DD's reflux, the journey continues...!

[TeainanIV]

Hello again! I feel like all I've done since DD2 was born was post about her reflux, she's now 4 months old (on the dot tomorrow) and today we visited the weight clinic. She has dropped another centile 😔 that's two centiles dropped - born on the 91st. We've been advised to go back to the GP and I think I'm going to have to admit defeat and put her on omeprazole.

Quick recap on the journey so far...

• reflux started around 6 weeks old, lots of screaming and bringing up lots of milk.
• prescribed infant gaviscon but didn't work and just made her constipated.
• after Christmas, sent to hospital as she was projectile vomiting. They advised to cut dairy (my eldest DD had CMPA & egg allergies). I also cut soy.
• screaming episodes have lessened but she is constantly vomiting/bringing up curdled milk or clear, flecked liquid hours after feeds.
• checked for tongue tie at the hospital (she's EBF)
• had latch checked by the feeding team at the hospital, all looked good.

I've been so resistant to the omeprazole so far as my eldest DD had it and it made her 10 x worse - although her reflux was silent and she rarely physically brought anything up. With DD2 it's almost the opposite - she is constantly drenched in baby sick!! I get through 3-4 bibs a day, and to be honest I could use more!! I just also think it's such a strong drug for a tiny baby and I feel awful giving it to her.

For those who have had success with omeprazole, did it reduce the amount your baby was actually bringing up? That's the only reason I'd put her on it! I just want to go one day without being covered in baby sick. God help us we've got a family wedding this weekend and I've no doubts our lovely outfits will be covered by the afternoon!! She's also super dribbly, which gets worse as the day goes on which I don't think helps the reflux.

I'm honestly at a loss now, I've exhausted all other avenues. The stress of her weight gain slowing though and now dropping two centiles is making me so anxious and every time she brings stuff up I'm finding it so triggering. I just want experiences - did omeprazole reduce the amount your baby vomited??

Thank you if you've made it this far, or commented on any of my other, many posts!

Edit: hoping this makes sense, I wrote a whole other post out and accidentally refreshed the page deleting it all! 🙈

Hello! I have a 4.5 yo with severe silent reflux, multiple food allergies and had physical reflux as well as a baby.

Her GP was only treating her relatively mild physical reflux with low dose omperazole and gaviscon which caused constipation and the GP incorrectly told me that I couldn't use both. She continued to be sick dozens of times a day but not a huge amount but had feeding aversions and screamed and was unhappy for 16-20h a day! 4 months was crunch point. We ended up seeing a paediatrician for something else, I had a food diary with me and there was a clear pattern with soya and her symptoms. He diagnosed severe silent reflux put her on to the highest dose of omperazole readded the gaviscon and we accepted a prescription of lactulose for the constipation. He said it was unlikely to be allergies but worth looking at cmpa and soya allergy. In the end we identified 20 food allergies! She ended up on the maximum dose of omperazole for under 2s by 5 months and as she grew the symptoms returned so we ended up adding a third medication domperidone which speeds up the emptying of the stomach. She has been on this combination for 4 years now and it has made a huge difference.
The high dose omperazole and gaviscon reduced the amount she was sick maybe one or two small possets a feed rather the continuous posseting from one feed to the next. She didn't seem to have weight issues as she was following the 9th percentile nicely but following the high dose meds and dietary changes she moved up to between the 25th-50th percentiles! Her reflux has gone in and out of control. For us it's quite cyclical whenever she has a growth spurt it gets worse again then she gets stronger it improves until the next growth spurt. The best period we have had with her reflux was 9-13 months when she stopped gaining weight as she wasn't engaging with weaning. Teething made it worse and colds also make it bad.

Her feeds improved immensely with the meds and diet. At her worst just before hand would be 10-12 5-10 second feeds during the day. And 3 10 minutes feeds overnight. No idea how she was gaining weight. She went to feeding every 2ish hours and taking a proper feed each time. We also had a development check just before hand and she was in the "concerning category" she didn't smile, couldn't be put down and didn't respond to sounds within 3 weeks of the high dose omperazole and dairy and soya free diet she was perfectly average!

Hmm. Interesting you have said she’s bringing up curdled milk. I had a baby that did this and it was delayed gastric emptying not reflux. I’d try the omeprazole and if that does not work as for a gastro referral.

Are you sure it's reflux and not actual vomiting? Hopefully my experience is rare but my DD was prescribed omeprazole for reflux when it eventually turned out they were vomiting due to a congenital bowel issue that required surgery. I'd still probably try the omeprazole and just see what difference it makes.

Also the dribble can be because of the nausea and stomach acid/delayed emptying. Hope it gets better with the meds

I've had two DDs with reflux. Both of theirs were manageable with gaviscon alone but I was told by the HV that ideally you need omeprazole and gaviscon for optimum results because they work in different ways. Omeprazole neutralises the acid to stop the pain and gaviscon thickens everything to stop it coming up as easily. DD1 was a "happy" reflux baby - absolutely masses of sick every feed, constantly streaming out of her mouth, but never bothered by the pain. DD2 was totally grizzly but we managed to get it under control with gaviscon so never ended up using the omeprazole in the end.

A couple of other things that come to mind -

• if you dont want to get into a gaviscon + laxative trap, don't give the full gaviscon dose. Both DDs only needed half the dose on the packet to thicken enough that it reduced the vomiting without causing constipation (we still had some but a lot more manageable!) You can still do that alongside the omeprazole.
• who checked for the tongue tie at the hospital? We saw 6 or 7 NHS midwives, bf specialists, HVs who missed DD2s. Finally diagnosed at 8w by a private tongue tie specialist. Hopefully it was an infant feeding specialist that you saw?
• I'm sure you know this but once you start omeprazole, you can't just stop. You have to wean down, so i wanted to have a plan for what to do if it wasn't working (although it takes several weeks for it to make a difference anyway).

Thank you for sharing - I know we've spoken on some of my other posts and I can't imagine how tough that must have been for you as a parent. I'm so glad to hear you got to the bottom of it in the end.

I feel like we're having a particularly bad flare up at the moment - not sure if it's from teething or a recent cold, but she's been so much worse than normal. Constantly bringing up liquid, hours after feeds. It's basically constant! Prior to this, I felt as though it had settled.

DD is now on the 50th centile but was on the 91st at birth so she's dropped two lines. She is gaining but very slowly. But despite that she is very happy in herself - a very smiley, vocal baby! The intense and painful screaming has massively reduced and isn't anywhere near as often as it was.

I really don't know what's for the best and, whilst I know the GPs do their best, I don't feel like they really know what to do. I want her to be seen by a pediatrician as I feel babies are a whole other kettle of fish!

That's really interesting, I'd never considered that! She brings up a mix - curdled milk, clear liquid with flecks in and possets too. It's basically constant between feeds and it doesn't matter what position I feed her in or how long I keep her upright for!! My GP is lovely but I don't think she really understands - it just seems to be an automatic assumption of reflux and prescribed drugs but I feel like there's more going on and don't want to just treat the symptoms without getting to the bottom of the cause

Like @Superscientist (waves), I've been playing this game for awhile now – DD2 is now 3, and has been on omeprazole since she was 6-7 weeks old. For us, it reduced sickness, but did not stop it. She'd dropped a centile line and a half in weight, and her weight centile was 2.5 centile lines below her length centile. Omeprazole got her back to her birth centile for weight and more in proportion. It also made a huge difference to her pain, but that's less relevant if you have a 'happy spitter'.

DD2 did not tolerate carobel or gaviscon, so we couldn't try also giving her a thickener. During our brief trials of those, it did seem to be basically trial and error to try to find the correct dose.

My DD2 started out as very grizzly and would scream in pain, but this has settled and is far less frequent - she's now more of a 'constantly-has-fluid-pouring-from-her-mouth' baby 😅. I laugh but I find it so triggering now as it is relentless. i find myself anxious after every feed because I can hear it gurgling and then coming up. She's also so so wriggly all the time and I feel it's because she's uncomfortable - she doesn't get upset but it's like something is irritating her/causing discomfort.

It was a feeding specialist we saw at the hospital - although it is was a bit of a fiasco. We've seen two feeding specialists now who ruled out tongue tie, although I've had others say similar and that it was only going private when they got it assessed.

Yes we have experience of omeprazole with my eldest but it made her so much worse. I'm still so triggered by the experience which is why I think I've been so against it second time around. Can I ask, with the gaviscon did you syringe it by mixing with water? I had been trying to mix it with expressed milk but not confident she was getting all of it

This is my worry as she's now dropped two centile lines 😔. I'd say she is, give or take, a 'happy spitter' now - it's just the volume and frequency of liquid she brings up that worries me. Today has been a particularly bad day - so much sick and it's been quite violent too, not quite projectile but regularly shooting out and all over the floor. I'm finding it so stressful as each feed I feel like I'm bracing myself for her to immediately throw it all up, and for hours after to!

I've found it hard giving the gaviscon as I struggle to express enough for bottles for every feed - I hadn't tried to just syringe it with water but maybe I should. I'm just so hesitant to use the omeprazole of it's not going to reduce the amount she brings up - I feel like the pain aspect of it is a little more under control now

DD1 was under the 0.4th centile line (maybe around 10th at birth? 2.6kg at 38w) and I topped up with formula the entire time i was breastfeeding. So I just put it in the formula. Sorry if that doesn't help!

Hmm I'm not sure, this may sound daft but I'm not sure how I'd tell the difference! It's not just milk she brings up - it's often curdled or sticky, or white-flecked, clear liquid with a strong, unpleasant smell. But she's pretty nonplussed when it happens, although I don't know if that's just her getting used to it as it's so frequent. We seem to be having a particularly bad flare up these last few days - I had felt like it wasn't quite as bad but it's back with a vengeance!

Aaah I see, she's exclusively breastfed at the moment. I haven't tried formula as there was an assumed dairy allergy there and the dairy free formulas are pretty vile!

Yes I've heard that too. We were not topping up by choice - only because she was so so tiny, so if you can make EBF work, it's definitely worth sticking with. We also found everything changed at weaning and started to get much better.

This is what I'm holding out hope for!! I had been trying to persevere until weaning but now she's dropped another centile line I'm not sure what to do 😔. So glad things have improved for your little one! My eldest is a dinky dot, born on the 5th centile, and still (at 3.5 years) has 6 monthly growth checks at the hospital. As a result I find baby weight very triggering and even though DD2 is a chunk in comparison to her big sister at this age, now that she's dropping so much I'm starting to get stressed!

So for us, it definitely reduced it enough that it sorted out the weight gain issue. I also sympathise with the 'sick everywhere' issue. It was a milestone when I felt able to leave the house with DD2 without a full change of clothes for me as well as multiple full changes for her.

When we trialed carobel and gaviscon, we did it in a syringe made up with breastmilk, so I only had to express a small amount. DD2 was too young to have it made up with water, which would be even simpler if baby will take it.

Yes, I think the worry never really goes away after you've had one that has "failed to thrive" (hate that term!) DD2 also was a little one but seems to have been able to maintain her centile a bit easier - she was born on the 25th, dropped two but caught back up once we got on gaviscon and has stayed there since (currently 11months). It's definitely been a challenge to know when to worry and when to relax a bit.

Oh god I know, the amount of washing we have is horrendous - everything just gets covered in sick!! She goes through so many outfits, muslins, bibs and we go through so many clothes! I've got a nice dress for a wedding this weekend and I just know it'll be covered in sick stains by the time we finish the ceremony 🙃.

Sorry can I just clarify - did the omeprazole reduce the amount she vomited? I just can't make my mind up on it!

I hate it too, we had so many comments (and still do) about the size of out eldest! When we had DD2 and she was on the 91st centile I thought we'd have it easy and wouldn't need to worry - how wrong we were! Thank you for sharing your experience and the advice x

Yes, omeprazole reduced the amount she was sick and her weight gain improved. It was to the extent that every time she had a growth spurt, the sickness would get worse again until she'd had the dose adjusted to match her new weight, so I can be very sure it was the omeprazole making the difference, not just her coincidentally outgrowing it.

That's really good and it obviously did the trick like you say! Did you find it tricky to wean her off it? Were there any side effects of it? With my eldest it made her so much worse but hers was silent reflux, no actual vomiting, and completely related to CMPA so it made sense why the omeprazole didn't really work!

I haven’t got any specific advice but just wanted to send support, I have been there and it’s so tough and upsetting. I had several childcare professionals tell me they had never seen anything like it.

I know what it’s like to be change their clothes three or four times in a row without even getting them off the changing mat, to see them wake with vomit around the mouth or bring up milk or projectile vomit ages after a feed. To never be able to put them down. It’s so tough and I don’t know if it’s your first, but for me it was and I got a lot of ‘oh all babies spit up’.

Just wanted to offer the hope that although we never worked out either a cause or a solution, around 7/8 months it just started to naturally vanish. I really really hope similar happens for you,

Thank you so much, this reply made me a little teary. Honestly it's been such a rough 4 months. She's not my first, my eldest had awful silent reflux which we eventually found out was due to CMPA & egg allergies but she was rarely sick. With DD2 we've had both but it's the physical vomiting that's been the hardest - I'm exhausted by it and it feels so relentless. I am clinging to the hope that she'll improve once she's sitting independently and on solids but now that she's dropped two centiles I'm starting to panic. Did you little one lose weight? Did you trial any medication? I feel so deflated with it all as nothing has worked so far.

Unfortunately, DD2 is that rare case who hasn't yet outgrown her reflux, so we've never weaned off it (she's been under the paediatrician for it since she was about 15 months old). It's been tried, but sickness and pain have always returned. We can tell the sickness is reflux, not normal vomiting because it still just sort of fountains out of her with none of the force or retching noises of normal vomiting. It is ever so slowly improving, though, and now she's rarely actually sick as long as she has the omeprazole.

No side effects, although we've been told to be extra sure she gets her vitamin D supplement.

Both my 12 and 10 year olds had both omeprazole and doperidine as babies and don’t seem to have suffered side effects. Both have grown out of their cmpa and egg allergies.

I was lucky my local Gp was also a paediatrician but I remember them being weighed every two weeks then having to phone in and wait for the dosage changes. I knew all the local Heath Visitors.

both mine made good improvements in contentness and weight, although could still not lie them flat. But medicated they were. Safe to hang out in a sling and not constantly cover me. Bought many a charity shop outfit for myself.