Talk to me about reflux in babies - baby in hospital

[MaverickSnoopy]

I gave birth 4 days ago. Since then I have had gastroenteritis and I think I might have the onset of an infection. I haven't slept in about 30 hours. I'm feeling very frazzled and emotional.

Newborn DD has just been admitted
to hospital with a whole raft of things, one of which is dehydration. They're giving her formula as she's lost 15% of her birthweight in 4 days (despite me feeding very regularly on demand and expressing when she seemed not to be getting what she needed).

I've noticed that she's very very windy. Vastly so. Takes about 20 minutes to wind and I have to fart her too (who knew that was a thing). Even then I can hear constant gurgling in her tummy. She's been fussing at the breast and pulling off and screaming (this could be because she has thrush). Have tried infacol which makes the wind easier to come up but that's it. She has just had 30ml formula and after the first 10ml she vomited some up and loads came out her nose too. She is also making a lot of gagging noises after eating. We got the wind up and she's lying in bed making these sort of gurgling/gasping noises. Almost sounds like she can't breathe. She's also just done 2 green poos. Last poo was early hours of this morning and was yellow.

Does this sound like reflux? Seeing doctors in the morning and want to discuss with them. Scared to fall asleep in case she chokes!

It sounds like a cow's milk protein allergy although the only test is to exclude it from diet/special formula and then reintroduce. I am sorry you have had such a rubbish start with her. It could also be a lactose allergy which is very different to cow's milk protein as lactose naturally occurs in breast milk even when cow's milk is not in mother's diet. I hope you are both better soon

Yep, sounds like CMPA/I. Quite unusual to show such definite symptoms this early, I think, so it could be quite a strong reaction.

The good thing is that you are in hospital, and can hopefully get on a meds and dietary regime ASAP, rather than to-ing and fro-ing to the GP for weeks, while they slowly try one thing after another, while your baby suffers.

Could also possibly be something structural in the oesophagus or throat, e.g. floppy tissues. Hopefully the Drs will do a thorough investigation.

Hope your DD is better very soon. How stressful for you. Do you have support?

Oh, if you are worried about choking (I totally get why you would be), you could ask for a breathing alarm.

Thank you I will go and ask now.

I'm going to write everything down to discuss tomorrow. Does CMPA or lactose intolerance present with a rash at all? One of the many reasons she's been admitted is because she has an unidentifiable rash which is quite alarming.

I do have support, although not here at the moment. DH has gone home for the night but will be back tomorrow. We have friends looking after our other children and my mum is popping in tomorrow. In the interim there is a wonderful nurse here who keeps coming in. She is so calming and motherly. She's been changing DD and feeding her as needed and insists I rest.

Trying very hard not to explode with tears. It's been a pretty overwhelming few days.

Yes, it's pretty classic for there to be a rash.

Poor you, it must feel very lonely right now, and such a worry. I really hope you get good medical attention. Is there a paediatric allergy clinic at the hospital? You could ask for DD to be seen by them. You're not by any chance in London, are you?

No...pretty outing but I'm at the JR in Oxford. It's a good hospital so they may do. I've noticed yesterday and today as my milk started to come in, her breathing get quite rapid and shaky. We thought she was cold but I've just seen that wheezing is a sign too and it sounds more like wheezing than being shivery. Going to take to her nurse.

She's set up with a monitor now and the nurse agrees and said she saw some signs of CMPA in her. So we'll see what the doctors say tomorrow. Thank you so much!

Or maybe floppy epiglottis/larynx. That may cause her to gulp down air and have wind as a consequence. Also explain any reflux and sounds of difficulty breathing. Just a suggestion. My son had it and my daughter has it now at 4 weeks, though both were mild cases and didn't/Don't do it all the time.

Having done some reading I'm pretty sure it's CMPA. I shall however bear the floppy laryx in mind.

I've just done a quicker symptom checker from the nestle research website and this is what she has:

Reflux and spit up
DiarrhoeaWheezing / noisy breathing
Runny nose or sneezing
Rash
Inconsolable crying (although less so after actually having eaten - she hasn't been eating enough the last couple of days, so I'm not sure about this one - since she's been eating she's just slept - seems that lethargy and fatigue could be a sign)
Colic
Poor sleeping (until she's been eating)
Refusal to feed

The thing is the lines are a bit blurred as to what these symptoms represent because she's been admitted for....dehydration, oral thrush, mild jaundice, an unidentifiable rash and they've also picked up on possible tounge tie. So it's hard to know which ailment is responsible for which symptom.

I'm absolutely going to push it though. She's had full blood tests and we're waiting on the results. I can that they can test to see if there are antibodies that fight against cows milk protein. Whether that's something that will be picked up in the testing they did, I don't know.

I did put paragraphs in I promise!

@MaverickSnoopy - sending you 

Sorry, posted too soon!
My DS had a dairy allergy which presented as large psoriatic looking welts, difficulty feeding, wind, very unsettled.
I often got poo pooed by doctors who said it was eczema, he was "just a bit of a bugger" (!!!!).
I wish now I'd pushed harder for it to be sorted.
Hope you get lots of support.

Oh OP, I'm so sorry for the stressful time you are going through, I remember the early days with a refluxy baby but never really knowing if it's reflux/colic/tongue tie/lactose intol/CMPA... beyond stressful.

You are in the depths of it now and I bet it's horrendous, but remember that you are getting lots of specialist support now in hospital and fingers crossed you can get on top of it all.

Ps. Congrats on your new baby :)

I would think that JR would have a paediatric allergy clinic. If possible, I would ask for one of the consultants to see DD. Also, if allergy/intolerance is diagnosed, even if just suspected, you could ask to go on the list for the outpatients clinic now. These services are usually wildly under-resourced, and it can take months to get a first appointment (our local one has over 3,000 just on the wait list, who haven't yet seen anyone....).

Hope you got some sleep.

Well it looks like you were all right. She's been admitted for quite a while and is on antibiotics and they need to do a lumber puncture too. They are confident it's CMPA. The doctor this morning poo pooed me but then consultant saw her and spoke in depth with myself and the nurse who looked after her last night and she agreed. Another doctor has seen her and they're taking it very seriously.

Up until yesterday she was ebf and having about 4 poos a day, which we all thought was great, but it turns out she wasn't getting enough milk from me and so actually 4 poos was rather a lot. She was put on normal formula to help bring her weight back up and that's when all of the bad symptoms became horrific. She's since been taken off and put onto aptimil pepti 1. In the last 24 hours she's done circa 30 diarrhoea type poos. She's very poorly. Will update more when I can. So much more going on (plus today I was diagnosed with an infection).

Thank you to everyone for signposting me. You have helped me to advocate for my daughter and I am externally grateful.

Poor thing that is v young to show such strong symptoms but it's good they have identified it and can now start a treatment plan. I'm not sure about the milk you mention but I understand there is a few that they try first and the last resort which is purely amino based is neocate. They are reluctant to prescribe that quickly as its v expensive but keep a close eye and don't let them fob you off unless you see ALL her symptoms subside

So sorry you are poorly too. All you need 

She has seen a consultant but not an allergy one yet. The consultant actually said because I don't have a huge amount of milk that I could continue to breastfeed her for a couple of days because the amount of dairy in my milk is so very little (based on the fact that I seem to have a low supply at this stage - because she wasn't transferring milk efficiently due to tounge tie and also the cmpa), that I could continue to feed her for a couple of days while in hospital until I'm able to cut dairy out of my diet and then express once I'm home until it's out of our systems. However I gave her a breastfeed last night and she was in a complete state and all of her symptoms flared up very aggressively within minutes. So at the very least I'm ever more confident now that she does have it.

When she was born I actually noticed a rash on her face (but it was much much milder) and commented on it at the time but was told it was just newborn rash. Then a couple of days later I asked the midwife and she said it was just newborn peeling skin.

Her reactions do seem quite severe but thankfully they're taking good care of her.

I wonder if anyone knows whether it's usual for her to be pooing so much still once moved onto a dairy free formula? Ive gone through about 6 nappies since the early hours. I'm just wondering whether it's the right formula. It's definitely better than before but she's not right yet by any stretch of the imagination.

I have a CMPA baby who is 14 months old.

From birth he was always a bit rashy, displayed upsetting signs of screaming and screaming for ages, screaming at the breast and not wanting to feed etc. He was initially put on ranitidine for reflux but when four weeks later he was still no better it was suggested to me that he may have a dairy allergy. He was 9 weeks old and this point and as I was breast feeding I cut out dairy and slowly his symptoms improved over the next few weeks. It can take up to 6 weeks for all dairy to be removed from your system and therefore baby continues to have it via your milk even if you aren’t eating it.

It’s good they’ve got your baby on the right milk but it may take a few days before you see a huge improvement in terms of his diarrhoea as his tummy will have been very inflamed from the dairy in your milk so it will take a while for it to clear out his system entirely.

He obviously has a very severe reaction for him to be so symptomatic from the outset.

What are your long term plans for feeding? Do you plan to express for a month or so until the dairy is out of your system and then try breast feeding again? Or will you stay with the formula?

I'm afraid I have no helpful input, but I'd like to congratulate you on how well you seem to be advocating for your LO, whilst in a difficult time and ill yourself.
You're impressive, you're doing great.
Things will get better, keep on hanging in there.
Hope things look up soon.

My son was hospitalised in emergency a few times with what eventually turned out to be reflux and CMPA. I was advised to completely cut milk and continue to breast feed as even a little bit of my milk (even contaminated) would help heal his gut, although they also advocated topping up with Neocate. (17 months in and we are still BF and Neocate feeding).

I hope you start to see an improvement soon x

Sorry you and your DD are having such a hard time

Has the tongue tie been divided yet?

If you want to continue breastfeeding, your breast milk will help her because it helps the gut to heal.

You will need to go dairy free but it’s not as hard as it seems at first.

Given the severity of her symptoms she probably needs Neocate if she is going to have formula. Some babies with CMPA still react to Aptamil Pepti 1.

So sorry to hear you are going through this maverick. Just wanted to say hello as we were on the pregnancy and birth thread together.
I hope things improve for you soon xxx

Thanks @NakedMum33and3rd it's a horrible time - you never expect these things to happen

Tounge tie hasn't been divided it's on my list of things to follow up today.

At the moment I'm expressing and throwing away while I get better. There's very limited access to dairy free food at the hospital and I'm so unwell I don't feel up to the effects of removing something from my diet, the challenge of trying to understand what I can/can't eat or the effect it might have on me energy wise while I'm trying to get better. My plan is to then mix feed because my supply isn't great - bear in mind that she'd lost 14% body weight by day 4. So if I did ebf it wouldn't be enough straight away anyway.

It seems there's still some doubt over whether this is cmpa or whether it's the side effects of a nasty infection. They've done tests to try and find out what the infection is but it's not straightforward. It could be that it's the nasty infection and cmpa. In addition when they switched her to the aptimil they gave her a bottle made with cold sterile water and it was only after that that the diarrhea started. However this also coincided with her having had greater volumes of milk and starting antibiotics, both of which can cause diarrhea.

She is doing much better now. Rash is about 80-90% improved and she's eating really really well and gaining weight. She seems to be thriving in fact BUT the doctors are being very cautious because they don't know what this infection is and they are talking about further antibiotics. I'm hesitant because the consultant we saw was quite against it so I need to discuss this with them today. I have so many notes written down with symptoms/times of feeds/conversations and questions to remember everything. I am doing my very best to advocate for her but yesterday I was in a bit of a state (well a lot of a state) and came home for the night leaving DH there. I've slept in my own bed and had a bath and emotionally feel a bit better. Leaving her was the hardest thing I've ever done but I had to do it to put me in a better place mentally and physically and it was wonderful to see my other children.

Im glad you’re feeling better.

A lot of dairy free milks can’t be made up with hot water because the heat kills some of the vitamins in it so to use room temperature sterile water is the correct thing to do.

I’m glad you’re seeing an improvement in the weight, that must be so reassuring for you.

As you said, antibiotics can cause diarrhoea so hopefully that’s the cause.

Sounds like you’re both going through a tough time but she’s clearly a fighter. It must have been very hard to leave her.

My CMPA baby had a tongue tie which was fixed when he was 9 days old. A lot of hospitals won’t do it though and a referral to the correct service has to be done which can take up to 6 weeks of you go through the NHS. I paid privately to get my sons done and they came to my house to do it the day after I called them.

Seeing as your baby reacts so severely to your milk then ask today to speak to a Dietician about where you go from in terms of how long you need to be dairy free for before you can start breast feeding again. A poster above said that breast milk can still be good as it heals the gut, which I agree with, but if you’re baby is reacting so badly with such pain then you need to weigh up whether it’s something you want to do. The Dietician will be able to advise you on going dairy free too because it can be very difficult at first.

I think you are right to focus on your recovery and that removing such a staple ingredient from your diet at this time may not be ideal. I know when I removed it from mine I felt very tired and weak for a few weeks because it’s does have an effect on your body.

Anyway, best of luck today and I hope you get some answers today.