Omeprezole not working? Is this even reflux?

[FrenchiestFry]

Sorry in advance this is long tried to include as much info as I can.
My baby is 9 weeks old, he has been on omeprezole for 3 days now for reflux but we aren’t seeing any improvement. He was born at 38 weeks after a growth scans showed his growth, that had been ahead my whole pregnancy, had stopped and he was 12th percentile at birth. He then dropped a big percentage of his body weight and it took 3 weeks for him to put it back on and that was only due to supplementing with formula.
Since then he’s been gaining weight steadily but is still low percentile. He was vomiting a lot and having some reflux symptoms but since we changed formula from aptamil to kendamil he has had less vomitting but increasing silent reflux symptoms, arching back, wanting to feed lots and then crying after a minute or two, and then refusing to feed, discomfort, constant crying, won’t go in the Moses basket/bouncer/pram in the day and will only sleep in the carrier or the car seat (car seat is a fixed one so can’t be removed and brought into the house). My back is aching from carrying him around all the time and not being able to bend and sit down properly in the carrier. From when he wakes up in the morning to night he only sleeps in really short bursts (10-20 mins max) and probably only gets about 1.5 hours total during the day. He has hardly any calm awake time so we haven’t been able to do any tummy time or any activities with him. He had a mild tongue tie and we had this sorted out around 5 weeks ago. He struggles to latch and feed from breastfeeding and because I have to have him in the sling all the time I’ve been unable to express so he is mostly on formula now and my supply has dropped so don’t see any way back to breastfeeding/expressing.
However he has some symptoms that don’t fit as the omeprezole doesn’t seem to have made even a tiny bit of difference, we’ve used carobel for weeks to thicken his milk and that didn’t help, he also sleeps from 11pm-5am most night which whilst I appreciate this it doesn’t fit with it being reflux.
I’m just at a loss, he’s just crying all the time and seems in pain and we don’t know what to do. We’ve seen the GP and are awaiting an appointment with a paediatrician next week, should we have seen an improvement with the omeprezole yet or does it take more time to work?

Omeprazole takes a while to work. Longer than 3 days.

Just googled and it says up to 4 weeks

My son was the same and it turned out to be a cows milk protein allergy. It might be something to query with the doctor. Several weeks after being prescribed a hypoallergenic formula he started getting better and more settled.

he did have to stay on omeprazole until he was about 9 months as the formula exacerbated his reflux. He’s now a happy and healthy 5 year old!

I would ask if you can trial nutramigen formula in case it’s cows milk protein allergy causing the reflux symptoms. Omeprazole can definitely take weeks to help. My child needed omeprazole, domperidonr snd nutramigen with carobel in to thicken it to calm her symptoms.

I did read it can take weeks to help but thought we would see at least a little bit of improvement within a couple of days but there’s literally no change whatsoever so just questioning if it’s even reflux.
He does get a light rash on his face and neck sometimes so perhaps it is cmpa which is next on the list to explore after we’ve tried the omeprezole for a bit

To add, omeprazole doesn’t necessarily reduce the spitting up (it didn’t for my son). However it makes it far less painful for them.

I think it could be two things going on.

Firstly, some of this does sound like TT. I would contact a Tongue Tie Practitioner and ask them to reassess him.

It wouldn’t be unusual for the TT to reattach or for a further TT to have been missed at the original assessment.

I also agree that it sounds like it could be CMPA. If it is, you’ll need to go completely dairy free (DF) from now and he’ll need a formula prescribing that is suitable. Unfortunately CMPA is only usually diagnosed by elimination.

This article from Kellymon explains the two types of CMPA very well.

And this article from Allergy UK has some very practical advise including how to talk to your GP.

If you do want to continue with some BFing I think it’s also worth giving one of the BFing Support Helplines a call and talking through how you’re feeling with a BFC

Try eliminating cows milk, the rash is a definite flag. According to an ABM study a few years ago over 50% of reflux in babies is because of cmpa, it should be the first thing your dr tries.

Don’t give up hope, you can still increase your supply, put him to the breast a lot, (is his latch now sorted since the tt revision?) do as much semi-reclined skin to skin as you can, small, regular more upright feeds will not only soothe his reflux but they will also help your supply.

Make sure you’re doing paced bottle feeding, so he’s not taking too much from the bottle, only what he needs.

https://youtube.com/shorts/Ntfk_b0Vp7I?si=FTKI_TSG3VmtJCNx

I’d also suggest that if you’re getting back ache from having him in the carrier, that its not a good one, check out your local sling library for tryout sessions, and also please look for a breastfeeding support group, the volunteers that run them often are far more knowledgable than Drs and you’ll meet other mums who have had similar issues.

My daughter started on omperazole at 8 weeks she had a combination of mild- moderate physical reflux and severe silent reflux. We had some improvement in the physical reflux within a few weeks but it took until 18 weeks to see any improvement at all with the silent reflux. The physical reflux improved with the second dose, the starter dose often isn't quite enough, but the silent reflux only responded to the highest dose and only alongside me also going dairy and soya free.

The therapeutic range of omperazole is between 0.7 and 3.0 mg of omperazole per kilo of weight. This means that the dose that two babies need to get the benefit can be more than 4 fold different! Say you had a 5kg baby this is the same as one baby finding they need a dose of 3.5 mg of omperazole but the other needs 15 mg if they respond to the opposite ends of the therapeutic dose.

At the outset you don't know where your baby will sit on this scale. It really is too soon to determine whether omperazole will make the difference. By the time we got to 18 weeks we were pretty desperate so went with exploring the high dose omperazole at the same time as food allergies. I'm glad we did as it was both. It's a personal decision, by doing both you don't know which helped so you then have to test both but doing it sequentially means it's longer to get it resolved if it's both or you chose the wrong option first.