Sandifer's or something else?

[Anonymous]

My name is Tina and my son Cameron is 11.5 months old. He started having intermittent Torticollis at a few weeks old and was diagnosed with Benign Paroxysmal Torticollis (close relation to Sandifers) in May 2009 after visiting with a neurologist.

Cameron has been dx’d with Colic (as a newborn) and had acid reflux issues. Actually, silent reflux. It seemed to go away as his other issues came out.

Now, at 11.5 months old he’s showing acid reflux signs again, after months, he has intermittent head tilt also. He started with Myclonic seizures in February 2009 and our neurologist didn’t think they were related to BPT and has ordered an EEG.

I searched Sandifers today and came across a video of a little girl that looked just like Cameron when he’s having the “seizures”.

Do any of your children have intermittent head tilt with Sandifer’s? What reflux medication are they on?

Thank you so much for any information. This journey has been frustrating and no one in the medical field can truly help me find out what’s wrong with Cameron.

Camsmommy19782009-07-28 16:49:34

[Anonymous]

Hi there. My younger daughter had Sandifer’s, my oldest has epilepsy, so I know a bit about seizures and Sandifer’s. I’d try to videotape the episodes and show the neuro. Also, how frequent are they? If they are several times a day, they may be able to catch them on the EEG. The thing with EEG, is that a positive one means seizures, but a negative one doesn’t mean that seizures aren’t happening. For some children where they can’t catch an episode on the sleep deprived EEG, they do an ambulatory EEG, which can tell you additional info. I would directly show the video to your neurologist, and also a video of your son having an episode, and ask him why he thinks seizure vs. Sandifer’s. Our pedi was concerned that Hailey’s Sandifer’s could be myoclonic seizures, her EEG was fine. I felt strongly that it was Sandifer’s due to the fact that it appeared during or immediately after feeding only, it was her arching and pushing away from the feed. Good luck and keep pushing for answers. I’m a big believer in multiple opinions by the way- I’d find the best pediatric GIs and best pedi neuros you can and see what they thing. Hang in there.

[Anonymous]

Hi all! I am new to this forum…I have a daughter who is believed to have sandifer’s syndrome. Her symptoms come and go and we have a you tube page set up for her doctors. She has recently started having symptoms again. This is a link to a video from her episode last night. This is a very mild episode with no eye rolling. Please let me know if your child is doing this too. Thanks!

http://www.youtube.com/watch?v=bWsr2D6pSX4

[Anonymous]

That looks like him. But only when he’s having a high fever. Never with food. Although he seems to have reflux, he doesn’t do those unless he’s symptomatic with a fever, usually.

Our Neuro saw him Monday in Boston for his follow-up and we already met with our primary in regards to reflux meds. His EEG was normal that was performed on Monday. He looks EXACTLY like your little one, but not with food when he’s having episodes.

[Anonymous]

PS- the neurologist believes it is Sandifers…Had 1 eeg done with no episodes at the time of the eeg. It came back normal. She had been doing forward “thrusts” for a while which we also called episodes. She also did head knodding and “shivers” We were able to figure out that she does most of these things as a direct result of reflux (due to taste or pain)…Please let me know if anyone elses Sandifer’s child has other problems like my daughter…She is mildly delayed, mild hypotonia, and slightly favors one side…falling on the left side when crawling often. Thanks!

[Anonymous]

Sarah Jane- my son has VERY mild left sided weakness (but it’s there)…meaning he leans to the left when eating, left arm turns in when crawling etc. he is also mildly hyptonic. We have an OT working with him. My son’s episodes look like your precious baby’s episodes. I just posted them to get some thoughts. We just reduced his PPI and this is what we get. I think we’re going to have to go back up.

http://smg.photobucket.com/albums/v650/kmay/?action=view&current=sebastianfeeding.flv

You can take a look and let me know what you think. We do not have a dx of sandifers. We have a dx of reflux since 2weeks old and MSPI so he’son Neocate. I’d love anyone’s thoughts.

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