Reflux/Lactose Intolerance?? Baby won’t take Nutramigen. NIGHTMARE!

[Helpmeimtired]

Hello everyone.

Hoping to here from people that have had success giving Nutramigen or any other lactose free formula to their child.

Our Dr suspects lactose intolerance which is causing reflux in my boy. We’ve been given Nutramaigen and he took the first 3oz absolutely no problem but then refused the remaining 3oz and had a completely melt down. He then didn’t want to take his regular formula (Hipp Organic) afterwards for a few hours (he did eventually) and were concerned if we persist like the guidance suggests that he’ll develop a bottle aversion which we are terrified of.

I’ve read threads on here that suggest mixing it in with the regular formula and slowly increase the scoops until it’s completely swapped over. Has anyone done this with success? If so what was your technique? Is it safe to mix formulas?

I’ve also seen people suggest adding vanilla essence or nesquick. Again is there any success stories? How much did you add?

Were quite cautious about giving him anything other then formula as I know their digestive system at this age is very fragile.

Below is a bit of background about our story if anyone else has a bit more advice as to what we should do. It’s been quite a hellish 10 weeks and we’re really starting to struggle now with all hope and light at the end of the tunnel fading with each day.

My DS is 10 weeks. About a month ago was diagnosed with silent(ish) reflux. I say silentish because he does vomit but it’s quite inconsistent, same days it’s bad, others it’s fine, but the discomfort he’s been in has been constant. Incessant crying, can see he has a bad taste in his mouth and is trying to get something up/keep something down. Is nearly impossible for him to day nap unless swaddled and rocked (with varying success) or taken for a walk in the carrier. If I get him down for a nap during the day we’re talking 30 mins max. Meaning I have a very overtired boy who isn’t happy. He also isn’t great at being on his back, so the we can only use the pram with the car seat attached as he’s sat upright in there.

Anyways, we were prescribed Omeprazol about a month ago and did see some improvement, however in the last week he’s got progressively worse and the Dr’s have now upped his dose to 2.5 from 1.5 as he’s now in the coarrect weight bracket for it, and also prescribed Nutrimagen as he thinks the reflux could be caused by lactose intolerance.

He is congested all the time which I have read could be down to allergies. So maybe there’s something in it?

Tbh the Dr hadn’t even set an eye on my baby before he prescribed this, and I had to suggest he weigh him and up his Omeprazole dose myself which didn’t even cross his mind.

I am willing to try the Nutramigen or other alternative as long as it doesn’t distress DS and put him off feeding.

Does this sound like a Dr just ticking boxes and working through the process?

Anyone else have a similar story?

The strange thing is, after that 3oz of Nutrimagen yesterday evening he was very calm and content and there was a definite difference in his temperament. However I am sceptical the Nutramigen could work so quickly especially as he has a tiny amount and I believe the lactose can take weeks to leave the system. It could. Also of been the increased Omeprazole dose which did the trick. We’ll have to see how he is today.

Hi OP,

I’m going through this at the moment with our 6 week old. Constant screaming for hours after a feed, sucking her hands after one, being sick on occasion, sounding like she’s got a cold, gasping/coughing when feeding and very noisily, regular hiccups, not napping in the day or if she does, frequently waking and a red pimply rash around her face/neck. Only time she’ll sleep well is in the car - in a pram she’ll stir the second you stop. We’re going down the line of reflux and or CMPA.

We’re on Neocate which is the step up from Nutramigen. My HV told me that unfortunately it’s not a quick fix and it’s all trial and error to rule things out. They wanted us to stay on Nutramigen for a while but we pushed for Neocate as her screaming wasn’t getting any better and we were worried for my mental health. We’re still not there now so don’t know what to do aside from continually review with GP/HV.
We’ve been given Gaviscon but it made her constipated and something else to scream about.

We were told to just change completely to the Nutramigen from her formula without mixing etc. You won’t see perfection straight away but you should see some indication within 24 hours we were told. HV told me a couple of weeks on a formula to ‘trial’ it.
You can add vanilla extract to a feed, just make sure it’s one with no alcohol in ingredients wise. You can also try changing teats to a faster flowing, medium one as the formula can cause them to struggle to get it out; our DD just kept falling asleep before taking much.

It’s definitely a slow, agonising process because it’s not like a typical illness you’d get a definite diagnosis and medication for. Hang in there, it’s a bloody awful time! If you feel Nutramigen isn’t working, push for Neocate.

We ended up in a&e with dehydration after being prescribed nutrimigen- she just would not take it, don't blame her it smells horrific! We were then moved to neocate which she took no problem at all.

Thanks for your reply. Does you LO drink the Neoctate then? And we’re you advised to add vanilla by Doc/HV? Any guidance on how much to add?

Even just the scoop in Neocate is so much better ha.

My DD drinks Neocate much better. It was the community nurse who works with the HV who advised vanilla extract.
We didn’t do it in the end as she moved to Neocate and was fine taking it but I think it’s only a drop or so advised.

Does your doctor think it’s lactose intolerance or cmpa (cow’s milk protein allergy). They’re two different things and whilst I think nutramigen is lactose free so would solve things if a baby was lactose intolerant (quite rare btw), it is still made from cow’s milk and babies with cmpa can still react to nutramigen and need to have a completely synthetic amino acid formula like neocate/puramino/alfamino.
If your doctor suspects cmpa and you don’t think the Nutramigen is helping then I would push for an amino acid formula.

The other issue with omeprazole is that although it can help with reflux pain it also causes tummy discomfort and an increase in wind, especially the higher the dose. So it is a fine balance between treating pain caused from acid and giving so much that it starts to cause other issue.
I would also be asking your doctor for a referral to an Infant Feeding Team and paediatric dietician who would be better placed to help you with feeding issues and you would need anyway to go through the milk ladder when your child turns one.

Lactose intolerance is extremely rare compared to Cows Milk Protein Allergy. It’s much more likely your little one has that.

My 8 year old is allergic to dairy. It was awful when he was on bottles but once he hit 6 months and could have finger foods and purée life got MUCH easier.

I know that seems like a mile off now with the long days and nights.

Hope you find something that works for LO soon x

@halloumi1 omg the scoop!! Why do they make it like that? Puramino’s scoop is the same (made by Nutramigen so makes sense) but Nutramigen is so well known and is pretty much any hospital’s first choice when treating cmpa you’d think the company would design it better.
trying to level it off whilst your baby is screaming the house down for a bottle at 1am is so stressful 😂. I was willing my baby to do well on Neocate (which he did) just because of the scoop haha.

Thanks for replies.

The lactose intolerance just seemed to be something he through out into the air as we said the LO’s crying and colic and had got worse. Our first suspicion was that the Omeprazol was too low of a dose for his weight. We didn’t suspect Lactose intolerance or CMPA before although I have read a lot about it.

He didn’t even examine him before he was prescribing Nutramigen. I was sceptical from the start.

But the issue is we’re unable to tell if the new formula will help as LO won’t take it.

I will ask for Neoctate today to see if he will take it and hopefully we will see some improvement.

My judgement is clouded though as LO was happy as can be yesterday eve after 90ml of Nutramigen, but I can’t imagine it would work that quickly. Could of been the fact we ensures he slept more yesterday (we basically walked all day in pram/carrier so he could sleep) or the increased dose of Omeprazol

@Helpmeimtired how did you get on with baby taking the nutramigen? We’ve been given neocate but my baby just will not drink it!

The Dr has given us Aptamil Pepti 1 now, and we are slowly mixing it into his normal formula and increasing the scoops each day.

Hopefully he doesn’t notice!

Hi OP, just wondering how you got on. We're just starting this (crap) journey now.

Hey,

we were able to successfully swap DS over to Aptamil Pepti by mixing it with regular formulae and gradually increasing. He’s been on it now exclusively for about 4 weeks and is a completely different baby.

Feel free to message me if you have any questions.

That's amazing OP, thanks for updating. We are just starting with nutramigen

Hi, how did you get on with nutramigen after? We’re just starting it now