Silent reflux/ feeding aversion - out of options

[sleepbecomeshim]

Hello I'd be very grateful for any advice as I'm at my wits' end. I appreciate that advice here doesn't replace medical advice but I'm keen to hear of others' experiences. Apologies in advance for v long post....

My 5mo breastfed son has reflux, mainly silent. It came to light when he was about 6 weeks old and his main symptom has always been crying/fussing during breastfeeds, sometimes resulting in not feeding at all.

He was born on 91st centile and has stayed there, remarkably. This is largely bc I base my days around engineering situations in which he may fall asleep and from which he can then be fed. He will only feed properly when he's asleep. Often, if he comes to, he'll stop feeding after only a minute or two and won't go back. The cycle (getting him to sleep so I can feed him) then starts again.

We were on ranitidine for several months which worked well until about a month ago. He was still a fussy eater and fed best when drowsy but he did eat. We increased the dose in line with his weight but it stopped being effective after about 3 months.

So we started omeprazole (10mg) about a month ago and it made a huge difference. For the first time we were able to have a more normal life that wasn't based around the getting-to-sleep-so-he'll-feed cycle. He ate well, from awake, in public etc - and I understood for the first time that breastfeeding can be convenient! He also sleeps better at night.

But for the last few days things have been slipping back to the old ways and he won't feed for more than a minute or two during the day. The slightest disturbance will make him stop, after which there's no going back. I've tried the usual techniques for distractible feeders - dark room, no stimulation etc etc, but this is more than distractibility. I'm sure it's his reflux that's the cause as there are similarities with precious flare - ups.

So we are increasing his omeprazole to 15mg/day but I am terrified that this wont work. I'm so disappointed as things were SO good after starting omeprazole and I'm concerned the same thing will happen with this drug as with ranitidine - ie dose creeps up until a point it stops working.

So, I wanted to ask if anyone had any advice about what else we could try. The only thing we haven't done is me cutting out dairy/soy. Would this be worth doing, from others' experiences? Baby refuses a bottle so the 'pressure' has all been on me to get food into him. His initial reflux episode at 6 weeks coincided with when we planned to intro a bottle of my milk alongside bfeeding but when feeds became so challenging we delayed - and now he rejects it completely, along with sippy cups at the moment. So non-breastmilk isn't really an option.

Given his weight is stable, HVs/GP are fairly dismissive that this is a phase that'll pass in due course or with intro of solids etc. But that fails to take account of the impact this is having on mine, my husband's, and baby's quality of life. The sleep-to-eat routine is exhausting and very limiting. But if we didn't do this he just wouldn't eat. It's also heartbreaking when my son wants to breastfeed, starts - and then something stops him. I'm also concerned his weight will stall.

So, any advice/comments/experiences would be v gratefully received. Thank you x

sleep have a read of this on tongue tie and see if any of the symptoms sound familiar

My first DC was a lot like this, I feel for you it's so hard. It was particularly tough when you see really chilled babies just enjoying a cosy feed and it looks so easy!!

Your perseverance has obviously paid off as his weight is on track. It really does get easier when weaning gets going, you are in the thick of it just now with lots of developmental changes and this going on too.

I really noticed a change at 8-9 months and things got a lot simpler.

I tried cutting out milk, but it didn't work for us. However I since realised that there is a lot of hidden milk products in things, so maybe I wasn't doing it right.

Hang in there

Both of mine had this problem, the second much more severely. Can totally sympathise with the sleep to eat issue, I used to dread trying to get milk into him.

Ranitidine did nothing for us and omeprazole was a godsend. If the omeprazole helped you initially then I'd say upping the dose will probably do the trick. As they gain weight, you need to keep increasing the dose for it to work - think we eventually got to 20mg by the time the reflux really improved at 9 months. Dairy was the problem for us too, ds2 ended up on Neocate formula as he was CMPI.

Huge hugs, it was the hardest period of my life getting through the whole thing. I now have a bouncing 3 year old who eats constantly and it seems like a distant memory - it will be the same for you further down the line, I promise!!!

Thank you so much for your replies. I feel we're in a slightly better place now than we were last week. I've increased the omeprazole dose to 15mg and have confirmed with the paed that we can go to 20mg if necessary.

I've had a look at the tongue tie link, thanks - and yes, he does have some of the symptoms. However, those he has are also reflux symptoms so it's tricky to ascertain what's what! And presumably some of the TT symptoms are also just babies being babies...? It's v interesting though.

His feeds have lengthened a bit since we upped meds so I deduce from that that silent reflux was/is culprit. He definitely isn't a classic case, though - he's fine on his back, sleeps OK (sometimes!), etc - it's just fussy breastfeeding which is the issue.

I've also decided to pay for some counselling for myself. I find it v distressing so at least being able to manage that better will be some help....

Thank you all again

Have you spoken to a BFC sleep.

Yes when the baby was v little (3 weeks old) who said he didn't seem to have a TT (though I wasn't specifically asking about that). I went along bc he used to be a very noisy eater and sounded like a pig at a trough (can be a symptom of TT I see) but that was attributed to a floppy voice box and has now gone. May head back to BF cafe though to ask again. Thanks.

Sounds like a good idea

This could be me writing the original post...what made you get the 2nd medication of omperzole... My lb has managed to maintain a weight only because of feeding him constantly like you say...it is driving me to the end of my sanity!

We've just gone through something similar with my son. He was started on 5mg omeprazole morning & night (& infant gaviscon) which worked wonders for 2 months which also helped with his breast feeding aversion & he gained a good amount of weight. He started to have symptoms again so his paed upped his dosage to 10mg morning & 5mg at night. This makes sense as he had gotten bigger & essentially grew out of the old dosage. I understand this may happen again and it's a non issue with this type of medication.
I also have a lot of milk with a fast let down which exhibits similar symptoms to reflux esp the breast aversion & pulling away which is still an issue. This may be something to look into with a lactation consultant if this continues after you've started the new meds. I've been told that if there's a milk protein allergy/intolerance his symptoms would be different but for ease of mind it's prob good to eliminate it as the test is so simple.
I have heard milestones, teething & vaccinations etc can cause flare ups too. I hope it's all going well & your son has had a good response 😊

Been there too! DS was on 20mg omeprazole, plus gaviscon & domperidone.

His reflux was so much worse if he had a cold, or was teething. He was a rubbish feeder & off the bottom of the centile chart. It was a grim time.

Have you had a Gastro referral? Ours was so much more on the ball than the GP.

His reflux eventually went age 3.5.

I think cutting out milk and soy would at least be worth a try, in this situation. Trouble is, then you won't know whether it's the dietary restrictions or the increased omeprazole dose.

Have you changed anything about the timing of the omeprazole? It is best given on an empty stomach which is then left empty for a while to make it work. IIRC from the dark days of DS's CMPI and reflux nightmare.