Reflux, CMPA? Both? Heartbreaking

[Daphne225]

My little boy is 9 weeks. He’s had mucus in his poo since birth pretty much. I breast fed for 5 days but had an extended hospital stay and it was too much to keep pumping / feeding whilst having multiple tests etc.. he went onto kendamill - the mucus continued, but he was happy / feeding and putting on really good weight. We went to the GP several times, and after an episode of potential blood at 4 weeks old went to children’s A and E. It was a one off and didn’t see it again. Again he was still content and feeding really well. Then two weeks ago he started screaming on his feeds and we saw a bit of black mucus. We then started thinking CMPA, so back to a and e we went and expressed our concerns. They gave us Neocate to try, the poos are very slightly better but still full of mucus and he’s drinking half the amount and the screaming is even worse. It’s devastating because he’s starving hungry. He’s nuzzling his hands, my chest etc.. and crying as soon as he’s taken a few sips of the bottle. It’s an absolute nightmare and both me and my partner are in tears over it most days. It’s so sad to see.

We went to the hospital again today as we weren’t sure if we saw black mucus again but it is hard to tell when Neocate poo is dark green anyway. The doctor had a look and said she thought it was just a very very dark green. We were worried about something more sinister like intasussception (can’t spell that) but she felt his stomach and said if he’d had that for 7/8 weeks he’d be very unwell and we’d be seeing more blood. She gave us some stuff to thicken his Neocate in case of reflux (that doesn’t explain the mucus however) but we’ve given him a feed tonight and it’s been horrendous. In his 9 weeks of life we’ve been to the GP about this about 5 times and to the hospital 3 times! We’ve also mentioned to health visitor.

Any other advice anyone has? We are at a loss and losing our minds. What can we even do next? Tempted to pay private but we haven’t got a lot of money, so if that’s no help either, it would be such a waste.

Big hug to you, OP. It’s heartbreaking. My 6-weeker (5 week premie) has horrendous silent reflux. Her big brother had it too but not nearly as bad; his was managed with baby gaviscon and later, anti-reflux formula. Combi/feeding now so dr recommended anti-reflux formula which barely took the edge of it. Baby was still doing rigid back, exorcist neck and making awful, hoarse cries so went back to dr. He prescribed losec (omeprazole) yesterday. Don’t want to jinx us but it seems to be helping. We are still using anti-reflux formula, feeding upright and holding upright after feeds for 30 minutes. Dr also suggested giving smaller more frequent feeds, which we’ve implemented too. Best of luck. Really hope your LO gets sorted xxx

PS congratulations, Mama!

Hi, sending hugs, I’ve been there with a baby in a lot of pain and distress, but we couldn’t work out why. It took us until 4 months to work out our daughter had CMPA. We naively thought the crying, swollen belly, explosive, loose poos were normal for babies... My daughter is breastfed so I had to cut dairy from my diet, so I can’t help with exact formula options, but I do know from CMPA groups I’ve joined on Facebook that there are many dairy free options, and that not every dairy free formula will work for every baby as they may have other allergens like soya or coconut. I’d suggest joining some of those groups and seeing if anyone there can help give more advice about if it sounds like CMPA or reflux. But just to add, there doesn’t need to be blood in the stool for it to be CMPA. It can still be CMPA with mucous and the many other symptoms (worth also looking up the dairy free mum on insta). Hope that helps!

The prescription formula is very thin- have you tried carobel? It was a life saver for us! The GP can prescribe it or you can buy it from the pharmacy.

Both of my boys have CMPA, reflux & other allergies and its pretty rough at the beginning.

You will find your feet with it all (even though right now it won't seem like it!)

Like a PP said, not all DF formulas suit all babies. I would go back to the GP and ask them to prescribe a different one and refer your DS to a Paediatric Dietitian.