Reflux - not sure what to do next?

[Amber42]

My baby is 15 weeks, I'm breastfeeding and he has had reflux pretty much since my milk came in. We've now been to the doctors 6 times, got referred too early so paediatrician wouldn't see him and advised Gaviscon. This took the edge off but wasn't much more effective than that, been trying to get seen again or prescribed something else and finally got ranitidine after GP wrote back to paediatrician to prescribe it. Trouble with this is she said not to take alongside Gaviscon so he can't keep it down, tried giving it at different times but it just gets thrown straight back up again. Without Gaviscon he's sick constantly unless he's asleep. GPs have been very unsupportive, said he's weight gaining so they're not concerned (he's just on second centile curve), when I've said he's in pain I'm told that's very subjective and I should just give him paracetamol (?!). When I've said I gave feeding issues I'm told to discuss with HV.

He screams mid feed almost every feed except at night, going rigid and it takes a few attempts to get him to continue feeding. From birth he's been uncomfortable on his back, frequent hiccups, congested, gagging, unsettled, back arching etc. It's getting so I don't want to feed in public as he just screams. Not sure what to do next, do I keep pushing for another referral/try formula/go back to Gaviscon/try both? Any advice appreciated!

[Idontknowwhoiam]

Hi
My first son had horrendous reflux and it did get better after about 4 months. We suffered through breastfeeding and trying without much luck to administer gaviscon.
My new baby (4 weeks) had the start of it and my new hv has told me to cut dairy products out of my diet. Not just milk... all dairy and anything containing milk products.

It made a huge difference in a week and I wish someone had told me this with my first son as I think we would've all been much happier.

One lady at the breastfeeding group I go to is dairy free but her son is still taking ranitidine. I have to try this out for a few more weeks to see if he needs anything else but I think he'll be fine.

Please don't go onto formula as it will have a higher amount of cows milk protein and will likely upset your little one even more.

Good luck x

[DearTeddyRobinson]

Is there any way you could see a paediatric gastro specialist privately? If you are near London I can give you a name.
PP is right, reflux and dairy intolerance are often linked, if you think you could cut out dairy?

[Amber42]

We couldn't afford to while I'm on mat leave I don't think. I asked GP about cutting out dairy and they said if it was an intolerance he'd be exhibiting other symptoms such as a rash/eczema, and also to try drugs first otherwise we wouldn't know what was working. It might be worth a go at this stage though.

Keep being told by GP it will get better when he's on solids and we're going to try weaning early, but this annoys me, you wouldn't say that to an adult and expect them to suffer in the meantime.

[Amber42]

Thanks for replies by the way!

[GrimmauldPlace]

DD suffered terribly with reflux. Luckily the gaviscon did help. Have you lifted the head of her cot so she's not laying flat? I found with DD that I needed to keep her upright for a while after a feed as well.

Is your HV good? Some of them can help give the gp a kick up the bum if they think there is more they can do.

I also suffer with reflux, no idea if it's the same as when babies have it but I find dairy makes it a million times worse. I'm not intolerant to it though, I just can't have any when I'm having an attack.

[Idontknowwhoiam]

I got told the opposite! Diet first then drugs!
My kids didn't have any rash or anything similar, allergies produce rashes whereas a transient lactose intolerance or cows milk protein intolerance doesn't tend to.
To give you an idea, my son slept on his own on his back all night after a week without dairy (woke for feeds) I've taken three small antibiotic tablets that contain lactose and he's got his symptoms back. Back arching, fussing, acidic sick, green nappy and crying :(
Maybe worth a try for your sanity!

[Idontknowwhoiam]

Ps I only say that the intolerances don't from googling and my hv groups experiences x

[Amber42]

It's so inconsistent, we seemed to get told different things by different GPs but not one mentioned my diet, it was me who asked them. I did actually try no dairy for a week before they told me not to and it didn't make a difference, but I think it's worth another go now.

My HV is ok with advice but she's not really getting involved with what GPs are doing, one of the others told me they can put pressure on and I asked her to but she said she'll monitor what they're doing.

We have one of those next 2 me cribs so that's tilted and I try to keep him upright while feeding and then pretty much all the time he's awake apart from some tummy time. He's slightly better on his back now that when he was newborn but is still suffering I think.

[rebeccahazel]

Poor you and baby, reflux is dreadful. My 24 week old has had it since about week 2, and it's awful to see.
We also went through the gaviscon, ranitidine route, but after both failed to do much, and me being insistent with the GP, he was prescribed Omeprazole - 10mg a day. It's a bugger to get down, it's a dispersible tablet, but has helped quite a bit.
He was still suffering a bit so I cut out dairy for a month but noticed no difference. It's definitely worth trying though. We've just been back to consultant and she has doubled his Omeprazole dosage, so hoping that will help.

Might be worth asking the doc directly for Omeprazole? You can run it alongside the gaviscon (2 hours apart) until the Omeprazole kicks in, which can take a couple of weeks.

[GrimmauldPlace]

Just wanted to put out there a suggestion that was given to me but I never tried. A friend had the same problem with her DC and she took her to a cranial osteopath (I believe that's what it's called) and she said it worked wonders. Might be worth looking in to.

[Amber42]

Thanks so much for suggestions, someone else suggested cranial osteopathy actually, I'll look into that too. I'll see if GP can try anything else if cutting out dairy doesn't work, but they've said they can't prescribe anything other than Gaviscon without paediatric approval, took us 3 weeks to get approval on ranitidine as the GP sent a second class letter to ask about it! Feel like they're purposely delaying things and fobbing us off.

[Mopydope]

Definitely, definitely drop dairy from your diet! I found that the GP wouldn't listen until I could confirm an improvement in DD1 after stopping dairy. Dairy-free breastmilk (and eventually prescription formula) along with ranitidine and omeprazole were the answer for us.
With DD2 who also has the same issue we have had appointments with a paediatric dietitian which have been really helpful.
I know it's hard going back to the GP over and over again when you think they don't listen particularly well but it's worth it :). Good luck!

[Mopydope]

-If GP is particularly awful at responding maybe you need to take a trip to A&E to when symptoms are particularly bad to access paediatricians-

[rebeccahazel]

Sounds like you might need a total change of GP! I know lots of reflux babies and they have all ended up on Omeprazole, ranitidine or dairy free diets after guidance from helpful GPs!
Definitely second the trip to Kids A+E too, they will get you sorted much sooner.
Do look into cranial osteopathy or craniosacral therapy, heard lots of good things about the former and we found the latter really helpful too.

[Amber42]

No other GP surgery will take us as we're not in catchment, although we've had more success with some of the younger GPs at our practice, you just have to take an appt with who's available that day. I didn't think of going to A&E but that's an option if it gets really bad, been trying to get it sorted for about 12 weeks now so it's getting a bit ridiculous and I'm now reading there can be permanent damage to the oesophagus from untreated reflux.

We'll try the dairy free and oesteopothy definitely. Managed to keep a bit of the ranitidine down yesterday and there was sickness but no crying during feeds so that's a step forward.

[tireddotcom72]

My dd had horrendous reflux - she ended up in hospital a couple of times as the stomach acid kept burning her oesophagus. I ended up weaning her at 14 weeks on advice from peadiatricion. She ended up with ranitidine and omeneprozale and has been on them for 12 years now. She never grew out of the reflux and has been tested for coeliac disease, allergies intolerances etc. Eventually she was diagnosed with cyclical vomiting syndrome.

[Amber42]

Oh gosh, that sounds awful. People keep saying they grow out of it but I've read a few stories of babies that haven't. Hope it's manageable on the meds now.