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.

Bumping

No advice about reflux, but didn’t want to read and run. Has he been checked for Cows Milk Protein Allergy (CMPA)?

We went through nightmares with breastfeeding at the beginning; we consequently mixed fed and it did work well for the relief of seeing DS gain weight; but you have to want to FF or mixed feed yourself.

Your local La Leche League Facebook group may help, but it does sound as if this is more of an medical problem with the reflux. You can buy formula specially formulated for babies with reflux.

You're doing a brilliant job- be proud of yourself and hang on in there. My DS is three now, and the early days were by far the hardest - it will get better, and he will sleep- I promise.

OP, I had two severe refluxers with gord but they are now teenagers (and ok) so my baby knowledge is fading. One was on omeprazole and the other ranitidine but not until they were older.
Please try posting your question on Facebook group ‘Living with reflux(child support)’
I got loads of support and advice on there and hoping you can too.

And this charity helped
www.livingwithreflux.org

I dont have any advice re the reflux or meds. but your DPs mum clearly has a vested interest and not necessarily what's best for your baby. I'd work with the GP, HV, any other HCPs going forward and bf if you want to. its not up to anyone else. have you got an infant feeding team at your local hospital?

I’d say don’t let people bully you in to stopping breastfeeding if you don’t want to. You can’t tell how good your supply is from the feel of your breasts or how much you can express but if your baby is having regular wet nappies then he’s getting enough and doesn’t need formula top ups. I’d carry on ebf, try the gaviscon and see how things go. Lots of skin to skin time will help if you’re worried about supply. If family want to help they can pick up the cooking, cleaning etc. so you can put your feet up with your baby and just focus on the two of you.

Thank you both. Really appreciate you taking the time to reply!

Vesta

He hasn’t been tested for CMPA: some of my partners family have it so is a possibility but he was ok after the ff yesterday which was cows milk so think I can rule that out.

I am happy to mix or ff if that is the solution. I am just nervous to knee jerk another intervention and especially one which potentially narrows our future options. I am finding it difficult to explain my concerns to dp (he refuses to research anything to do with bf/ ff/ combi); and I feel he is still influenced by my initial week 1 hesitancy to express and thinks me ebf is some kind of vanity project / me being stubborn rather than my concern about what’s best for LO.

Vulcan
Thank you for the links. Going to have a good browse and reach out on Facebook. Really appreciate it.

Thanks Boydy,

Yes I do think we do have one but only way to access the team on ward seems to be through a long wait in a and e! I think we will have to do that Monday if no weight gain.

I really want some kind of assessment of his feeding, my milk for surety and if we are going to try these meds again I want supervision whilst we do it.

He’s only 3 weeks now and we have lost a week of growth and feel like he is some kind of guinea pig of meds right now. We can’t loose another week messing around with all this!

Don't stop breastfeeding unless it's what you want to do (it doesn't sound like it's what you want). I'd go to the GP tomorrow, get medication sorted and continue with breastfeeding.

Thanks Dark star

He has wet nappies at least once an hour. Sometimes feels like every 5 minutes, and back to normal poos 5/6 times a day. Poos were very odd on Gaviscon as he was constipated so maybe he wasn’t getting enough last week.

I had heard feel of breasts and how much you can express is no indication, but trying to explain this to DP is fruitless. He just keeps saying well we will express and if you don’t get anything then clearly we need formula.

So fingers crossed I can express well as really can’t be dealing with the unknown. I too am starting to doubt myself although his mouth is filled with milk when he comes off and he possess all over the place.

So much is trial and error because these pesky babies are poor communicators. I bet you're almost there with a routine that works for him.

I would continue with a soluble PPI (like the omeprazole) and stick to breastfeeding if I could. You could also try cutting out dairy from your own diet.

You poor thing.

Don't stop breastfeeding if you don't want to, it doesn't sound like a supply issue to me.

Ranitidine was transformative for our silent reflux baby but not available any more. Personally I'd be pursuing meds and investigating cmpa but I'm no medical expert. Don't feel pressured by family though unless your GP is telling you to switch to formula.

his mouth is filled with milk when he comes off and he possess all over the place.

This is all you need to know in terms of milk supply. How much you can express has nothing to do with how much your baby can get from direct feeding. So you can tell your DP he doesn’t know what he’s talking about and can either do his research or keep his mouth shut!
I’d definitely do as the pharmacy said and get Omeprazole suspension made up as a special order item. My DC has a raspberry flavour added to make it more palatable. It’s very expensive compared to the stupid, rubbish, pointless, infuriating, supposedly dissolvable tablets, but it’s necessary for such a small child with reflux and our GP’s have always been happy to prescribe it.
I would also very strongly consider cutting all dairy and soya out of your diet in case it is CMPA. You would need to cut it out for 2 weeks to be sure although you may see an improvement much quicker than that.
I would also second the suggestion to see a lactation consultant urgently and have a look at Kellymom if you haven’t already.

I had a refluxy baby. She was tiny to start with - 5lbs 12oz - and then had sepsis so lost loads of weight in NICU / SCBU, my supply tanked, then the reflux started. Ours was definitely developmental as DD grew out of it at around 6.5months.

The infant feeding team helped us develop this plan. You should be able to make an appt to see them. They are staffed by with midwives / nurses who have had specialist training.

We had prescription gaviscon - we never ever gave the full dose. We measured out half a teaspoon from one of the little sachets to start with. I breastfed every feed and then after each feed gave the gaviscon in 35ml of formula. That topped up DD to help with her weight and got the gaviscon into her more easily. As she got bigger, we upped the gaviscon and formula, but we always kept well below the prescibed dose, which meant DD didnt have any of the horrible constipation. (I also pumped 6-8 times a day until 12 weeks but that was more to keep my supply up rather than for the gaviscon). If you didn't want to put the gaviscon in formula, you could express a little breastmilk and give the meds in that instead. That might also help with your MIL problem as you still aren't using formula.

Ignore your MIL - definitely don't stop breastfeeding if you don't want to. It is hard work having a refluxy baby, but once you get the balance of meds right, life is so much easier!

Oh and we can self refer to our infant feeding team - there was a phone number in all the docs they give you when you leave hospital. Have a check in your pack and double check whether you can do the same.

Thank you all, I am honestly so appreciative to be able to speak to you all and get views - especially in the weekend void of healthcare coverage when I just want reassurance and direction.

I think plan will be:

• Tell DP to be quiet and butt out - although will allow a ff top up tonight in witching hour after a cluster feed just in case he’s not getting enough.
• GP tomorrow for liquid suspension in raspberry as whatnoww suggests.
• Demand urgent referral to feeding team or lactation consultant for surety.
• Demand cow milk allergy stool testing - this is a huge food group for me and so don’t want to jump to elimination diet as worried about my own nutritional and subsequently LOs and don’t want to do this for no reason.
• Demand they rule out Pyloric Stenosis - not suggested here but a new one from my Googling as possetting curdled milk in mucus, weight loss and yellow vomit are both symptoms.
• See how expressing goes next week.

Thank you all, so grateful you have no idea!

I had two babies with severe reflux though it wasn't called that at the time. Projectile vomiting as well as a more or less constant flow of sick. They both fed well and gained weight, fully BF. They were tested for pyloric stenosis and the conclusion was an immature stomach valve.
Once I gained confidence it was treated as mainly a laundry problem. Hard work, yes but not insurmountable. I never gave them any drugs. One had colic but not the other so not sure if that's connected.
It continued until they were crawling and stopped once they were upright and walking.

Was just going to say has he been checked for a pyloric stenosis but see you've considered it too.
It's very easy fixed with a small operation and tends to be commonest in first born males. Proper projective vomiting of milk.

@LemonSwan sounds like GORD to me. My DD had severe GORD with CMPA... the mucous, curdling of milk, the smell you describe (it's the acid coming up...), vomiting in sleep and projective vomiting all point to this as does the gooey eye! I'm wondering what his nappies are like? I recall mucous in DD's not so much to begin with but by the time she was a month old it was pretty bad. Personally I had zero luck with the GP / HV, they prescribed baby gaviscon then ranitadine (sp?) neither of which made any difference. I was BF her non-stop round the clock. She'd feed for an hour, throw it all up then be starving / thirsty again so needed another feed. She vomited every single feed at that point and was losing weight every week. Went private when she was 5 weeks old as she was down to 4lb.... I just couldn't leave her any longer. She was admitted for dehydration from the non-stop vomiting.. The Consultant gastroenterologist run a load of tests concluded CMPA, GORD and put her on Lanzoprazole, cetirizine and another drug I can't recall the name of. I wanted to keep BF so consultant said ok but I had to remove dairy, wheat, egg, soya & fish from my diet (didn't leave much to be honest). I did this strictly but a week later she hadn't improved so there was no choice but for her to go onto hypoallergenic formula. To be fair she was very very poorly by that point and severely underweight. In the end she needed steroids' to get the inflammation under control. GORD can be nasty so please do insist on a referral to a pediatric gastroenterologist who can put together a proper treatment plan.

Couple of tips:

• Small feeds often, don't be tempted to do big ones. Consultant had me feed every 1.5 - 2 hours round the clock (not for the faint hearted lol)


• for the lansoprazole if you have the oro-dispersible tables, try to sterilize one of those syringes that comes with calpol. Put the oro-dispersible tablet in the syringe + add cooled boiled water. Shake to dissolve (there will be little granules left - that's normal they are meant to not dissolve, they are supposed to dissolve in the stomach) then gently squirt into your baby's mouth pointing at the back of the cheek. Gets it in every time :-)


• Lansoprazole takes time to work, it's not immediate. Its a PPI (as is omeprazole) and works by suppressing the stomach acid, which in time takes down the inflammation.

Hope this helps.

I also meant to say please ignore your DP and his mothers suggestions your milk is no good... FWIW my ex husband used to say the same, incredibly hurtful. Just a caution on giving formula, I recall the consultant saying that was possibly the worst thing we could of done for DD due to the composition of the formula aggravating her CMPA hence BM is best unless you have a diagnosis of CMPA.

Have you also tilted the cot?

We put the gaviscon in a bottle teat and when baby was hungry, we popped the teat in her mouth, she drank it and before she realised that it wasn't a boob, we whipped the teat out and popped in actual boob. It was a faff and required 2 people.

Ranitidene we dissolved into boiled water, put in syringe and put a tiny bit in the side of mouth just before the feed.

And as others have said, small feeds, frequent burping helps.

Good luck- it is hideous but you will get it sorted in the end.

The problem with a stool test for CMPA is that there are 2 kinds IgE and non-IgE and only 1 will show up on a stool test. So even if the test is negative baby could still have non-IgE CMPA which you would only know by cutting out dairy completely for 2 weeks. That why docs don’t bother testing generally and just tell you to cut dairy out or swap formula if your FF.

I would prioritise skilled lactation support, in person to observe a feed. There are ways to reduce the impact of GORD, also to assess impact of oversupply/fast letdown. You could try feeding in upright/laid back positions in the meantime, and using a sling. Breastfeeding problems usually have breastfeeding solutions.

Has baby been checked for a tongue tie

Hello OP. There’s a lot going on here!

hoping my experience might be of help. My DD had horrendous reflux - we tried gaviscon, it just constipated her. The reflux was so bad there was blood in her spit up because it was coming up so forcefully and so frequently. The pain she was in was awful, so so awful. She couldn’t sleep because as soon as she was on the mattress it would bubble up and burn her.

After the blood we ended up in emergency care (was a weekend, sent by 111), and she was prescribed omeprazole. It was a complete game changer. She had some tummy discomfort the first few days but it settled pretty quickly. We also tried a dummy for the first time - don’t feel bad about using a dummy with a reflux baby. The sucking encourages swallowing down which helps with the acid reflux (a bit like chewing gum) - muscle action is downwards and saliva washes down.

Other things we did included letting her sleep slanted upright on me as much as possible, and tilting the cot. Look into “Wedgehog” as well, which can tilt the mattress. We held her upright for burping, dozing on my shoulder, for a good 30mins after feeding. it all got a lot better with the omeprazole though.

Hope your little boy feels better soon xxxx