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.

I can’t comment on the reflux, however cluster feeding is totally normal, especially in the evenings, and is just your baby’s way of increasing your supply. I remember worrying that my breasts suddenly felt not as full, but it is just your milk supply adjusting to your baby’s intake.

It is difficult when you can’t see how much they are taking, however if you can see milk in baby’s mouth and they are having wet and dirty nappies then that is a good sign. The weight loss could have been due to the vomiting rather than an issue with low milk supply, it is also normal for Gaviscon to cause constipation.

Sorry also re the omeprazole. We had tablets which had to be disperse in 10ml and then she was given 2.5ml (for example, can remember exactly). The tablets do not disperse in water, you need to use apple or orange juice! DD lapped up her half teaspoon every night.

My ds was on omeprazole. It definitely helped with gord. We were fortunate to find a pharmacist that understood the need for suspension medication and basically she spoke to the GP for us to make sure the prescription was done right. It may well be worth persevering with getting the right medication. As for feeding I would stick to your guns with breastfeeding.

Hot water worked for us to dissolve the omeprazole, although we had to make sure it wasn’t loads of water so we could get all the little beads into a syringe

however the syringe idea by a previous poster sounds like a great idea

This isn’t ideal as the active part of the tablet is in tiny balls which fall to the bottom of the liquid and you can’t be sure of the strength in the 2.5ml drawn up. The suspension is more expensive but hugely safer from a dosage point of view.

Also if you are wanting to express, I have found using a haakka to catch my let down on the other side when I’m feeding much easier than trying to express, and by the end of the day will usually have about 5oz.

This all sounds terribly familiar. 5 mth old here, have 3 older kids and BF all with few issues, this one we had worsening vomiting from around 3 wks and poor weight gain. Also sticky eye, facial rash, constant loose stools. After a 2 day spell in hospital to rule out pyloric stenosis consultant suggested CMPA, long story short his symptoms improved massively after cutting out dairy and soy. He’s also on daily omeprazole. This Facebook group has been massively helpful: www.facebook.com/groups/CMPASforBreastFeeding/?ref=share

Gaviscon with formula feeding worked straight away with my baby. (dont have to breast feed).

Has a breastfeeding counsellor/lactation consultant sat with you and observed a feed? Does baby click, splutter, gasp or choke/cough at the breast at all? Do you offer both sides per feed? Is baby laying with their tummy facing your tummy, or tummy facing up to the ceiling

OP that sounds really difficult and you’ve had great advice upthread. I’m a believer in fed is best whichever way but it sounds like you’re actually doing very well BF.

You shouldn’t have to but you need to tell your DP to back off, you don’t need that stress. I get he is anxious but clearly knows v little about BF or reflux so suggest he comes on here to be educated or reads around the subject.

Hope you and LO get it sorted.

From My experience, my LO was great on Omeprazole & dairy free formula & it does have a cumulative effect over time. With the tablets, you break them into half, dissolve in warm water in a Calpol syringe & administer.

If you'd like to continue breastfeeding, you will have to go dairy free, or get your GP to prescribe Neocate formula.

Omeprazole suspension is vile! Mine spat it out & after tasting it myself, I'm not surprised.
I filled the Calpol syringe with 2ml warm water, removed the plunger, put the tablet in & Shook the tablet around in there whilst blocking the hole (& the hole is big enough to let the little beads go through).

So I get a lot of the advice from different posters is probably contradictory so sorry for the confusion. My first has silent reflux and what worked in the end was gaviscon (for the first week or two she had crazy explosive terrible smelling poos but then it settled completely) and omeprazole. We couldn't get suspension so dissolved in 5 mls of cool bolied water (for us cool worked better than warm) and gave once a day usually very early morning half hour before feed (important to give on an empty stomach). Worked wonders for us although we did have to have dose adjusted a few times when it stopped working). This is seven years ago now but at the time I found this leaflet very helpful in explaining how to give the tablet . FWIW i formula fed not bf but that won't solve your problem. My LG would scream and pull off the bottle and refuse to feed. Unfortunately you need to get to the underlying problem. I would also if you can afford it or get one publicly get a lactation consultant to come and observe a feed and make sure you're OH is there so he understands the issues from someone else. It sounds like he's trying to help but making things worse and I know from stopping BFing when I shouldn't have that for me it had huge emotional downside. On the other hand babies were formula fed and are happy and healthy. Basically it's your call but don't get pushed into a choice you don't want

Sorry forgot the link I meant to post www.rch.org.au/uploadedfiles/main/content/pharmacy/omeprazole.pdf

Not being able to produce much milk when pumping is no indication of supply, as babies are far more efficient. I've exclusively breastfed two babies (still breastfeeding one) and have never had particularly good results when pumping.

An NHS midwife recommended the Kelly Mom website to me and it's a fantastic source of breastfeeding information.
If nothing else, your DP might find the information useful... putting it bluntly, his opinion that you should give a formula top up because you can't express much milk is rubbish!

Speak to the professionals and trust your gut instinct. Most importantly, if breastfeeding is going well (sounds like it is - just keep an eye on the wet and dirty nappies as the output is the best indicator of input) you mustn't be railroaded into stopping by people who don't have a clue what they're talking about! If you want to breastfeed, you should be allowed the stress free space to get on with it and establish supply without formula being forced on you/baby (in essence, demand builds up supply).

This is a nice guide to newborn nursing in the early weeks.

Wow. I am so impressed you haven’t given up bf after all this. What a difficult time it’s been. Hopefully, in a few weeks you will be over this time and it will all settle down.
My daughter had reflux, but not as bad as your child. I bf her and her weight went down. I was so anxious, with people’s comments, “She can’t be hungry again.” And , “Have you got her in a routine yet?” I was just not feeding her enough. I thought her crying was wind as that’s what people kept telling me. The HV said, if she cries, offer her a feed and it was the best advice. At that point, she started cluster feeding. She was stuck to my boobs, 24 -7. But it worked and after a short amount of time, Shane started sleeping and night and just cluster fed all evening. I used to hold her upright for 30 mins after a feed, before I lay her down in the Moses basket.
I really hope you do get through these next few weeks. It’s so worth it if you can.
Also, I wasn’t very successful at expressing and even when I did, my daughter arched her back and screamed when my husband offered her the bottle. After a few attempts, he stopped trying. I would look at the bottle and think of the hours of work to produce the small amount in the bottle, and so we stopped trying that. It did mean it was all on me, but it gave us a happy, contented baby.
Take care x

Thank you all for all the other commenters advice and experiences.

Sorry for the late replies - I was focusing on putting all my attention into bf yesterday afternoon, making sure latch and positioning is correct and lots of skin to skin and hunkered down in bed with the LO.

All day he would sleep but only at 45 degrees in our arms and when I went to put him down he would wake up within minutes coughing and screaming. He cluster fed from 7-11.30 half of which I think was comfort nursing and half flutter feeding. He did finally have a big sleep 11.30 - 4.15 which is his biggest night stretch yet and did concern me a little. Part of the reason I didn’t want to add formula top up was so he would wake normally in the night and stimulate more supply.

Did have to tell DP twice to put the bottle down as he was despairing at around 10.30. He is just trying to help our boy. He is also rightly concerned about the weight loss and thinks he’s hungry - which he probably is! The boy has a whole week of weight to catch up on!

I think he has just picked up from my mum talking about how her milk dried up and his mum who said they had to switch to formula at 2/3weeks as he was too hungry and breast couldn’t supply enough and she dried up. On more googling this seems to have been a thing in 70s/ 80s / early 90s mums due to timed feeds and lack of understanding about cluster feeding.

GP on phone saying liquid suspension doesn’t exist. Short shrift to that one and told them to go investigate. Refused to refer to rule out pyloric stenosis as apparently he would have had it from birth and projectile vomit after every feed - which google tells me is not the case. Picking my battles so waiting for prescription first.

HV in the next hour so fingers crossed he has gained some weight over the weekend. Will speak to them about lactation consultant.

So grateful for all your inputs - it has helped immeasurably you have no idea!

And the CMPA, I am going to have to figure out what else to eat!

I am hoping once he starts the correct medication he will get better - so if I start now how will I know if it’s the meds or the diary?

Can you reintroduce later and see if he starts getting worse again or is that not how it works?

Yes that’s exactly what you do, cut it out for 2 weeks then reintroduce and see how he is. Remember to also cut out soya as the proteins are very similar so it’s common to be allergic to both.
I’ll admit I found it very, very difficult to cut out dairy and soya, both my DC had reflux and one had CMPA. I had to exclusively express with my youngest as she couldn’t stay latched, so after months of expressing for 6 hours a day and having no dairy or soya I’m ashamed to say I gave up. She was happy on the hypoallergenic formula and I was happy not spending 6 hours a day expressing. I still feel guilty about it though as I breastfed my eldest for years.
My DC’s prescription is an East Stone Special item and is made up at 20mg in 5ml with Raspberry flavour added. It takes a few days to arrive sometimes because it’s ordered to be made up as a special item by the chemist. They used to make it up at 10mg in 5ml but that meant giving even more ml’s for each dose. So I asked if it could be double strength which they happily did. My DC used to spit it out but after getting it flavoured and doubling the strength, plus giving it over half an hour 1ml at a time, she stopped spitting it out and now takes it happily all at once. She’s been on it for years now though so is used to it. That is unusual though, my eldest was off the meds by 10 months old.
It sounds like you are doing a brilliant job of advocating for your son. I hope things start to improve really soon.

I was told FF top is wasn’t a good thing as the cluster feeding was my boobs adjusting to produce enough milk and a FF would have an adverse effect on that. Every mum’s experience is different though.

Have you tried popping a couple of books under the end of the cot? The slight angle helps keep the milk further down.

Thanks Whatnoww, invaluable advice on the medication.

And please don’t feel guilty about not breastfeeding! If it works for you and the LO then it’s a must and I am absolutely not some kind of avid bf advocate. At this stage I just to keep all options open and not make anything worse - but if he does have CMPA then long term that’s not sustainable and I think formula is the way to go. It would also make the thickening option easier and so meds may not be necessary for us so an option I might explore after the 6 week establishment stage of bf if nothing else is working.

To update on the GP and the meds - no one will change the prescription so we still don’t have anything.

Had a call from another doc at the practice who basically doesn’t believe in omeprozole in young infants and says studies show no difference, doesn’t like that it’s unlicensed and says if we were his patient wouldn’t prescribe. Suggests we do nothing and keep on as we are.

I went to try and find these studies and it seems linked to a study which was basically arguing GORD is over diagnosed and in half cases unexperienced parenting, maternal anxiety and over medicalising normal crying/fussiness. I can understand that if this is the case then of course it’s not going to be statistically significant in improving things if half the people never had a problem in the first place. So still confused.

I really do think he has it and it’s not in my mind. Never even knew or suggested this as a thing until admission to hospital and peads diagnosis. When I put him down asleep he is settled for 5 mins then you can physically hear the liquid bubbling up, him swallowing and the shortly after coughing and screaming.

So going round in circles now a bit.

Could be cows milk protein allergy. My DS2 had this. He was a very unsettled baby. Not diagnosed until over 1. Try eliminating dairy. Express every few hours, and your supply will be fine. You can try him back on the breast later on, my son was fed EBM for a month and then went back on the breast

Oh OP, it’s so hard when not even the health professionals can decide on what is the best course of action. I really feel for you! is there any way you could see a private doctor? We were lucky enough to go through my husbands work as out GP was pretty rubbish.

Obviously every baby is different but if it helps, we had a very similar situation with my DS (just coming up 10 months now). He was dehydrated on day 2 of life so we were encouraged straight away to top up with formula. Within days it was clear that he was very unwell with it. We had to jump through all the hoops before my pushing (I was CMPA as a baby and we have a family history of allergies/eczema/asthma) finally got us prescribed both Neocate formula for CMPA and omeprazole for silent reflux. It took about 7 days of being on both, but the difference was pretty dramatic.

Unfortunately, we also found out at about 6 months that DS also had a lip tie and posterior tongue tie that also affected his reflux and feeding. If I’d known sooner, I may have been able to carry on breastfeeding successfully - although without dairy and soya in my diet, I’m not sure what I would have eaten haha! Maybe check with a lactation consultant to see if this could also be an issue? Tongue and lip ties can cause aerophagia apparently which also makes reflux worse. We noticed a huge difference in DS’ sleep after they were sorted.

Fingers crossed you get some answers and some support soon! And congratulations on your LO too!