Epilepsy????

Maybe not...

We went for a follow up with the epileptologist today and he thinks she may not have epilepsy but an intense form of reflux. We are going to start tapering off her seizure medicine and go see a reflux specialist. There's no confirmation either way yet but we are hopeful.

Here's what he thinks she might have

Sandifer's Syndrome is an uncommon symptom of infant reflux (but still often heard of) and can be very scary for parents to watch, it is often mistaken for a seizure.

When a child is experiencing Sandifer's Syndrome, he may arch his back, turn his neck and head to one side, flex his elbows, and hyper extend his hips. There will be abnormal moving of the head, neck, and upper trunk area of the body. The body will seem arched. Symptoms such as these after feedings are a good indication of Sandifer's Syndrome. Episodes can last one to three minutes. The infant may either become quiet or very fussy. Sandifer's is often mistaken for a seizure, because the appearance of Sandifer's is similar to that of a seizure.