Reflux is a Symptom, Not a Cause.

Where my mind went trying to figure out what was wrong with Millie.

Disclaimer: I am not a medical professional and this blog post is not intended to provide medical advice. I'm simply sharing my personal experience in the hope that it might support or resonate with others going through something similar.

When we welcomed our second pēpē, Millie, I thought I knew what to expect, how to parent and be a māmā. I’d been here before, and in a tough situation with Ruby—surely nothing’s going to challenge me more than open-heart surgery on one of my darlings?

From 2 weeks in, things were tough—relentless silent reflux, feeding struggles, constant discomfort, and so much crying/screaming. We bounced between GPs, private paediatricians, two different lactation consultants, and an osteo, but nothing brought relief. No one had answers.

Everyone was just telling me, “You might just have a hard baby,” or “Babies sometimes just cry.”

I knew something was wrong. I kept pushing to try different things and for answers.

After so many sleepless days and nights, bouncing and rocking Millie constantly, hitting dead ends—we tried Gaviscon, probiotics, omeprazole (two ways), Colic Calm, Rhuger, Infacol, various herbal remedies, breastfeeding, cow’s milk, goat’s milk, different bottles and teats, and a prescription formula that Millie wouldn’t touch.

I won't go into all the mishaps or suggestions made by some professionals, but there were more than there should have been. Some refused to believe Millie was in pain. One Dr, a māmā herself, told me I was just distressed and sleep-deprived. Someone told me to walk her for 5 minutes... I was already bouncing and rocking her for 8 hours a day. Another prescribed the wrong formula (luckily, I noticed before giving it to her). 

Then a friend in Australia messaged me about a place called The Gentle Village.

Everything changed after a virtual consult with Brenda, an Orofacial Myofunctional Therapist in Australia. She listened to Millie’s cry and immediately suspected allergies. She also identified a posterior tongue tie—something that had been missed by everyone else. I cried after talking to Brenda—it was the first time I truly felt heard and validated. Brenda shed a tear with me too. I'll never forget her kindness and incredible wisdom. 

We went through a lovely, empathetic nurse to help us get the ties sorted who was local—she supported us every step of the way. After getting that and her lip tie released, Millie’s feeding technique improved instantly.

But she was still unsettled. We started on Neocate and it had been 4 weeks. I thought I had seen some improvement, but she was still not fixed. 

I requested a referral for an allergy specialist. At our second appointment, after really advocating for it, Millie was tested for 13 allergens through a skin prick test. Everything came back negative. But I knew something wasn’t right. I really felt like she was having a reaction to something. The way she was squirming during and after feeds—you could tell her puku was the problem. But after the negative skin tests, we were told to go back onto cow's milk. Thankfully, I had a strong gut feeling this was the cause. I only trialled the cow’s milk formula for about 1–1.5 days, and as soon as she started getting more unsettled again, I went straight back to Neocate. 

Fortunately, the allergy/immunologist specialist requested stool samples from Millie to check her gut. After a few of those, we could tell inflammation was coming from her intake of cow’s milk. As soon as cow’s milk was reintroduced, her gut inflammation spiked significantly.

It turned out to be a non-IgE-mediated cow’s milk protein allergy (CMPA)—the kind that doesn't show up in skin allergy testing.

This is why it also took a little longer to even be considered seriously by GPs or for anyone to think it was an allergy, as allergies like this usually have other symptoms like eczema, mucus, and/or blood in the stool.

We pulled dairy again and went back to Neocate. That’s when things started to shift.

Millie had to be fully off dairy for 6 weeks to see a huge improvement, as that’s how long it takes to get all the dairy out of your system. But as soon as it was gone, we had a different pēpē.

She’s not a miracle sleeper (lol), but she’s back in her cot after months of only being able to co-sleep. And more importantly, she’s not screaming anymore. She’s calm. She’s harikoa (happy). She’s still a bit on edge, nervous-system wise, but I don’t blame her—so am I.

And honestly, it feels like a miracle having her smile.

This journey tested everything—our patience, our instincts, our energy. My physical endurance—rocking and swaying then bouncing on a swiss ball for 8 hours a day & sleep deprived—was hell.

But we made it through.

And if you’re in the thick of it too, I hope this story helps you feel a little less alone.

💛 Arohanui, parents. Kia manawanui.

Notes:

• Non-IgE-mediated cow’s milk protein allergy (CMPA) is a delayed-type allergy that typically presents with gastrointestinal symptoms and is not detectable via skin prick or blood tests. Diagnosis is usually made through elimination and reintroduction of the suspected allergen.

  • Source: Royal Children’s Hospital Melbourne – Clinical Guidelines

• Persistent crying and unsettled behaviour can indicate an underlying cause. The Royal Children’s Hospital Melbourne notes that while crying is common in babies, red flags like reflux, CMPA, and gut discomfort should be carefully assessed—not dismissed. The guideline also highlights how important it is to support parents, avoid over-medicalising normal behaviour but also not ignore symptoms when something more is going on.

  • Source: RCH Guidelines – Crying Baby / Infant Distress

Additional Resources & Support:

• Non-IgE-mediated cow’s milk protein allergy (CMPA) is a delayed-type allergy that typically presents with gastrointestinal symptoms and is not detectable via skin prick or blood tests. Diagnosis is usually made through elimination and reintroduction of the suspected allergen.

  • Source: Royal Children’s Hospital Melbourne – Clinical Guidelines

• The Gentle Village – Oral ties and feeding support. Brenda was instrumental in helping identify Millie’s allergies and oral restrictions.

• Allergy UK – Cow’s Milk Allergy – Explains IgE vs non-IgE allergy types, common symptoms, and the elimination process.

• Kōwhai Chiropractic (Wellington) – Gentle family chiropractic care. Supportive for babies with reflux, tension, and oral ties.

• The Baby Nurse NZ – Paediatrics, maternity, and feeding support. Provides tailored virtual and in-home consultations.

• @thegentlevillageperth – Instagram support around oral ties, feeding, and calming the nervous system.

• @babyrefluxguide – Digestible advice on reflux and allergies.

• CMPA / Reflux / Allergy Facebook and online support groups – Helpful for shared experiences, practical advice, and validation you’re not alone.