How do I know if its silent reflux?

[Cindy1802]

My little boy has had a bit of a miserable start to life. From he was 2 weeks he screamed the house down every evening without fail, with "colic". My first baby had colic and this was just so much worse, we'd dread the evenings coming, poor thing was in so much pain. His sleep never improved from newborn days, but I was just told that I had unrealistic expectations of baby sleep, and some babies just don't sleep well. We'd had HV here and she said nothing of concern.

Fast forward to 8 weeks and I started to feel like it wasn't normal. He had mucus in his nappies, a mild rash around the back of his neck, the screaming, excessive wind. Rang a different HV and she agreed it could be CMPA and to cut out dairy. Saw GP that week who also agreed.

Since cutting out dairy from my diet (he is EBF) the nappies have improved, as has the excessive wind and the screaming has gotten much better (more often than not we have no screaming), however sleep is still horrific. This weekend we basically napped for 45 min intervals all night. I was speaking to someone over the weekend who I was lamenting over the lack of sleep and hoping that sleep gets better soon now that we're almost 3 weeks into dairy free, and they suggested it could be silent reflux. But how do I know?

For context he goes down in his cot, sleeps for 10 mins and can waken up screaming and will only be settled by boob even though he's just had a good feed. Or can waken up 45 mins later, same thing. When he's in pain, he hates being put on his back. He is really uncomfortable on the boob sometimes, has 3 sucks then delatches, then latches again and this goes on and on and he's super frustrated and uncomfortable, wriggling and arching away from me but i know he is hungry. I thought this was because I had a fast let down so I had started to try and solve that issue.

Any one think this sounds like silent reflux, or just CMPA?

It could be silent reflux, it could be other food allergies it could be both.

My daughter has severe silent reflux still requiring a lot of medication aged 3y but she also has a lot of food allergies and these cause her reflux to be worse.

Have you removed soya as well as dairy? I think I would probably try this as half of babies react to both soya and dairy. I would start a food diary and approach your GP about the silent reflux. The first treatment is usually gaviscon which is a faff to give breastfeed babies, often bungs them up and can mean a stool softener such as lactulose is required. The next approach with omperazole. For my daughter she needed the highest dose of omperazole and as much gaviscon as. I could get in her and starting to remove her allergens. This improved her a lot but further medication and identifying allergens of her allergens got her to managed position. Her reflux goes in and out of being managed.

You description of the feed is a lot like my daughters and she ended up only having 5-10second feeds. I had a fast letdown and she coped better with lying down feeds. Once we had a better handle on her reflux and allergies feeds like this became one of her earliest warning signs for a food reaction.

@Superscientist no I haven't cut out soy yet, and tbh I'm a little bit daunted by it, as far as I understand there is soy in a whole lot of things?! I'll start to take a food diary. How long do things usually take to show in baby - how will I know what has been triggering him based on timings - or is everyone different?

When he is fussing on the boob I defo have much more luck feeding in thr lying down position so he's more on his belly than on his side. From your experience is this relief from reflux or fast let down? He does still fuss on the boob even when they aren't very full, therefore not sure if he is struggling with let down then - when he pulls off there is absolutely no leakage in those instances.

I don't want to be adding another condition on and just thinking he has reflux, but at the same time I don't want to ignore it. I will of course ring GP too.

My son was similar and I tied myself in absolute knots for the first six months of his life trying to get to the bottom of it. It was agony, he cried and never slept. All I can say is we tried everything and nothing worked. He just got better at 6 months and better again at 9. Hang in there

Soya is easier to avoid that it's made out to be fair. Or maybe it's everything else that's hard. My daughter has 20 allergies across most food groups!
Bread is the only thing we struggle with and that's because we do most of our shopping at Sainsbury's and 95% of their breads contain soya. Morrisons is as bad but Tesco, Aldi and the coop have most of their own brand breads soya free.

Reactions occur within 2 and 72h. We had a few that were really quick like beef (20minutes) and egg (1h) both got a lot worse over the first 24h. Most reactions were are 36-48h mark. Everything needs to be listed as anything can be an allergen. My daughter is allergic to onions and garlic! All behaviours too we soon realised needing to be held and not able to play or stay occupied were early signs of a reaction

I was vegetarian at the point of cutting out foods and it was very obvious, more obvious than dairy, when I ate meat replacements. It turns out she is very sensitive to soya and directly she can't eat soya fed poultry!

For quite a lot of people reflux natural resolves itself between 6 and 12 months. Only 10% of children still have reflux at 12 months with it leaking around 4 months at 40%. For us her reflux and undiagnosed allergies were causing developmental delays so there was no real option of waiting it out. She is also in the minority of children that have reflux past 2 and is still heavily medicated

I don't know what it was about the lying down feeds that were better I don't know if she was calmer or more skin to skin. Or what. I couldn't move her after a fed and she would be sick immediately so moving her to the upright position meant to be good for reflux wasn't an option.

@DGPP oh no sorry to hear that. That must have been a long 6 months! I feel like I'm wishing these early days away with him and it just feels unfair that he has to suffer like this, and I have to constantly feel like a walking zombie.

@Superscientist OK ill take a look into soya. Gosh your daughter has had a rough ride of it the poor little mite, how very unfair!

Before we changed diet he would scream in pain and it was definitely excessive wind which was the main culprit, the way he went as stiff as a board, arched his back etc, and then the MASSIVE trumps. Since changing my diet this had stopped, but he has days where he just cries/moans/whines for hours on end - but there is none of the arching back/kicking legs/farting or burping, it's like he's just really uncomfortable and not happy. We had one of those days today and I was alone with him and our toddler and found it so hard, baby wouldn't let me put him down or stop moaning, so our poor toddler was left to fend for himself. He also hasn't slept in about 6 hours, not for lack of trying! He keeps drifting off and then waking up moaning again.

He could have a muscle that’s not quite closed - you put him down and the acid burns, he takes mild which helps the burn, he’s not unhurt as such but in pain.

You need to keep him upright after feeds so the milk stays down - do not lie him flat - ever - lift hos cot with a towel under the mattress, use a cushion for nappy changes, upright for sleeping or coddles on you. In a chair after feeds.

You’ll have a different baby in 3 days.

The reason they get better at 6 months is because they learn to sit up and the muscle closes properly.

I wish that had been the case with my daughter @Scarletttulips !
Take care with absolutes and babies. There aren't any and whilst well meaning they can be harmful to mums wellbeing when they don't turn out to be true.

I would have been delighted for my daughter to be a different baby just by having her upright all day but that didn't help. I had her upright in my arms for 23h a day. It nearly killed me and 3 years on she sleeps on 4 pillows and regularly I have to sit up right all night with her listening to her endless bringing up the cup of oat milk she had hours earlier despite being perfectly upright. She runs around and we can hear her refluxing. Lots of babies do get better at 6 months even more by 12 months and past 2 years it's quite rare. False hope to desperate mothers that it magically disappears at 6 months is harmful or at least it was for me and it contributed to me getting admitted to a psychiatric unit when my daughter was 10 months old. Give your experience please do just with a touch of balance that it might not be the cure it was for your little one.

That sounds a lot like my daughter but after removing dairy, soya, eggs, coconut and tomato. For us they were her major allergens. After that her reactions were less extreme and more varied from day to day. It didn't help with figuring things out.

About half of babies will react to both soya and dairy so I think a sensible next step would be to explore removing soya as well as bringing a thicker in to the milk again to see if the thicker milk helps.

It's called reflux but when theres an allergy involved it's almost regular sickness. My sister retrospectively had cmpa she projectile vomited milk until she was 2 and then she continued to be randomly sick until her late 30s when she went vegan so probably never completely regained dairy tolerance.

I do think strangers on the internet are not doctors. I would try and speak to your GP and ask for a referral to a paediatrician. It is possible he’s just a very unsettled baby. Looking back low I think that’s what my child was. It was a long six months but me going down a rabbit hole trying to diagnosis him, taking silent reflux treatment and cutting everything out of my diet didn’t help. I’m not saying allergies aren’t genuine. Of course they are. But I would try and speak to a professional. One GP did say to me it takes 6 months for their stomachs to mature

I second what someone said about trying to avoid laying your LO down where possible after a feed. Baby carrying was an absolute life saver for us.

For bedtime, hubs would walk with my son in the carrier for 45-50 mins after his bedtime feed and that seemed to be long enough upright to allow us to then get a few hours.

Then once he woke we would take it in turns to sit with him upright for 2-3hrs before swapping with the other. This way we managed to get 6ish hours each per night. Not ideal but better than what we were getting!

Otherwise our nights were what you described as more like multiple naps 😭

It's sooo hard. Sending you a big hug.

Thanks all. I totally appreciate people on the Internet aren't doctors, but it's useful to hear other people's experiences which you don't get from speaking to a GP. I worry that I "feed the witness" as such when I speak to HV or GP, tell them what I think it is and they tell me how to manage it. Maybe I'm over thinking it, I suppose they would tell me if they disagreed.

Anyway. I spoke to HV this morning and she thinks it's silent reflux, and told me to go to a local BF clinic where they have a reflux specialist to talk to about how to manage it. She didn't mention getting any medication from GP. I asked about cutting out soya as well as dairy and she said she wouldn't move to doing that yet...

LB has been so unsettled these past few days, for the vast majority of the day. So uncomfortable/unhappy about something. Won't be put down and even when I'm holding him he isn't very happy either. Pissed off when feeding, keeps de latching and arching his back etc. Can silent reflux make them unsettled all day long, not just after feeds?

I would start a food diary. These absolutely were my best friend when trying to figure everything else. I would always say to start one before you need to look at it. It's better to have 2 weeks of food diaries you don't look at than another 2 weeks wait whilst you start one when you need the results.

Good luck with the breastfeeding group

The thing with silent reflux is the feed can be brought up endlessly which means it can go on for ages. My daughter can be refluxing the same feed for hours! The medication we found the most helpful is the domperidone which speeds up the emptying of the stomach so the milk isn't in the stomach for as long. Things like gaviscon and carobel work by thickening the milk and that makes it a bit harder for the stomach to bring it up again.

Sounds exactly like my son. Was awful those early weeks, took him to A&E even as he was so pitiful, either screaming or whimpering. Paediatrics diagnosed silent reflux and he got omeprazole which took the acid pain away so he was such a happy baby, but his nappies were still very mucusy and when we moved areas the new health visitor was horrified and said he has CMPA. He's on a prescribed formula and his nappies cleared up quickly, and no reflux symptoms either. Different baby, such a relief!

Silent reflux is usually a symptom but be warned the ladder for meds begins with gaviscon which constipated. Not all GPS will give omeprazole first. Alot of mucus means an irritated bowel so sounds like it may be a symptom not just an issue of its own.