Help please.. 3 week old, reflux, medication, breast feeding,

[LemonSwan]

Apologies for the long post but need to give a full picture. A lot has happened in the last week and as first time parents we are really struggling with getting clear advice.

I am hoping to get views of others because we keep getting contradictory advice and I want a plan for Monday/Tuesday to speak to GP and HV about.

Our LO was born 7’7, lost 7%, regained in first week. 8’7 day 10. All well in himself, had quite a bit of wind and reflux at times but settled well the majority of times and slept well through the night (only waking for feeds and being unfussy).

Day 3 he projectile vomited his first milk feed. This was yellow but my breast I’ll was also still colostrum tinted and the same colour so midwife not too concerned.

Day 15 we had quite a traumatic experience - he vomited yellow vomit in his sleep about an hour after his feed (smelt of vomit rather than just milk posseting) which went in his nose and mouth. There was also a lot of mucus, it became clear quite quickly he couldn’t remove it and neither could we so we rushed straight to the hospital for it to be suctioned. This was within minutes and he wasn’t in a good way when we got there - no longer red and crying, coughing but pale, lethargic, floppy, barely trying to clear it. I don’t think he would have lasted long so terrified about what if we hadn’t reacted so quickly.

We were admitted overnight for monitoring and to check whether he had aspirated. X-ray, ecg, stats all normal. They say it is could just be a freak event and immature digestive system (mucus from birth still irrational and body tried to clear), he is quite refluxy so have been given a diagnosis of BRUE/ GORD, and commented potentially a milk allergy. Hospital prescribed 6 satches of Gaviscon Infant a day.

It became clear day one that Gaviscon Infant was horrific and the dose way to much.

We reduced the dose and added in a whole rigmarole of techniques to try to make it work. The best we could get it was Infacol pre feed, feed, wind half way, feed, hold upright for 20, Guess the gaviscon dosage, mini feed to aid digestion and remove taste, upright again, dummy to promote digestion. It worked well some of the time but get the dose slightly wrong and all hell ensued. He did have some nipple confusion when first latching but figured it out after a few minutes. I wanted to reduce dummy use but also wanted to encourage digestion - did a bit of both.

This had been a really tough week for all of us; our boy was looking under the weather - one sticky eye and baby acne on his previously beautifully clear face. I was tired and stressed, DP also as the screaming was relentless if we got the feeding regime slightly wrong. My milk supply did feel like it dropped (previously engorged on the verge of mastitis with a very fasts let down to feeling half empty) - probably due to stress, and sleeping with one eye open.

HV came on Day 21 - agreed we needed another plan. She then weighed our boy and he has dropped to 8’5 rather than gained any weight. She sent us for urgent GP appointment. Everyone agreed stop Gaviscon.

GP called paediatrician who said use Lansoprozole. First night was like having our pre- incident son back. Absolute bliss. His skin half cleared over night, better colour, he was clearly feeling much better in himself.

Next morning (yesterday) GP called in a fluster. She has decided she wants to use Omoprozole. Couldn’t get a clear answer why except she was more comfortable. Went to pick it up yesterday and they refused to dispense as it is a dispensable tablet not dissolvable (little granules are the active medicine), and so you either draw off water containing nothing from the top or an unknown dose of active granules. Said go back and get liquid suspension.

Got home and decided to keep giving the lanzaprozole as that’s all we had. Drew up the 1ml dosage and gave it to him - chaos ensued from 7-10pm - inconsolable again. Decided to go and check the tablets again and realised it also is the granule format and so he probably wasn’t on meds the first day, and received an unknown quantity.

I am unsure whether he was cluster feeding to regain weight/ my supply or the Lanz also doesn’t agree with him. After a big argument with DP where he and his mum think I am starving him to death - we gave LO 90ml formula (which I may well be!? even though HV doesn’t believe this to be the case as he sleeps well at night and has a normal feeding pattern - rather thinks he has used too much energy from being unsettled and stress has probably impacted supply a little). He settled and so now DP does think I have been starving him, my BM is no good and formula is the solution.

To add to all this DP and his family have been pressuring for me to express / ff since week 1. They want to help and be able to have him for longer periods. Instinctively I didn’t want to do this until later as I didn’t want to over stimulate my already engorged breasts. Since this whole incident things have obviously changed. I have an expresser arriving tomorrow to try to increase supply and top up feed.

What I don’t want to do is ff, as read it’s worse for reflux and if my milk dries up we have no other options but more meds.

Also I do believe this is most likely just an unfortunate blip in the road as he is already looking way more healthy less than 48 hrs off meds - at the beginning of the week I didn’t want to take that risk. Now my immediate priority is getting him settled and regaining weight.

HV & GP Monday - should I ask for correct meds, no meds?
Should I continue to ebf, combi or ff?

I just want our boy to be happy, healthy and nourished. At this point I don’t know how to achieve that as everyone’s opinions are different and every intervention causes a cascade of other issues!

I am terrified for him not to be on any meds as obviously don’t want a repeat event, but after him getting so much better last few days I am worried his failure to thrive last week was likely mainly due to the meds.

Thanks in advance if anyone made it through that and has any advice.

Thanks Darbs, really good to know I can express while testing the CMPA with formula and then restart breast if it’s not the solution.

The only thing keeping me sane are my ‘cup of tea in the garden break’ and a trip to the drive through Starbucks every couple of days!

I would second the suggestion to see a private Gastro Pediatrician I’d you can afford it. It’s usually £250 locally to me. Make sure you tell them repeatedly that you can hear the milk coming back up. I hear the same with my DC especially at night when it’s quiet and she’s in my bed, because she can’t sleep due to the reflux.
It’s very obvious that’s what I can hear, then she starts coughing and choking on it. When she was younger she also had hiccups daily.
Consultants are much more likely to be relaxed about prescribing Omeprazole. Also if you do end up with an allergy formula I found thickening it with Carobel was much more successful than using the baby Gaviscon. You may need to play around to get the right size teat as well. Nutramigen formula is very watery so without the thickener you’d need a tiny hole in the teat and with the thickener you’d need a much bigger hole. Otherwise baby can get frustrated and end up swallowing air while trying frantically to get the milk fast enough. Or they end up with teat collapsing when they suck.
I guess parents will always find things to feel guilty about. I feel like I didn’t try hard enough, but at the time it felt like my eldest was suffering as well because I always seemed to be stuck on the sofa with a bloody breast pump attached.

That is a good idea actually. With my first I managed to wean him off most of his bottles when I’d ended up mixed feeding and back onto 90% breastfeeding.
If you do try to cut out dairy I found the Oatley barrister the nicest by far in coffee. I didn’t find one I liked in tea though unfortunately. My vegan friend suggested sticking to thinks that are naturally dairy free because most of the substitutes are horrid!

I am considering private.

I am also trying to not dismiss what the doc who doesn’t like Omo is trying to say. I really don’t want to medicalise him if it’s not required and perhaps his wee digestive system was just trashed by Gaviscon last week and he might get better if left to it.

The more we talk to people the more info we are getting. Pharmacist was such a god send in refusing the prescription otherwise we would be going along randomly dosing or not for weeks even months before figuring out there was a problem.

Might just try to struggle through a bit longer and see if it improves over the next 7 days. Get a sling to try to protect the eospshagus and let it heal, and enable him to get some sleep. Might try probiotic drops for gut flora as that might help rebalance him after the Gaviscon assault on his gut.

If things deteriorate or he doesn’t improve then I am going to demand to try the meds. It seems the easiest way to know if that’s the issue.

That sounds sensible. We used probiotic drops as well, which I’d forgotten, it’s years ago now.
We found a bouncer useful for daytime naps because it was a lot more upright than propping up the crib at one end. The baby bjorn bouncer is brilliant and they do a newborn version now.

Thank you so much! That is exactly what we need. Something 45ish degrees with length and space for head turning. Genius 🥳

I will try the probiotics and ask docs whether drops on shelf or they have anything specific they can suggest.

Hi OP, I haven't read the whole thread but your situation sounds so so similar to my little boy.

He has CMPA, GORD and also a previous tongue tie.

He's 6 months old now, we've been dairy free for 3 months, on twice daily omeprazole since 4 weeks old and tongue tie released since 12 weeks old.

Please request a referral to your paediatrician at the hospital children's outpatients. They have much better understanding of all the problems you've had regarding getting the omperazole liquid and CMPA/GORD. You should also get a referral to the dietitian if he does have CMPA.

We saw improvements from cutting dairy by 6 weeks - it's hard going but doable.

I really hope you get sorted soon, it's an awful time for you both but it will pass. Sending hugs xx

You’re very welcome, I used to bounce her gently in it to get her to settle and she’d happily sleep in it. So much better than having her asleep on my chest all the time. We used the Biogaia baby probiotic drops. I’ve found GP’s always seem to think it’s pointless but I was willing to try anything! I also took both mine to a cranial osteopaths as newborns, again I was willing to try anything to help them with the awful pain and upset. I can’t say whether either helped because they also started on Omeprazole at the same time which definitely did help both my DC. I’m sure it does get prescribed at times to DC who don’t need it though. It’s so hard to work out what’s wrong with little ones at time, with symptom overlap and colic to consider. Plus I’m sure some parents just aren’t prepared for the fact that babies are often sick after a feed and cry, a lot at times.

Hello, so sorry you’re going through this- it’s utter shit. I’ve not had time to read all the replies, but if you want a recommendation for a private consultant in London DM me and I’ll send details. He’s one of two best ones in UK.

i really recommend splitting the omeprazole does to one in the morning/one at night, it made a huge difference.

The meds will take minimum 2 wks to kick in. The correct dosage is based on weight and needs to be adjusted constantly. Someone on the FB group will be able to confirm the correct dose. (I’ve forgotten). The first 2 wks of dose increase are bumpy but ride them out.

change to a new GP if they’re not supporting you with the meds. It’s unlikely you’ll get the suspension tho.

we found an infacol pipette was much easier to administer the omeprazole and big enough to collect the granules etc plus you can administer it in a controlled way. At 6 months you can desolve tablet on a big spoon with tiny bit of water (wait 5 mins) and mix with Ella’s fruit purée pouch, administer using a silicon spoon to get every single scrap- goes down very nicely :)

If dairy is an issue (it probably is and soya) it will take 6 wks minimum for all the dairy protein to leave yours/LO’s body, be prepared for a long ride.

Ranitadine was banned and still is I believe. You may need to hold LO up much longer after feeds- try increasing the time if not able to lie LO down or if sleep is a problem.

if you can, I would stick with the dummy, I tried to fight it, but it was clear to see how comforting and how much it helped my LO, keep an open mind about it.

DM me if I can provide any more tips, we had a long old journey of it, but ours was an exceptional case who is now absolutely fine- you will get thro it and have the most amazing bond with your LO! best of luck 🍷

Thanks all,

I am too knackered today to even write so I apologise!

GP called again this morning - agreed to give it a week. Won’t even entertain the liquid even though it literally says on NICE use liquid. Was saying how about trying another pharmacist who will dispense! I am just despairing at the fact they are willing to try to get round a pharmacist refusing to dispense as said it’s not safe.

Tried to ask about probiotics as have found there is one administered to neonate babies called acidophilus extra 4 and could we maybe try that.

Our boy was a c section baby and perhaps he doesn’t have the right balance.

Said she would investigate but again doubt will get anywhere with that.

I will PM you ILoveetea. Thank you very helpful for the recommendation.

Oh and forgot to share good news yesterday!

Our boy is regaining his lost weight, and moved up half a percentile just over the weekend. So catching up again quickly and hoping by the end of the week he’s back tracking the 50th again.

DP finally understood the bf yesterday. But today was again saying let’s just give him formula - he’s too hungry. I think because it’s the one thing he can’t control he assumes that that is the answer.

I feel you, it is absolutely awful. You need to find a way of getting some sleep yourself - perhaps one of those baby monitors which you can attach to their toes might help? or could you alternate with hubby for part of the night? Please please don't stop breastfeeding prematurely because of pressure from others, there are so many benefits for both you and the baby. Not least fewer colds and coughs in the first few years, you'll be thanking yourself in the future!

Great to hear there's been some progress. Maybe try googling benefits of breastfeeding and show this to him?

Have you showed him info from kellymom etc about babies that age cluster feeding? They talk about them putting in their order by feeding lots to increase your supply because they’re having a growth spurt. Also show him some stuff about the fourth trimester, they just want to be with Mum getting comfort by being held and feeding. Plus their tummies are the size of their fist, so absolutely tiny and they digest breast milk really quickly, so need to feed little and often. It’s all totally normal, when you factor in possible reflux and then wanting to feed all the time to sooth their painful throat it’s no wonder it seems like their always hungry.

I haven't read all the replies so I'm sure someone else will have said this but make sure you stop eating milk and products containing milk so that this isn't passed through the breast milk. This helped my reflux newborn but the thing that helped the most was Ranitidine absolute life changer. The paediatrician that prescribed it said that Gaviscon is useless for reflux and he doesn't even know why it is prescribed.

I continued breastfeeding exclusively until two years.

Good luck it will get better but I remember the long, long days and nights of holding my baby upright all the time.

I honestly agree with your DH, if your baby is hungry that is far worse for him than giving up breatsfeeding. I cant imagine trying to get a baby to sleep who is hungry. 😥

@WhatNowwwww 's post is great here - cluster feeding, comfort sucking and a tiny tummy explain why baby needs to be breastfed lots. OP clearly isn't starving him and her last post says that weight gain is improving so he's on the right track. I do remember with DD how hard it can be to trust that they're getting enough because you can't directly measure the ounces they're drinking like with formula. Nappy output really helps to allay these fears or shows if there's a problem.

It’s no wonder breastfeeding rates are so poor in this country. Parents should get the support during pregnancy and at the newborn stage, so they understand that things like this are totally normal and why. It’s no good midwives and HV just saying newborns feed a lot, if people understand why and what to look out for if there are issues, they will feel more confident in the decisions they are making.

Nothing the OP has said sounds like baby is hungry to me. I agree it would be cruel (and dangerous) to leave a baby hungry. It doesn’t sound like that’s what’s happening here at all.

Hi All, just thought I would come and update in case anyone is interested or anyone in the future finds this thread.

So we went with the no meds trial and used probiotics instead. After lots of googling trials we wanted to use bacteria Lactobacillus rhamnosus and reuteri as it has been shown to improve processing of breastfed gut contents.

Specifically we chose Abidec Immune Support and Labinic and just switch between them.

At first he was much happier being off the Gaviscon but still had bad reflux especially when laid down. He regained his weight to birth percentile within a week of being off the Gaviscon.

Second week poos started to be a lot less mucusy - I think the probiotics. But we still had to hold him upright after feeds before going flat. But flat was now possible with a dummy to enable him to soothe and swallow when it started to rise up.

Third week no mucus in poo but he was having infant dsychezia (struggling to learn to actively poo).

Fourth week and I suddenly realised he can now go flat quite quickly after a feed - sometimes even quite happy without a dummy. His stomach still sounds like an old water pipe sometimes but he doesn’t have that choking when he lies flat.

So it was all really positive in the end. He still throws up all the time but is generally a happy spitter, and the large vomits haven’t happened since he got over his infant dyschezia.

I in hindsight he had a lot of mucus left over from birth and a poor microbiome due to c section. This was made worse by the fact he couldn’t actively empty his bowels so his body was waiting until maximum capacity to automatically empty and this resulted in both ends and the big vomits. I think the dummy and the probiotics massively helped the reflux as it enabled faster digestion and so less time for the milk to curdle, expand and create more pressure.

So thank you all so much for getting me through that rough time. Really appreciate all the support and all your advice as it really helped me to be informed - particularly insight into the liquid medication issue and encouraging me with the breast feeding.

Thank you 🙏🙏🙏🥰

@LemonSwan thank you for updating, so glad things are improving! So much is trial and error with feeding so it's great that something is working out now.

That's fab news op.
My second DC was like this. I had to stop eating onions! That stopped the windy tummy ache. Also used a fisher price baby swing seat
She was also a very efficient feeder and kept taking milk until she was over full. Sick after every feed.
Gp wasn't very helpful prescribing meds to go in a bottle when my DC wouldn't have a bottle.

That’s great news OP! A dummy definitely helped my youngest, I never thought I’d use one but needs must and all that.

Thanks all. We are so relieved 😅

Thanks again for all your support and advice