silent reflux?!?!?!

(21 Posts)
mummytohpm Fri 03-Jun-16 16:59:31

I have sort of posted about a bit of this before but the situation has developed and I need help sad

I have a 5wk old ds.

He's always had issues with spitting out milk as he's feeding. It's a lot that comes out - enough to soak through a bib and a Muslin and get on his clothes.

I've tried tommee tippee and avent bottles. Today I have tried a cheapy old fashioned style bottle. Hasn't made a difference.

Within the last week or so he's started to be unsettled after feeds (although not in the night - weirdly!) and will cry if you lay him flat, but will settle instantly when sat upright or help upright over my shoulder. It's not wind, he winds quite easily. The crying doesn't stop when you wind him.

Today for the first time the screaming has started during the feed. He is obviously hungry and so takes the milk but then it's like he realises oh yeah that hurts and cries until he is literally red in the face.

He is not often sick. Occasionally - but not nearly as much as a baby with 'normal' reflux.

Anyway, seen the health visitor who thought he had colic. I basically said I thought that was very unlikely and I thought it was reflux and explained why. She was with me until I said he wasn't often sick.

Anyway I mentioned silent reflux and she didn't seem convinced, but reccomended infant gaviscon for the milk spitting out! (Weird, but seen as it works for reflux I thought I'd go with it)

So she couldn't prescribe it but told me to see doctors. I did. I practically had to force him to prescribe it because again when I mentioned the lack of sick he looked at me like I was a mad woman.

I and going to try the gaviscon in his next bottle and hope that helps.

The issue is I can only give it to him 6 times in 24 hours. Now anyone who has ever had heartburn or acid reflux knows that it is only a temporary relief!

What the hell do I do on the feeds where I can't give it?!

I was thinking perhaps comfort milk? As gaviscon thickens I wondered if comfort milk might be a good substitute for the other feeds?!

I don't even know whether the gaviscon will work yet though!

Another thing - potential tongue tie. Hv and GP said he doesn't have it. I am beginning to think that he has.

When he cries - when he really goes for it - his tongue doesn't touch the top of his mouth. Is that normal? To be honest I haven't ever seen him sick his tongue out but I keep trying to make him do it but to no avail.

Are there any other things to look out for?!

I feel like health professionals think I'm completely bonkers and either making symptoms up or over reacting to a 'bit of milk' (as the GP put it. Er no mate it's a lot of milk!!)

Because he's gaining weight nobody is worried, but they don't hear the poor boy screaming. And because of the lack of sick they don't seem convinced of reflux

I find myself asking why has nobody ever heard of silent reflux?! I have heard of it why the hell haven't they!!

Does anyone have any experience / advice / anything?!

Has anyone got a baby with silent reflux and or tongue tie? Help me pleaaaaaase!!

squeezed Fri 03-Jun-16 19:17:04

We had dds posterior tongue tie snipped. The first sign of tongue tie was the shallow latch and the horrendous pain caused by it. The latch has been much better since, but I've been really lucky with the hcp. I would suggest sourcing a local expert because of the different interpretations of tt by professionals. There may be a lactation clinic or consultant you could speak to.
Dd may have silent reflux. I'm keeping her in a sling all day and have elevated one side of moses basket (not that she sleeps in it) but it's early days. Feeding in an upright position may also help. Possibly try burping mid feed, I read that the baby may try to feed too much to alleviate the pain of reflux but it actually makes it worse.
Could you try different brands of formula to see if that helps?
It's horrible to see them in pain and I'm sorry that you havent felt supported.

sleepbecomeshim Sat 04-Jun-16 13:56:19

I really feel for you; it's so hard trying to feed a refluxy baby and very distressing when the thing that should comfort them the most is causing them pain.

My son had silent reflux. He didn't have any problematic symptoms until he was 6 weeks old when he just started screaming - inconsolably - a few sucks into a feed. He was breastfed and I found this hugely distressing and depressing. I got mastitis almost instantly as he was barely eating. We'd literally have to take him out in the car to soothe him once he started up as any other comforting didn't work! I googled like mad and that's how I discovered SR. He'd only feed properly as he was just waking up or in the night. So we had to get him to sleep so I could feed him - ridiculous!

I was lucky enough to have a friend who is a paediatrician and she prescribed ranitidine which transformed things for a good 3-4 months. We had to increase the dose in line with weight but it worked and over a couple of weeks his feeding became more normal.

When ranitidine stopped working we switched to omeprazole (at about 5 months) and this was the wonder drug for us. His symptoms (which were only ever really fussiness around feeding) disappeared and feeding became a dream. I think this helped me relax a lot more which in turn helped him be calmer too. I'm sure my anxiety and stress about it didn't help.

He's 9mo now and we weaned him off omeprazole about 2 months ago with zero ill effects. He must have outgrown it and matured enough to handle his internals! But that drug was a real lifesaver for us so I'd recommend asking your Dr about it.

I found being kinder to myself helped a lot. It was my job to provide milk and try to sort out any issues he had - but I couldn't do more than that. If things had reached a really critical point and he'd started wasting away then of course HCPs would have stepped in to assist more. And they'll do the same for you. I do think if weight gain remains OK then they remain nonplussed which is a bit frustrating when you're struggling like mad behind the scenes.

Re tongue tie - I wondered about this for a while and looked at the symptom list but so many of the signs are also just what babies do (not to minimise how serious TT is) at various points. Maybe you could give the La Leche League a call about it to ask their advice. They're obviously a breastfeeding group but they may be able to help out of you're worried about TT.

I really hope things improve soon and am confident that they will. It was so bad at times that we vowed to stick with an only child as I was so depressed and anxious. But now, only a few months later, things are so different and SR feels like a distant memory. So hang in there. Your baby ie lucky to have such a concerned and caring Mummy - look after yourself too.

mummytohpm Sat 04-Jun-16 16:35:06

Wow that sounds so much like ds!

I've bought some reflux milk today so I'm going to try that and if that is not successful back to the doctors I think.

He was absolutely inconsolable earlier when he had a feed with no gaviscon in it.

It's stupid really because you're only allowed to give it 6 times in 24h but babies usually feed more than that! He feeds at least 8 times so it's like having to choose which feeds he's gonna be upset which is just awful.

Funnily enough ds is the same in that if he wakes Up for a feed he's okay. In the night we don't generally have this problem. In the day time it is pretty much every feed

This combined with the dribbling is just making things really really hard.

Thank you for your advice. If this milk doesn't help I will push for different medication.

mummytohpm Sat 04-Jun-16 20:41:32

Well we've tried reflux milk twice, first time absolutely fine

Second time absolutely inconsolable again sad

Going to keep trying gaviscon with regular milk and then go back to the doctors if no improvement.

I feel so awful for him sad he's so obviously in pain and I am powerless to stop it!

idontlikealdi Sat 04-Jun-16 21:07:24

If it is silent reflux and it sounds like it is you really need to push for an antacid with the GP - ranitidine or omeprazole.

mummytohpm Sat 04-Jun-16 21:36:51

I think you're right. I will persevere until Monday with the gaviscon and then I'll go back to the GP.

It's almost like they don't recognise it as a problem unless there's tons of sick!

thenewaveragebear1983 Sat 04-Jun-16 21:45:32

My ds had silent reflux. Was never sick, not even once. We used cow and gate reflux milk after I stopped bf and we did try gaviscon before that but in the end switched to the formula. It has a 'cumulative effect' ie you need to keep using it and it will gradually improve. He was like a different baby after a week. Make sure the hole in the teat is big enough, we used size 3 tommee tippee. Watch out for constipation as it dries them out a bit, but eventually they settle into it. Now he's 8mo he's been off the reflux formula for a few months now. My gp didn't believe in silent reflux and said nothing will work, give calpol if he's in pain. I think some healthcare professionals just don't buy into it. hmm

thenewaveragebear1983 Sat 04-Jun-16 21:48:39

Just should point out, I don't think you actually should give calpol! And have just reread and seen your baby is only 5 weeks, so definitely don't.
Also, again not recommended, but my ds slept on his tummy and it dramatically improved his sleep.

mummytohpm Sat 04-Jun-16 21:49:17

Oh I didn't know that! I will try and persevere with it then!

It seems so many gp's don't believe it's real!! It's so crazy!

mummytohpm Sat 04-Jun-16 21:52:14

He sleeps on his belly on me during the day but on his back in his Moses basket

He's usually fine at night weirdly! It's during the day he gets upset!

No I won't use calpol. I can't believe that's what a doctor suggested it's hardly solving the problem!

It's just awful!

I think because he's putting on a good amount of weight they're almost not interested in what I have to say because they think we'll it can't be that bad if he's gaining!

5minutestobed Sat 04-Jun-16 21:53:33

You need Carobel!! Wonderful stuff, you can buy it online or get it prescribed. It thickens the milk to however thick you need it and you can use it in every feed. Omeprazole was the wonder drug for us though, can you ask to be referred to a paed?

thenewaveragebear1983 Sat 04-Jun-16 22:17:50

I was told that often babies with silent reflux do put on weight because they naturally want to feed when they are distressed, so have lots of little feeds but don't bring up any milk (so consume a lot of calories). Another reason why they don't necessarily spot it. Tongue tie and reflux go together as well, he had a TT which was snipped at 6 weeks and it was only after that that they began to listen to me as his symptoms didn't improve. There's a lot of talk about cluster feeding as well and I thought that's what he was doing, but it was actually his reflux making him cry, wanting comfort and then making it worse. It was a tough few months but it does get better - I promise!

mummytohpm Sat 04-Jun-16 22:50:19

Is carobel the cow and gate reflux milk? We're using that at the mo. And sometimes regular cow and gate with gaviscon. But not both together.

If I don't get anywhere with the GP I'll push for a referral to someone who will hopefully 'believe' in silent reflux.

I really need to see someone about the tongue tie because instinct tells me there's something not right. For the short time I did breastfeed we had a really hard time of it and it hurt like hell and I hated every minute of it which is why I didn't persevere. Then when he didn't particularly take well to the bottle ie lots of dribbling I felt incredibly guilty.

I don't feel guilty any more but I feel like I'm really having to push for anyone (anyone health professional wise) to believe me!

The hv is humouring me about the reflux. Like I say the doctor looked at me like I was a right idiot when I said there was no sick and was like 'sounds like colic'

Is that the default answer to any baby related problems?

I might go in with a big sign next time that says 'before you say it it's not fucking colic!!'

I have read the symptoms 50 times and it's just not that I know it isn't.

I'm sure it's silent reflux! It amazes me how many parents report their baby having it and their doctor not believing it!!

CommaStop Sun 05-Jun-16 00:01:29

Sounds very much like your lo has silent reflux. My lg's started around 5 weeks which is typical and had nothing to do with getting sick/spitting up. Primarily she would scream whilst feeding. Initially we tried various different bottles, mam, dr brown etc which got pricey but you're desperate. But it kept on going. Luckily my cousin is a paediatrician and prescribed infant gaviscon without any fuss which did help enormously but at the time we were on 7 feeds a day so same issue as you're having. After a short while though the ig wasn't as effective and cousin prescribed omeprazole (initially 5mg) so we were using both ig and omeprazole and this really settled things but periodically they'd get worse and we'd have to play around with dosing etc. By the end she was on 15mg per day but that was when she was older/bigger. She was on both up to one year and then stopped no problem. Few things - ig does not work the way adult gaviscon does, it works by keeping the milk down not neutralizing acid whereas a ppi like omeprazole cuts down acid production in the stomach but youhave to be careful not to cut it down too much as we need acid to digest. The nighttime thing is not too surprising as the proton pumps that produce the acid shut down or.are less active at night. I really feel for you as it's incredibly hard to watch your little baby in pain doing what should be most natural and enjoyable for them. Don't let your hv/gp fob you off as it's not just about thriving/weight gain (reflux babies can gain well as they mistake the pain for hunger pangs or take in a lot of milk to neutralize acid) - its about preventing pain and preventing distress - yours and babies and about the relationship they develop with eating - in extreme cases babies start refusing to eat due to the pain association or will only feed while asleep. Try recording baby's distress when feeding - my mother had six kids and this is her 12th gc and she had never seen anything like it. I think there are doctors out there who just don't understand it and have never personally seen the distress it causes. There's a book you could look at called infant acid reflux biblethat explains a lot of what's happening with reflux, the different meds and formulas and some tips on getting doctors to listen and take you seriously. I didnt get the book but got the accompanying app, infant acid reflux which had most of the info. It's written by a mum who's been through the mill, think the name was cherie bacon. Also if you haven't already get a sling or wrap or carrier or whatever suits you best but something that will hold baby close to you upright and allow them to sleep and give you.a bit of hands free peace (reflux babies not so good at lying down to nap) - for me anyway it was a lifesaver. Sorry if I've bombarded you, just the more info you have the easier it will be to.deal. it is tough, no doubt about it, but you'll find the right solutions for you .

mummytohpm Sun 05-Jun-16 10:19:54

comma you're amazing!

I will certainly download the app! I feel a lot more knowledgeable now where ig is concerned.

Why can't my GP be like you!

I will absolutely not be fobbed off! It quite obviously does exist!

I haven't bought a sling or wrap yet but I'm definitely going to get one. You're right he's not good at napping unless it is on me but you can't get much done with a baby pinned to you for hours at a time!

5minutestobed Sun 05-Jun-16 11:11:56

www.amazon.co.uk/COW-GATE-INSTANT-CAROBEL-135G/dp/B00ARV1LIW#

Hopefully that link will work. Carobel is a milk thickener that you put in formula, not formula on it's own.

My DS comfort ate as well, it wasn't until he went on the omeprazole that he stopped drinking so much milk and I realised that must be what he was doing.

mummytohpm Sun 05-Jun-16 11:16:15

5minutes

That makes sense. He does get through quite a lot of milk. Hv was surprised about how he takes! She never said it could be related to silent reflux though!

Thanks for the link I'll have a look into it!

Owlytellsmesecrets Sun 05-Jun-16 11:30:58

I've had a severe refluxer who was a failure to thrive. We thought it was happening with DD too... Turned out to be dairy intolerance .. Try a dairy free formula!

mummytohpm Sun 05-Jun-16 12:48:21

Oh I never considered a dairy intolerance!

Riversmum1 Sun 05-Jun-16 23:34:25

Nexium for silent reflux changed our lives. Feeding became a 10 minute affair. No writhing. No screaming in agony as the burps came up. Much less posseting. We had weight gain issues reflux was so bad. I gave up breastfeeding due to screaming at books a few mins into feeds. Reflux is a HUGE problem that expectant mothers dint get warned about enough. Took me way to long to get it diagnosed and my DS is under the centile lines because of the pain he suffered. He is now tracking his curve nicely and under the care of a gastro pead and a dietician because of it. Get treatment fast - for your own sake too! GOOD LUCK XX

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