The video that started it all

[Anonymous]

Hi,

Newbie here. My name is Mary and my beautiful DD is Devon. She is 19 mos!

For sometime now, we suspected that maybe D was having seizures. We had a 24 hr. Veeg last sunday b/c I insisted, the neuro was not as concerned. Well, turns out, she wasn’t having seizures.

The epileptologist at NYU may be onto something when he mentioned reflux…

I was at work casually looking up reflux in infants and I came across a reflux syndrome that is often mistaken for seizures!!!

I see the list of symptoms and my jaw dropped. Frequent night wakings, sudden and inconsolable crying as if in pain. Arching while feeding. Arching when sleeping. Sour burps. OMG!

I called the ped. immediately after reading and while she does not know about Sandifer’s syndrome (I really didn’t expect her to) she did agree that it sounds like reflux. She wants to put D on Axid and watch for improvements. If no real improvements are shown then we will be referred to a GI. I think I am going to seek and make an appoint. with a GI anyway. In case the meds don’t cut it, then we would not have to wait to see the GI.

It gave me chills when I read how many kids were sent for eegs, then later on to be dx’d with Sandifer’s.

Here is a video of D in one of her episodes. This would happen maybe 3x a day. Her neuro saw it and did not think they were seizures. Now reflux is making a lot of sense.

Mary

newmothermary2007-11-20 16:38:20

[Anonymous]

My dd had very bad Sandifer’s. My understanding is that it’s a neurological response to the reflux pain. My daughter’s did look like seizures- she’d go stiff, arch, kick her legs out, and her eyes would roll. She had a normal EEG, so they diagnosed it as Sandifer’s. The video of your little one looks a lot like the silent reflux episodes that Hailey had. The Sandifer’s symptoms were a lot more pronounced. Either way, it definitely looks like your dd isn’t comfortable and the posturing and facial expressions look a lot like Hailey. I personally would ask for a PPI, rather than axid. Check out http://www.marci-kids.com for more information on PPIs, and also Sandifer’s. The ped GI is a good idea as well. Good luck.

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