CMPA help please

[JLB234]

Hi all,
Desperate Mam here! My 6 week old was diagnosed with a CMPA after a significant rash, eczema style break out, projectile vomiting and mucus in stools. We tried Pepti 1 first which outright rejected. Then moved on to Nutramigen which was tolerated better but he would often arch his back and scream in pain. The doctor prescribed carobel to try to help with this, which made feeds more comfortable for a short amount of time but we seem to be back to square one now.
He also has horrendous congestion which means he barely sleeps as he chokes and snorts and sounds like he can’t breathe. It also means he isn’t taking full feeds, we’re lucky if we can get 3oz down at a time. I’m going to go back to the GP but wondered if anyone had any advice or ideas? Does it sound like he might need an amino acid formula? Should I ask about omeprozole and go down the silent reflux road? I know you’re not medical experts but I would appreciate any information from experience. I’m really struggling at the moment.
Thanks so much

100 percent - similar experiences but with facial swelling too. Neocate syneo, Magic Mix Thickener & Omeprozole are the only things to have helped.

good luck and solidarity, it gets easier!!

We were advised to keep baby upright for 30 mins after each feed wherever possible and this did help too.

What sort of position are you feeding him in op? What bottles are you using? I found MAM a better fit for him, but I tried anti colic bottles too

My baby was similar. Heartbreaking. I was combi feeding and he was reacting to my milk too 💔 we went thru all the alternative formulas

I fed him in a kind of upright position iyswim, even from tiny, rather than semi reclined. We took lots of breaks so he could keep it down so I spent like my whole life feeding him. (And he'd scream in agony).

Try neocate. You might have to insist be a pain in the arse to get it prescribed depending on the GP but it's worth persisting!

@FireplaceJane we keep him upright for 30 minutes but unfortunately, it doesn’t seem to be making much difference.

@Thiswasanescapeplan I’m using Mam bottles too, my little girl loved them but he’s not taking to them at all. We semi recline him too. I’m wondering if there’s something else in my milk too. Thank you. I’m going to try to get an appointment tomorrow to push for neocate as there’s definitely something else going on. Thanks for all of your advice.

I really sympathise, I spent so long holding a permanently screaming baby. We were in A&E a few times with other allergies too.

I spent so long covered in sick and so did he! I washed about 8 sleepsuits a day and we went through every muslin we had

Hes a very happy toddler now. The paeds recommended early weaning at 4mo but I couldn't, his head control was just not steady enough

In a very CMPA baby they can react to soy protein just like milk protein because apparently they are very similar 🤷 idk but I removed soy from my diet along with milk obvs and got him finally on neocate and gaviscon and things got better after that

If you’re also breastfeeding and hes sensitive then it does need you to be totally dairy free. No pesto, no margarine with a bit of milk in it, no nothing.

Theres an overlap with soya, so watch for substituting that in.

Reflux is a common combination. Try the seat bit of the pram or slings / wraps and more time upright.

Omeprazole was amazing for my cmpa baby, he went on at 4 weeks after I took him to a&e as was so worried about his misery and pained screeching.

@Thiswasanescapeplan thank you got being so kind. My mental health is really taking a hit with it all if I’m being honest. Unfortunately, we’ve had two episodes of vomiting (one projectile, through the nose) and a very unhappy boy today so I’m going to ask the GP to try amino acid formula tomorrow.
@ScaryM0nster I’ve been being very careful with checking every package for milk but thank you for the advice!

Yeah it totally tanked my MH watching my LO scream, and I had to hold him 24/7. The worry was next level. Got a bit of baby envy too when I saw non-screamy non allergy babies at groups

I popped him on me in a loose wrap type-sling rather than a more structured carrier- the one I had just pressed his tummy and made him sick again. I had a busy toddler at the time too and had to get everything done with a very sad scratchy baby who needed to be held upright (allergy rashes!)

And the car. Omg. Never has a baby screamed so much, every single time.

Irrc a CMPA FB group saved my sanity...I was so sleep deprived from the screaming I don't actually remember much but I think it was helpful 🫠

Just to reassure you slightly, my baby only had an ounce or two at a time until about 10 weeks without it affecting her growth. Some babies do eat more slowly.

@Thiswasanescapeplan yeah, it’s tough isn’t it. I have a little girl who is just under 2 as well. I keep on looking back at photos and feeling guilty because she was such a happy baby and he is so miserable. GP prescribed neocate with no fuss at all. He seemed to be genuinely concerned about him and want to help which was lovely. Not had a good day yesterday but know it’ll take some time.

@raisinglittlepeople12 thanks so much, that’s actually really reassuring. He’s taken the neocate but again, absolute max of 2oz at a time, usually more like 1.5 so I feel better knowing your LO didn’t lose weight.