When my daughter started arching her back, twisting her neck, and rolling her eyes, I was terrified.

We rushed to A&E, convinced something serious was happening, maybe seizures, maybe neurological. What we didn’t expect was to be met with blank stares and shoulder shrugs.

The doctors didn’t know. The paediatricians didn’t know. In the end, it was Google that helped us find the answer.

Sandifer’s Syndrome.

And once we mentioned it to the medical team, they looked it up too. That’s when they said, “Yes, that’s probably what it is.”

So what is Sandifer’s Syndrome?

Sandifer’s Syndrome is a condition often associated with infant reflux. It’s marked by dystonic movements: strange, often alarming posturing of the baby’s head, neck, and back.

This can look like:

• Sudden, sharp arching of the back
• Twisting or jerking of the neck
• Eyes rolling or flickering
• Movements that may mimic seizures
• Grimacing or painful facial expressions

These symptoms are often described clinically as “non-epileptic,” but that doesn’t make them any less frightening.

“Is it a seizure?” The question no-one answers

One of the most common, and terrifying assumptions parents make when they witness Sandifer’s Syndrome is that their baby is having a seizure.

I understand this deeply. When my daughter first displayed these arching movements, eye rolling, and body twisting, I thought she was experiencing petit mal seizures. We rushed her to the hospital, frightened and desperate for answers.

Sadly, the medical team didn’t have them. They weren’t familiar with Sandifer’s Syndrome. In fact, it was my husband who brought the diagnosis to them after hours of searching online while we sat in A&E at 10pm on a Friday night. Only then did they acknowledge it was “probably that.”

Sandifer’s can look like a seizure, but it’s not one.

This distinction matters. Because without it, babies are sometimes misdiagnosed with epilepsy too early—and prescribed medications they don’t need. Medications that alter brain chemistry, carry risks, and do nothing to address the actual cause: pain.

If your baby is showing these symptoms, you are right to seek help. Please know, if your baby also has reflux, it's most likely not neurological. It might be their pain response to reflux. And the safer, more effective path forward is resolving the reflux pain. If these behaviours subside in response to addressing their reflux, then this is the confirmation that it is Sandifer's Syndrome.

What most people don’t understand:

Sandifer’s Syndrome is not a random presentation. It’s not “just something some reflux babies do.”

It’s a pain response.

These movements are your baby’s way of reacting to intense discomfort they can’t verbalise. It’s their nervous system responding to internal stress—often caused by severe reflux or inflammation in the gut.

Why common treatments miss the mark

If you Google Sandifer’s, or speak to most healthcare professionals, the standard treatment suggestions are:

• Thickening feeds with rice cereal to reduce regurgitation
• Prescribing medications such as proton pump inhibitors (PPIs) or H2 blockers

Here’s why I don’t recommend either as a first-line solution:

Thickening milk doesn’t solve reflux.

It just makes regurgitation more difficult. The stomach content is still coming up—it just gets stuck. This can lead to increased gas, constipation, and more discomfort.

Acid-reducing medications don’t treat the root cause.

They suppress symptoms by changing stomach chemistry. But they don’t address why reflux is happening in the first place. And they come with side effects, especially when used long-term in infants.

There’s another way.

I didn't know enough about reflux when we saw this in my daughter... in fact we had only had a reflux diagnosis a few days previously (at almost 6 months). But I have seen it with clients in the 12 years since then, and when we begin looking at the root cause of any baby's reflux, everything changes. WE make the necessary adjustments in response to what their body is telling us with its behaviours and symptoms, and support them accordingly.

Within days of making targeted changes, Sandifer’s symptoms ease. Sleep improves. The arching stops. Baby's body could finally rest.

If you’re seeing these symptoms in your baby:

First, breathe. I know how scary it is. I know how helpless it feels. But you are not alone, and there is hope.

Second, don’t settle for a symptom-based diagnosis. Sandifer’s Syndrome is a sign that your baby is in pain. Your job is not just to name it, but to understand it. To ask why. To get curious. And to support their body to heal.

If you’d like help doing that, this is where we do just that.

You deserve more than reassurance. You deserve results.

💛 Áine
Founder of the Reflux-Free Framework