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Symptoms returning-nutramigen

10 replies

Mummy2lilC · 27/08/2016 15:50

Hi everyone,

My LB who is 9 weeks has recently been diagnosed with a cows milk allergy and reflux by the dietician. This began at about 2 weeks old. We have now been on nutramigen for a month. To begin with it worked and his symptoms got so much better, even though he still had mild symptoms. Within the last week his symptoms have worsened and I feel like we are at square one again 😢 I could literally sit and cry :(
Have any of you experienced this with nutramigen?
We did try neocate for all of 3 days but our LB with so windy and would bring it back up so easily. So we decided to stick with nutramigen. Just don't know what to do anymore, I feel like We have tried most things 😢 I feel so sorry for him having to go through this. I'm stressed too and so tired with lack of sleep. Sorry for the long post! Xx

OP posts:
Soubriquet · 27/08/2016 15:52

Which nutramigen is it?

There's two types

Nutramigen lipil 1 which is just lactose free and nutramigen puramino which cows protein free

One is suitable for CMPA the other isn't

Mummy2lilC · 27/08/2016 19:41

It's the lipil 1. I know there is still some milk protein in it, the dietician advised we kept going with this one. But over the last week his symptoms have got worse again. So fussy and irritable, been throwing up more. Now using carobel though

OP posts:
Kim82 · 27/08/2016 19:46

I was going to ask the same as Soubriquet. lipil 1 still has cows milk protein in it, it's just broken down more than regular formula. If your baby is still reacting to that then it's likely he's going to need Nutramigen Puramino which is made with amino acids and has now milk protein in it whatsoever. My daughter did what your baby seems to be doing - settled on Lipil 1 initially but two weeks later her symptoms came back - but once she was swapped over to puramino all her cmpi symptoms disappeared.

I'd see if you can get back in to see the dietician or paediatrician and ask for the puramino to see if that helps. Good luck!

Mummy2lilC · 28/08/2016 03:53

Thank you. How was your LO when you switched her over to the amino formula. Our LB tried neocate for 3 days and got such bad wind. That's why we stuck with nutramigen. Maybe we didn't give it long enough to see a difference.

OP posts:
Kim82 · 28/08/2016 07:31

It took a week or so for the milk protein to leave her system but after that she was much better. She wasn't 100% as she also suffered with acid reflux, it took another month or two to sort the right meds for that but once that was done she was completely symptom free from then on and like a different child.

Soubriquet · 28/08/2016 09:26

Mine changed within 24 hours once on the amino. Completely different child. 8 months!! 8 fucking months it took for the doctors to listen to me.
8 months of constant screaming and one hospital admit.

Go back to your GP and request some puramino.

Mummy2lilC · 28/08/2016 09:51

8 months that's so bad!! They aren't the ones having to live with it all. Glad you've got it sort. I changed docs as my previous ones were so bad. Think I'll look into the amino acid formula

OP posts:
FlumptyDumpty · 28/08/2016 10:00

There's also SMA Alfamino now, which our allergy clinic (St Mary's Paddington) prefer over Neocate. It apparently tastes much nicer and less bitter than Neocate and Nutramigen, and is cheaper than Neocate (though just as good), so you may find it easier to get a prescription for. My DD much prefers it to the Nutramigen Lipil, which she was on previously.

WorkHardPlayHarder37 · 02/09/2016 10:41

We tried Nutramigen when with our then 8 month old who has a serious dairy allergy. I was trying to cut back on breastfeeding but she wouldn't have any of it and I know why. Just the smell of mixing the feed made me gag!
We got moved to Aptamil Pepti 1 (now on 2) and we've had no problems. I don't know why it's not prescribed more often, IMO it's by far the better product. Good luck.

cherrypiemay16 · 15/09/2016 21:10

Have you got decent medication for his reflux?

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