Diagnosed CMPA and new symtoms after changing to Pepti 1

[Changingnames2002]

Hi,
I am posting here out of sheer desperation.

My 8 week old baby was finally diagnosed yesterday with CMPA after all typical signs, including a worsening rash across face, neck, chest and legs and what prompted us to call 111, then sent to A&E was swelling to the eyes.

The doctor recommended we switch immediately to Aptimil Pepti 1 formula. Baby is now on bottle number 3 since we got home and has developed awful reflux. Baby was vomiting constantly feeding, in between feeds and frequently until the next bottle was given but now baby is projectile vomiting milk & clear liquid straight after the feed for what seems like the atleast half of the bottle. (5oz full feeds currently)

I am typing this as started the feed at 2:20am, winded, changed wet nappy, 3rd full outfit change and sitting upright for 30 minutes after the feed. It is now 4am and baby has just settled after being uncomfortable.

I am upset thinking that these lovely newborn moments have been taken away from us as I am getting so anxious with every feed, every nap etc and dread what the day/night will bring. Baby rarely naps as so uncomfortable and if they do; they wake after 15 minutes clearly in discomfort. I am constantly thinking surely this just gets better as my normal life with other children hasn’t resumed, I am like a zombie every morning after no sleep and then every day being completely taken up by feeds/outfit changes/crying out of pain.

Has anyone any advice? Do I persevere with the Pepti 1 milk, do I add thickener, do I push to change to Neocate or similar? I have a GP appointment later this afternoon, but also happy to head back to A&E if that is more appropriate.

thank you so much for reading 🙏🏼

The formulas are thinner so can cause reflux so a thickener can help. That formula is also dairy based so it could be still a reaction.
The symptoms you described that triggered the trip to a and e I would be speaking to the GP about an amino acid formula such as neonate or alfamino as they are both completely dairy and soya free

Thank you @Superscientist
Looking forward to seeing what the GP recommends - it’s relentless.

would you recommend trying with a thickener first before changing to neonate or similar?

With the eye swelling I'd go for an amino acid formula although these are even thinner so I'd go with both and thickener the formula too, you can get gaviscon on prescription although it can cause constipation. My daughter needed lactulose to help with this. We tried carobel but she's allergic to carob

You need a fully dairy free formula. I was lucky that mine wasn't allergic to soya like 50% of Cmpa babies. Ask GP for a prescription dairy free one

@Superscientist @Devilsmommy

thank you both!

48 hours ago we were prescribed Althéra formula and have been adding infacol to babies bottles. The screaming has stopped today and he has seemed like a completely different baby with lots of smiling and giggles.

we have had 6+ loose bowel green/yellow and a lot of sick but it’s been so good not to have the screaming and constant pain.

i have a telephone chat with a gp tomorrow - so will mention the two symptoms we are left with and see what they say.

i think as long as baby continues to gain weight they will tell us to continue with this? I can’t see us being moved over to the amino acids milk as he must be able to tolerate the new milk a little better??

thank you again