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Infant feeding

Get advice and support with infant feeding from other users here.

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Original poster

Silent Reflux, out of options

40 replies

PL2021 · 26/12/2021 06:54

DD has been suffering with silent reflux for many weeks now. We have been through what I feel is every option of treatment available, and nothing is working for her. First she was on Gaviscon which worked for a short while and then stopped. Then she was put on Omeprazole which did really help the Silent Reflux, however wreaked havoc with her tummy and caused major constipation and tummy ache and we had even worse crying for days upon end and ended up at an out of hours GP for some lactulose to help clear her out, so we discontinued the omep as it was awful to see her in so much pain. The GP suggested using just Carobel alone, so that is what we have done for the past week. It is helping the Silent Reflux in terms of stopping as much pain from the acid, as we don't seem to have as much screaming anymore. However she is still bringing up acid in burps and whilst sleeping as she will grimace and let out little cries. Whilst this is still a huge improvement to before, the Carobel is now also wreaking havoc with the other end in a different way. Her stools started becoming very yellow and loose, and now she has started going in the middle of the night which she has never done before. I can only assume it is from the Carobel and it is causing slight Diarrhoea. The stools do have some lumpy bits (sorry tmi) but they are mostly very loose and in very large amounts. She also has been very restless during the days not getting much sleep.

I am totally at my wits end and out of options. Does anyone have any other suggestions? Is there something that I haven't tried that I could?

We do all of the holding upright after a feed and raising the head of the cot etc etc, but she will still do her acid burps 2/3/4 hours after a feed

OP posts:

Yolo773 · 27/12/2021 09:24

My little boy would struggle more in the evening and during the night with his bottles.
Gripe water helped a lot during those times as it settles their tummy.

Also have you tried pumping her legs to release gas? She could be very windy?

The more I tired to burp DS the worse acid/discomfort he got. Probably from too much jiggling and movement.

Luckyducky75 · 27/12/2021 09:24

We had 2 babies exactly the same, we had to persevere with the omeprazole in the end, it's the only thing that works. Put carobel and a couple of drops of infacol in the milk. We also gave lactulose on a daily basis. A wedgehog for her cot will help keep her raised at night as well. It's gruesome but does end eventually xxx

Original poster

PL2021 · 27/12/2021 09:26

The thing that confuses me is that some bottles she will take fine and be fine after, but others she will scream bloody murder and take 2oz and not take any more. If it was an allergy, wouldn't she be the same after every bottle rather than being okay on some?

OP posts:

Original poster

PL2021 · 27/12/2021 09:31

Oops sorry, posted the same thing twice because it wasn't showing as posted the first time.

She is very very windy, all she seems to do is trump. I do leg cycling and tummy massage which does release some but she still continue to trump all of the time.

I dont want to start back on the Omep or Carobel at the moment because they both caused her immense troubles and pain and I dont intend to put her through that again at the moment. And I believe she is currently constipated again which is the main cause for most of her crying at the moment. I'm unsure what is causing this constipation as she's had no medications in her bottles for a couple of days now

OP posts:

Darklava09 · 27/12/2021 10:09

Omeprazole does take at least 2 weeks to settle and not every parent is made aware of this. We’ve increased the doseage again and in the middle of the worst acid battle yet but will push through as we’ve had real success over it.
Carobel causes my LO horrific wind where he cried all day. It was terrible.

Nutramigin made things worse for us. We’re currently on Neocate.

Original poster

PL2021 · 27/12/2021 14:31

Update for you guys...

Phoned around half of the UK to find a pharmacy that had Nutramegin in stock today, finally found one, got home and give her the first feed with it.... she took it all so at least the taste didn't make her spit it straight out! Fingers crossed she continues that way. It smells like cheesy dog biscuits to me haha!

I didnt realise how small the tub would be! It's only going to last her 3 days tops if she goes back to having her 5/6oz feeds

OP posts:

Original poster

PL2021 · 27/12/2021 14:36

Also, did anyone store their Nutramigen in a different container? With her Hipp Formula I bought the tub off their website that has the scoop leveler on the side.. I'm already finding it a right faff to level the Nutramigen scoops off with a knife rather than having a lever at the top of the tin... I'm fussy I know

OP posts:

Yolo773 · 27/12/2021 15:33

I used to scrape the top of the scoop on the ridge of the container. Yes very small tubs. When you get a prescription they normally give you a couple of weeks worth, so for example, we would get about 4 boxes to last us.

Original poster

PL2021 · 27/12/2021 17:56

@Yolo773 ah I will try that! For now I have decanted enough feeds for the day into a MAM milk dispenser tub so I only have to measure them out once instead of on every bottle

I tasted it on her last feed and it really does taste awful doesn't it It also tasted quite grainy. Is this normal or was it not mixed properly? I followed the manufacturer guidelines and give it a good shake and stir but still tasted slightly grainy

OP posts:

Yolo773 · 27/12/2021 19:42

I can’t remember it being grainy. I just remember it being very liquidy, almost like water consistency. It’s really thin.

I really found the instructions confusing, but only because I was so worried I was getting it wrong or would make ds even more poorly.

Nutramigen should not be made with hot water. I used to boil the water and put it into the clean bottles and leave to cool, then add the amount of scoops needed. I also wouldn’t really shake the bottles, I would do a swishy motion 😂 if that makes any sense! As it would sometimes go frothy if it was shaken too much. And I didn’t like the thought of ds drinking all of those bubbles in case it made him more gassy!!
I would also make up a couple of bottles and leave in fridge.
Which my health visitor actually said to do as to as nutramigen is already made with cooled boiled water. But if you don’t feel comfortable doing that then you can make the bottles fresh each time. But when you have a hungry baby you do NOT have time to wait for half an hour for the water to cool.

I’m sure you are doing all of to correct things. Have you used a level scoop of formula?
Is the scoop dry? Sometimes if it got wet it would make the formula powder stick together and grainy.
Have you tried different bottles?

Original poster

PL2021 · 27/12/2021 20:02

@Yolo773 The first couple of bottles we used the Tommee Tippee perfect prep machine, but we did the hot shot and the cold water together, and then put the powder in at the end. On the third bottle we have boiled the kettle and put the correct amount of water into her bottle and left on the counter to cool down to toom temperature, and then added the powder when she was ready for the feed and fed straight away. This time it didn't go grainy, so maybe the PP machine was still too warm even with the hot and cold shot together before the powder. So I think I will continue by making up enough bottles of cooled boiled water for the day and leave at room temperature and add the scoops as and when needed

Thank you for all of your advice!

OP posts:

Yolo773 · 27/12/2021 20:08

Brilliant.

Hope you see a difference soon!

I completely understand and sympathise.
It’s so draining and worrying when your baby won’t settle.

SnugKnights · 28/12/2021 18:39

@PL2021

We asked for Ranitidine but we were told that it has been discontinued... not sure how true that is but that's what they said to us after asking and asking for it.

DD seems to be constipated again now (I think) since stopping the carobel which was giving her Diarrhoea. She's been crying all day and trumping loads but hasn't pooped today and seems to be really uncomfortable again.

I'm keeping everything crossed that she takes well to the Nutramigen because I dont know how much more I can take!

It is true that Ranitidine has been discontinued for both adults and children. I hope she improves with the Nutramigen.

Original poster

PL2021 · 28/12/2021 19:35

We have today been thickening the Nutramigen with Carobel as her reflux has been worse since starting this milk and she's been bringing up more than usual!

Also one thing we have noticed is that on this Nutramigen she won't burp! We can rub and pat for ages and ages and she won't burp at all, has anyone else experienced this with this milk?

OP posts:

Luckyducky75 · 28/12/2021 19:59

@PL2021

We have today been thickening the Nutramigen with Carobel as her reflux has been worse since starting this milk and she's been bringing up more than usual!

Also one thing we have noticed is that on this Nutramigen she won't burp! We can rub and pat for ages and ages and she won't burp at all, has anyone else experienced this with this milk?

Oh God yes I'd forgotten this, ours has the same issue, we changed milk again they really disliked it ☹️

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