Reflux - Alfamino making things worse?

[HS90]

My little one is 7 weeks old, she was born prematurely at 34 weeks and has always been very unsettled at night. She lost 9.5% body weight at first and struggled to latch due to a high palette, tongue tie (snipped when she was two weeks old) and was fed by NGT in NICU as she hadn’t developed a sick/breathe/swallow reflex. I made the decision to Combi feed expressed milk and formula and have now switched to formula only. She screams and writhes around whenever she is lay down or even held in my arms. The only time she is settled is when lay on my chest when I’m sat upright.
The GP is ticking things off one at a time, so far we have tried gaviscon which took the edge off slightly but doesn’t seem to be working any more, Aptimil Pepti which she just kept vomiting back up (she isn’t usually a sicky baby) and today have started SMA Alfamino. She’s had two bottles of it so far, firstly it’s so thick she’s struggling to get it through the teat. She eventually managed to drink 3 ounces in an hour but has just vomited it everywhere and won’t stop screaming.

It’s currently 3am and I’m sat on the sofa with her upright on my chest which has stopped her screaming but I can’t stay like this forever. I haven’t had more than 2-3 hours sleep in any 24 hour period for the last two weeks. She won’t lie down in the day either so I’m in the same position and can’t even nap to try and catch up. DH is trying to help but keeps telling me how tired he is too - I know he’s at work all day but right now he’s upstairs sleeping soundly.

What can I ask the GP for next? Or is there anything else I can try?

[mrsk28]

Hi OP

Currently sat here with my 6 week old on my chest because I can't put him down for 30-60 mins after feeding. Before I would have been up from one feed to the next.

Thankfully the infant gaviscon is working well enough for us at the moment that DS is sleeping better. But the GP told us to give it 3-4 weeks and if it wasn't doing the trick then to go back and get a prescription for another reflux medication (can't remember the name).

Maybe give that a try? I know it's really hard when you feel like you're never going to sleep ever again!

Also don't do what I did and try suffer it out so your DH can sleep for work. I woke my DH up one morning at 4am in tears because I hadn't slept all night and he ended up going to work later just so I could sleep!

Minding a baby all day is very full on, especially when they have reflux because you can't even nap so get him to give you a break ❤️

[WhenZogateSuperworm]

After Gaviscon the next thing I would want to try is Ranitidine. It’s a medicine that reduces the amount of acid the stomach produces. Thicker milks aren’t often helpful. Go back to your GP.

[Figmentofimagination]

Omeprazole is another next step after infant gaviscon. That worked better for my son that infant gaviscon.
Also, switching to non cows milk formula. My son was diagnosed with cows milk protein allergy but not till after he turned 1, when we had started to switch to full fat cows milk from formula. It can be diagnosed earlier though.
My son used to sleep sat up for 30 mins after a feed. He also suffered from terrible trapped wind, so he would have infacol (started that from the first week) and gripe water (can be used from 1 month old). Gripe water was a lifesaver as it settled his stomach a lot.

[Teddyreddy]

Aptamil pepti is a partially hydrolysed formula, so much lower levels of cows milk protein. Alfamino is an amino acid formula so completely cows milk free. I know the amino acid formulas can make sickiness worse, I've seen people recommended to use carobel as a thickener - but if the formula is already too thick for your baby not sure that's a good idea.

The screaming unless upright thing is reflux which can be caused by a cows milk allergy - but can also just be a problem on its own. As pp have said, if its not an allergy treatments are ranitidine or omeprazole.

I'd go back to your GP although he may want you to try the Alfamino for a few more days to rule out a cows milk allergy. Have you tried raising up the head end of the cot to help with sleep (google wedgehog reflux )? DD lived in a sling for the first 4 months, do you have one - it makes the daytimes easier?

[HS90]

Thank you everyone. Yes her crib is lifted at the head end and I've ordered a sling for daytimes - fingers crossed it arrives soon. As it's the bank holiday I'll give it until Tuesday on the Alfamino before calling the GP again.

GP wants to try one thing at a time before moving on to the next so they can be crossed off if not working but I think I might give her some gaviscon tonight as well to see if that helps.

[tysonthekittycat]

Hey OP!

I know you haven’t posted on this for a long time and this may be a long shot! But, your original post sounds like I could have written it! My little boy born 6 weeks ago hasn’t gained any weight due to CMPA which was diagnosed Thursday. He can’t be led down, we tilt his crib, he was given pepti 1 and now he’s been given Alfamino. He is drinking so much more on it which makes me think he is happier however his reflux/acid seems worse?

What did you do in the end? Did your daughter get the help she needs? We are now under a consultant and a dietitian and I’m praying it helps! I don’t get any sleep and have two other children - my husband doesn’t see the problem with me being up all night and day and we both get super frustrated with eachother - he thinks it’s a competition when I say “I am tired” 😢😭 I feel like I should start the Gaviscon again as we were also given that to trial.

Hope to hear from you - take care x

[Pizzaandsushi]

@tysonthekittycat is he in any obvious pain that’s the question.
with amino acid formulas they’re very thin (original poster said hers was thick which is unusual is that the case with yours?) because they’re so thin it does tend to make reflux worse, especially as a baby becomes more mobile and so the issue is does that make them uncomfortable?
my baby now 9 months has had every reflux medication and tried nearly all the allergy formulas available.
you could certainly try Gaviscon (especially at nighttime) or omeprazole if you think the reflux is hurting but just remember sometimes there is no quick fix and these medications do come with they’re own issues.
My baby was on gaviscon for four months with every feed. It helped a bit but never fully got rid of the sick and in the end made him so constipated it wasn’t worth it.
we also went on omeprazole. The liquid version is better and easier. Again helped initially but the higher dose you go the more wind and tummy discomfort it causes so often you think it’s reflux pain and need to up the dose and it becomes a vicious cycle. Omeprazole also won’t stop the reflux just the pain.
you could try carobel as a thickener although some babies including mine have tummy problems with that as well.
We realised around month 5 he didn’t seem bothered by the sick but the medication wasn’t helping so took him off it all, kept with the amino acid formula neocate and slowly started to accept all the vomit.
Then when we started weaning the sick decreased dramatically and even more so as he sat up unaided and strengthened his core. He now doesn’t have reflux and barely anything comes up anymore.
You could also try a different amino acid formula. They’re supposed to be more or less the same but the infant feeding team we were under at Alder Hey said they don’t really know why but different ones seem to suit different babies. We tried puramino with some success, he wouldn’t even touch alfamino (both have soy oil in btw) and after the initial transition period on neocate, which the brand says causes more wind, we finally found it was the one that pretty much stopped all his discomfort.
It is extremely hard going though so I do understand. Hearing it may be months more is not fun and I remember when people said to me it does get better I just didn’t believe them and hated every feed but it does get better.

[tysonthekittycat]

Yes I thought the same the Alfamino isn’t thick at all so thought that wouldn’t help as it’s so thin. But we tried Gaviscon and I hated it (I hate using medication feel like it was just masking the problem aka CMPA) my doctor had put him on it we tried and we went back and said we found it made him sick more and I was worried about constipating baby.

My doctor was fab though as he said he could just give us omeprazole but he felt with baby not gaining weight and the constant pooing/mucus in poos/fussiness and what seems to be silent reflux that we should be referred I guess he knew it was CMPA and knew we could have bloods to rule anything else out but also we could get given the formula and now be consultant dietitian led! To be honest I think he has silent reflux as he’s not sick anymore he was projectile vomiting on pepti one and still had the mucus poos although was a lot more settled, so they moved us to Alfamino after being sent to the hospital - I’m in the same boat as OP though as we were on pepti and after two weeks it helped but baby still had a rash/vomiting worsened/mucus in poos etc ! I just feel like we’ve now changed and he’s got super fussy and factious again and like we’re back to square one (early days I know) with more acidic burps and smelling breath! Plus little spit ups!!!

The Alfamino smells ok?! Am I weird? It smells milky to me, but once drank and I smell DS’s breath it smells horrendous and makes me gag! I had hyperemesis for 30 weeks with this pregnancy and it just makes me feel like that again!

Currently week 6 of recovering from a pretty awful Csection with failed spinals, my other children have been unwell with sickness, baby is unsettled/going through this and seems uncomfortable and now I have managed to get covid for the first time🤷🏻‍♀️🥺 it’s never ending.

Ive heard neonate to be good, I will suggest this to our consultant & dietician if this one doesn’t work!

I know it really does just feel like I’m in a big black hole and I can’t escape! I know there will be an ending to this, have to stay positive! I guess it’s super hard when you’re in it! You’re right I hate every single feed! 😭

thank you for replying I’m glad your little one is better, thanks for giving me hope! ❤️ xx

[Pizzaandsushi]

@tysonthekittycat
I felt exactly the same about medication. I felt it was just masking a problem and never really helped the way I had hoped.
You could always try omeprazole if you think it’s silent reflux and remain at the lowest dose at least if it doesn’t help you can tick that off and stop wondering about that pathway. That was the thing for me as well. Exhaustion from constant thinking and researching how to help. Also the other problem which other people have with omeprazole is that as they get older they start to refuse it. My baby would either clamp his mouth shut or open his mouth so it all dribbled out so it was at that point I thought what’s the point!
It’s really really good to hear you have a supportive doctor. That’s half the battle in the beginning.
We trialed a similar partially hydrolysed formula called Nutramigen but symptoms returned in a few weeks. We also tried every bottle we could get our hands on, tried latex teats and nothing really helped.
We continued to have acidic breath on neocate and I mentioned this to our infant feeding team who said well yes of course they will, their stomach contains acid and that’s the way it’s supposed to be.
our feeding team were fantastic and so helpful but I quickly learnt that once our baby had settled on neocate and was gaining weight they were basically there to keep us going. To try and get us to keep plodding on with just a little bit of hope with the next “solution” until he got old enough the reflux stopped.
You really do have my sympathies. I also had a traumatic birth with a lot of blood loss and 3C tear. He was a really really miserable newborn and is still incredibly demanding. Every day for the first 5 months I wished someone would just sedate me so I could have a rest from it all, especially the feeding.
I can’t even imagine what it’s like with other children to look after as well. I really hope things get easier for you and I know they will. X

[tysonthekittycat]

Ahhh yes I’ve heard they start to refuse the omeprazole I’m not surprised to be honest! Must be relentless for them having all these medicines down them and because they can’t tell us what’s hurting etc it makes it so much worse!!!

Acid for us is awful imagine for their little tummies and throats - there must be something that helps.

Sounds a lot like my birth minus the tear, I lost a lot of blood and was in recovery a very long time!!!

He is up now squirming in pain from a feed. Screaming blue murder!!! Ahhhh that cry is horrendous!!

We have tried all the bottles too, mam, tommee tippee, dr browns, numbie?, nuk! Currently on the funny nuk latex ones!! But the Alfamino has made his gas really bad! He’s only been on it 4 days and it seems we’re back to square one again!!! Minus sickness and mucus poo!!!

Well I suppose that’s good to know! I wonder if he will gain on this? From birth he’s gained 100grams! But because he isn’t losing (thank god) they’re not going to rush to change unless we trial all these other ones!! Neocate sounds like the next step for us! I’m going to push for it and say no to nutrimigen! I heard Alfamino was a more palatable solution - I wonder if OP did anything different or even pushed for Neocate - it’s quite hard to find anything on this subject - when we were told to try Alfamino I instantly took to Google and wished I hadn’t as most experiences aren’t great!!

yes masking the problem isn’t good, it’s unfair and we would be in the same boat if we had carried on!

I can’t imagine what 5/6months feels like to be honest right now I am just traumatised by this whole experience my last two babies were so unbelievably chilled out, fed so well and we’re so happy and content - I know there are so many others worse off - honestly your replies have been so helpful! I hope you had someone like yourself to talk too ❤️ big hugs xxx

[Fluffyslipp3rs]

Hi, firstly sending lots of love as I remember desperately posting this one night at a complete loss of what to do!

She got worse that night and I ended up phoning 111 in the early hours as she was screaming and screaming and not keeping any of the bottles down. I spoke to a doctor who told me to take her off it and go back to a regular formula until I could get back into my GP. I got in the car and went to Sainsburys and ended up trying plain old Cow and Gate Comfort Milk and Dr Browns bottles with a size 2 teat as it’s thick and from that first bottle she was a different child. That day I had my first bit of sleep in weeks. She still had regular vomiting but not the screaming in agony and sleep made us all more sane!

Fast forward three years and she still has some tummy issues, just been diagnosed with a lactose intolerance rather than allergy so we are back to trialling reduced dairy.

I really hope things improve for you. Don’t give up! Xx

[Pizzaandsushi]

@tysonthekittycat yes we were the same. He was dropping percentiles (born 75th finally settled on 25th) but because he always gained a little weight they were never too worried.
unfortunately all our family live hours away and I’m the first one in my friends group to have a baby and first one to have give a grandchild on both sides so it was a HUGE shock to our system with very little help which is why I try to write as much as possible here because even if I can’t provide a solution I can tell you what we did try so if someone goes through the same thing and it doesn’t work they know they’re not alone.
We also went through a whole tongue tie situation. Back when I assumed I’d easily breastfeed (lol) we had a lady form Bambis say he has a tongue tie. Off to Alder Hey we went only for them to say he didn’t. Turns out Alder Hey don’t believe there’s enough research to back up the existence of posterior tongue ties and believe it’s cutting into normal anatomy. It’s a divided subject as after we got refused I read loads from mums who swear cutting made a difference and the other half who said it didn’t make a difference which I guess is Alder Hey’s point. Just thought I’d mention that side of feeding difficulties too in case that’s something that’s crossed your mind.
The only other thing I can think of is do you use a perfect prep machine? We do (obviously makes things super super easy) but noticed it creates a lot of bubbles which contributed to wind. The beauty of neocate is the formula needs to be added to cooled boiled water not boiling water. So we bought Nuby rapid cool flasks and at the start of the day boil the kettle, cool down the water using the flasks and then pour it all into a large thermos to keep it warm. This meant we could pour ready to drink warm water straight away when needed and there was minimal bubbles as they’d had a chance to settle.
I now realise some babies are just high needs and signallers that need your help a lot to settle no matter what is bothering them. Accepting that helps a little. My baby has always and often been described as alert by total strangers and needs constant stimulation. From the moment he wakes its go go go unless he’s unconscious (napping) and that is hard work in itself!! I always wanted at least two babies but after this,
as much as I adore my son, I don’t think I could ever go through this again or get my partner to agree. I think he’d think I’d gone mad 😂

[Fluffyslipp3rs]

@Pizzaandsushi I was also terrified of it happening again but our second baby was the complete opposite! No reflux, happily combi fed for six months and then fully formula fed! Not sure if it’s because our first was so difficult to settle that our second seemed easy but honestly it was a completely different experience! 😊

[Pizzaandsushi]

@Fluffyslipp3rs that is really good to hear! I do think besides any serious medical conditions we have had to deal with so many things with our little boy that a second would be a breeze in comparison even if it actually wasn’t simply because we’ve been through it all! Although I don’t think I’d know what to do with a chilled out baby. Probably worry just as much because it would be so different haha.

[Jme8888]

Please help. My son is on Alfamino - day 3 and tons of spit up and crying.
we have been on 5 formulas including Nutramigen and PurAmino. Now Alfamino and doctor wants to keep him on this to try.
did your baby succeed on Alfamino?
I need hope for better days

[HS90]

@Jme8888 hope you’re ok, those days were so tough for us so I can appreciate how you’re feeling.

Alfamino didn’t work for us in the end, ended up with comfort milk and some different bottles. Fast forward a few years though and my daughter was diagnosed with CMPA/mild lactose intolerance after experiencing migraines and everything else being ruled out. Seemed to explain those baby days. Definitely push for a referral to a paediatrician if you aren’t happy with how the different formulas are going though.

good luck and know you aren’t alone x

[tysonthekittycat]

Hey!!! Believe it or not I am writing this after all the troubles we had in the beginning back in December 22… my son is 10 months now, he is happy, thriving and at a wonderful weight. He is completely dairy and soya free. We were put on Alfamino and after the initial worry of thinking it wasn’t working it did we just kept going with it!!! ♥️♥️ he now has a few bottles a day but is much happier when eating - there is hope and I just want to say thank you OP for all your help when I was scouring the internet in the early days and amongst those sleepless nights of worry - I hope things work out for you. We still have the milk ladder to tackle but little steps, it’s been a hugeeeeeee learning curve but once I got my head around it all things became easier and I felt at ease.

thanks so much 💗

[Jme8888]

@tysonthekittycat what was your initial worry with Alfamino? My son woke up choking/gagging on spit up and he has not done that with any other formulas. I’m going crazy over here.

[tysonthekittycat]

Yes my son had the same, he would wake gagging and choking, I felt it was because Alfamino is very watery when made up - I raised his crib with a reflux wedge - our dietician gave us a thickener which helped but then we struggled with teats etc I instantly wrote off Alfamino but our paediatrician told us to keep using it, I had totally dismissed it, because I had read so much online about other formulas (it’s so easy to get into that spiral online looking at ppls experiences etc - I over analysed everything which is totally valid as you’re knackered and this is your child - you just want them to be happy and thriving - this was my third baby and my other two didn’t suffer with any allergies) plus being totally stressed my anxiety kept telling me there was something better and that I should push for something else. If you feel your little one isn’t doing well, I would speak to your paediatrician, go with your gut… How long has your little one been on it? Have they given you Gaviscon? How old is your little one?

You will get through this!! I know it’s so so so hard to believe that right now but this will pass - like OP said you’re not alone ❤️❤️❤️ x

[tysonthekittycat]

P.s we didn’t push for anything else we just went with what the paediatrician and dietitian said to do…we kept up with it, some days he would even refuse the bottle, we found the milk would clump too - we never wanted to shake the bottle to make it frothy and bubbly so would have to use a mini whisk to make sure it was clump free, stirring slowly - this all sounds bonkers! I even bought different bottles after trying sooo many and used the nuk ones - they were disposable ones the ONLY ones my little one would take - you may have seen them in the hospital, yellow in colour and attached to mini bottles of milk - I found a site that sold them in bulk 😑 I would definitely see if you can thicken Alfamino or if they will prescribe you Gaviscon (I really didn’t like using the Gaviscon but it helped him with the reflux.) we also had a reflux wedge in his pram - laying him down for the first 2 months was hell he wouldn’t lie flat, we found music and pink/white noise helped a lot too - we bought a Ewan deluxe sheep and he helped massively! I really hope some of this helps - sorry I’m waffling now - I have been there, it’s a really dark place but you are a mum and you really do know best and you’ll do whatever it takes to make sure your baby is safe and well xxx