Is this CMPA? Really struggling

[LLMS2022]

This is my first post on MN and I'd really appreciate some advice please, me and my DH are finding this so hard.
DD is 8 weeks old, was EBF but introduced formula top ups when she seemed to be frustrated after feeds and I thought maybe I wasn't producing enough (around 5 weeks or so).
Cant remember exactly when it started but feeding has been steadily becoming worse, varies throughout the day but she will feed for a few seconds or minutes and then start crying, throws her legs out and arches her back, and then will not calm down for some time. Has colic- like episodes of varying lengths in the evenings. She's been on gaviscon/ omeprazole/reflux formula for what I thought was silent reflux but has not really helped. She was admitted to hospital last week because her intake was so severely reduced, started her on carobel and have decided to just formula feed which seemed to work for a day or so (I think this may have been because she was so tired from bring poked and prodded at all hours) but now we are back to how she was. Intermittently refusing feeds, crying/ arching back/ inconsolable for long periods in the evening. When shes sleepy she feeds ok, but sometimes she just seems completely disinterested in feeding, it is a battle everyday and I'm finding it exhausting mentally, I am so worried about her. The next step is trying formula for CMPA but she doesn't have all of the symptoms?
She just seems to be so upset and I'm fed up of people telling me its normal! it's making me so sad. Any advice appreciated- sorry for the essay

Oh hun. I cant really advise as have no personal experience but hopefully this at least bumps this for you. I know how upsetting it is when feeding becomes so difficult. My boy has tongue tie and we think silent reflux so feeding is always a bit stressful. The tongue tie makes him take in so much air so he is uncomfortable literally 10 minutes every time after feeding.

My friends baby who had CMPA only had wheezing and a rash so they don't always have all the symptoms.

It takes a while for dairy to leave the body so maybe it couldn't hurt to try a dairy free formula? Or laco free or sensitive formula? Your little one could have a sensitive belly. I say that but constantly changing formula unecessary probably won't help.

I hope someone sees this who has experience and can give some input. What have the doctors said so far?

Hi lovely, mother to a 5 month old with confirmed cmpa here.
how are your baby’s nappies? With our little boy that was one of the biggest signs. He never had blood but they were always very explosive. Very wet sounding, often watery and contained mucus (but not always). Wind was also a big one for us. He was in constant pain from trapped wind no matter how much we burped him and he was very very difficult to burp too.
He would squeal in pain from trapped burps but would never then let you burp him and if he did they wouldn’t come up for ages until you stood up, popped him on your shoulder and they would forcefully come up with most of the feed.
He also had a rash that initially we were told was baby acne but it was AWFUL and would flair up after feeding. His skin was also dry, flaky and he had bad cradle cap.
All of the skin issues cleared up in roughly 48 hours after starting Nutramigen hypoallergenic formula and literally from the first bottle he let us bend him forward and burps just popped out.
The wind and nappies improved but then a few weeks later symptoms started returning and we are now on a completely milk free, amino acid formula and the difference is amazing.
Unfortunately because these formulas are so expensive GPs are reluctant to prescribe them. We were seen by 3-4 different doctors before finally one said looks like cmpa let’s try Nutramigen when he was 2 months old.
So you could just keep pushing and pushing until one is willing to let you try some. You could also try finding a pharmacy that would sell some to you but a tin lasts 3-4 days at best and sometimes it can take weeks to see any real change so could be expensive to pay for it yourself but if you have that option and see improvement it would help your case at the GPs.
It’s absolutely awful when your baby is in pain from feeding. You have all my sympathy. It’s something I never imagined being so problematic and even now causes me a great deal of anxiety. One of my friends has a baby with cmpa and like me we would get our partners to feed our babies instead because every feed was distressing for both us and the baby and our partners were able to emotionally handle it better. I really hope you can get some help whatever the issue turns out to be and please feel free to message if you have any questions regarding the formulas, thickeners (our baby reacted to carobel too btw) and reflux meds (again our baby has done some long stints on gaviscon and omeprazole both of which have negatives and contribute to tummy discomfort).

Thank you so much for your replies @Nat888 @Pizzaandsushi
I rang the hospital again last night and they have prescribed a formula for CMPA, so will see how this works. Nappies are occasionally explosive, since she's been on carobel they have been like playdough though! She also has these small raised dots that appear on her face intermittently, I wonder if this is linked. She is also difficult to burp, but does plenty of farts! It's so awful when they are distressed isn't it :(

Yes carobel, like gaviscon, can cause constipation as well unfortunately which it sounds like she may have a little bit if her poo is play dough consistency.
That’s fantastic news about the formula!! Fingers crossed and I hope you start to see an improvement.