Silent reflux? Colic? Cow's Milk Protein Allergy?! Any experience..?!

[MemmaJ]

LO is 4 weeks old. I breastfed for about 2 weeks (with the occasional formula feed) but I just didn't get on with breastfeeding so we switched to exclusive FF (Aptamil).

At first, we thought he was suffering with Colic (fussing after feeds, unable to settle, only sleeping for very short periods and this sleep being very unsettled, crying for no apparent reason - all of which were only really a problem at night time). So we started using Dentinox colic drops, with little effect. We also thought maybe he was just hungry because the only thing that calmed him was feeding (although not every time), even if he had only fed shortly before. So we tried Hungry Baby milk, which also didn't have any effect. Someone recommended Dr. Brown's bottles, so went and bought those... Also no change.

Whilst searching online for things to help Colic, I came across a video of a baby with silent reflux, and it was just like my LO. So I began reading up on silent reflux and started to think that actually that was the problem, as he has many of the specific symptoms for that (e.g: hiccuping, sneezing, 'wet burps', unsettled when laid flat, frequent feeding, arching back during and after feeding, noises when asleep), as well as those mentioned above which can also indicate silent reflux...

So I went and got some Infant Gaviscon. Again... no help. Discovered that Boots sell Aptamil Anti Reflux formula, so bought that.. We've been using it a couple of days and at first I thought it was helping, but that appears to have been wishful thinking as lastnight was one of the worst yet.

He has always taken his feeds well and very rarely vomits (day or night).

During the day, he feeds approx 2.5-3 hourly (4oz) and sleeps well in between. He can be quite unsettled after a feed during the day, but can be settled after a while. He also has good periods of being awake and alert, and very content.
But at night, its completely different. He is impossible to settle after a feed, and when I do finally get him to settle (which takes about 2 hours until he finally gives in through exhaustion), his sleep is still quite disturbed (cries as soon as he's put down, makes lots of little noises/cries like he's in pain during sleep, etc) - he then wakes up again just an hour or so later, screaming; and wont accept anything other than a bottle of milk (I have tried a dummy and cool boiled water), and so we do it all again. The few times we have given in and let him have as much milk as would settle him, have been the few times he has vommited it all back up afterwards.
All of this means I'm only getting around half an hours sleep at a time, a few times a night. Totally around 2 hours sleep all together, if I'm lucky! So not only am I totally shattered, but I hate seeing him so upset and seemingly in so much pain, and nothing working to help him...
It's also very frustrating not being able to settle your own baby and it's starting to make me feel like an incompetent mother.

Lastnight was terrible as he also now appears to have terrible wind (bum end!) and very loose poo (bright yellow diarrhoea) - which is also making him very uncomfortable and making him cry even more, as he straining to fart/poo so much (I had to change his nappy 4 or 5 times overnight).

I gave in and took him to the doctors this morning. I have been avoiding it as I didn't want to be fobbed off with things like 'maybe he's just hungry' or 'well baby's DO cry'.

He basically said it doesn't sound like reflux because he's not vommitting. I did keep reinforcing that I thought it was SILENT reflux and that he seems to have all the symptoms - to which he said it's probably not reflux (silent or otherwise) if Gaviscon didn't help. I felt a little bit like he just thought it was simple colic and that I am over-reacting and trying to make it into something else. I have twin boys already (they're 11), and they never did anything like this.

Regarding his poo, he just said that baby's poo does change a lot and it's nothing to worry about. Which is fine - I suspect its the new milk anyway as it's only happened since he's started the Aptamil Anti Reflux.

Before I went, I was hoping to be prescribed some Ranitidine having read good things about it - but that wasn't happening because the doctor didn't think it was reflux.
So instead he has prescribed Nutramigen 1 formula, incase it's all down to a Cow's Milk Protein allergy/intolerance. He said it may not be that, but to try it as part of the 'trial and error' process.

Does anyone else have any experience with these symptoms, and what did it turn out to be..? Also does anyone have any experience with Nutramigen formula? Did it work, and how soon did it work?!

 

[jodilee6]

Firstly hugs, it's hard seeing your little one so uncomfortable

Now for our story, DS was never settled from birth, he was always gassy and horrid reflux and would not settle unless held constantly

After trying gaviscon, ranitidine and various anti reflux milks, none of which really helped we were finally prescribed Nutramigen.

I warn you now it stinks and tastes foul so don't be surprised if your LO refuses it! We saw a difference after about a week and have now been on it for just over a month.

DS is now a different baby, he's no longer sick, doesn't need to be held and will settle for naps in his bed and has started STTN! It took me 15 weeks of being at the Drs weekly to finally get a CMPA diagnosis, unfortunately it is a case of trial and error

What I will say, if you don't think it's helping don't be afraid to go back to your dr and say so, I hope you find something that helps

 

[MemmaJ]

Thank you for your reply, that's really helpful! How old is your DS? Did he used to be up all through the night with it like mine?!
I have heard a lot of baby's refuse the Nutramigen... Did yours take it ok?

 

[jodilee6]

He's now 18 weeks, when he was about your age I had the same thing, feed then take 2+ hours to settle for me to get about 20 minutes sleep before he wanted to sleep again. It was exhausting and I was broken, he wouldn't even settle co sleeping.

We had to mix it with his normal milk and slowly wean him onto it so 5oz normal to 2oz Nutramigen until he was fully on Nutramigen and then it took about a week to notice a difference

1 tin won't last very long at all!

 

[amy8686]

My son had the same symptoms, and Nutramigen has helped greatly. He wouldn't take it at first (because it is DISGUSTING), so we mixed it with another formula and gradually increased the proportion of Nutramigen. His symptoms gradually improved throughout that time, and within a couple of weeks of being on 100% Nutramigen he was like a different baby! No more crazy fussing like he was in pain, longer stretches between eating, and he started sleeping through the night. I can't remember how old he was - I think 3 or 4 months? He's now almost 9 months and he sleeps a 10-11 hour stretch at night.

Recently we tried going back to half-and-half bottles to see if he was outgrowing his need for the Nutramigen, and the reflux came right back.

My only complaints are that it's crazy expensive and did I mentioned that it's gross? Say goodbye to your baby's sweet smell.

We're pretty sure it's a milk protein allergy, because he also had issues with breast milk until I cut out dairy.

 

[MemmaJ]

Thank you, that's so good to know!

Well he took it ok...! I just made up a bottle of it straight and was ready for him to refuse it and to have to go and make a new one of half-and-half, but no it was fine. He screwed his face up at first but he's such a pig and loves his food so much that he just cracked on, lol.

BUT... He threw up after both the first two bottles of it. Quite a lot. And it was very rare for him to vomit before, so for it to happen twice in a row is a worry.

Its now half past midnight and I'm giving him his third bottle of it, so will see what happens (and if he settles afterwards...!).

 

[VickyLou]

Awwwww bless you. I feel for you so much. Your story sounds similar mine it is heartbreaking to watch your little ones in so much pain especially when there seems to be nothing you can do to help them.

A few tips which I'm sure you have already tried. Don't lie your little one down to feed, keep him as up right as possible.
Keep him up right for at least 30 minutes after a feed. It's a pain when you are tired but it really does help.
Put a pillow or wedge under the sheet where baby sleep so they are not lay flat.

My daughter (who has just had her first birthday) was so much like your little one. I lost count how many times I had her at the doctors and A&E to be told it's normal, or its colic, first time mum syndrome blah blah blah. I took her to the doctors and fed her in front of the doctor, she then diagnosed reflux cause she was spitting up after a few mouthfuls. We were prescribed gaviscon. A week later back at the doctors, she prescribed ranitidine. 2 weeks later back at the doctors to be told she will have to refer to a paed cause she can't prescribe anything else.
(Let me add my daughter was 2 weeks old when I first took her to the doctors and told them that she was allergic to milk but according to them she was showing the typical signs)
Anyway took her to A&E after literally 48 hours of my daughter screaming in pain, she only slept for 2 hours in the 2 days ( I remember it like it was yesterday) I refused to leave until they sorted her out. They tried to fob me off with the usual crap but I was having non of it. My daughter was almost 10 weeks old by this point and had suffered for far to long. They eventually gave it and gave us nutramigen AA (now puramino). She was like a different baby in 24 hours (apart from the server reflux) she could finally poo (she suffered terribly with constipation, she still does) she no longer had a rash on her face and her eczema calmed down. And my GP was so so sorry for not listening to me 8 weeks earlier.
We finally saw the paed and got some new reflux meds (omeprazole)

If you think your child has reflux then keep going back to see your GP, never ever give up. Reflux is horrible for us as adults never mind our little baby's. Also there are several types of milk that you can try so if this one doesn't work don't be to disheartened. Nutramigen 1 still contains some proteins so it might be that your little one need puramino or necate that doesn't contain any proteins.

I won't lie and say it's easy cause it really isn't. It's a fight with the doctors to get the right milk and medications cause it's so expensive but they can't say NO to a baby. There is light at the end of the tunnel though. Although my daughter is still on her milk and reflux meds she now sleeps through the night and she such a happy little sole.
Stay strong and don't take no for answer where the doctors are concerned.

Sorry for the long post. Sending hugs hugs from a mummy who totally understands what you are going through. Xx

 

[jodilee6]

How did your night go?

A tip the pharmacist gave us is to use carobel thickener in his milk as Nutramigen is like water, as DS has been on anti reflux milk up to that point he was used to the thicker milk and also as he had been pretty much vommiting for 14 weeks constantly she said that his stomach valve might struggle to close with the thinner milk, worked like a dream for us

 

[MemmaJ]

He still woke up every 2 hours for food, but settled soooo much better after each feed. I'm trying to keep telling myself it might just be fluke as it surely can't work that quickly, but I hope it's a good sign.

He didn't vomit all night, but then vommitted all his 7.30am feed this morning...?! Strange...

Thanks for the tip jodilee, where would I get that from..? It's definitely something I'll try, I had noticed how thin/watery Nutramigen is and it doesn't seem to be sitting well in his tummy judging by the puking..!

I'm off to get him weighed with the health visitors shortly so willl be interesting to see what they think too (and what he weighs!).

 

[jodilee6]

https://www.expresschemist.co.uk/cow-and-gate-instant-carobel-135g.html

This is what I use, you can get it from any chemist tho they may need to order it in. I get ours from boots

I'm glad he had a more settled night, those 2 hours must have felt like heaven!

 

[MemmaJ]

Well I was getting about an hours sleep each time, as I was sitting up with him on my shoulder for 20-30 minutes after each feed (to make sure he didn't reflux/vomit), and then he was still a bit unsettled once then put down; so I'd eventually go back to sleep about an hour after he had first woke up - but still an improvement on how it was, and much less frustrating and upsetting!

HV's were happy with his weight this morning (8lbs 2oz!) but didn't really offer much help/advice about anything else . Just said to give the Nutramigen a few more days and if he's still vomitting after feeds then go back to the GP...

 

[MemmaJ]

I'm taking him back to the doctor today - he is still projectile vomitting after 50% of his feeds now, which he never did before he was having Nutramigen. That might even be bearable if the original symptoms/problem was improving, but it's not. He's still very unsettled, still constantly grunts, groans fusses and squirms. He Appears to be in so much discomfort/pain and cries for ages at times, it's heartbreaking.

I'm not even convinced it's a CMPA, I think he just needs treating properly for reflux initially and if that doesn't improve, then maybe... I don't like the idea of him being treated like he has an allergy when we don't even know if he does...
How would he be properly tested for a CMPA - would that be through a paediatrician rather than the GP directly?

 

[jodilee6]

Oh Hun, sorry it's not any better

We did ours all through the GP so not sure how it would work for you. We didn't have testing for CMPA just elimination of dairy, but got us the difference was obvious in 2-3 days

I hope you get some answers soon

 

[Charmed86]

I've not read the whole thread as I'm shattered from a bad night myself. Lol.

I could have written your original post almost word for word!! We tried so many different things & were fobbed off so often. My son has cmpa & is on nutramigen with LGG (used to be known as lipil). He's like a different baby on it! He does have silent reflux as well, but we give Gaviscon for that. He spits up like crazy on nutramigen!! It's awful, so the Gaviscon really helps with that. The nutramigen gives him runny poos, but the Gaviscon firms them up so it works pretty well!

It took a lot of trial and error to get to this point.. Different formulas (sma gold, hipp organic, sma comfort), infacol, gripe water, Gaviscon, ranitidine! I think that's everything!! It wasn't until I marched us all down to the hospital that we got any answers & only then it was by chance. The nurse accused me of overfeeding.. He was taking a lot for comfort I think! Poor guy. When the consultant finally saw how he was, she said it was simply unacceptable to send us home with him like that! And immediately prescribed nutramigen. He's been amazing on it. We still have good and bad days, but now they're normal baby days rather than him being in pain all of the time. He's naturally starting to space his feeds out longer 3.5-4hrs & regularly takes around 6oz at a time. He's having 6 bottles a day.

Our consultant did say it can take months for the nutramigen to work in some cases! So don't lose hope. However, trust your instincts and if they're telling you that something still isn't right then keep pushing xxz

 

[Charmed86]

I just wanted to add that nutramigen is notorious for making babies spit up a lot! When my lo spits up, he cries in pain because of the acid too. The Gaviscon has been a wonder drug! Your LO should be referred to a dietician if you do stick with the nutramigen though. And you should be seen by a paed or consultant regularly to see how you're getting on, although that isn't necessary.

Nutramigen does have cmp in it, just broken down so their bodies don't recognise it. If your little one does have cmpa, it could be that he's reacting to that still. I believe neocate doesn't have this in it. I'm not saying switch, just something to bear in mind. It really does get better! PM me if you ever need a chat xxx

 

[MemmaJ]

Wow that's really helpful, thank you!

I saw a different doctor who was quite sympathetic as her daughter suffered from reflux too.
I still felt a little bit like I had to explain myself/beg though, as with both doctors, I have felt a little bit like they think I'm over reacting (maybe because he's so young?).

Basically she prescribed Ranitidine (she was about to prescribe Omeprazole until I mentioned Ranitidine and then she said 'oh actually, yeah I think you're supposed to try that first'). So he's to have that 3 times a day and I also asked her to refer him to the paediatric team for a bit more specialist input, and she said she will if that's what I want.

Then, when I asked her what to do about his milk (ie: carry on with Nutramigen, or go back to Aptamil as he has only started vomitting since he started Nutramigen), she didn't know. After a bit of awkwardness, she said 'maybe' I should stop the Nutramigen if he's only started vomitting since he's had that.

So on her recommendation, we've gone back to Aptamil and are giving the ranitidine 3 times a day. He's not vommitted at all since then but the silent reflux symptoms are not much better really. Reading your posts, I'm now wondering whether we should've continued with the Nutramigen and given him gaviscon with it instead (can you give ranitidine AND gaviscon)..?!
Argh it's so hard..! Hopefully the Paediatric referral won't be too long and they can help with it all

 

[Charmed86]

You can give ranitidine and Gaviscon at the same time I've noticed since increasing my LO's bottles to 8oz & Gaviscon to 2 sachets per feed that he's spitting up a lot again, so we will probably be back to the GP to see if they'll give us ranitidine alongside it. We do have some at home already from when we tried it before, but the dose goes up with their weight & he's gained a couple of lbs since then!

Did you notice any improvement on the nutramigen? After only one night of my LO being on it, I phoned the children's ward to see if we could give Gaviscon. He was not screaming all the time, but he was spitting up ounces (sometimes projectile, which was new!) & then he'd scream after that. As soon as we added the Gaviscon, he became a different baby! Have you changed back to the Aptamil formula yet? It sounds like if your boy does have cmpa, that he has a delayed reaction like my LO. It's much harder to diagnose & I don't think there's any specific test for it like the immediate reaction. Just trial and error

I'm glad you're getting a referral! Sometimes you need someone with a bit more expertise to have a look at the whole picture. Don't let them fob you off though. They tried that with me! Stuck us in a room & let my LO scream. I told my DH that if the consultant hadn't come in when she did, then I'd have walked around the ward with him like it! Just so someone would take notice. Thankfully the consultant saw first hand so it was ok! Try to document how your LO is before your appointment, so keep a feed diary - how much he's taken, has he spit up & how much, how is he pain-wise & temperament before/during/after feeds etc. Your paed will thank you for it & it'll save you so much time xxx

 

[MemmaJ]

Thank you, that's great.
Yes we started back on the Aptamil yesterday as that's when we saw the other doctor and she said to stop the Nutramigen if it was making him so sick (he was never sick before that)

He was only on the Nutramigen for 4 days and it was hard to tell if there was any difference/improvement as he projectile vommitted after ever feed, and was therefore always hungry too - so all that made him really unsettled anyway

I feel like I've done the wrong thing now
I did ask the doctor we originally saw (who prescribed the Nutramigen) whether I should give him anything else with it (ie: gaviscon, colic drops) and he said not to as there's no point if that's not the problem (ie: if it's a CMPA). So I never tried it with gaviscon and I feel like I should now having read your post.

Now I think of it though, his poo was dark green first thing yesterday (whereas it has always otherwise been yellow). I read that Nutramigen can make their poo green, and that would indicate that it had taken those 4 days to have that effect on him - so maybe it would have started to have an effect in other ways (like improving his symptoms) if he had continued with it

Would it be silly of me to change it again and do that now..? I still have some Nutramigen and some gaviscon in the cupboard, plus some ranitidine now... I worry that things are getting changed so frequently that his poor little body isn't going to know what's going on though, and won't cope well with all these frequent changes: so maybe I should give the Aptamil and Ranitidine a bit longer first..?

 

[Charmed86]

Listen to your instincts! What do they tell you? We swapped and changed so much & each time it just didn't seem like the right thing for us, it seems like you feel that way about the nutramigen? You probably didn't give it a fair chance, but I don't think I'd have wanted to either in your circumstances! It does take a little while to help & it does indeed make their poo green (& runny, and overall gross ). Reflux and cmpa go hand in hand! I'm on a couple of FB groups & they're so helpful. The majority of the babies on there are on a cmp free formula of some sort & a reflux med. a friend of mine has her LO on neocate and ranitidine. It was a bit silly of the dr to say that tbh, they perhaps don't have much experience of cmpa? Have a look at the cmpa delayed reactions. My LO doesn't have any GI symptoms, his symptoms were that he cried or screamed (in pain) a lot of the time. He didn't sleep much. He was super gassy. He would spit up. The biggest issue for me was the screaming. I feel like I have PTSD after going through 7 weeks of that! My confidence with him is shot & I'm full of anxiety now. It didn't help that the Drs and nurses kept telling me that babies do cry, this is normal, it's colic, I'm overfeeding him and so on. xxx

 

[MemmaJ]

I know what you mean - even though he's not my first, I never felt this way with my twins (they were a breeze!) and I've completely lost confidence in my ability to look after him and make sure he's ok when nothing is working! It's heartbreaking isn't it and you've done it for longer than me..!!

It's the Lipil Nutramigen I've got in the cupboard so I may try it again with gaviscon... (I've PM'd you with a question about that, hope that's ok!).