Omeprazole / reflux / CMPA….

[Bella0831]

Hi,

writing this out of desperation at 5am.

our baby boy (4 months old) seems to be in so much pain. He wakes up screeching and crying and rolling around to get trapped wind out that seems to be stopping him from getting any kind of decent sleep. He arches his back in the crib, kicks his legs frantically and let’s out the most awful cry that breaks my heart. I’d say for the last week or so he’s been waking like this. I had sacked off the bedside crib and ended up co-sleeping which improved marginally but now even that isn’t working.

We’ve been on Omeprazole since approx. 4 weeks for reflux - does anyone have any experience of this causing tummy discomfort? It’s so hard to know what it is but definitely wind, perhaps stomachache / bloating but the wind seems to be the biggest problem; as once he wakes up he wriggles about a bit to let it out and seems eased but ten / 15 mins later will wake again. I give him tummy massages, bicycle legs etc put it doesn’t seem to work.

we’ve just completed a trial of no cow’s milk to see if possible CMPA - to be honest we noticed absolutely no difference during the trial but it’s definitely been a lot worse in the last two days since I’ve been back on cow’s milk.

our GP is lovely but to be honest a tad useless - they won’t see him in person and the response is to just increase the Omeprazole dosage but that doesn’t sit well with me and I’m feeling concerned that he’s been pumped full of medication for 3 months of his life already that I’m not positive is even making any difference. He’s already on a 20mg tablet - the highest dosage for his weight (7.3kg). He still sicks up a bit but not after every feed like he used to. It’s so hard to know what is a ‘normal’ amount.

he is breastfed most of the time but has 1 bottle of formula a day that my partner gives in the morning so I can get an hour or two’s sleep and to mask the taste of the Omeprazole (we’ve tried in breast milk / gripe water but it didn’t seem to disguise it and if given straight he just spat it out). While on our cow’s milk free trial we were prescribed a hypoallergenic formula that smelt absolutely rotten (like dry dog food!). Baby hated it and would push the bottle away and cry when we tried to give it to him. Formula was the only thing we could manage to get his Omeprazole down but while on the cows milk free trial we struggled giving him his meds as he would literally just spit it out any other way or refuse the bottle. Friends did suggest putting vanilla extract / nesquik in to mask the taste of the hypoallergenic formula but I’m not sold on the idea!

sorry a bit of a long post but I guess I’m after a sounding board for advice other than our GP…it’s hard to know what is causing it, whether it’s CMPA or side effects of the Omeprazole, as we re introduced both at the same time as he wouldn’t take his meds during the trial. My thoughts are to drop the Omeprazole if it’s not making much of a difference and see if that helps? And if not to go back into no cows milk but perhaps with a different formula. I’ve seen SMA do a soya one for cows milk intolerances - has anyone used this?

it seems to be really bad at night because he is laying on his back - during the day he tends to just sleep on me on his front which doesn’t seem to cause him much discomfort: I know we can’t go on like this forever and something needs to change but he’s still young and I feel so guilty.

my partner insists we just put him in his own room as we’re getting zero sleep but im not comfortable with that and I hate the thought of him being alone and in pain.

I want to help him so much but I can’t see the wood for the trees at the moment. Any thoughts / advice / past experiences of this would be hugely appreciated x

Omeprazole does not cause what you are describing.

Sorry to read how difficult things are right now, reading your post took me right back to those early days!! I also felt so hopeless back then, my poor boy had terrible colic and reflux issues and we pretty much tried everything.

I found a vibrating rocker / chair helped immensely. I also found what I thought was liquid gold.. boots sell it and it's called colief (tiny little bottle) two drops before feed on the nipple / tongue or in the bottle made a world of difference.

The reflux with my second child was just awful. I tried all sorts of non dairy milks and he refused them all.. to this day he has issues with dairy and throwing up and he's into double digits. The organic milk seemed to help a little but it really was a matter of time and damage limitation.. keeping him upright, sleeping on his side, I co-slept for the first 3 years with him and got very used to catching sick 🥴

These early days are so bloody hard, it will get easier in time! xx

I don’t know about babies but I’m on the same dose of Omeprazole for acid reflux and I’m 12 stone. I don’t have stomach problems with it but then I’m not a little baby with a new digestive system.

sorry I can’t help, I had the same problem with my DS was he was little, he grew out of it when he spent more time upright, maybe 5-6 months? Hope it works out for you soon.

This all sounds very familiar. I had the same with my DD, its just awful isnt it.

Some of the the things that jump out from your post....

Omeprazole wont be causing these symptoms so I wouldnt stop giving it.
It can take up to 8 weeks to get into the system and have an effect.

Omeprazole should be given at least 30mins before a feed. It SHOULDNT be given in milk. Giving it in milk basically reduces its effectiveness.
It needs to be dissolved in an appropriate amount of water and given directly into the mouth. This depends on the dose and how you have been advised to give it.
Our daughter is on 15mg so we use 1 1/2 tablets and dissolve them in 5mls of warm water on a medicine spoon. Smoosh it down with the end of the syringe, suck it up and put it in her mouth slowly. Its not easy to do but a noisy toy dangled above her and lots of praise helps.
Its not nice when they dont like the taste but its an amazing drugs when it works at its full potential. As awful as it sounds, baby has to get used to the taste and get into a routine.

You say you didnt notice a difference when dairy free, but it has been worse since dairy has been added in. That tells me there could be CMPA here as well.
CMPA and reflux actually go hand in hand sadly and the symptoms for both conditions are the same so many children, like in my case, are treated for both regardless.

At 4 months I would not be moving baby to thwir own room. It does also go against all the safe sleep guidelines. If your partner isnt happy about getting a disturbed night sleep, maybe he could go into the spare room or you both take it in turns during the night so you both get periods of rest.

My GP was appalling if I am honest. Im surprised they even gave you Omeprazole as mine refused to give any meds.
You need to ask for a referral to a paediatrician. They are much more helpful and can advise correctly on silent reflux and CMPA.
I would suggest a hydrolysed formula, Omeprazole and Infant Gaviscon.
That combination turned my very sad, constantly unsettled, vomity baby into a little ray of sunshine.
Its so so hard to begin with but under the right medical professional care you will formulate a plan.
Good luck 😊

Don't try anything with soya in it, 50% of babies with cmpa are also allergic to soya.
My baby was the same, didn't feel like cutting out milk made things better, but was definitely worse when reintroducing. Turned out he had multiple allergies including but not limited to milk.
However, if you're giving him formula it will mask any potential improvement.
I had the same experience with omeprazole and reflux, but once we figured out all the allergies he didn't need medication.
Look up The Crazy Reflux Lady - reflux is a symptom not a diagnosis.
Consider seeing a Lactation Consultant who specialises in fussy babies, you would have to go private, but you're looking at 100-200, so not astronomical. Shel Banks etc
Consider going dairy and soya free.
Read nice guidelines so you know your rights with GP.
Ask to be referred to paediatrian/dietician/allergist

How long did you trial no cows milk for? I breastfed until 6 months and my little girl is now on pepti 1. I stopped all dairy from 4 weeks old and it took a few weeks to notice a complete difference but they do say it can take up to 6 weeks. She was like a new baby tho.
she was also on omeprazole which constipated her so she also had laxatives… I took her off both at 4 months old.
as soon as he starts rolling, he will more than likely sleep on his side or front x

@Bella0831 ah I feel for you! I feel like I could have written this !!!

Ask your GP to be referred to a dietitian
I did that a few weeks ago and have our app in 2 wks

My bubs is on omaprazole and aptamil pepti 1 but I'm worried you didn't trial the milk long enough? My GP although haven't been amazing from reading other posts they've been better than some. We tried gaviscon but that didn't work for us. My GP said they won't advise changing the milk again as it needs at least 6 wks to work. It's been around 4 and they said to wait for the dietitian now

I can always update you on what they advise us as my hubs sounds very similar to your baby's symptoms if you would like?

I would not be moving baby into another room!
We can't sleep with our noisy grunter but we do sleep in shifts otherwise we would get no sleep

Weekends we divide 10pm-10am so I slept 10-4am and then we swap and my partner sleeps 4-10am so we both get a 6hr solid stretch - just needs somewhere else to sleep
Would this work for you?

X

Hi all,

thanks for your advice. It was actually our GP’s recommendation to give the Omeprazole in his milk. And my thoughts re the Omeprazole causing wind etc is that on the leaflet in the pack, it says side effects include abdominal pain, flatulence, effects on the stomach and gut, constipation etc.

they actually put us on Omeprazole without seeing him in person and from an early age (4 weeks) no questions asked - I’ve read about other reflux cases being given gavisxon and other drugs first and having to continuously ask for Omeprazole so I was surprised they gave it to us to be honest.

I agree with not putting in his own room, as I say I’m not comfortable with that. My partner has ended up in the spare room most nights this week and we swap around 6am so I get an hour or so’s undisturbed sleep.

thanks for sending over the baby reflux lady - I’ve gone into a complete wormhole browsing her Instagram during one of our night wakings ☺️

it’s so hard to knowing what amount is ‘normal’ to bring up after a feed. I do have an appt with breastfeeding counsellor next week so will ask them for advice and if not look into a lactation consultants or paediatrician.

our GP said two weeks off dairy two weeks back on so perhaps I’ll just give it a bit longer and see if it takes any effect!

x

@Bella0831 the advice from your GP is very poor.
Cutting out dairy for 2 weeks then reintroducing it is pointless. Especially if youre purely breastfeeding.
The minimum amount of time to cut it out is 6 weeks.
Ask for a paediatric referral to get se proper help. It was the best thing we did for our DD.

Oh I so feel for you my baby had issues with silent reflux and cmpa too and it was awful!! My son was put on an amino acid formula which has absolutely no milk protein in it however he was still struggling with his tummy until we changed him to SMA alfamino which has no soy either. We thought his tummy issues were down to the omeprazole but we have had no problems at all since cutting out soy.

i found rockabye_hub on Instagram and the “silent reflux, reflux, cmpa, allergies & intolerance in babies” Facebook group really helpful x

Definitely try dairy free for longer, soya free too. Also keep a food diary and see if it's worse after certain foods (it can take 72 hours from you eating it to them reacting).

We were told to put two large books under the head end of the cot- the slight tilt helped keep the milk down.

Rantidine didn't work but Omniprozole dissolved in water and Gaviscon did help- not completely but it did help.

My baby was very Prem so we were lucky enough to be under the care of a consultant until she was 3, so we were able to talk through all of these issues. I would ask if your Drs' practice has one particular Dr. who specialises with babies.

What is the 'hypoallergenic' formula? Most of these contain cmp just broken down. They're not suitable for severe cmpa babies, who need amino acid formula.

Which formula did you use? It sounds very much like my 5mo dd who has cmpa and reflux. She's on amino acid formula and omeprazole, both of which have really helped. She's still very sick, the paediatrician said basically the only thing that stops help here was weaning. We're starting her this week. Don't make my mistake of discounting cmpa! If bf you need to be dairy and soy free too. If you've had nutrimigen or pepti 1 you need to go back and ask for sma alfamino or neocate.

Hi @chocsaucestrawb if you wouldn’t mind letting me know how you get in that would be hugely helpful! Doing shifts in the night would be an idea, we did that when we first brought baby home. I never knew sleeping babies could be so noisy, especially refluxy ones - Whoever came up with the phrase ‘sleeping like a baby…’!

The hypoallergenic formula was one prescribed by doctor for management of cows milk intolerances - can’t remember the name bjt comes in an orange and white pot with a light brown lid. Smells vile! Will check the name tomorrow and let you know:

I hadn’t thought of discounting soy, so I’ll try dairy free a little longer cutting out soy milks too. Anyone know a good replacement milk for a cup of tea??

weaning early was suggested to us but I’m a little worried as he’s nowhere near sitting up on his own but his hand eye co-ordination is on its way - sometimes he’s able to put his dummy back in if it falls out (not always).

we do pop his crib on a slight incline - we have the tutti bambini bedside crib which has the option to raise one end - although recently he’s ended up in the bed with me just so I can get some form of sleep in the night:

When it was suggested my son was CMPA I was told it would take a minimum of one month after removing dairy from my diet before I would see an improvement in my son’s symptoms (which were the same ones you are experiencing).

Two weeks is not long enough for the effects of taking diary out your diet to see an improvement in your babies symptoms.

Aptamil anti reflux formula worked for DS….couldn’t believe the difference even after just one feed.

We were told by the Infant Feeding team at Alder Hey omeprazole does in fact contribute to an increase in wind and tummy discomfort and it gets worse the higher the dose.
we started to wean our baby off it when he started to clamp his mouth shut and/or push it out with his tongue and noticed a big improvement in his tummy discomfort once he was fully off it (by 5 months-ish).
does your baby have any other symptoms that makes you think it’s cmpa?
again our baby has confirmed cmpa and has been on Nutramigen (the stinky one I think you’re describing) but had to move on to neocate. Unfortunately they don’t taste great and the best option is not to crack before they do. Babies will eventually drink it. Awful I know. We’ve been there but it’s the best thing for your baby if they really do have cmpa. We were advised to try when you know they’re really hungry so they’re slightly less bothered but it did take a while for us too but it was worth it. You could also try mixing with your own milk and gradually reducing the amount if that’s an option?
it also might be that the milk isn’t fully out the system and you need to stick with Nutramigen longer or you need to be moved onto a fully synthetic formula free from any cow’s milk like neocate.
I would also try cutting out soy. Probably oat milk gives the most decent cup of tea btw.

@RedHerring24 ty for sharing your experience. With this combo:
“hydrolysed formula, Omeprazole and Infant Gaviscon”
how did you administer it?
was it the Omeprazole 30mins before a bottle with gaviscon mixed in?

Thank you in advance.

**@Clovers888

We would dissolve the Omeprazole and administer first and then wait for 30mins before any food/milk.
The Gaviscon we would just add to the formula. She was never on a full dose as she suffered from bad constipation on it so we would use half a sachet in each bottle.
She is now 14months, we don't use the Gaviscon anymore and we did reduce the Omeprazole for a while but she's still on 10mg

@Bella0831 & @chocsaucestrawb sorry, I know this is a zombie thread, but I am experiencing similar with my baby (8 weeks), and wondered how this all worked out?

I feel my GP is dismissing my concerns. Baby has the hysterical crying and discomfort at 5am most days, as well as reflux and a rash on face and chest. Baby cries a lot in the day too. Baby is currently on 3.5ml of Omeprazole. We skipped gaviscon to avoid constipation.

I think I now need to push for a referral.

Find an osteopath who specialises in babies. They should help you instantly