Omeprazole - silent reflux - refusing breast

[Sunnydays44]

Hi 👋 my 10 week old has been on omeprazole for 2 weeks. Compounded by a pharmacist. End of first week there was no improvement so GP upped the dose. 1.25ml morning and night, equivalent of 5mg/day. We’re now at the end of the second week (but end of first week on increased dose) and things have gone from bad to worse. She’s now refusing all feeds (EBF) which is unbelievably stressful for everyone.

Thoughts? Should I take her off the medication and see what happens? Should I continue with the increased dose for another week?

I have been completely soy, egg and dairy free for a month. Her nappies are full mucus but yellow.

Would love any feedback! Thank you!

If it's not showing any improvement I'd stop it personally.

Just wondering if her symptoms could be Tongue Tie and not reflux or allergy?

Are you getting some RL help with the Nursing Strike @Sunnydays44?

I'd give one of the BFing Helplines a call this morning and ask for some support

Sorry the link for the TT doesn't look as though it's worked.

There's information on Tongue Tie here.

What are her symptoms?

Hi Op, hope you're doing okay. I know from experience dealing with allergies/silent reflux can be so stressful!

The mucous usually indicates there's something else she's reacting to. Dairy can a good few weeks to get out of your system. Have her nappies improved at all in the month you've been restricting your diet?

Tongue tie could be making it hard for her to feed so that's why she's getting frustrated and refusing?

There are dairy free formulas the doctor can prescribe if that was a route you wanted to explore?

Was also going to say could it be TT. Have you also had support from a properly qualified lactation consultant? https://lcgb.org/find-an-ibclc/

Good luck, I know it's so stressful.

How are you both this evening @Sunnydays44?

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thanks so much for your responses I really am grateful for the help.

Initial symptoms showed up about 4 weeks
old. Very, very unsettled after feeds,
took us hours to settle her after every feed day and night. Wouldn’t sleep at all during the day without some serious swaddling+dummy, and even then wakes every 30 mins. Loads of hiccups. Despite an amazing supply she struggled to gain weight between weeks 3-6 after putting on LOADS in the first 3 weeks. It is obvious when you watch her feed that at some point some type of pain takes over and she comes off very upset and then is hysterical. Writhing around and uncomfortable.

She has a fabulous latch and my supply is great, it’s been totally pain free so it’s infuriating now that she won’t latch at all.

I have seen an IBCLC who wasn’t sure, but confirmed no tongue tie. She thought potentially oversupply but my supply has now regulated and the symptoms
remain. Shortly thereafter I saw my GP who suspected allergies+reflux so
prescribed omeprazole for a trial. we have it compounded. Initially we were on 1mL twice a day (4mg) which made no difference after a week and we’re now two weeks into 1.5mL twice a day (6mg) still no better, in fact worse because she’s now refusing the breast and becomes hysterical. I’ve tried an expressed bottle and thank heavens she’s taken two of those today. She’s also unsettled after the expressed milk so it’s obvious that something makes her uncomfortable from the milk.

I guess I’m wondering what the next steps are. I see the GP again Friday and I don’t really know what I’m asking for. Should I stay the course and persevere with the omeprazole if it’s still like this? Or should I take her off that and see what happens?

My biggest fear is that she will proceed to reject the pumped milk too.

I’ve been completely dairy, soy and egg free for 5 weeks. Maybe I should also remove wheat and nuts? Also thought I could remove oats and coconut as I’ve been eating a lot of those (dairy substitutes).

Her nappies are also full of mucus. She has many mucus nappies each day (5/6). There’s been no improvement in the mucus since I’ve been on the elimination diet.

I am so worried about how things will turn out. I have a toddler with me too and feel
like I spend my whole day trying to feed and settle the baby. I feel so guilty for him!

Thanks for all the support <3

I would definitely give one of the BFing Helplines a call this morning and talk to a BFC

A useful thing I was taught is silent reflux is usually a symptom not a stand alone illness so in our case it was a symptom of multiple allergies. Once we sorted those there was no need for the reflux medication.

Do you eat eggs? That was one of both my childrens along with dairy and soya. So I'd possibly try removing that before the wheat and coconut.

I always found I had to be quite hard on the doctors and do I lot of my own research to get anywhere with them as it's not really their expertise so see if you can be referred to a dietician.

In terms of the toddler. The arrival of the sibling was always going to be tough anyway. I found finding even 10 minutes of dedicated time just for us helped.

Silly me you've already mentioned the egg 🤦🏼‍♀️

Hi @Sunnydays44
im in the same situation, did you manage to get any answers? My 9 week old only sleeps from exhaustion due to being so uncomfortable x

Hi @Khalilsmama I'm so sorry you are battling this, it is awful when little babies are uncomfortable and it can be so tiring and frustrating, particularly when you’re getting little sleep. Please know it will get better with time and do your best to take any rest and all the support you can.
I’ve had two weird babies who made feeding in the early months very hard! But I managed to breastfeed both to 18 months - proof that you can and will get through this period!
My first baby had silent reflux and a number of severe allergies, he presented very uncomfortable and vomited all the time even as a newborn. He is now 4 and lives with severe anaphylaxis. However, once he was put on omeprazole as a baby his symptoms improved almost immediately and so did his feeding behaviour. If you think your baby’s symptoms are caused by reflux and you trial omeprazole, and it doesn’t improve within 2 weeks, then your baby almost certainly doesn’t have reflux (silent or otherwise) and you can rule that out.
With my second baby, her feeding behaviour was erratic and she was a terrible sleeper, but after a few weeks trialling omeprazole with little improvement I knew it wasn’t reflux related. She did have a tongue tie released at 10 weeks but that didn’t make much of a difference. She doesn’t have any allergies as a 2 year old so I don’t think it was that either. In hindsight I think she just had terrible colic from my ridiculous oversupply. Feeding her in a quiet, dark room
when she was sleepy was pretty much the only way I could feed her for a looooong time. And she barely slept for the first 6 months of her life.
It was rough.
Nonetheless, we got through. She loved food and we turned a huge corner once she was on solids at 5/6 months.
I hope this helps! Find a good GP and a reputable IBLC and then take each day as it comes.
You’re doing great <3

I would disagree that if omperazole doesn't help in the first 2 weeks it's not reflux.
My daughter was on omperazole from 8 weeks and it didn't help until she was put on the maximum dose at 17 weeks when we got any benefit from it. It was only a paediatrician that moved us to the maximum dose, the GP had been keeping her at a low dose. She has ended up needing 3 different reflux meds to manage her severe silent reflux and is still medicated at 4 years! If her omperazole dose drops below 2.5mg/kg she gets absolutely no benefit from it.