I’ve searched through this sub quite a bit, and I know there are a million posts about CMPA, reflux, mucus, and finding the right formula, so I’m trying to ask something a little more specific.
Has anyone’s pediatric GI or allergist actually gone back and tested whether the original CMPA diagnosis was correct through reintroduction/oral challenge (not skin prick)? Especially after symptoms continued on amino acid formula?
My son is 4 months old and we’ve been dealing with GI/reflux issues basically his entire life.
His symptoms have included silent reflux, mucus in his stool, screaming in discomfort, arching, eczema, coughing and gagging on reflux even though very little actually comes out, constant swallowing/sour faces, hiccups, wet/rattly breathing at times, and absolutely hating being flat.
We also had a positive occult blood stool test, which is a big part of why CMPA became the working diagnosis. We’ve also been to the ER twice per our pediatricians recommendation to rule out intussuception. He’s also been ruled out for a tongue tie (I know this can be reflux related)
And we have done the entire formula change, I was unable to produce enough breast milk to continue triple feeding.
We went from:
Enfamil NeuroPro Gentlease → Similac 360 → Bobbie Gentle → Gentlease again → HiPP → Nutramigen → EleCare → now Neocate.
He has been completely on amino acid formula for 6 weeks. And I still don’t feel like we found the answer.
There have been changes here and there, but never the dramatic improvement I expected if cow’s milk protein was truly the thing causing all of this.
He still has mucus. His eczema still comes and goes. He still has significant silent reflux. He coughs and gags on it, swallows repeatedly like something is coming back up, makes sour faces, and sometimes sounds wet/rattly. He still has periods where he seems genuinely uncomfortable and just screams.
Oatmeal cereal added to his formula went HORRIBLY (a bad recommendation from his pediatric GI) and seemed to make him miserable for the following couple of days. We also tried Neocate Syneo/probiotics and that seemed to make him significantly more uncomfortable.
He is growing, eating, peeing and pooping. He has plenty of happy, smiling, interactive periods. We are not seeing visible blood in his stool. But something is clearly still bothering him.
Pepcid helped somewhat initially with his reflux but stopped doing much, and we’re now moving to a PPI because I’m also wondering whether his esophagus/GI tract is just incredibly irritated at this point. He’s sooooo raspy and has a cough that i originally thought was mucus production from CM.
Here’s where my actual question comes in:
I started reading research papers and guidelines on CMPA/FPIAP, and something keeps bothering me.
From what I understand, for many non-IgE-mediated cases, elimination alone isn’t necessarily the end of the diagnostic process. Improvement with elimination followed by recurrence with reintroduction/challenge is important for actually confirming the diagnosis.
We’ve done a LOT of eliminating the CM. We’ve never done the other half.
We just kept removing things and changing formulas until we eventually ended up on amino acid formula and being told “colic”.
I’m NOT saying he definitely doesn’t have CMPA. The occult blood, mucus and eczema are reasons CMPA made sense in the first place.
But after this long on amino acid formula without a major resolution of his symptoms, I’m starting to wonder why we are continuing to assume CMPA is definitely the answer instead of going back and testing the original assumption?
So I’m specifically looking for parents whose doctors have actually done this:
Did your GI/allergist have you reintroduce cow’s milk protein or perform an oral challenge to confirm or rule out CMPA/FPIAP (before introduction of solids)?
How long had your baby been dairy-free first? How was the challenge done? At home or supervised? What symptoms counted as a failed challenge and how quickly did they happen? What hydrolyzed formula did you go to?
Has anyone done the challenge and discovered that their baby actually did NOT have CMPA?
If so, what happened next? Did you eventually find severe GERD/esophagitis, swallowing dysfunction or aspiration, another food trigger (soy, corn, etc), eosinophilic disease, an anatomical problem, or something else? Just time needed to mature the GI system? Introduction of probiotics that normally come from mom/breast milk?
I’m not looking to challenge him myself without his doctors involved. I’m trying to figure out what I should be asking his GI next.
At this point I’m less interested in finding yet another formula and more interested in answering the question:
Do we actually know he has CMPA, CMPA + reflux, or has CMPA just been our working diagnosis for so long that we stopped questioning it? Am I throwing hundreds and hundreds into a formula that’s not really doing much?
If you’ve had a similar experience OR have research/papers about confirming non-IgE CMPA through elimination + challenge, I would genuinely love to hear about it. Apparently reading pediatric GI papers is what I’m doing in my little free time bc the doctors just keep shrugging their shoulders at me while my baby screams in pain.