Reflux in infants - advice Please

[Norfolkvillas]

Hi astrid83, sounds similar to my daughter who I ended up self-diagnosing with cows milk protein intolerance. Intolerances build up, so like you we tried things which appeared to work for a few weeks and then deteriorated again. After a bunch of paediatrician / dietician / Gp appts, the consensus was that she had reflux triggered by the cmpi. Everything I read at the time about reflux didn't quite chime with my gut feel, but as I said it was a consensus....

For us, what worked was switching to nutramigen, then nutramigen aa, which im hoping to stop using imminently (daughter now 11mths), but you could try cutting out all dairy and soy from your diet if you're exclusively bfing. Sorry if that's already been recommended - haven't bothered to read back over the whole thread, sorry!

[theratprincess]

You have my sympathy. Another ex-refluxer here. Daughter is now 10 months old. She was incredibly difficult to feed.

She was/is BF (totally refused a bottle). I cut out dairy, soya and eggs from my diet. She is still on ranitidine. we tried Omeprazole but GP wouldn't prescribe oral suspension (too expensive), so gave up. Her reflux improved very slowly from about 6 months onwards. Real improvement around 7 or 8 months. The only thing that really worked was time! We also did a bit of osteopathy with Lizzy Lomax which did seem to bring some improvement her feeding, by releasing stiffness in her jaw (NB I went into the sessions as a sceptic as there is little evidence that it works)

Other things you could ask the consultant about are reducing sugars test in stool sample (can help diagnose CMP allergies/intolerance) and when baby is a bit older IG testing (blood test looking at immune response to indicate allergies)

GPs at DMC are totally useless on this. Consultant at Kings (Babu) not particularly great communicator either. The thing is, they don't have all the answers and a lot of it is guess work based on your description and assessment of the symptoms.

My take on it all is that there are so many complex factors at work that it is hard to work out what, if anything, is making any difference. I just kept muddling through, until without realising it, there was some improvement. It was incredibly stressful though - I ended up with awful anxiety attacks and having CBT at Kings.

Feel free to PM me.

[Scribble]

Another ex-refuxer here... agree with previous poster that there seem to be so many complex things at work, it's really hard it figure out what actually helps. For us too things started improving around 6 months.

astrid83 - same as you, feeding at night was much, much calmer most of the time - could never figure out why that was or how it tied in with everything else...

As I say, never quite figured out what worked or why - had a sense that Ranitidine seemed to, maybe, so stayed on that, but really it did just seem to be time and growth. But just wanted to reassure (as I don't have much useful info) that things will improve - you'd have no idea looking at mine now how things were back then!

[astrid83]

Thanks for all your input and support!

Did anyone of you find it harder to feed whilst out? My son seems so easily distracted and at most snacks on like 20 ml of milk if we are out.

I feed him a combination of expressed breastmilk and formula. I express three times per day which is exhausting, but want to continue for a little bit longer if aptamil is making his reflux worse (possible cow milk intolerance?). I will try to eliminate dairy out of diet...but I find it hard to be picky about food when U hardly get a minute to sit down and eat!

[Scribble]

Oh yes, I tried that dairy elimination idea...but apparently you have to do it for weeks until it has any effect (?) and as you say, it's so hard to get any food in that it just added too much complication for me to pursue... I just concentrated on gobbling whatever calories possible whenever possible...

And yes, had the distraction when out too - the issue there, I found was with me talking / moving (whether in my home or elsewhere). I remember everyone else seeming to be able to sit and chat away while feeding, while I had to go into a silent huddle and stay still...

[theratprincess]

My daughter's non feeding drove me around the twist. I used to actively avoid feeding her out and about, as much as I could (have a 3 year old as well). The non feeding and fussing was harder to deal with when out. With hindsight I would not do this again - I think it only made my anxiety worse.

As regards going dairy/soy free I know what you mean - it's hard to find the head space and energy. Fortunately, my sis had just gone through the same thing, so I copied her ideas and menu plans. Mumsnet allergy pages also have some good ideas eg I discovered a dairy free pesto, which at the time made me overjoyed!

I just re read my earlier post and it sounds so negative. Just hang in there. Things will get better. A positive source of support for me was also my health visitor - Rachel Shauney at Townley Road. She has a bit of reflux knowledge and came up with some really good suggestions when I was really at rock bottom.

[susyp]

hi just to say really that as someone that went through the whole reflux/colic thing i really feel for you - but it does get better.

in my experience giving up dairy etc didn't help. sometimes when they are little they have a mire of intolerances that they grow out of and you can't possinly work out each one if you are breastfeeding. my daughter had loads but now at 5 is dairy allergic and soya/beef intolerant - which is manageable. best to get onto neocate asap perhaps.

i still get a bit upset when i get emails from friends saying how easy they are finding the first few months - my boss did this recently and i felt really miserable all day. it's so hard when every hour is a struggle but there are plenty of us out there who experienced this and you are not alone in this .

susypx

[shaunag]

Hi Astrid

It's tough going when lo struggles to feed-I found it incredibly stressful and exhausting-you aren't alone if you are finding it very tough. I found myself doing a lot of carrying- if you are too maybe try to get to the sling library to get a decent one that works and is comfortable so you don't destroy your back as well as being shattered. Maybe try yo find some mums going through the same thing to hang out with to help give you some support-I found it pretty depressing hearing sweetness and light from mums that were seemingly breezing through with angelic feeders/sleepers (now I'm not sure anyone really breezes it but people feel pressured not to admit finding it hard). There are definitely plenty of struggling reflux mums out there so it might help to get tips and just feel like you aren't alone battling through. The giving up dairy thing is a struggle initially. I ended up doing this for 18 months-like anything else you get used to it. My daughters allergy was so bad I had no choice. Some foods are easy to omit dairy from like making fajitas (leave out cheese), bolognese (leave out cheese), fresh pasta, stews, home made curries etc. however, if you do give up bfing then try neocate or nutramigen early on if advised to do so - after 6 months their taste buds realise how revolting these milks are and they might not accept them (this happened to me hence bfing for do long). It's true it takes about 2 weeks for all dairy to come out of your system but I noticed improvements pretty immediately when I went off dairy, so might be worth a go. Waitrose to the best range of dairy free foods and if having a go oat milk, pure sunflower or olive oil spreads and oatly cream may become staples in your diet. The consultant will no doubt advise you re whether or not to try dairy free so don't put yourself under too much pressure. It is a slog but the vast majority of babies grow out of reflux by 8 months (I think I recall being told it peaks at about 3-4 months). Try to rest up as much as you can and take any offers of help. Good luck and take care. X

[Bluedark]

Dear forumites

I am bumping this post to ask your experiences about medication and Breastfeeding for my 6 week old daughter, who has reflux (no vomiting). First of all this is a relatively old post, I hope all of you are out of the woods now.

I was delighted to find this post which is full of lots of valuable advice and support. Knowing that I am not alone with a screaming unhappy baby (therefore questioning myself constantly with 'surely I am doing something wrong and I can't even console my baby') is very reassuring.

Very briefly our story is - after 3 weeks of honeymoon with feeding and sleeping, my daughter started having long spells of crying day or night (or both). Typically we put it down to colic as it was the right time. After a particularly bad day and night we went to see the GP to rule out any other problems. Our GP told that probably it is colic due to digestive sensitivities following a potential lactose overload after the three week growth spurt. She asked me to go on a very plain diet (no dairy or highly allergen food)to see if it makes difference. It kind of did but only a little. Then came the extreme fussiness when feeding. Some feeds were fine but more often than not she wanted to feed but screamed and pulled off from the breast with an arching back when trying to feed. I have spent hours to feed her, with her crying constantly with pain and finally passing out when she is just about full. Anyway to cut it short - last Friday, we were at the Kings to do a blood test for prolonged jaundice. A paediatrician saw us for the tests but my daughter was so unsettled (she wanted to feed but just did not latch with throwing herself back) so the doctor examined her and decided that she probably have reflux (in a way we were blessed to be there during her fussy time as we skipped the GP referral stage). Reading this post since then made me realise there were signs of reflux but as she is not vomiting probably I did not think about it that much.

Here comes my questions. We have been prescribed omeprazole in liquid form by the kings paediatrician. Unfortunately Kings pharmacy did not have it so we have been asked to go to our GP to re-write the prescription to be collected from another pharmacy. GP when prescribing converted it into Losec MUPS (tablets) to be dissolved in water and administered with a syringe. I will check this with GP as soon as I can but I thought I will check with experienced parents here. When I dissolve the tablet it does not dissolve fully, there are sediments in it and they don't transfer to the syringe. Therefore I am worried that we are not getting the full effect of the drug. Anyone had a similar issue? Am I missing a trick here? I think I will speak to the GP to have the original liquid prescription next time though.

Secondly for those mums who breastfed their reflux babies, I would really appreciate if you can share (on the forum or via PM)your advice on establishing a feeding routine and introducing an occasional (regular) bottle to ease of the pressure on me. Due to our hours of struggle with feeding I feel we are all over the place and it is difficult off me to keep track of how much she had and when... Did anyone come across a Breastfeeding support person who has experience and knowledge with reflux babies?

Thanks in advance for your suggestions

[midivydale]

Hi Bluedark,

I am sorry to hear how you and your baby is suffering but great news she is on omeprazole. As she is so very young the surgery should give you the liquid without fuss.

You are quite right that the mups dont resolve completely and get stuck in the syringe. I used to mix it with a couple of drops of water to get a paste like consistency and then mix this with fruit puree. I started this very early at about 12 weeks as ds never liked the taste of the liquid. However, as your baby is so young you may be a couple of months off yet. So in the meantime try and find a syringe with larger opening I think I discovered that the one that comes with the neurofin is the biggest.

Another forumite - strawbs- told me that she made a paste and placed it in the side of the baby mouth in the cheek and then gave the bottle straight after (the milk frm the bottle would make muls disolve further):

Again baby strawbs was probably abit older at that stage.

GP's may be reluctant to prescribe liquid as it is dear, I think I vented

my frustration on this further up the thread. However, stand your ground they should not refuse you.

Finally, sending a cyberhug - it is so damn hard -

But you have done brilliantly getting omeprazole so early. It will work.

X

[astrid83]

Omeprazole saved our sanity and made my son in to a completely different baby! We did not get it until he was 4 months though so it's great that you got it so early on.

We dissolve it with water and mix it with fruit puree, but as midivydale said it might be too early to do at this stage.

My little boy was also incredibly hard to feed and would for a long time only feed when he was sleepy or in light sleep. The problem did not start until he was four weeks old, so very similar to you we had a good start with a baby who fed very well and slept well.

I hope you find a way that works for you.

[hellosailor]

Yes you're lucky to have got omeprazole so quickly rather than having to jump through the hoops of trying the (often not effective) options of Gaviscon and then ranatadine first. It is likely to work so hang in there! My daughter had reflux and the waiting list was so long to get seen at Kings that she outgrew it at about 6 months which was the same time she was seen! Our son started omeprazole at about 8 weeks old and it took a week to see improvement but then it worked brilliantly.

It is much more expensive in liquid form than tablet form but we pressed for it as our baby was so little and our GP prescribed the liquid.

Like you describe with your daughter, his reflux only came on at 3 weeks and he was crying and writhing in pain constantly, plus bringing up milk constantly, and the omeprazole changed everything. We also got a cot wedge like this and made sure he was sitting up for at least 30 mins after a feed in his bouncy chair on its most vertical setting. Hang in there, it will get better xx

http://www.babyreflux.co.uk/babyreflux-lift-safely-reflux-wedge-60cm-cot-291

[Scribble]

Hi Bluedark - on your question about breastfeeding routines - I would actually advise possibly not necessarily to worry too much about this at the current stage. As long as she is putting on weight, that means she is getting enough - trying to control and regulate things more at this point may just add stress to the whole situation (or it did for me when I tried). Just get it in when you can! The other thing I wanted to say is: it will get better! I remember it all feeling like a black hole at 6 weeks, and feeding being horrible for both of us...but things do improve and you do survive. Good luck...

[Bluedark]

Thank you all for your responses and support, really really appreciate it...I feel much better now knowing that we are not alone and it will get better. It is heartbreaking to see her in pain.

I know we are incredibly lucky to be on omeprazole this quickly, just pure luck that the consultant at Kings took notice of her fussiness rather than just taking bloods for jaundice (that is why we were there in the first place). And dare I say I think they are working. Together with adopting other advice regarding feeding and keeping her upright as much as we can) there certainly is less crying. I still have millions of questions, hope we will be out of the woods by age of 1. I will be on the forum again soon, I am sure.

I will still ask for the infant liquid from the GP; let's see if they agree.

[midivydale]

Hi Bluedark,

Glad to hear that you are feeling better. Please just shout via the forum or PM's if you need us. Reflux is horrible to live with and there are many of us that have been just where you are. If you want to meet or chat on the phone etc PM me and I will send you my number.

Even though things are improving it might be worth to keep an eye out for any allergies to cows milk protein. The reaction in the baby can mirror that of reflux (crying, tensing up in pain, fussy eaters etc). There is reserach to suggest (our consultant at Kings was quick to point this out) that alot of reflux babies also struggle with CMP allergies or intolerances.

Hang in there - and shout if you need support/a rant/shoulder to cry on/coffee/wine/whatever.

x

[Ellie78]

We found the liquid wasn't actually as effective as the tablets.

This is what we do:

You need small cup with narrow base - we use those first weaning pots- so the tablet can dissolve easily in small amount of water.

Neurofen/Calpol syringe

Syringe 5ml water into cup. Put tablet in and rest cup against something soo the tablet is fully submerged.

Leave for 10 mins

Swirl gently - more will dissolve. Do this a couple of times, leaving if necessary.

Syringe up and release back gently. This process helps too.

Not as complicated as it seems and don't be too worried if there are a bit if dregs.

Just don't crush the tablet as it stops the meds working.

We found using too much water seems to reduce the effectiveness too

And we could never use fruit pur?e as he has a problem with citric acid. Yes- it tastes horrible- they get much more sensitive to that later though.

[Bluedark]

A very belated thank you all - especially to midivydale for your support and offer for a chat/advice/moan. On recommendation from our GP I am on non dairy diet for two weeks and we are going to 'challenge' it to see if introduction of dairy will make things worse. If so she will have tests for potential intolerance and we will take it from there. and ellie78 thanks for the tips on administering the drug. We are still on tablets and they are dissolving much better with your method.

I have another question. When we first started using drugs things were a bit more manageable. We have regressed significantly in the last few days though. Feeding is such a challenge that I really do not know what to do. I try to keep things calm and mostly try to feed her when she is still sleepy after a sleep. However even then she just latches on the breast for 30 seconds and throws herself backwards crying. I try to calm her down, she in the meantime continually roots for the breast but starts crying whenever I try to feed her. We struggle for hours at a time like this until she finally has enough (bit by bit) to sleep a bit. Then we start again. Interestingly she feeds ok during night (no significant fuss, feeds and sleeps generally).

Can I please ask for advice on how to tackle the feeding? Is it normal to be this fussy at the breast despite the drugs to manage reflux? I do try different positions, doesn't make any difference. We tried giving her a bottle (expressed milk if there is some or formula) and that seems slightly better although she still fights with the bottle. I don't want to give up Breastfeeding but we are both not enjoying it at the moment.

Thanks all

[shaunag]

Hi Bluedark

Has the dose you are giving your baby been upped at all? It's supposed to correspond with babies weight so worth checking the dose yourself and speaking to your gp if not. Apparently reflux peaks at 4 months so it may be the reason baby is slightly worse. You are better off with tablets to the liquid as the liquid is hard to get hold of and I thought it tasted much worse than tablets dissolved in water. If you express you could try adding carobel to the bottle-it makes the milk heavier and so harder for it to reflux.

I hope it is as simple as upping the dose and baby gets sorted soon (also keep an eye on this going forward-I was surprised the docs didn't do this automatically for me). X

[midivydale]

Bluedark I remember this behaviour very well and have also had this same conversation with a friend and forumite astrid83 whose baby really struggled with feeding. He was really distressed as soon as he saw the bottle. I am sure she will along with advice in a minute as it is still very fresh in her mind but frm memory once the dose of meds is right feeding & fussiness improves. For us - things did not improve until we had the right combination of meds & totally dairy free.

Hang in there, when was he last dosed for meds? As Shaunag says maybe they need adjusting?

Is the baby fes as upright as possible? We had to try and mirror the feeds of nights eveb at daytime with dark room, no distractions etc. Maybe worth a try?

[Bluedark]

Regarding the dose, we have seen the GP last week so I think the dose is ok. However GP suggested to dissolve half of the tablet in the same amount of water and give twice the dose (if it makes any sense). This will make the tablets last longer. However as ellie78 says I think it reduced its effect (plus it is difficult to administer drugs with a syringe to 8 week old, it comes out a bit). I have started to dissolve one tablet again and give the normal dose today - I hope it will improve things. I have also been dairy free for a week now, maybe it will improve next week. I really do hope this shall pass too and with the drugs and dairy free she will be feeding again. Good idea to replicate the night time feeds during daytime - with a toddler running around I wonder how calm and quiet I am keeping feeds.

Thanks a lot as always

[astrid83]

Bluedark - we had the exact same problems with feeding as you has described. My son would only feed when sleepy or half asleep, and like you we only struggled in the day. During the night he was fine.

Nothing really improved for us until he was on omeprazole, and that took about 5 days to work. He is bottle fed so I can't advice on breastfeeding but I found that he would sometimes feed easier if he was in a sling - I guess that was because he was in a upright position?

My son is 7 months now and since starting solids he has been an absolute joy, he is still on medication but I have not seen any signs of reflux for a long time. He eats when he is hungry and is generally a happy chap most of the time - so different from the baby who would not feed although hungry a few months ago!

Also - I am not suggesting you should do the same but I initially gave up breastfeeding as my son refused to feed, the flow was to fast and with undiagnosed reflux he could not cope with it. It was easier with a slow flow bottle to begin with but after a few weeks that also became as problematic as breastfeeding.

[etta166]

Our life was revolutionised by two factors - SMA staydown formula and omeprazole at 10mg per day. Before that, my daughter was incredibly hard to feed and threw up about half of everything that went in. She also woke up screaming every 45 mintues to an hour, day and night.

I'd strongly recommend that you try an anti-reflux formula. Our consultant at King's recommended it at our second review and it made a huge difference in our case.

And as for administering omeperazole, I found that it was easier to adminsiter in something gloopy so that the grains didn't get stuck in the syrinige, so I adminstered it in the domperidone suspension that my daugter was on as well. From about 4 months, I gave the tablet whole.

[shaunag]

Just re omeprazole, ideally it should be given as a whole tablet as it works so fast. So, the sooner you get it into your baby the better. Also you are right re halving the tablet making it less effective-I was told this by a pharmaceutics expert that worked on omeprazole (don't ask)! Also, don't put too much faith in the gp checking the dose. They forgot to adjust it for me-unfortunately it's for you to have baby weighed just before seeing the gp and asking them to check the dose is correct for baby's weight-this takes time and owing to time pressures some gps don't automatically do this. Did the gp check baby's weight and do this? Also as it's an unlicensed medication I have found they prefer to follow the dose prescribed by a specialist if possible. I don't want to upset anyone (any gps!) posting this but a baby in pain is the worst thing, especially your own so just want to make sure bases are covered.

[Bluedark]

Thanks again all. Regarding the dose for omeprazole, it was prescribed three weeks ago based on her weight at the time. So I hope it is fine, but the GP suggested a change in administering. I have now reverted it back to dissolving the whole tablet however it has not done much change. I understand the key is finding the right balance of dose and lifestyle change (dairy free etc). I will speak to the GP ASAP and perhaps ask for referral to KCH - as we actually have not been seen by a specialist consultant. At the moment she feeds so so little (with a lot of crying) during daytime and then wakes up every hour at night to feed. I really hope we improve a bit in the next few weeks. And I know it is ultimately a matter of time...

[etta166]

The dosing for Omeperazole is not as weight-dependent as other anti-relux drugs like ranitidine or domperidone. It's quite normal to give 10mg to an infant, which is also the adult dose for some conditions.

I know it's a real challenge to administer. A pharmacist can give you a demonstration on how to administer and can also change your dosage form to something more suitable it the tablet is not working for your baby. There is a liquid form and a form that disloves in the mouth (I think).

One thing to bear in mind is that you must not mix omeperazole with milk. The package insert should make this clear. It can be given in water or acidic fruit juice, but should not mix with milk as this can stop the drug from working. We were advised to give it as far away from a feed as possible, not only so that it didn't mix with milk but also so that there was less chance of it coming back up with the last feed!

It is also well worth looking into a milk thickener like infant gaviscon or using an anti-reflux formula is you aren't already. This gives a physical barrier against reflux because the milk goes gloopy in the stomach and can't come back up so easily.