Hi everyone,

I'm so glad that I found this forum.  My daughter, Emerson, is 19 mos. and I think that she has Sandifer Syndrome.

 

Here's our story:

She was born with acid reflux (severe projectile vomiting, but she never acted uncomfortable), but not diagnosed until 4 mos. after two upper GIs.  We saw a GI specialist at the Cleveland Clinic and she prescribed Previcid.  She was on that until 7 mos. when the she started sitting up and then we stopped vomiting.  She has been normal developmental other than not rolling over until 10 mos., crawling until 11 mos. and then walking at 16 mos. (which she was in physical and occupational therapy for).  For the most part, she is an amazingly happy toddler (and a joy to be around! )

 

About the time that we stopped the drug, she began what we fondly call "clenching."  Here's what she does:

- stiff and rigid arms and legs

- turns right foot inward

- turns head/neck to left

- if she's holding something, then she grips it until her knuckles are white

- heavy breathing

- glazed look

- rhythmic movement of her body up and down

- sometimes grabs the cuff of her right sleeve

The episodes can last from a few seconds to a few minutes.  You can make her stop them - although it's not easy.  She typically does them 1st thing in the morning, after eating, or when she's tired.  They always occur when she's seated (car seat, high chair, on the floor, shopping cart, stroller). 

 

We took a video of the clenching to her pedi. who referred us to a pedi. neurologist.  He ordered an EEG at 9 mos. that came back normal.  The neuro. thought it was benign childhood movements she used to self-soothe.  She still continued to do it, but it didn't seem like it was as often.

 

Fast forward to 12 mos. and she's clenching a TON more.  Our pedi. left to have a baby and so we brought a new video to the new pedi. who ordered her back to the neurologist.  His was surprised to see her again since he thought she'd outgrow them by now.  He ordered a 2-day pediatric seizure observation with 24-hour video monitoring.  Then in a strange chain of events, her pedi. read about Sandifer Syndrome and thought she might have it.

 

I came home and did tons of research online (used to do online research for a living, in fact).  I found an article that could have been written about her.  I called the pedi. back and she put her back on 15 mg. of Prevacid.  I got her another appt. with the GI doctor and we went again on Mon.  She seemed baffled .  She actually saw her clench, which was great since there hasn't been a single dr. who has seen her do it in person.  She didn't think it was Sandifer because she said it typically is in younger kids (although she's been doing it since she was young) and in those with neurological problems (which I read is not always true).  She ordered Prevacid for 30 days and then back in for a pH probe if nothing has changed by May.

 

So, any questions or advice for my poor baby girl???  I'm so worried that there is something really wrong and we're all missing it and she's suffering or will have long-term effects from it.  I would love to hear your opinions.  I have always trusted other moms on other boards I've been a part of.  I think mothers always know best when it comes to their child.