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! 🙈

Thanks for sharing! I long for the day where we aren't both covered in sick 🙃🙏🏼. Did you have the liquid form of omeprazole or the tablets dissolved? I know it can be a battle to get the liquid prescribed because of cost but we found the tablets a nightmare with our eldest!

We've always had the tablets, so in case you do get those (or for anyone else reading along), a couple of tips that helped us.

• The tablet disperses better in warm water than in cold.
• You want a syringe with a decent sized hole – nurofen and calpol ones work well, the ones our local pharmacies give out don't (although this may vary, I've got one from hospital that is very good).
• Don't try to squirt too much at once – at 6-7 weeks, DD2 took it 0.5 mL at a time. At 3 years, it's 2.5 mL at a time (probably could be a bit more, but the syringe is 5 mL, and that would be too much, so I do half at a time).

Thank you! I can't believe I never thought to try dissolving in warm water with my first!

We're definitely having a flare up, last three nights she hasn't been able to be lay flat in her bed as she just starts screaming and writhing around - so congested at night too. We haven't had this for weeks now so not sure what's caused this sudden bout 😔

We had liquid medication and the pharmacy gave me syringes. The problem with liquid is you can only use the bottle for so long then and the despite not being finished as they are on tiny doses you have to start a fresh one.

We gave the gaviscon mixed with water via syringe after day time feeds. Mixed it up in 10ml of cooled boiled water at her peak she was on 9 sachets a day !

The omperazole tablets are a pain to prepare. If you snap the tablets in two and add 1ml of recently boiled water and then the rest cooled boiled water you should find it goes into a suspension easier. If there's still bead in the syringe after you have given the dose you can fill up with water again. Calpol syringes are pretty awful for giving omperazole as the beads get caught in the end. We used syringes with a tip that my partner got from work. If the beads block the teat pull the syringe back rather than trying to push forward.

It can make things worse for the first few weeks as the body tries to override the meds by increasing the amount of acid.

I would push for a paeds referral, having dropped 2 percentiles I would hope they would accept it. Ours kept getting rejected as she was following a line. The advice we got from our GP was poor and incorrect. Although we have since seen better GPS it's quite varied what there experience is.

We found that moving my daughter to the upright position was a sure way for making her sick. I had to keep her in the feeding position for half an hour as any movement made her be sick

Aah I see, didn't consider that. With my eldest we had the tablets which was a nightmare as it was so gritty, tasted vile and we struggled to get it all out of the syringe

Yeah we struggled similarly with the tablets with our eldest, and the initial acid flare up with her was so awful 😩 that's what I'm nervous about again with DD2

Oh, that's my other trick with the calpol/nurofen syringes – gently rotate the syringe in between every push of the plunger so that the little beads go back into suspension. It's easier than it sounds once you've done it a few times – I don't even take it out of DD2's mouth to do it – and a lot fewer get stuck at the end.

Definitely second @Superscientist on pulling back the plunger if you get a blockage. Tapping the syringe against the table can help, too. (We've done this way too many times, @Superscientist .)

DD2 didn't get the initial flare up, so fingers crossed you get similarly lucky if you do need to try omeprazole.

Thank you for the tips, I really hope she doesn't because it was so awful with DD1 😔

@skkyelark I feel I could write a book on reflux now!
Once my daughter was older and on full tablets we switched to just mixing the tablet on a teaspoon with a little bit of water so it was more of a paste which was easier and from being about 3 and a half she's been able to swallow the tablets which has made life so much easier!

Well, we did try Gaviscon but it didn’t really help. The doctor we saw was a gastro specialist, he said for some reason they couldn’t test for allergies. I don’t know why, she was later tested for allergies but maybe was too young before. Still he decided since DD was mixed fed at that point to change the formula part to Althera which is one of specialist allergy ones. At first I thought it was going to be a nightmare because it is so thin, I figured it would come up more easily. But it didn’t make things worse so we stuck with it. In retrospect though I don’t think she had an allergy to dairy.

In the end I sent so many desperate emails to the doctor that he called us back in and checked again for any physical blockages etc, but he was adamant that he didn’t want to prescribe any other medication. That might have been because she wasn’t really losing weight. She was only the second centile at birth so she was small but not losing by that point. To be honest I don’t remember the whole time that clearly, maybe my brain was too sleep deprived to form long term memories 🙂

I think he said don’t worry this will pass, I asked when and he said probably by age 2. I was 😳😨 at how long that was but as I say we just got lucky around 7/8 months. I think weaning may have been a factor. She got a few rashes when weaning which is why we went to see an allergist who did skin and blood tests which were clear.

It’s so frazzling, I hope you have some support so you can get a bit of rest.

Thank you for sharing, I'm holding out hope that weaning will help our little girl too - it did with her big sister! I'm also not convinced she has a dairy allergy - although I've still cut it out for now. With my eldest it was very, very clear that she had CMPA and, once weaning, an egg allergy. But with DD2 I'm not convinced as we've not seen enough improvement for me to believe it's dairy.

She's currently screaming in pain, just won't lie flat in her bed. These sorts of flare ups had stopped and we'd been having pretty good night sleeps but since hitting the four month mark these last 5/6 days she's been screaming in pain every time we try and put her to bed!! I did read that they can have huge reflux flare ups around 4-6 months so maybe that's what we're seeing now? The fun never stops!!

Oh wow, two years old?! I think I'll have lost the plot by then if this carries on for another year and a half!! I'm holding out hope that once she's sitting unsupported and on solids it'll improve 🙏🏼

I can't remember the exact stat but it's something like 90% outgrow reflux by 12 months 95+% by 2 years.

My daughter is in the tiny percentage that don't outgrow their reflux but the majority of the time it's controlled by treatment and doesn't bother her. She was bad up to 7-8 months, then again from 13-16 months the 3-3.5y. The rest of the time aside from the daily medications we don't have to give it too much thought

They always say reflux even when it’s not. If it’s coming up hours after feeds I’d keep delayed gastric emptying in mind. If she keeps dropping centiles or losing weight I’d get to a pediatric gastoenterologist. I’d try the omeprazole as there’s loads of babies on that and it can help. I’d try it asap and if it doesn’t work you know it’s more complex than reflux

Thank you, we've had a referral put through today for her to see a pediatrician so I'm hoping we won't be waiting too long 🙏🏼 explained to the GP that I'm worried about masking the symptoms with a drug and not actually getting to the bottom of the cause of it all. I wouldn't have thought of the gastro issues if you hadn't mentioned it so thank you because it does make me wonder if this is what's going on!

If she is ENF, are you dairy free? My DD turned out to have a dairy intolerance causing all the issues

I've been dairy and soy free since the start of January - my eldest had CMPA & egg allergies so had previous experience. It hasn't really made much difference in DD2 though, still lots of vomiting and acid flare ups 😩

Is it worth trialling egg free to given your eldest egg allergy?

It might be worth doing a food diary, my daughter was as bad when I ate coconut and tomatoes as she was when I ate soya and dairy

Just so you know the pediatric consult may be with a doctor who doesn’t specialise in Gastro issues. They will also probably start at reflux so if I was you I’d try the omeprazole and then you’ve crossed that off the list if it doesn’t work. I went through a lot of this with one of my children and they always have to rule out the most obvious cause first. Feel free to message me if you want more info. x

Also if it’s more complex than reflux the omeprazole won’t work anyway. x