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Allergies and intolerances

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Original poster

Possible cow's milk allergy in newborn - need help

26 replies

madeinnewport · 25/02/2022 18:00

Hello,

Need some help/advice, please. My 10-week-old (breastfed) baby was hospitalised 2 weeks ago due to vomiting bile. She had had a one-off formula feed not long before this happened, but we didn’t connect this to the vomiting at the time. She was in for 36 hours, x-rayed for a bowel obstruction, tested for stomach infections, etc., then discharged with no diagnosis or treatment. The vomiting occurred again this morning, the same extreme bright yellow bile that was coming up repeatedly over several hours and made her floppy and lethargic. I didn’t take her into hospital this time, partly because we had a bad experience last time (long story short, the hospital is in special measures), but mainly because I’m now pretty certain it’s a cow’s milk allergy, as she’d had a drink of formula again directly before this episode. She’s recently started omeprazole for reflux as she is generally uncomfortable and fussy, especially in evenings, crying in pain during and after feeding, making choking/ gagging noises, straining body, coughing, wheezing etc.

Does anyone have experience with this and can they offer general advice? I’m supposed to be back to work in a week so I planned to introduce mixed feeding. I’d rather not express due to time constraints but hypoallergenic/non-dairy formula is completely unknown territory to me. I have no idea whether it needs a prescription or can be bought online (not in the supermarket, I don’t think?), whether there are related dietary issues, and/or how much this matters if she’s still being breastfed most of the time? Is it a risk to go down this route without consulting a doctor and how useful are GPs in this situation, anyway? It’s a battle to see one at all at my surgery, even via phone consultation, so I don’t want to go through that if I’m going to get advice at the end that I could have found out myself. My sense is that GPs are unlikely to be particularly up-to-date on this kind of thing anyway, unless you’re very lucky, and a referral to a specialist could take weeks/months....

OP posts:
Twizbe · 25/02/2022 18:10

Mum to a CMPA child here.

Firstly with the evening crying - there is a thing called witching hours where baby cries tons but usually it's between set hours every night. Both my two cried non stop between 7 and 10pm. Didn't need to do anything about it as it passes when they got older. I'd just eat before it started and then sit and watch telly while feeding them.

Now the CMPA. My eldest struggled to put weight on and would projectile vomit after every formula feed. It was a vicious cycle of him not putting on weight, us giving formula and him puking his guts up. He was never sick after breastmilk.

So - go back to the GP and ask to see a paediatric dietician. She was amazing and diagnosed it. We got hypoallergenic formula on prescription. You can buy it, but it's super expensive and you should use it under some guidance because they still can react to it.

We mixed fed with it. He had 2 bottles every day at 10 and 3. He breastfed all the rest.

Can you delay your return to work by a few more weeks? At least until you've been seen and got them used to the formula?

Nelliephant1 · 25/02/2022 18:10

Lactose intolerance is extremely common in the population and babies so I'm sure your GP, health visitor and pharmacy will be well used to it and will know exactly what they're doing.

DanaBarrett · 25/02/2022 18:15

Probably not what you want to hear but my daughter was very allergic and it was simply easier to express milk for her. She reacted badly to the first formula we tried her on and so I decided it was easier to express.
I agree it might be easier to delay your return and have a chance to build up a stock for her so you’ve got a head start.

Carbiesdreamhouse · 25/02/2022 18:23

We found the "witching hours" stopped once we'd cut out dairy and soya.

dementedpixie · 25/02/2022 18:25

@Nelliephant1

Lactose intolerance is extremely common in the population and babies so I'm sure your GP, health visitor and pharmacy will be well used to it and will know exactly what they're doing.
It's not lactose intolerance (which is the sugar one milk) it's an issue with the cows milk protein.

Prescription milk would need to be prescribed as its very expensive.

PrittySticky · 25/02/2022 18:32

Can you contact your health visitor & ask her to refer you? Flowers

Twizbe · 25/02/2022 18:35

@Carbiesdreamhouse

We found the "witching hours" stopped once we'd cut out dairy and soya.
Interesting. I have one with the allergy and one without. Both had terrible witching hours so might just be one of those things.
CatherinedeBourgh · 25/02/2022 18:37

Mine had it. I had to cut out all dairy, beef and soya from my diet.

The standard hypoallergenic formula won’t do, you need a specific one which I think is only by prescription. Be warned, it tastes awful and many bf babies refuse it.

The good news is most babies grow out of it by their first birthday.

Thissucksmonkeynuts · 25/02/2022 18:40

Have you heard of a Milk Matters? The woman who runs it is an infant feeding specialist , I've had great help from her, it might be worth having a consultation if funds allow.

Original poster
madeinnewport · 25/02/2022 19:52

@CatherinedeBourgh

Mine had it. I had to cut out all dairy, beef and soya from my diet.

The standard hypoallergenic formula won’t do, you need a specific one which I think is only by prescription. Be warned, it tastes awful and many bf babies refuse it.

The good news is most babies grow out of it by their first birthday.

Do you know what the link is between soya and dairy? I've heard this before but never understood it.
OP posts:
CurtainTroubles · 25/02/2022 19:55

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CurtainTroubles · 25/02/2022 19:56

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whatworkhours · 25/02/2022 20:03

@Nelliephant1

Lactose intolerance is extremely common in the population and babies so I'm sure your GP, health visitor and pharmacy will be well used to it and will know exactly what they're doing.
Wrong information! As PP said, lactose intolerance and cows milk protein allergy are entirely different (but often confused). Primary lactose intolerance in babies is in fact very rare (just seems common as people wrongly self diagnosis).

OP, as someone else suggested you will need referral to paediatric dietitian from your GP......ask for referral.Ask GP to prescribe a hypoallergenic formula (if you want to mix feed)- best to get it all sorted before you start baby on solid foods. There are some good parent facebook groups or look at allergy UK website.

CurtainTroubles · 25/02/2022 20:04

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Original poster
madeinnewport · 25/02/2022 21:24

Thanks so much for everyone's helpful advice. It does sound like I'll have to take more time off if I can. I have a phone consultation with GP next Friday. How long does referral to a paediatrician usually take, in your experience? Are there viable alternatives (ie not soya) to the hypoallergenic formula, if babies tend not to like it? Or am I better off just forgetting formula and trying to express? I just feel expressing will be a lot of extra time taken up when I also have a 5yo and 2yo, plus work. I drink a lot of soya, and a bit of dairy, so I'll also try cutting out both entirely.

OP posts:
CurtainTroubles · 25/02/2022 21:36

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Crazytoddler83 · 25/02/2022 21:38

My dd has cmpa, I had to cut out all dairy when breastfeeding. It was only ‘diagnosed’ during COVID by my gp suggesting I stop dairy for 2 weeks. She went from vomiting 20+ times a day to hardly at all. Still wanted to feed all evening though!
I could still have soy. But when she weaned she gets an upset tummy and eczema if she has any. I think the protein is a similar shape.
She was prescribed nutramigen so I could mixed feed when I went back to work. She refused at first so I mixed expressed milk in and reduced the amount of expressed milk over 2/3 days. Then she was fine. So it’s definitely worth a try.
Now she has alpro growing up oat milk (she’s 18 months).

Goawayangryman · 25/02/2022 21:46

I think if money is available I'd probably see a private paed with a special interest in allergies. Sounds very likely to be CMPA but given your baby has been in hospital I think it is best to go the medical route.

You can get amino acid-based formulas like Nutramigen AA and Neocate without a prescription but they are ludicrously expensive - like, £25 for a tiny tin. And that was 10 years ago.

The main issue with these sorts of formulas as a pp has pointed out is palatability. They are absolutely rank and babies that develop feeding aversions can be both unhappy and challenging/ distressing to feed. If expressing is practical I'd definitely do that. It'll be easier. You're entitled to time at work to express if in the UK.

Duracellbunnywannabe · 25/02/2022 21:48

@Nelliephant1

Lactose intolerance is extremely common in the population and babies so I'm sure your GP, health visitor and pharmacy will be well used to it and will know exactly what they're doing.
Lactose intolerance is rare in babies. Babies are much more likely to have cmpa rather than lactose intolerance.
darlingsweetpea · 25/02/2022 21:54

My dd had cmpa and my gp prescribed Nutramigen and I never saw a paediatrician. When my dd turned one I saw a dietician to discuss the milk ladder.

I did say to my GP I couldn't breastfeed anymore so formula was the only option, which may have made it easier for them to prescribe. It was true that I couldn't bf, my milk dried up.

QuiltedHippo · 25/02/2022 21:57

Private paed if you can, where abouts are you? I had about a 3 month NHS wait to get diagnosed, in that time we'd been seen, tested, followed up and had time for me to change my diet and for it to take effect (took 3 weeks) thanks to our private appointments. Was about £250 I think though I have insurance. There are some recall issues with some dairy free formulas at the minute which may complicate things but I'm not an expert as we BF

CatherinedeBourgh · 25/02/2022 22:33

Do you know what the link is between soya and dairy? I've heard this before but never understood it.

Apparently the protein is a similar shape so many who react to cmp will also react to soya.

notanaturalmum · 25/02/2022 22:48

I think I went to my GP maybe once or twice and explained that DD who was prob 8 months at the time threw up after any brand of formula (she had the odd bottle from time to time but it just ended up being a waste of time due to the sick.)
Anyway I was panicking cos of going back to work. And he prescribed Similac. I don't remember having to fight for it or anything. It smelt horrific and at first she refused so I just used to give a her a teaspoon every so often to get her used to it. Or make porridge with it or something. And then eventually (maybe after a couple of weeks) she'd drink a bottle of it.
But then lockdown happened and I never ended up going on my girls weekend away so the whole weaning onto formula thing ended up being pointless.
But my point is, the GP seemed to be happy to prescribe it.
Good luck.

Jessicabrassica · 25/02/2022 22:58

I stopped eating dairy and DS stopped screaming all the time and he threw up much less. GP not convinced by the correlation. At 12mo I asked GP for dairy free formula for cereal. He said he couldn't prescribe it but referred us to the dietician. She was largely useless. But did prescribe neocate for cereal etc to save me expressing for meals. He transitioned to oat milk at 2 and at 10 dislikes cow's milk so still drinks oatly.

timetochangeusername · 25/02/2022 22:59

This happened to me except dd threw up blood.

Pay for a private allergy test and go straight to neocate on prescription