Omeprazole - should I give it to my 12 week DS?

[Kvg888]

My DS is potentially suffering from silent reflux, he:

• coughs (not loads but a few times a day every day with no temp or sign of other illness)
• sometimes grunts, especially in the night
• really struggles sleeping, only sleep on me in the day, does not like being on his back for long periods, will only do short stints in his next to me then wakes up arching back, making noises before progressing to a cry
• can sometimes here him swallowing
• has acidic breadth
• cries after feeding, sometimes during (exclusively breast fed)
• Hiccups a lot
• lost weight, dropped from 50th percentile to the 9th, though now tracking along the 9th for the last month
• struggles to bring up gas, especially in the night. When we do they are usually quite violent burps.

He is 3 months old, we tried gaviscon for 4 weeks and it did nothing but make him constipated and seem in even more pain. I’ve found the worse hours are 4-7pm and midnight - 2am.

GP has now prescribed omeprazole and I feel really conflicted. He seems in pain - I’m fairly sure it is not colic or an allergy (he does not throw up, no rash, poos are normal colour/consistency). I have tried gripe water, infacol, holding upright after a feed, feeding in an upright position etc.

I keep reading about omeprazole and how it is not actually approved for infants under 1 and I see lots of parents saying it has worked wonders but lots of articles about how it doesn’t actually work for silent reflux and can cause other issues (though I think these other issues were more linked to long term use of the drug).

Can any one share their experiences of using the drug, or deciding not to use it and your reasons why?

thanks so much for your support and help!

Hi OP, we have just been through this.

I had lots of really experienced posters comment and it was really helpful.

With our boy in the end we did a trial of no meds to give his body a chance to rebalance after the gaviscon assault. For us it was the right decision but for you medication might be needed.

The omeprozole tablets are quite controversial - not only as unlicensed but because the dispersable tablets are not always appropriate for dissolving depending on the dose (the grains at the bottom are the active ingredient - not the cloudy liquid).

Here was my thread, it may be helpful…
www.mumsnet.com/talk/am_i_being_unreasonable/4554424-help-please-3-week-old-reflux-medication-breast-feeding

Thanks so much for sharing this ❤️

Hey so I was very very hesitant to use it for my little boy. As the pp said, there’s a lot of question marks over using something like this in children under one and in general the use of a proton pump inhibitor in a baby was not something I wanted as the longer you’re on it, the more difficult it is to get off it as you have to deal with something called an acid spike. This is where the body produces more acid initially before it rebalances to normal but a lot of parents think it means their baby needs a higher dose or to stay on it because their baby is in pain because of this spike, so coming off it does have to be done carefully.
Saying that, after 2 months of my baby screaming in pain after every feed I decided to give it to him.
it does work wonders and it was definitely the right decision.
He’s 15 weeks now and we still use it but I keep reminding myself it’s a low dose per day and that there’s lots of people I’ve spoken to who were able to successfully wean them off it well before one year old, which was good to hear. We’re also under the supervision of the Infant Feeding Team at Alder Hey who fully approve he needs it for the time being to manage his acid reflux which provides a lot of comfort for me. Ultimately I have a much much happier baby and that is the most important part.

Our daughter has been on it since about 6 weeks, now 18 weeks. It has helped her although her issues are complicated by suspected CMPA so coming off cows milk formula helped more. However even with special formula we notice when she has spat a dose that it's much worse.
Honestly I didn't look into it really, we were prescribed it and she was really struggling so we gave it. Gaviscon wasn't an option for us as she already suffers badly from constipation.
We are very lucky to be prescribed the liquid version which is so much easier to give- having crushed and dissolved tablets for years for my work!
Our main issue is the dose is adjusted by weight- so everytime she has a growth spurt we notice it doesn't work as well and it has to be upped. To the point we now know she has put on weight before weighing her when the reflux gets worse! At this age she is always growing so we feel like we are constantly chasing the dose but that's just the way it is for now. Hoping in a couple of months when we start to wean we can look at getting her off it.

YFrom a nurse point of view -

Yes .

Omeprazole has been around for a long time, so its well researched and well tolerated.

From a mum point of view -

Yes
My 2 DC had it ( one still does) . She was failing to thrive with reflux- it really helped her pain.
She now has a chronic pain condition and omeprazole does a fab job of protecting her gut so she take much needed pain relief.

Yes, used it for one of mine who was put on it a few days after birth after a trial of ranitidine had failed. I had no hesitation as the was all managed by a highly skilled hospital tertiary team and I simply do not have the knowledge or expertise they do in this regard so thinking I knew better never crossed my mind. You will find most meds are not indicated for paeds, there is simply no return on investment for most meds as small patient pool. That’s why experts in the area put together real world use data over time which gives a much better picture with efficacy and safety and are generally placed above regulators in terms of skill with this. Institutions may also toss in the cash to do some of their own investigative work for some meds, particularly tox based gaps and this is also used by the specialty base when sharing information on use.

Thanks for the reassurance everyone- it is really appreciated!

I certainly do not think I know better than medical professionals - and not opposed to medication. However I’m aware that every medication has risks, such as general side effects presented on the drug info sheet and also that things can be identified later down the line - like why ranitidine was routinely prescribed and now recalled & then discontinued.

If I 100% knew this was reflux and that he needed this medication to be in comfort I’d be happy for him to take it. Sadly little boy can’t tell me this :( Unfortunately silent reflux displays many symptoms that can be caused by other things or just a particularly fussy baby - so my concern is giving him a strong drug he doesn’t actually need. Also it was prescribed by my GP, during a 5 min consultation, not someone who is a specialist Ped or feeding expert, he has told me before he doesn’t know much about breast feeding. Hence why I did some searching on reputable sites like the nhs to understand the drug, side effects and any potential long term effects - and why I came here to just hear about parents experience with it :)

Thanks again everyone

Hi, I'm really sorry to hear your little one is struggling with silent reflux, it really is awful! However, reflux is a symptom of something else going on, ie tongue tie or CMPA. These are just two examples I can think of on the tiop of my head but there are lots more. I would try and work out the root of the problem.

Do you have Instagram? If so, Rockabye_Hub are worth a follow, they helped me massively figure out my boy had a tongue tie. Sending solidarity.

Yes give it to him also look at the antihistamine approach which he may need as he gets older. You won't be able to wean him or sleep for a year if he isn't treated and he's in pain.

why not also spend a couple hundred quid on going to a specialist who can then prescribe whatever needed via your GP

Can you get a referral to your infant feeding team? DD had horrible reflux - gaviscon worked for us (especially as in hindsight it was clearly developmental for her - she grew out of it exactly at 6 months), but the infant feeding team were a big help on identifying and managing what was going on. So i just needed to ask the GP to prescribe, rather than consider the issue. They also helped us with getting her weight gain up (DD dropped below 0.4th centile). You can usually self refer from the discharge pack, or your HV can help get a referral.

@Kvg888 I was exactly the same not wanting to give him something for a problem I wasn’t sure he had as my baby also has cmpa and suffered terribly with wind and was a nightmare to burp so it was always hard to tell whether his discomfort was from wind or reflux and I went back and to for weeks until I finally took the plunge and within days the omeprazole started working so I knew it was reflux and then once put on special formula we got the tummy discomfort from cmpa under control too.

I certainly do not think I know better than medical professionals - and not opposed to medication. However I’m aware that every medication has risks, such as general side effects presented on the drug info sheet and also that things can be identified later down the line - like why ranitidine was routinely prescribed and now recalled & then discontinued.

Its got nothing to do with knowing more or less than medical professionals. It’s got everything to do with listening to the right medical professionals. I was an experienced specialist in my field and could wax lyrical about meds I was extremely familiar with but I knew nothing about neonatology in any meaningful sense or prescribing in neonatology and also wouldn’t be comfortable in my own ability with a lot of off-label paed prescribing, so I was happy to be directed by a crack team if neonatologists.

Patient info sheets can’t be used as a basis for/against prescribing and are a questionable decision making tool for a patient determining whether a medicine is appropriate. One of the many downfalls is benefits, and indeed risks, are limited to on label use only. It’s a clinicians job to weighed up benefit versus the risks in total, and such a blunt instrument is moot. They are really only useful for a ‘what may be expected after being prescribed’ scenario.

The problem you describe is that you have no confidence in the prescriber, and from what you have written that’s fair enough and I can see why. The solution is not to Google and use patient info sheets to make a decision and try and problem solve yourself but to go see someone who has the appropriate expertise and you have full confidence in. That’s the solution here. I wouldn’t give your child the medicine prescribed as it stands but on seeing someone with appropriate expertise, and potentially seeking an opinion from a second expert, and be guided by them. It may transpire the medication is or is not suitable for your child.

Yes I work on nicu and it's our next go to med for reflux after gaviscon.
Give it at least 2 weeks and if it's no better go back to your gp and ask for a referral to a paediatrician.

I would, and did. My eldest had GORD as a baby and it was horrible, she was hospitalised three times. She was refusing even the bottle by 12 weeks because of the pain.

She had ranitidine and Omeprazole at the same time to get it under control. Gaviscon was useless for her, all it did was make her constipated.

She took both from 12 weeks until she was just over a year. No ill effects.

Btw, she was prescribed both by a gastric paediatrician, they were perfectly happy for her to take them, although I believe ranitidine isn't used anymore (this was in 2016).

Thanks for this message, the part of my message you quoted was in response to a pp who said “I simply do not have the knowledge or expertise they do in this regard so thinking I knew better never crossed my mind.” As you say, my concern is that I have only seen a general practitioner - who himself has advised this is not his speciality - not an expert. I know Google is not the answer either, but when you are sat with your crying baby at 1am it’s hard to not look for answers somewhere - but I know I am prob doing more damage (to my mental health more then anything) then good.

DS will either fall asleep during a feed or most likely scream after it - it is just heart breaking seeing him in pain 💔

I will speak to the HV and GP regarding a referral x

sorry that message was in reply to HoppingPavlova ❤️

Thanks for the reassurance and advice from everyone - I guess the guilt is that I see a lot of advice says a lot of babies can have reflux symptoms and it will clear on its own, and they usually only prescribe medication where there is failure to thrive.

Whilst DS did drop from the 50th to the 9th percentile, he does feed regularly and is tracking consistently at the 9th percentile now. But he is in pain a lot - we say he is sunshine and storm clouds - he goes from a beaming smile and happy guy to screaming bloody murder with a bright red face and tears streaming down his face - he is so distressed and in pain 💔💔💔

Thanks for all the comments- it’s nice to have a forum even just to hear others have been through this, there is light at the end of the tunnel x

My baby was never failure to thrive and she never lost weight either! Her GORD was still so bad that she was in hospital several times and needed a year of medication. By 12 weeks she'd got to the point that I couldn't even put a put a bottle near her mouth, she'd whack it away. She was dream-fed every single feed from that age, even after the pain stopped. It was hellish. I was so glad once she'd managed to wean - and her weaning was badly affected too - and she didn't need to have bottles or milk anymore. Incidentally, she's six now, loves cows milk and only ever gets a bit reflux-y if she drinks a lot of fresh orange juice (and even that's only an occasional mild 'sicky burp'). She really is just fine now.

Some babies do clear mild reflux on their own as they grow. Time does help it. Sitting up more helps and their throat bit (can't remember what it's called) develops to help stop the regurgitation and acid wash. My youngest had mild reflux and it went on its own. It just depends on how bad it is, if they're vomity-reflux or pain-reflux (or both!) and how bothered they are by it.

Do whatever you need to do to ensure your baby is not in pain and getting the nutrition they need. I can totally understand your worries, but honestly thousands of babies receive Omeprazole for reflux it's really not uncommon even if it is off label.

@oddoneoutalways thank you so much

My eldest dropped percentiles at 5 months, tried weaning early, tried gaviscon, tried omeprazole and it made a massive difference. He only needed it until he was 1 and then we just reduced it gradually with no I'll effects.

Personally I'd take the prescription, give it at the recommended dose for 3 weeks and then reassess and if not improvement push revisit the GP.

My daughter has never struggled to put weight on. 50th centile from birth to now. The meds were prescribed because of the discomfort she was in

OP, your sons symptoms sound exactly the same as DD did before being diagnised with silent reflux
We tried Gaviscon which helped initially but didnt resolve the issue.
GP then tried prescription formula for a possible CMPA which she is still on.
This didnt make any real difference though.
A paediatrician gave us Omeprazole though and what a game changer.
We were lucky in that after the first dose she was like a different baby.
She is on the tablets which we dissolve in water and give via syringe. As she has grown her dose has increased and she isnt far off being on the maximum but Im hoping as we wean her the reflux will improve.

I wasnt sure about using it either but im glad I did for her sake.
It has really helped her so far.

Hi everyone I hope someone can advise. My little girl is 6 weeks old she hiccups and coughs a lot. You can see something coming up her throat and she swallows. The odd time a clear water like consistency fluid comes out and it’s very acidic. It disturbs her sleep a lot although thankfully not so much through the night but I feel like I have to carry her alday and can’t get anything done as when I put her down even at a tilt in the pram with a pillow or in the upright car seat you can see the acid coming up. Although she doesn’t really seem in pain Iv seen loads on here saying about their silent reflux baby screaming constantly. She’s on Neocate and has been for 3 weeks now I think it has made a slight improvement but I’m not sure. Her sister had a dairy intolerance so the dr was pretty quick to prescribe. My dr has prescribed omeprazole but if she’s not screaming in pain but mostly getting disturbed sleep should I give it to her? Will it help her sleep. My understanding is that the fluid will still come up but just not be as acidic? Thanks in advance