Baby won’t take to amino acid formulas even with vanilla extract, breast milk mix etc! Help?

[Elliegmead]

Hello!

my baby has a cows milk protein allergy (we do know this is what it is as we tried to reintroduce it and it did not go well!) he is also already on omeprazole for silent reflux which really helped his tummy.

We are on prescription amino acid based formulas, first neocate and now nutrimagen pure amino.. we swapped from neocate as he HATED it and drank as little as 500mls a day (10 weeks old at this point), tried it out for over a month.

Just to add, we also introduced it with breast milk over a week mixing it together when originally prescribed it, and since swapping to nutrimagen (past nearly 3 weeks) i had no supply left, so got told to add vanilla.. so again tried that and he still hates the taste. He drinks about 600mls a day and is 13 weeks (14 tomorrow).

I will be ringing GP/health visitor etc and we have been referred to a dietician but in the meantime did anyone manage with anything else? He is definitely hungry and just takes the edge off with a few mls every feed. Is there anything I can specifically ask for with GP that baby will like more? I fear they just give me another formula he still hates..

thanks!

I'm a little bit confused. If you're mixing it with EBM is he still being BF sine of the time?

My DD wouldn't take it. Luckily I was able to continue to BF but I was always worried what would happen if I couldn't.

The "off the record" advice was to mix with Nesquik powder to make it more palatable.

Have you tried cutting dairy out of your own diet and doing more breastfeeding? I had a CMPA baby and the difference was immediate when I cut it out, and much better within two weeks. You can build your supply up again if you want to.

I originally mixed with breast milk nearly two months ago when he started neocate, as his allergy could have been dairy, soy etc we went onto the amino acid formulas to cut everything out and I stopped expressing as my BM would have had all of the above in it still.. on reflection should I have just cut everything out of my diet maybe so, but I had no idea the formula would be so awful and such hard work.

Thank you, I have also read this .. did you ever try it yourself? I am reluctant too without any suggestions from HV / GP.. as they did both suggest the vanilla extract but it’s not helped at all!

Ask your dr about Pregestimil - that's the only one my DS took to.

How much does he weigh? My DD2 is low centiles and was only drinking around 650ml of formula per day at that age anyway. I was topping her up with by BF as well but I think the amount of BM she was taking was negligible due to tongue tie / supply issues. I was told to work on the basis on 150ml x kg of weight per day. The formula boxes give the amount for average babies, which might be more than you need.

At the time, he had a severe tounge tie and never latched properly and we always struggled feeding as he was so impatient he’d scream and cry out of frustration (and i found it very overwhelming too), I expressed and even after building up my supply I was still not producing enough to keep up with him (at the time), with how little he drinks now I would be!

As they were unsure what the allergy was, i decided to just go onto the amino acid formula to cut out everything immediately to see some kind of relief, not realising how awful it would be and such hard work.. they told me he’d get use to it and take it as normal after ‘x’ amount of time.

I have considered trying to build supply again, which I may do if there is no other options but I still work on events sometimes 14hour days (weddings mainly) and unfortunately it does not coexist very well with an expressing schedule, sometimes you don’t get the chance to eat for 10 hours never mind find half an hour to express several times a day and then store it all whilst out and about, I don’t want to seem to be making excuses but also feel like there must be something for babies with allergies that isn’t so awful / a way to make it less so!

I originally mixed with breast milk nearly two months ago when he started neocate, as his allergy could have been dairy, soy etc we went onto the amino acid formulas to cut everything out and I stopped expressing as my BM would have had all of the above in it still.. on reflection should I have just cut everything out of my diet maybe so, but I had no idea the formula would be so awful and such hard work.

Well you weren't to know. It sounds as though it's all been difficult so far.

There have been lots of threads over the years where the LO will only drink Amino formula with added Nesquik and it doesn't seem to have done them any harm from what the NNers have said.

I'd give it a go

When I had my first 21 years ago, the 6 month weaning guidelines has just come in. So there was still a lot of gret area advice to wean from 4 months. I did a lot of reading round, it was long established that weaning pre 12 weeks was a definite no and harmful. But really nothing that says weaning from 16 weeks was harmful. Not sure if anyone would say wean from 16 weeks, but would this be possible and to use some of the milk in things? I thought there had been a bit of a dawning that allergies were worsening since the 24 weeks guidance came in?

our paediatrician said most kids who are breastfed just refuse it as it tastes/smells pretty bad. I didn’t even bother trying it 2nd time around, the first child completely refused it- are you able to express at all?

How is his reflux? Are you thickening the milks? They are notoriously thin and can make reflux worse so they might need higher doses of reflux treatment on the amino acid formulas. My daughter at that age massively reduced her breastfeeding due to reflux.
It's hard work but keep trying, try joining the cmpa Facebook group there are lots of parents who have been in your position there. We switched my daughter on to alfamino at 10 months after being breastfeed with a bottle aversion and she didn't drink for 26h! She then accepted the bottle and was on the formula until 2! She needed gaviscon in the milk alongside domperidone and omperazole. As an older baby her reflux caused her to guzzle milk so the opposite of a newborn.