Advice & keep me going - silent reflux

[PumpingRSI]

My LO is 4 months old and he was diagnosed at 6 weeks with silent reflux. Prescribed Gaviscon which was a nightmare getting into him as he would spit it out so expressed 2 feeds a day and put it in that. Seemed to work. About 3 weeks ago the symptoms were coming back. Told by my GP to increase the dosage of Gav and more often. I wasn't happy as I knew thus meant more expressing, but ok.... 4 days later he was so uncomfortable and started refusing breast in the day so went back to diff GP and prescribed Omeprazole. 2 weeks in and I think its making it better but not loads and he still won't feed from me in the day. He still needs Gav regularly in his feeds too.

I feel like my life is revolving around expressing, feeding, burping and washing all the equipment. I can't go out for longer than 2 hour slots as I need to come home to express and feed him. My DH and DM think I'm making life harder a nd should just formula feed to make it easier for myself but I've read that formula could be harsher on him.

I'm a mix of emotions and tiredness. Is the refusing def due to reflux? Should I just formula feed? Are the drugs working?
Has anyone else had this? Just to complicate things further, he sometimes feeds from me lying down in the bedroom - so is the refusing down to.somthing else like strong let down instead? And am I making this worse by expressing all the time.

Everyone said the first 6 weeks were the hardest, but this is way way worse, and starting to get personal! Has anyone any advice, insight or comforting words? Thank you.

He's worked out that feeding (breast or bottle) is painful but is hungry. He's just taking enough to take the edge off the hunger. Honestly it's very common. Are you increasing the Omeprazole in line with his weight? It's very weight sensitive. Otherwise I'd argue for a higher dose.

You could try feeding when he is sleepy or asleep. Have you tried Dr Browns bottles?

Thanks so much. Yes it now seems that each feed is a fight. Right I'm galvanised into action. He's getting 5mg and is just over 5kg tho making sure it all goes in by syringe is another matter. Think I'm going to start spooning it in to make sure none is left over.

And to think I nearly bought the line from the hv about him not wanting boob anymore. Fingers crossed I now have a concrete issue I can get help with!!

Dr Browns, are they better and how? I'm using Avent at the moment.

Its just horrendous when every feed is a fight & so,so upsetting. I found using a calpol syringe for the gaviscon & mixing it with 15mls of cooled boiled water was the only way to get it in aiming at his cheek rather than the back of his mouth. Keep going back to your GP & ask for a referral to a specialist if needs be. Try keeping lo as upright ad possible during & after feeds. Our GP recommended building a 'nest' for ds2 to sleep in to keep his head higher than his tummy when sleeping.
Re the tt ds2 had no issues gaining weight at all with his but had horrible silent reflux where every feed was him screaming,crying, arching his back & tbh it just resulted in the whole day being one long feed broken up by crying (him & me!). I would be tempted to get a second opinion on the tt. Did the lc you spoke to specialise in tt? Try this website www.tongue-tie.org.uk. There's a list of tt dividers on there & some other useful info.

This might not work for you but I found feeding my baby through the reflux sometimes helped. So he started to be in pain and rather than stopping I would keep feeding and he would relax again. I also found giving him a dummy after a feed helped a bit as sucking seemed to keep milk down.

You have to be such a detective when your baby has something like silent reflux but sounds like you a doing really well and pieces of the jigsaw are coming together.

How long have you been on the meds like rhinitidine? ( sorry can't remember name!) Even after it works it takes time for the area to heal.

Dr Browns are anti colic bottles. Lots of people swear by them but they're expensive and fiddly to wash.

Lots of changes happen with babies around 4 months so it might be just a phase you need to push through. breast milk is the best thing for him as its easiest to digest and takes the least wind in (unless he had intolerances and needs a special milk. But once again I think you would have seen problems from birth if that was the case. )

I agree with not stopping a feed to burp etc. Just get as much down him as possible - but not over feeding as that can make things worse. Milk is alkaline so should neutralise the acid.

Winding was really really important for us, it was actually the thing that helped the most prior to medication. I used to lay him at about a 45 degree angle then watch like a hawk for signs of windiness, then up and winding with the method which worked best for us. Reflux is essentially a wind problem as the valve opens to let wind out but milk comes up too.

Omeprazole is great and its good that you have been prescribed it. I think it's just a case of getting the dose right and giving it time to work. Push for a referral to a paediatrician if things aren't improving - taking someone else with you can help if the doctor won't listen!

A hammock really helped us for sleeping too.

A bit of an update and thanks for those that helped. He's now feeding from me again and it may have been due to a few things that maybe have emerged or been sorted. Instead of giving Omeprazole from syringe I have diluted a bit and given from a spoon so can be sure he's getting the full dose. A day or so his mouth was looking milky so think he may have thrush and we have started using a gel to treat it. He is so much better since. To think I could have taken HV advice that he just didn't want to feed from me and was too distracted!! Thanks again, people have been supportive and helpful in keeping me bf.

Glad to hear things are getting better for you both, just a few words of support as I have been there with my dd who is now 6mo. We had the arching back, crying during and after a feed and I can remember vividly how awful it was. We went privately in the end to see as paediatric gastroenterologist as the nhs referral was going to take 3 weeks as an emergency referral and I was at the end

Sorry-hit post too early!
...end of my tether! We were put on meds but also advised to cut dairy and soy out which made a massive difference! So if things don't improve then maybe push for a referral and ask about intolerances.

To contradict what a pp said, they don't always present from birth, so could well explain why the issues haven't resolved on omeprazole, which if it was just reflux you would expect to get quite a bit better.

The other thing we found was that winding seemed to make things worse as when she burped she'd either reflux or actually vomit which caused her more pain. We stopped winding her and that seems to help as well. The only issue with that is with a TT you will get more wind as when they suck as the latch isn't good they'll ingest air. So maybe think about getting that sorted 1st!

So glad Lo is feeding from you again and things have improved. Thought you might like these links on thrush