Reaction to Nutramigen / Switching to Neocate

[laujyou]

Desperately looking for hypoallergenic formula advice!

At 4 weeks, my LO was moved onto Nutramigen for cow's milk intolerance after a lot of irritability, congestion, dry skin, bloody stools, and watery bowel movements every few hours.

The transition to Nutramigen was challenging as he wasn't overly fond of the taste but his symptoms quickly disappeared and he responded really well. By last week, he was back up to his usual intake of around 780ml a day.

After 3 weeks, however, we're now onto day four of experiencing some really nasty symptoms and I'm exhausted.

During almost every feed, LO chugs as if he's never been fed before, then screams in pain after only a few ounces and refuses to drink any more. He arches his back, tightens his fists, cries to the point of coughing, and it takes so long to calm him down. And frustratingly, he is still hungry, displaying feeding cues but simply will not eat.

Due to how thin Nutramigen is, he is left with incredible bouts of wind, despite me feeding him upright, and it sometimes takes a good 45 minutes to wind him. This is really hard during the night. He won't let me lie him back to comfort him even a little bit and demands to be sat up or leaned forward in an effort to relieve his pain.

He is also spitting up almost every time I lie him on his back to the point I'm having to change him. It's very watery spit up.

And finally he's constantly sneezing! I counted four in a row today! It's really odd.

I can only assume that these issues are a reaction to the Nutramigen. Has anyone else had similar issues with this formula?

Doctor prescribed infant Gaviscon today to treat or rule out reflux. I'm not fully convinced it's reflux. The one positive is that it thickens the formula.

If by the end of the week the Gaviscon doesn't work, the next step will be switching to Neocate, so I'm wondering if anyone has switched to Neocate from Nutramigen and whether it worked?

I'd obviously rather not switch formula again after how difficult the switch to Nutramigen was but would feel a lot more reassured if I heard from others who'd been through similar.

Thanks so much!

Hi yes we did. My daughter was extremely poorly on nutramogen so I carried on breastfeeding. It’s a long story as she was very poorly and doctors wouldn’t accept it was the milk as apparently most babies are fine on nutramogen. Anyway at 11 months she had a rast test and only then did they realise she had a very severe milk allergy and prescribed neocate. It took a long time to switch and I ended up expressing and mixing with neocate very gradually until at 18 months she was fully on neocate.

My daughter is now 13 and has a life threatening milk allergy and it’s been a very long journey and one I hope you don’t end up on. Push for what you feel you need.

Also I should have said, my daughter cried for the first 18 months. It was awful, but once she had switched, she was a different child. I assume she was still reacting to the dairy I was eating and she was getting through breast milk.

I'm so sorry to hear about your daughter. You must have been so frustrated and continue to be. Much of the time, it is a huge battle with the GP. Initially, they thought that the blood in his stool was simply a fissure from too much straining. Then as soon as we were referred to paeds, they diagnosed the allergy. Mother's instinct and also what we know about our own children plays a huge role. We need to be taken more seriously. Thank you for your reply. Pleased to hear the Neocate experience was positive for you in the end.

Yes we started on Nutramigen around 8 weeks old. There was a massive improvement to begin with until a few weeks later when symptoms started coming back. We were then put onto an amino acid formula and started with puramino but now on Neocate for the past 2 months.
Once we were on Neocate we knew it was the right formula for him as his skin was much better, no explosive mucusy poos and generally much happier.
However he is still very much a sicky baby. He’s never in pain with it anymore, it’s more of a laundry issue but the neocate is even thinner than Nutramigen so keeping it down is impossible.
we used to have him on gaviscon with every feed but after 4 months he ended up so constipated and was still sicking up even with the gaviscon so we took him off it and he was much more comfortable once the constipation issue was sorted. We also tried carobel to thicken but he reacted to that as it’s similar to soy so we just make do with the sick ups now.
The Neocate website does say to expect them to be windier at first and they aren’t wrong. Our baby was really windy for a few weeks which was a nightmare but now he barely has any wind.
He does also get a lot of trapped burps unfortunately but that’s very much to do with taking in too much air during bottle feedings. Like you we wind A LOT but there’s always more. You will notice it gets better with time. Once he was able to roll onto his tummy the burps would just pop out and he is also able to tolerate the uncomfortable-ness of them now he’s older (5.5 months) but it’s really hard when they’re so young watching them scream in pain. I’ve always maintained wind has been our biggest issue not reflux pain but I think until we start weaning and reduce bottle feeding there’s always going to be some wind.
as an extra note if you ever get put on omeprazole that also makes babies windy. It’s a fine like between helping reflux pain and causing more tummy discomfort. We use omeprazole but are currently weaning him off it as he never seems in pain from bringing up milk but is super whiny when he has wind and we notice he gets worse when we start a fresh bottle of omeprazole (the newer it is the more potent it is).
sorry for the essay! But I know what it’s like trying all these different things to try and help and nothing quite seems to be the solution. it’s really tough. I hope your lo finds the right formula and starts to feel better soon!
Have you had to do the milk challenge yet to confirm the allergy btw?

We switched to neocate due to a CMPI/CMPA issue that doctors refused to acknowledge until 6 months.

By which stage DC refused to drink it as it didn't taste great 🙄. Hopefully yours is young enough to adjust, but second the pp who talked about mixing with breast milk etc to get used to the taste.

(We switched to high calorie oat milk due to his age, which he tolerated, and by 2yo he was able to eat/drink dairy, so it may well pass for you too)

Wow. Thank you so much for the info @Pizzaandsushi. After posting this, we had a better night for feeds but a terrible night with constipation. LO writhed and grunted for a good few hours before absolutely erupting.

We also had another screaming match today during a feed in which we didn't use Gaviscon (we can only use it six times a day and he feeds every few hours so there has to be some without). That said, there's no doubt it's helping with something but now my question is whether the Gaviscon helped with the reflux it was prescribed for or did it just thicken the formula and reduce his wind?!

I bought some Carobel as an alternative so may try that tomorrow if we have another constipated evening! I really don't want to simply replace one issue with another which is what the Gaviscon is potentially doing for us right now.

Of course, there is still a strong chance the issue is with the formula. I'm really hating this trial and error period we're in now. How long do I give Gaviscon/Carobel before we request the switch to Neocate?

We haven't had to do a milk challenge to confirm the allergy. I didn't know this existed?!

@greyinganddecaying Not surprised your LO hated it. I've been told Neocate is even worse than Nutramigen and believe me Nutramigen is bad! My LO really suffers the Nutramigen and is only really drinking enough to suppress his hunger right now. He definitely doesn't enjoy the feed. It's really challenging especially when he's crying for a feed every two hours.

It’s a long time ago now but the first thing my daughter had was a blood test at 11 months, called a rast test. Since then she’s had skin prick tests every year. Her allergy is too severe to have ever been safe to do a milk challenge, but she did have an egg challenge when she was younger. They gave her a cake with egg in under supervision. I imagine milk is the same. Are you under paediatrics?

Which nutramigen? There are different ones. You need to be on the amino acid one not the ehf.
Symptoms will typically temporarily lift on an ehf then resurface again with CMPA. An amino acid gorilla is tge answer. You should be using nutramigen puramino formula. If you are and your LO is still reacting us unlikely a milk protein allergy changing to neocate will make no difference. Things like being upright more, improved winding and even an infant iosteopath might help. Good luck.

Formula...goodness knows where the gorilla came from. Auto correct and a child lying on me🙄

@icedancerlenny Yes, we're under paediatrics but haven't had a dietician follow up yet. Simply had the diagnosis. Guessing we'll see a dietician when he starts weaning?! It's startling how little information you get about it from doctors. I simply was told it's an intolerance, here's the new formula and that was it!

@GlamGiraffe He's on Nutramigen 1 (the hydrolysed one). It's just hard to pinpoint what the issue is. Wind, reflux, or formula. It's a minefield. I too think he needs to be on an amino acid formula but of course the cheaper option for NHS is to go through the motions with Gaviscon etc before they prescribe such an expensive formula. I get it but it's really frustrating 😫

Mine were useless until she had the tests and they realised how serious it was. Then it was epipen training and dietician. We first saw the dietician at 6 months, but by that point she’d been allergic to everything we had tried (baby rice, apples, pears, peas etc etc).

don’t let them fob you off. The number of times I was told ‘babies cry’ or ‘is this your first?’

Oh I completely sympathise! It’s an absolute nightmare. Your brain feels fried going round in circles trying to figure out if it’s wind, reflux pain, constipation, the formula. It’s endless. I also remember limited gaviscon sachets and in the end was folding the sachets in half and cutting to get 1.5 per feed which wasn’t ideal but felt I had to resort to silly things to make sure he had at least some gaviscon but not go over the 6 per day (it does increase to 12 per day when they get over 4.5kg btw).
There were many times I thought I just can’t do another feed, another day, another week to get to 6 months and starting weaning and when you have to give everything at least a few weeks to see, it’s absolute torture.
Unfortunately they probably will expect you to try the Nutramigen for 3-4 weeks before reviewing but once done push for neocate. They say it tastes worse but smell wise it doesn’t smell to bad if at all and absolutely nothing like Nutramigen!!! Although the poo smells are awful I must say but then so were Nutramigen poos. I suspect if yours will now drink Nutramigen he will drink Neocate. We had no problems switching over.
Neocate has no palm oil, no soy and no fish oil either so when we were put on it, I felt confident I could tick it off the list of things causing issues.
Try the carobel. We’re under the infant feeding team at Alder Hey Children’s hospital and they did say not to over do it. It’s not supposed to be thick like custard, more like single cream and they were happy with what I suggested which was a generous scoop in 5 ounces.
how much does your lo drink per feed?
It may be worth trying the omeprazole. Although you’ll want the liquid not tablets as they’re a nightmare to make up but the liquid is expensive and GPs can be reluctant to prescribe it but the lowest starting dose (2.5 mgs in 1.25 ml) did seem to help our baby initially and we only increased it once briefly before now cutting back.
I might be wrong but you will probably have to do the challenge at some point as the milk is so expensive they won’t want to prescribe it unnecessarily and limit your baby’s diet if he doesn’t actually have an allergy if you see what I mean.
Unfortunately it’s one of those situations you might never be able to pinpoint what it is and completely sort it but please know it WILL improve with time and one of the best things you can do is to try and get as much support as possible so you can rest and catch up on sleep to help you get through it all. Every day is another day done and another day you’ve done an amazing job.

Also have the doctors explained whether he has an IgE allergy or a delayed IgG milk allergy? I suspect the second one as that’s most common and the first one presents as what we would consider a true allergy (hives, swelling, anaphylaxis that sort of thing) whereas the delayed allergy is slightly different but cannot be picked up by a blood test and that’s why it has to be confirmed by doing the challenge where you reintroduce cow’s milk formula and see if symptoms return.

Yes we went from nutrimagen to neocate. Luckily the GP was very proactive to prescribe whatever was needed before input from the dietician so by the time I did speak to the dietician all symptoms were fine and they just gave us forward looking advice for weaning.

We suspected CMPA at 8 weeks when we switched from BM to formula. Main symptoms were digestive - constipation, trapped wind (digestive not burping), 4 days between pooing, DS constantly in pain and screaming from the digestive issues and things like bicycle legs not helping at all. He also had fairly mild baby acne.

We were put straight on to nutrimagen 1 and told to review in 2 weeks. Symptoms improved slightly but were still moderate. At that point the GP prescribed neocate LCP and made the referral to dietics. We have been on Neocate ever since (DS is 7.5 months) with no issues or symptoms. I'd say it took about 1.5 weeks for symptoms to settle after starting on the Neocate.

DS has to be dairy free until 1 to allow for a smooth weaning process, at which point we will start the "milk ladder" under the guidance of dietics.

Your gp should be able to refer you to a prescribing dietician in your area they are more experienceiced in milk and feeding problems. They will be able to directly prescribe the correct formula and your gp must follow their quidance. If a baby is doing very Well some are happy not to do a two week change and swith a baby back. Ask your gp about this or just insist. They do cave in eventually.

Hi all. I just wanted to provide a quick update after receiving so many kind and helpful responses. My LO was prescribed Neocate and we stopped the Gaviscon (all at my request), and to our huge relief, he is like a different baby. He burps brilliantly, can go to sleep right after a bottle, and is no longer in any discomfort. I'm completely amazed. Sadly, STILL no appointment with paeds dietician which frankly I find disgusting, but at least we've managed to reach a resolve with the GP! Thank you for all of your support!

Sounds like you found a resolution