Nutramigen Woes

[ShamrockTears]

Hi all,

We’ve had a very sad baby from about 2/3 weeks always concerning his digestion, pooing and farting. We had been prescribed Gaviscon and now omeprezol for silent reflux whilst I was EBF.

From week 3 I have asked if they think it might be CMPA and I was told no he would need to have AWFUL nappies in double digits, it was not double digits (at the time). However around three weeks ago I brought this up again as he had all the symptoms, sticky eye, rash on cheeks, dry skin around eyes, restlessness, crying and struggling to fart and poo. A very nice GP prescribed Nutramigen whilst I eliminated dairy to also be able to do 1 or 2 feeds a day in the future. (i know they say to feed through but this is not what I want to do knowing I have dairy in my system.)

Things seemed on the up until recently starting with a nappy rash that looks like burnt, raw blistered skin. We change his nappy as soon as he goes and we always use cream but it’s not touched it. A nurse suspected thrush however it was bacterial and worsened for five days before we challenged this again and got antibiotics .

He seems like he’s reverted back, pain in his belly, awful gas, is a struggle to burp, starting to get dry skin and mucus nappies. These are maybe 14 a day. Not all are huge however they are mostly pooping a bit when he farts, which again we change straight away due to his rash.

I guess what I’m asking is has anyone had this also and had a next step that’s helpful. My inkling is to ask to trial Neocate as I think LO might just be super sensitive to the remaining CMP in Nutramigen. As I said he mood seems a tad better, but the screaming regarding nappies and his pain has just replaced his issues poor mite.

Any mammas with experience I’d love to hear from you ahead of our GP appointment tomorrow!

Thanks in advance

[Wossupdoc]

Poor you and poor baby. How old is he?

Are you back to some breastfeeds now? The proteins have been shown to be eliminated from the body within days in some studies. Breastmilk will help to heal the damage to his gut, and provides pain relief. Breastmilk applied to the skin may help his rash too.

Have you also cut out soy? Around half of CMPA babies react to that.

Definitely sounds like he needs to try Neocate as that has zero cow milk protein or soy, as you know.

Sorry you got given misinformation. This wesbite is great https://dilanandme.com/

[KangaRoo222]

Hi ShamrockTears,

Doesn't sound like you were first advised well by whoever said he has to have awful nappies in double digits. The NICE guidelines don't say anything about numbers and you may find the site generally helpful about diagnosis of other conditions.

Some Nutramigen was recalled and not all pharmacists have made themselves aware in time, so it is worth checking whether your batch numbers are affected.

In some of those cases, prescriptions have been switched to Aptamil Pepti so you could ask whether that is an option for you.

I don't know how old he is or if he is anywhere near weaning age, as solids can often improve things, but I wanted to congratulate you for however long you are/have been persevering with breastfeeding as it is not always easy, especially not in these circumstances.

Good luck with the GP tomorrow 💐

[ShamrockTears]

Hi thanks for your replies!

he is 12 weeks this Friday so still a tot in the grand scheme! I intend to start breast feeding again end of this week so will be letting him latch and pump during the week to up my supply again, however he has a terrible latch and we’ve had a real rough journey in breast feeding so it will only be 1 or 2 feeds a day.

i haven’t completely cut soy, but if that’s needed I of course will as it’s short term. I did think Pepti 1 still had cows milk too? I was sure there was lactose but could’ve been the one I bought was wrong?

im hoping Neocate may be an answer. His poos are worse for sure, a split of pure liquid and almost like pebbles/grains. The amount he is pooping isn’t giving his little rash a chance to heal either poor mite.

our GP is very understanding so hoping we can move forward but it’s always good to know how other people navigated this journey!

[ThankGodForDancingFruit]

Oh poor little thing, it sounds miserable for you all.

A poor latch can also cause wind, pain, mucous, and frequent nappies. Definitely get some support around this, do you have a local La Leche League or breastfeeding peer support group?

[ShamrockTears]

Yes I had support from the breast feeding team locally but we didn’t get a resolve. I swear I tried every position, shields, compresses, moving his chin but no luck. I’ve also ended up with mastitis and thrush twice so I’ve really tried to preserver but it’s been very difficult.

I don’t think the bad latch is the link however as the poos are still worse with formula feeding!

fingers crossed my LO gets a break soon!

[Wossupdoc]

Lordy what haven't you been through. You poor thing. Do you know what level of support you had? (peer supporter/counsellor/IBCLC?) Did you find it any good? It sounds like you need to speak with an IBLC. If it might help you to chat through all of this the national breastfeeding support helpline (BF counsellor level) is open day and night.

Has he been thoroghly asessed for tongue tie, even the more hidden 'posterior' tongue tie?

If you feel up to it, the more breastmilk the better right now even with some remaining milk proteins will be better for him than nutrimigen as he is obviousy reacting to that, whilst you are waiting for Neocate, and breastmilk heals the gut and as you said his poos are better on it. I know it will take a while to up your suppy, tonnes of skin to skin will help and power pumping, if you're not already doing so. Go easy on yourself! This will get better.