I posted our son’s video on youtube to see if anyone else with Sandifer’s Syndrome has similar episodes:
http://www.youtube.com/watch?v=AKf9XD8ZrD8
Neeko was diagnosed with Sandifer’s Syndrome in the NICU, but at the time his episodes looked like the exact description…turning his head to one side, arching his back, extending and stiffening his arms out. He was treated with Reglan and Zantac, but hated the latter so we switched to Reglan and Prevacid with his GI specialist.
He didn’t have anymore episodes the whole month of December, but they re-appeared in mid-January and looked a little different. The video I posted shows his eyes rolling back and you can hear difficulty breathing. From the angle of the camera, it is harder to see that his arms, legs, and lips twitch.
He recently had an endoscopy that showed a hiatal hernia. The GI specialist is monitoring him and his meds for now, but he might recommend surgery. The GI specialist is not 100% certain this is still Sandifer’s Syndrome, and thought his new seizures might have been a side effect of Reglan so we are currently giving Neeko prevacid and Bethanechol. We are considering a 2nd opinion from Neurology, but I’m not sure if I want to put our son through more testing if this is all due to acid reflux.
When he’s not having an episode he’s generally a happy baby, but how long should I let these episodes continue and hope that he outgrows them soon? Do the episodes have adverse long term effects?
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