Does anyone have an infant with Sandifer syndrome? I have read some, but can't find any real good info. Help!!

Hi! I moved your post to create a new thread so that everyone will see it.

I don't know much about Sandifer Syndrome, however, if you go to the "Other Conditions" or "External Links" sections (listed under the Main Menu to your left), you'll find links to medical sites that should have some information.

Also, other members here might know a lot more than I do about this.

Has your baby been diagnosed with this? :smt009

I do not have direct experience but found a thread that dealt with it prior. Our ped thought Iain may have had it, but I do not think he does.



http://www.infantrefluxdisease.com/forums/showthread.php?t=5349&highlight=sandifers+syndrome

You can also go up to "search" and type in Sandifers to see the other threads and references to it.

I am sure now that Mary has brought this post into its own thread you will get some replies from those experienced with it. If I remember correctly, our mod Amanda had some dealings with it and our member Rosietish is very well versed with it.

Our GI said that Emma has Sandifer's Syndrome-like tendencies, (severe arching of body when feeding/sleeping, torticullis - severe tilting of the head/neck, and Emma had "seizure-like" responses during reflux episodes).

He did not diagnose Emma with Sandifer's because he does not feel she really has it. She displays symptoms characteristic of it, though. He felt she was undermedicated and her body was reacting to the pain and acid from GERD.

After being put on Zantac and taking the entire Prevacid Solutab in the morning (vs taking half in the am and half in the pm), her arching during sleeping at night has almost completely gone away, and she does not arch AT ALL during feeds. Her neck arching went away in early September, after being put on Prevacid initally, and her "seizure-like" episodes stopped at the same time, too.

In short, being on the right combo of meds helped Emma. I would talk to your child's GI about it.

Sounds like Iain, Amanda. His problems went away with the meds, too and then cropped up again but not as bad as his intake increased. Seems like our GERdlings go through this unless medicated. They were going to check for seizure activity prior to his response to meds and then decided not to when he did so well with them.

Wish I could get a hold of rosietish....

Eric sounds a lot like leigh and amanda's little ones. As far as getting better with meds. It stopped looking so seizure like (almost involuntary even though you could tell he was in control of it) when we started treating his reflux, and I assume that all the arching he did on and off after we were treating him was just arching, because it just wasn't the same.
Doc's didn't know what I was talking about when I mentioned sandifer's (Big SHOCK! eye roll) and never made a big deal out of it, but I remember it was one of the symptoms that kinda clued me in to what was happening. I thought it was just a weird Eric thing that only he did, Stupid me didn't even realize that it was associated with pain. He always seemed calm, spacey, and happy while he did it (the only time he was some days). then when I found more info on reflux I went "AH HAH! Sandifer's syndrome?!?"

There are some great sites with info about Sandifer's Syndrome.

My Vivi has it and it was hard to get her diagnosed (well officially diagnosed). Since I don't have enough posts to add links I'll cheat. If you Google it there is an article on emedicine that is by Dr. Raj Sheth that is good.
Also
marci-kids(dot)com/rigidbodyposturing
has cartoons of some of the Sandifer's posturing that are interesting. It also has a lot of GERD info.

This article was very interesting to me. It talked about neurologically "normal" kids who showed Sandifer's Sydnrome.

www(dot)int-pediatrics(dot)org/PDF/Volume_19/19_1/39_41_ip1904(dot)pdf

Just replace the (dot) with .

Good luck and keep searching!