Sandifer's Syndrome, Epilepsy or Baby Reflux: What is Causing My Baby's Spasms?

One of the most common misdiagnoses of epilepsy is Sandifer's Syndrome. Here, I explore what is Sandifer's Syndrome and reflux.

What is Sandifer's Syndrome?

Sandifer's Syndrome appears and presents like epilepsy or petit-mal in babies. Babies with Sandifer's have reflux, and the movements are not neurological, but all to do with the sensations experienced with their reflux. More accurately, it is a response to severe pain caused by the presence of stomach acid in the oesophagus.

Importantly, it is vital to note here that reflux is not normal. If it were normal, in any way, shape or form, then the body would not present in "scary to observe" dystonic head and neck movements in response to pain.

My experience with Sandifer's Syndrome

I say they are "scary to observe" because I personally witnessed Sandifer's Syndrome in my own daughter. It was horrible. It looked like she was having mini-seizures. Her eyes rolled back in their sockets. Her head jerked back over her shoulder a number of times. And then she was fine again.

The biggest problem with Sandifer's Syndrome is the lack of awareness and even knowledge of it in the medical community. This is not something that every doctor knows about. 

At our local Accident & Emergency (ER) Department, they didn't know anything about it. They told us to sit in the waiting room for hours, in the middle of the night, waiting for it to happen again. Because from all their observations, there was nothing wrong.

While waiting, this was when Dr Google helped us... again. My husband found Sandifer's Syndrome. It described our little girl completely. When we mentioned it to the doctors, their first response was a shrug 🤷‍♀️ saying they had never heard of it. 

And then we watched three of them huddle around a book, look up the index, search the internet... right in front of us... not exactly instilling confidence.

The paediatrician eventually came down. Read the pages pointed out to him, came over to us and agreed with Sandifer's Syndrome as a diagnosis.

Then sent us home. With no explanation, no support, no words of reassurance.

How is Sandifer's Syndrome treated?

The danger this presents is first that many infants who experience severe Sandifer's Syndrome are that they get diagnosed with epilepsy and treated with strong medications for this. Their reflux is ignored or medicated. And so they end up on multiple medications that they do not need.

The best course of action for Sandifer's Syndrome is to do as much as you can as quickly as you can to find and resolve the underlying cause of pain. Remove this, and you remove the need for pain responses. And also the need for medication for reflux.

And if, when the reflux is addressed (which can be a matter of days or a few weeks), then if there is true petit-mal or epilepsy, then this gets to be supported properly faster. It's a win-win.

I have a video below to show you what Sandifer's Syndrome can appear like.

Before you watch the video below, please be aware that this is a very severe occurrence; the episodes my daughter had made me question myself about if they had even happened. They were so quickly there and then gone.

So today, be aware of epilepsy, and be careful of misdiagnosis with Sandifer's Syndrome 💜

If you want to dive straight in to understand the underlying cause, you can do that in a recorded workshop I have done for you. In just one hour, you will know both what is causing your baby's reflux AND what to do to help them.

Helpless no more. Click here to jump the queue to my online workshop. Created to help you to identify the cause of your baby's reflux and to discover the action to take to help your baby. 

What should I do if I think my baby has reflux?

The best approach to resolving reflux is to understand the underlying cause. This can be done by reading all the symptoms your baby has, grouping them into patterns and using this pattern analysis to figure out the underlying cause. By doing this, you can take specific action to address the specific cause in your baby.

Use the box below to get your free Baby Reflux Symptoms Tracker so you can really start to see what is going on for your baby, regardless of diagnosis, reflux, silent reflux, colic or allergies.

Ready to be free of reflux? Start today with the 'Reflux Free Baby' Workshop. I talk you through understanding your baby's symptoms, what they mean, and how to use them as clues.

The course is suitable for both bottle-feeding and breastfed babies who are suffering from baby reflux.

Head to the links below for similar suggested blog titles:

• Infant Reflux and Colic: What is Aerophagia?
• When Will My Baby's Reflux Pain Stop?
• What Causes Reflux and Silent Reflux in Babies?