Reflux - dear God please help 🙏

[CSR721]

My little boy has had a horrible feeding journey. We started off breast feeding but he had a tongue tie - midwives said it shouldn't affect him but my nipples were bleeding!! He lost 10% of his body weight in the first 5 days. We had his tongue tie separated but i was told to top up with formula and our bf journey came to an end shortly after that... he dropped from 50th to 25th centile and has stayed there since but we are still having trouble. He was crying a lot especially during and just after feeds and was bringing up lots of milk, some he'd swallow some he wouldn't it was obviously hurting him. I suggested to Dr it was reflux they weren't sure bc it wasn't every single feed eg night feeds were fine, and he's happy to lie on his back at night to sleep. We were given gaviscon to see if it helped which it did a bit but then it stopped being as effective as he got heavier. We tried to up the dose as suggested for his weight but then had issues with constipation and were told to reduce it again.

I'm at my wits end. I dread feeding him because it makes him so unhappy. We are getting through laundry like no tomorrow bc he spits up more than I can catch with a bib/muslin and sometimes it's even an hour or more after a feed so we aren't necessarily expecting it. I've tried slow flow teats, faster flow (that was worse so back to slow), we pace feed, I've tried mam bottles and tommee tippee. I don't know what else to do. If anyone has any suggestions I'd be eternally greatful. I just want my little one to be able to feed without being uncomfortable 😕

Sounds like allergies or tongue tie has reattached.

You should be given a feeding assessment before reflux meds! Need to find the reason for the reflux.

Push for milk allergy investigation. Fight it as if your life depends on it. Better to rule it out than not.

I'm not sure it could be an allergy as he is generally content between feeds once he's had some time for his milk to go down properly? Ie he will bring it up an hour or so after but it doesn't seem to bother him at that point, he's only upset by it when he's feeding and 5/10 mins or so after?

Definitely worth trying on allergy milk. Don’t let them fob you off with soya milk - babies with milk allergies often have soya allergies too. It’s worth a try at least to rule it out.
there are also much better reflux meds than gaviscon- they tend to offer that first as it is cheaper, I believe. My son needed omeprazole to sort it out.
And sadly, I second the advice to push, nag, complain and repeat until you get somewhere - a lot of gps and health visitors know very little about baby feeding issues as I don’t think they get a lot of training on it, and some are very quick to fob you off as an anxious parent.

Ask the GP to refer you to a Gastro Paediatrician and see if your Health Visitor team have specialist feeding Health Visitors. It may be GERD or it may be Cows Milk Protein Intolerance. He may need Omeprazole or a hypoallergenic formula. I’d also try the cheap supermarket, or boots own used to do them, bottles nrhey have long thin tears. Some babies get on better with them. One of mine did after me spending a fortune trying others first.
It’s miserable, I really feel for you. Keep pushing for help from the professionals.

Does he have dry skin? Hiccup a lot? What are his nappies like?

I could have written this a few weeks ago, how old is your little one? I know you said your bf journey ended but are you still pumping or is it exclusively formula now?

For mine we figured out that milk was the trigger (I'm still bf so I cut down my dairy intake which helped a lot) and gave smaller feeds more often when he got a bottle. Sitting him upright for minimum 30min after each feed has helped and pausing to wind more regularly when feeding. I find he coped better when we introduced a soother as the sucking and swallowing helped keep the acid down.

Its the bloody worst especially when they're crying sore with it. A dunk tub for colicky babies also helped him before bed.

I've a baby reflexes whose now 13...

Omeprezole is great - although I think its consultant prescribed and GPs don't like it as its expensive in liquid for which you need for a solely milk fed baby.

Another trick... once mine was fed she was put down in the floor or in her cot but raised - so we used a v pillow on the floor, or in the cot the mattress was raised at one end by something underneath it. This seemed to work to a degree. We just left her to it for about 30 mins which seemed to help her digest things.

But the pools of milk I remember that well. You might want to ask for the higher calorie formula too as that gets more in them for less volume which also helped!

Good luck ... its quite a journey!

DS had a very similar situation to your DS! Born with a tongue tie although I was told it was so minor they weren't going to operate but bf never really worked so switched to bottles and cue awful reflux. Drs wouldn't test him for allergies and I was too young and not confident enough to push for it.

Through trial and error we worked out that SMA ready made cartons stayed down far better than any other brand or any powdered milk we tried (even SMA powdered milk) - still some reflux but nowhere near as bad. It stopped when he was weaned but even now aged 12 if he eats close to bedtime then everytime he's sick in the night without fail. He also gets an upset stomach if he has too much dairy.

Try different brands and try the ready made cartons to see if that helps at all. And definitely push for the Drs to rule out intolerances/allergies.

In the meantime be kind to yourself - its exhausting and so easy to feel like you're doing something wrong. This phase won't last forever.