silent reflux hell

[climberjoe]

Someone please help. I am a first time mum whos 14week dd struggled from the start not latching not feeding. After 8 weeks of bf gave in and went to omneo comfort. Had good 3 weeks on that then hell began. Screaming after taking 3oz, arching her back, not going on back for changing, playing, generaly a very very grumpy baby. She used to be so smiley. it breaks my heart. Got referral to hosp where they diagnosed silent reflux without doing any tests. Took Gaviscon which stopped the feed screaming immediatley. However inbetween feeds and night times are becoming an absolute nightmare. She used to go nearly 6 hours between feeds no we're lucky if she goes 3. The Gav has made her contsipated. Can't loosen stools with cool boiled water as this hurts her also. She is in agony!! What do I do?? Please can someone help a mum who is sttruggling with a little pnd and a screaming baby

[foxinsocks]

go back to the hospital where they prescribed it and tell them exactly what you've told us here (phone and request an appointment - perhaps in the meantime, if that appointment is a long time into the future, go back to the GP).

There are other medications that may suit her better. They may want to change her formula to something more easily digested.

Just remember, there ARE other options. You're not stuck with it (though I know it feels that way).

I have 2 children, both had horrible reflux and allergies as babies and I have a huge amount of sympathy for you. It is vile and depressing and trying to get doctors to take you seriously is very difficult and tiring but you can do it!

[climberjoe]

Thanks for that. We saw GP yesterday and he suggested to wait for Gav to work properly. Can't bear to see Annabelle in so much pain.

He mentioned ranitidine. I have read so many negative threads it seems that nothing works but time. Am I not just not coping or is this normal?

[foxinsocks]

You sound like you are coping fine!

Honestly, people who have not had reflux babies have no idea just how tough it is to have a baby who screams all the time, doesn't sleep and finds feeding difficult and tortuous. Because let's face it, all babies really do is sleep and eat and if they can't do that without significant pain, then it really impacts on your life (and theirs of course).

It may be worth considering the ranitidine. With one of mine, the Gaviscon did as you have described but she also turned out to have a milk allergy (which is why I mentioned the possibility of changing formulas).

Whatever you do, DO NOT be hard on yourself.

One day, if I ever win the lottery , I'm going to set up a charity that provides support for parents with refluxy babies/children because it makes those first few months so incredibly hard at a time when you are least able to cope with it.

Keep on at the GP/hospital/health visitor.

[Elibean]

You poor love, reflux is so upsetting and stressful to witness/live with.

I only hae five seconds to type - but: dd2 is now 11 months, she was diagnosed with reflux (after two weeks of me getting nowhere with GP, she was hospitalized for somethign else and the ENT bloke happened to be passing and took a look at her) and put on Ranitidine and Domperidone. They didn't cure every twinge, but they definitely definitely helped hugely - so did time, but the meds are invaluable.

Gaviscon did same for dd as for yours - helped with pain and occasional vomitting (she didnt' throw up every feed, just pain) but constipated her. I'd ask for the Ranitidine and Domperidone combo straight away, tbh.

Make sure the head of her cot is raised (we put books under feet, or pillow under mattress top end) and keep her upright after feeds (you're probably doing all that already). Also, our dd has NEVER gone six hours between feeds until recently - maybe around the 9 month mark - so if you can readjust your thinking, hard as it is, to 3 hours not being so very abnormal at 14 weeks you might find it a bit easier to cope with. Though I sympathize totally with the lack of sleep.

Wishing her better soon, xxx

[lovecat]

Just to offer my sympathy and repeat what FIS said - there are quite a few different remedies out there - what worked for dd was Domperidone in conjunction with the Omneo comfort.

Hope things get better for you

[climberjoe]

Its so good to hear from someone else who has been there.

I just can't get past the fact that she was doing ok. I will mention the milk allergy thing. In the meantime will try see doc again today.

I am so exhausted had around three hours sleep last night!!!!

Thanks so much for responding to my thread.

[Elfsmummy]

You poor thing, Your story sound so similar to ours- you're bringing it all back!

I would suggest that you get back in touch with the hospital hat made the original diagnosis and push to be seen again. Did they give you some follow up ? Or an open appointment?

Its fairly normal for a diagnosis to be made without tests provided your clinical picture is convincing so don't worry about that.

Despite what you may have heard about ranitidine, for us it proved to be amazing. M DD had been on Gaviscon for 6 weeks before we started ranitdine and the change was amazing.

Why not try some regular cooled boiled water for the constipation (sorry if it already been suggested - we didn't have that problem luckily)

And just keep posting - many people have been there and can help you through.

We've emerged out of the other side now (DD is 18 moinths)

Good Luck

[RubyShivers]

poor you and your DD - silent reflux is hideous

My DS had it and was put on meds - ranitadine and domperidone. After 5 days on these meds it was like having a different baby - the screaming and writhing stopped and he started sleeping ...

Gaviscon also made him much worse so i think you may be better moving towards the ranitadine option - this med helps to neutralise the acid that is being brought up

i really sympathise and lack of sleep is rubbish too

[climberjoe]

The registrar said it should work so no appointment made for follow up. Just left it up to HV. (Who I have lost confidence in because she suggested Orange juice in CBW for the constipation!! OJ is so acidic)

I have tried just CBW but anything going down her gullet causes pain. The doc gave her lactulose but that isn't working. She won't swallow it. Gentle massage produces rabbit dropping of green cement!!

Thanks so much for all the responses. They have brought me to tears but it is great to hear the support. Never thought that support from people I'd never met could be so important.

The 6hrs between feeds were at night. Elibean, you are probably right that my thinking does have to change but can't quite believe what's going on.

[climberjoe]

Sorry to be so sorrowful.

I'd be interested to hear if your bairns are still on the meds and at what age? The GP keeps saying she'll be fine by 6 months. I know by research that this might nt be the case.

[foxinsocks]

I hope you get an appointment at the GP and they can help. Dd had suppositries at some stage for constipation (because of the gaviscon) but she may well have been older.

Is her poo always green? If so, that's definitely something else to mention to the doc.

Have you got a partner or any other support? It is very hard dealing with screamy ones on your own.

My second child (ds) had practically outgrown it by the time he was around 6-8 months I think but my elder one took far longer (she was over 1 and both can still vomit at the drop of a hat).

But don't worry, it gets easier to manage as they get older as they are upright for so much longer (sitting, walking etc.).

[LiegeAndLief]

Sorry to hear you're having such a hard time. Ds had silent reflux from about two weeks old, we were lucky in a way as he was prem so in SCBU and was diagnosed and treated very quickly. He was on gaviscon, ranitidine and domperidone but was off all drugs by 5 months and was absolutely fine from then on.

Just some suggestions that might help: get a sling (if you don't have one already) to keep dd upright as much as possible; raise head of cot like Elibean said; hold upright for half an hour after each feed (even at 3am!); feed slowly, little and often - it is probably better for her if she is feeding every 3 hours rather than 6.

Definitely go back to gp and ask for more drugs! And ask for help - do you have family or friends who could take her out for a walk in the sling while you slept? I really do feel for you but even though it doesn't seem like it at the time it will get better

[Elibean]

((climberjoe)) refluxy baby is enough to bring all of us to tears and sorrow, I feel sad just hearing about your LO!

Honestly, if your babe is in that much pain even drinking water, I would try other meds asap. No constipation, potential relief. My dd will be on meds until around 18 months simply because her reflux is related to a floppy larynx, and thats when the latter will settle down and harden - hence reflux should settle too. Others vary, often until around a year when they're more upright and mobile and on solids. But your GP is right, its often around six months too - when weaning can help (not always, but often). Solids stay down much better than liquids do.

Gaviscon, for us, was not helpful - I'm sure it can be for others. Interestingly, it was not much use to me when pg either - I took Ranitidine, much more effective and saved me from permanent gullet damage!

I totally understand the shock and getting head around change in 'wrong' direction feed-wise....dd's reflux did'nt kick in till she was 6 weeks old, and it did feel like going backwards even at that age. Like any diagnosis, it takes time to accept and adjust to. If you're not an anti-hug MNer, please take one large ((())) for yourself from me and my now much happier dd: we know what you're facing, and it does get better - fat lot of comfort that is now, of course, but true!

[mcnoodle]

Couldn't ignore your post - your experience is very similar to mine. I agree with all the other posts re different meds, trying to keep dd upright as much as possible etc. I don't know if she has a dummy (my ds had a tongue tie in addition to reflux, so wouldn't take one), but sucking helps to relieve their discomfort so might be worth a try. Ranitidine didn't cure DS, but it definately helped.

What struck me about your post is your mention of PND. I also had PND and am sure that it was exacerbated/caused by the desperate stress, lack of sleep and sheer helplessness that I felt. Please look after yourself. Get family to help, try and meet up with other mums, get out in the fresh air (dd in sling), and if you're still feeling low, talk to HV/GP about it. Don't battle on on your own.

Feel so sad for you - chin up.

[Edgeof]

Hiya
I am also so sorry to read your story.. My 3rd bub Lola is 16 months now, but last year was a NIGHTMARE... from birth she cried a LOT which after 2 perfect bubs was a shock to us... I was breastfeeding, and we just got on with it.. thinking it was colic and she would grow out of it.. but by week 5 she stopped putting on weight, so the docs started listening to my complaints about all the screaming! but it was the failure to thrive they were concerned about..
The GP said she had reflux and prescribed drugs immediately and Gaviscon. We started and couldnt wait for the results, but unfortunately they didnt come. We were admitted to hosptial 3 times over the next 3 mths, with lots of heartache and screaming and lack on sleep in between. More and more reflux drugs, increasing dosage etc...barium x-rays, and all sorts of tests and needles...
FINALLY at the Melbourne childrens Hospital (we were living in Oz) they suggested she may be food intolerant.. and took me off dairy,wheat, soy, fish, and all known allergens.. IMMEDIATELY she was fine... it was amazing... However as you have already stopped breastfeeding, this may not be totally the case with your bub... Lola is now still on a formula called NEOCATE,which we are using here in the UK.. it has made the world of difference to her... She is starting to outgrow her food intolerances, but too much wheat or dairy will still leave her screaming during the night..
Maybe worth chatting to your doctor about trying NeoCate and stopping the milk based formulas.. (remember even goats milk and soy forumalas have the same proteiens that can cause the problems).
Let me know how you go...
good luck
Debra
[email protected] if you want to chat in detail...
www.mykidsbooks.co.uk

[MrsPuddleduck]

You definitely need to push for Ranitidine and Domperidone. All gaviscon does is thicken milk - which is not much use when you have acid reflux.

DS2 has silent acid reflux and is now 18 months old. We are waiting for a referal to a gastrologist - I presume they are going to do a camera test or something.

DS2 moved from Ranitidine to Omeperazole about 6 months ago. This is better than Ranitidine as you only have to give it once a day. I never had any problems with ranitidine - he was a changed boy within 48 hours of taking it.

The best thing I ever did was invest in a set of cot blocks as they really help, also he liked being propped up at all times eg. in a swing or bouncy chair. If we had the time over again we would definitely have invested in a baby sling - we spent so much time carrying him around in an upright position!

Eventually I used to put him to bed on his side (I know you're not supposed to do this) as I could curl him up in a little ball and he obviously found some comfort. We did invest in a sleepsense monitor (he stopped breathing on 5 occassions) which meant we never worried about him rolling over in the night.

DS2 has always been under the supervision of a consultant for his condition - it may be worth asking.

Good luck.

[MrsPuddleduck]

Here is a really good support website if you need it:-

www.livingwithreflux.org

[Elibean]

Yes, my dd slept on her side from every early on, and when nursed in hospital for a week (RSV) at 4 weeks they ended up putting her on her front, as she breathed better that way. I didnt' do that at home, but as soon as she could roll herself it was side or front only - think its more comfortable for her that way, maybe because of the reflux.

One tip with meds - if you have a professional spitter, like dd2, you can put Ranitidine and Domperidone in milk. Amazingly, most babies don't mind that and they can't spit it out

[jackielantern]

DS2 got reflux at 7 weeks old - he just happened to be sat in front of me in his baby swing when I noticed him having a 'fit' and stopped breathing. God knows what would have happened if he had been up in his cot.

[climberjoe]

Thank you all so much. Saw GP and cried all the way through appointment. Think I'm going slightly madder than I was before. Will get Ranitidine tomorrow so here's hoping.

I am already doing most of what is suggested by you friendly lot. Sling, upright, walks both for me and Annabelle etc.

I worry (infact I seem to be constantly worried just now) that her little body/stomach needs to get used to things slowly and If i add yet another thing to the list then it just makes things even harder for her. I realise that this probably seems to be a negative way to think. Does this sound crazy.?.

Mcnoodle- Can't really think about me untill things are a little more settled.

Going to feed just now. Speak later. Wish me luck

[foxinsocks]

well that sounds like brilliant mother's instinct to me! Are they substituting the ranitidine for the gaviscon or do you still have to give both?

just keep that thought in mind when you get to weaning (I know it's a little way off still). I wish I'd had that instinct because we had to scrap weaning and start all over again and do it VERY very slowly - I do think some babies (I'm sure it's not all of them) with reflux just have immature digestive systems so you do have to be careful about what you add in and how much they eat/different foods they get.

But the medicines will help her enormously. I'm glad your GP seems to be listening!

[climberjoe]

Good morning . Well it actually feels like the afternoon. Have already been up for four hours.

I am told the meds should be given together as they do different things. Gav weighs down the milk physically stopping the formula rising up the gullet and Ranitidine is an antacid.

Don't know if its just my imagination but I think she is smiling more this a.m. Maybe I just don't want to give the ranitidine and am looking for any excuse not to. Do you think meds slow down the development of and immature dig system. Does any one know?

Would be great to hear from those in the know.

[Olihan]

climber, I don't know about reflux in babies but I know that ranitidine made a HUGE difference to me personally when I was suffering from an adult form of reflux, far more than just gaviscon did. I think you will be very surprised at the changes if you start it, she honestly will be in so much less pain.

[LiegeAndLief]

climber, I can appreciate your concerns about giving your dd another thing to cope with, but I think it would be worth trying if she is in so much pain. Ds was on ranitidine and domperidone before his due date (he was prem) and has never had any problems with digestion. We weaned him at 5 months (recommened by doc because of prematurity), shortly after stopping his reflux drugs, with no problems at all. He's now 14 months and loves his food! Hope she is continuing to be smiley and you both have a better day today.

[foxinsocks]

naah, the meds won't slow it down. She needs them.

Was once told that they hardly absorb any of it - it just works on the part of the tummy that needs help and that's it.

Honestly, I too have had reflux and it is VILE without the proper medicines.