like you, propped on pillows, her on her tummy, I've now switched to letting her tummy sleep, she's my first so was/am terrified of SIDS risk, but it means she sleeps 3-4 hours sometimes longer and I get a couple of solid hours too, I did buy the angelcare monitor though so it beeps if there's an issue.

I switched to comfort milk as pepti made her really sick, some improvement as sickness hardly there now. :)

Big hugs, this is so tough.

Thanks narmada and isitme1 ... Dh and i decided to give a med break and see what happens.
Ratbag ... 8 weeks here today... Dh and i have had the conversation at length about tummy sleep but we are just not brave enough to do it. Dd1 chose her tummy for sleep when she could roll over but we are a way off that with dd2. I read the angelcare was good but i just can't.

I spoke to soon. Ds woke up a few times last night. Refluxing really bad. He just wanted to be sick but as its silent reflux now he just couldn't.

How has she been without the med?
I remember when ds was on thr gaviscon infant sachets they said you could buy a box too but like I said they make a child constipated. I did buy a summer infant wedge. Will link it. It has safety features too so the child cant roll off.

X

I meant to say isitme1 ... 30 wks pregnant... How? .... Dr asked me what we are doing for contraception and i said "we can't put our baby down"

Dd is incredibly windy at the moment and wriggling during sleeps but seems better than on ranitidine... Isn't crying out and waking so quickly. ... We haven't tried to lay her down for a while as she is still gagging and exhibiting her original symptoms... Of course we just have to dig deep and wait til Friday with gp. Hope she will understand our decision to stop ranitidine for a few days til we see her. Eek .

Hope ds sleeps better tonight for you. You must be exhausted :(

Wr bought a wedge but only the 15° on which i am not sure will be enough

www.google.co.uk/search?q=summer+infant+wedge&client=ms-android-samsung&hl=en-GB&source=android-browser-suggest&v=210020005&source=lnms&tbm=isch&sa=X&ei=FHKPUb3eJIiO0AW7yoHACg&ved=0CAgQ_AUoAQ&biw=360&bih=567&sei=lHKPUeXCCcSW0AXkmICIDA#biv=i%7C124%3Bd%7CzwXVi6eole4pyM%3A

Its like that but bigger. When I get the proper details will let you know.

Dh was away for a year or so and I knew I wanted another when he came back lol.
X
Tired? Unborn baby decided to move amd wriggle to the extent that it hurt at around 5am. Then ds woke up and asked his dad to tickle him at 6.30!! Wasnt due up til 7.30. . Dh should know all sleep is valued.

X
The gp wont say anything dont worry about them x

Oh you poor thing! We had the same problem with our DS straight from birth had reflux and silent reflux. Was really bad would sleep lying down only on my chest and on the occasion he did sleep lying down he would wake up chocking. We had him to a&e gp everywhere and where prescribed gaviscon ranitidine emeprozole. We only gave him gaviscon which worked for a while and then the symptoms started to get worse. I didn't want to give him anything stronger so started researching and I to cut all dairy eggs soya and caffine out of my diet as I to am breastfeeding. Turns out it was caffine that was irritanting him don't get me wrong he still has some gasviscon every day maybe one or two doses but he is like a different baby no screaming fits unless hungry sleeps almost perfectly and is 9mo so is weaning and has no food aversion. I strongly recommend the gaviscon it helped for us. If ur chemist won't sell it as mine doesn't ur doctor can prescribe. Give regular warm water every day with it especially if u are giving the full does as it can cause constipation we had to use a glycerin supository a couple of times to get things moving again not very nice but help massively. Ranitidine can take weeks to work as can emeprozole as far as my research has found out it also reduces acid production. Gaviscon is a thickener therefore keeps things down again my paed said we could have use both infant gaviscon and ranitidine.
Try the gaviscon and cut out caffine it saved us from further months of sleepless nights and worry. Also if u can keep going with the breastfeeding it will get easier I promise don't listen to the silly gp who told u to go onto formula breastmilk is easier digested therefore better for reflux sufferers! Good luck with it all big hugs!! Xx

I have cut out caffeine as well as dairy. We tried gavison but it didn't seem to do anything but make her poo less.
So when were you able to lay him down mummyfirsttime?? Without the choking?

Update... Dd had posterior tongue tie snipped yesterday. Having some issues relearning breastfeeding but will see how it goes. Thanks for the advice.

Oh that's great, am so hoping for a result for you :)

oops, I am a namechanger, posted earlier on yr thread.

I am experiencing the same. My DS is now ( months and had reflux since he was 1 month old. Get your GP to give you domperidom and gaviscon. My suggestion is to start with that. It helped my DS s lot until he was 4 months. Bf font formula feed. Oh! Is dhe arching her back a lot though I am sure she has reflux by the sound of your post. I am awakes at all night my DS sleeps on me. If you want to formula feed I have heard about enfamil ar, yes you can buy it off the counter not at all expensive. We have been told to give this now, we bought it but DS doesn't take it. The GP who advised you to formula feeds d not bf is nuts. Sorry to say like this but I faxed the same issue and repenting till day. My DS has been I combined feeding because of some inexperienced docs he ce, suffering.

Ranitidine made him very unsettled Infact he used to vomit straight after that. Get domperidom and gaviscon if that does t work perhaps get omeprazole. My LO is on domperidom and omeprazole. He isn't taking his feeds at the moment I know how I am coping but he is a fighter. Bless him. I am trying to do whatever I can.

Thanks ragusa :)

Bakingtins ... Thanks for your advice. We are ruling things out one step at a time.

Ratbag .... How are you getting on? How is tummy sleep?

Thanks summerlover :)

It can take a while for things to improve after snip. Will you see the LC for follow up?

Going to arrange for follow up next week or week after. Trying to give things time to settle. My nipples are on fire :(

Oh no, that's not good. Have they got worse rather than better ?

Yes. Sadly feeding is worse. Well... More sore... Also her weight has not improved. Stressful times here :(

Ah I am really sorry. What a pain.

I think I read somewhere that sometimes, when a baby's had an undiagnosed tongue tie for some time that supply can suffer because the baby didn't adequately remove milk in the first few weeks.

Can you book to see the LC earlier for a check-up?

Is it possible you have thrush?

I have never had thrush before so wouldn't know what to look for. ??

Saw gp today and decided breast not working for us. Dd only put on 2oz in a week. Sad day but i need her to grow and develop and i clearly can't manage that with my breasts. I am hoping to still do the night feeds while the supply is there and so she will still get some antibodies. It is not ideal but necessary at this juncture.

You need to do what works for you. Don't feel bad. You have tried really hard and most people would have thrown in the towel miles before you did. Mixed feeding fine, whatever suits you is the important thing.

And remember, it's not you that's failed. It's the endless HCPs you've seen who failed to spot a milk transfer issue and a v restricting tongue tie.

Thank you. It means a lot to read that. I did try very hard and of course some people stronger than me would still ge trying but I have another child to think about and my own health and wellbeing. I know it is not the best decision for dd but it is the right one for our family.
I wish I had found the tongue tie sooner but i didn't... And yes i do feel let down by the system but it is time to move forward.

Fingers crossed the formula doesn't make the reflux worse... Gp wants to see how dd goes on regular formula for a week and then if no change then try hydrolysed for 2 weeks. So I am holding off on scoffing some cheese for now as I want to cling on to night feeds for as long as i can.

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.