Struggling :(

[Smellybears]

Don’t know what to do. A few of you will probably recognise my name and see that I’ve been posting about reflux and cmpa.
My son was finally diagnosed on Friday with cmpa. He’s been diagnosed with reflux at about 3 weeks old, gaviscon did nothing and the specialist stopped the ranitidine on Friday (to be honest it wasn’t really doing anything). Anyway, little one is ten weeks old and started nitramigen on Friday which has helped a lot with his poo, he was having 12-15 diarrhea poops a day, now a lot less. I’m really struggling though and don’t know what to do. Baby is now drinking less milk, I struggle to get three ounces in him every 3-4 hours. He’s then sicking skit back up. Ive only managed to get an ounce in him now as he’s scrunching up in pain, screaming, arching back, straightening out, stomach gurgling. I couldn’t get him to have anymore.
Through the night he’s hardly slept. The past few nights I’ve had about two hours sleep and last night it feels like less. I’m now struggling and really don’t know what to do. I know if I call the specialist she will say that I haven’t given the milk long enough to work yet.
I don’t really know what I’m expecting in replies, I’m just sounding off I think

Forgot to add, I think he has been suffering with a touch of colic too. He’s on dr browns bottles already and has been from birth

HI OP, another CMPA baby here.

Nutramigen still has cows protein in it but it’s sipposed to be in a form that’s much easier for babies to digest. Some babies however still cannot tolerate this, are still in pain with feeds and require a milk that is complete free of cows milk protein.

I think it’s called Aptamil Pepti so go back to your GP and discuss it with them.

My little one was diagnosed with CMPA at 9 weeks old and it’s an incredibly stressful diagnosis for lots of reasons. You have my sympathies

Thank you!
I just feel so helpless when he’s screaming in pain and I just don’t know how to help him. Then he will smile and be fine for a minute then go back to screaming again. I’ve been rubbing his tummy for him, whether it’s doing anything I’m not sure.
I’m gonna ring the specialist and try speak to her as the doctors have been awful and won’t help at all.
Little one is currently in his basket wriggling round and I can hear his stomach gurgling :(

My eldest never got on with Nutrimigen as it still contains cows milk protein (it’s just a lot more broken down). We were switched to Neocate, which is completely free from cows milk and noticed an improvement almost immediately.

I just hope she doesn’t say that I haven’t tried it for long enough as we only started it on Friday

I’ve called and fingers crossed the specialist will call me back. The reception wasn’t sure if she’s in today. I have to call back this afternoon if I haven’t heard anything. She’s just said though that I’ll probably be told to persevere with the milk as it takes time. I’m struggling getting him to drink and what he does drink he throws a lot of it back up.

We had to switch from breast to dairy free formula. As others have said, nutramigem still has milk protein and it didn’t work with my LB. we got another milk - can’t remember what’s it called at the moment (!!) but what I wanted to suggest was adding a little vanilla to the formula to make it taste a bit better (it is really disgusting!) and then gradually removing the the vanilla. This would maybe make him take more (not sure if you want to do that TIL you’re sure the milk isnmt upsetting him but he may be hungry and needing more). I’m no expert of course but this worked for us to get my LB on the new milk. Good luck - it’s hideous trying to go through trial and error to get it right but you will get there

I have no advice but I just wanted to say goodluck @smellybears - I remember you from another thread about reflux. Just persevere with the specialist if you don't see an improvement soon.

Thank you so much everyone and I’m sorry for moaning

As m33r suggested, try adding a drop of vanilla extract. That’s what I did with my eldest.

Don’t apologise for moaning! It’s hard, especially when they have reflux. My eldest had bad reflux and was on Neocate until he was 14 months and my youngest was diagnosed as failure to thrive and we’ve both been dairy free (I’m still breastfeeding) for 7 months. We’ve also been soya free since December.

You aren’t moaning

My DS was prescribed Nutramigen at 9 weeks of age and NOTHING would make him drink it despite trying for weeks. He wouldn’t even take a bottle never mind one containing that vile milk

I hope you’ve spoken to the Specislist and a new plan has been put in place.

The specialist called me today (on her day off which was very good of her) and he’s now back on ranitidine and carobel to add to his feed. Not getting on with the carobel too well though now!!

My DD stopped screaming during feeds almost immediately when she switched to Nutramigen - it was a battle to get her to take it at first because she didn't like it but she wasn't screaming in pain. If that doesn't settle soon go back and insist on Neocate or Nutramigen AA.

I thiught he had improved but his stomach is still gurgling then he’s doubled up in pain screaming.

Did she give you the option of another milk?

Not sure if this is allowed but I have several tins of unopened Neocate at home as it was prescribed for my youngest who is breastfed. I’m happy to send you some if you’ve had no joy with the specialist.

Mama thank you, I’ll see what happens with this phone call. The specialist is gonna call me tomorrow, I’m gonna ask if I can put him onto that milk as she said that’s the next thing to do anyway but we need to give the nutramigen time to work. I’m not happy with this milk though. She was meant to call me today but turns out she never got the message that I’d called! In the meantime I’ve stopped the carobel, not putting his poor little tummy through the poops again, he’s had enough of that!

They’ve prescribed him neocate! Fingers crossed he will finally settle on this milk

That’s great! Hope you notice a difference soon!

Well he’s certainly sleeping better after just one bottle! He’s never slept this long before, normally wakes up screaming in pain. He looks a lot more comfortable whilst he’s sleeping. I know it’s going to take time to properly notice a difference but I’m glad he’s getting himself a good sleep

That's good news already, poor mite.
I hope it continues!

Just wanted to send virtual hugs. My little man struggled like this for months. Soya formula turned out to the be the magic trick!

I hope your new milk works

Thank you so much! He’s sleeping so well, it may just be coincidence but he’s never slept this well before so I’m putting it down to this milk for now and praying that we’ve finally got a result!

Are things still going well?
I hope so!!

Thank you for asking 😊 he’s like a different baby already, eating well, no screaming whilst feeding and sleeping a lot more comfortably too. His reflux has got worse but I’ve been told to give that time and he’s on ranitidine for that. At the appointment yesterday she actually said that there’s no proof that ranitidine actually works!! Why prescribe it then?!