Sandifers v. Seizures

My 11 week old daughter was diagnosed via 24 hour channel test with having severe GERD with obstructive apnea.  She was at the time being evaluated for seizures and had come back with a normal EEG (24 hour video) at 3 weeks.  Since that time, she has been treated with Prevacid and Zantac, we believe succesfully as her behavior has been positively impacted.  However, her seizure like activity continues.  I have read the articles mentioned in the other posts regarding Sandifers and it does not sound like her.  Even the gastroenterologist doesn't think that her behavior falls into the category of Sandifers. But my question is - can seizure like activity in Sandifers happen outside eating?  Her behavior happens during sleep, during the day or night, awake, having just eaten or not.  I am so confused and desperate to help my daughter.

[Kevin Kennedy, Ph.D.]

Would you describe in  a little more detail the activity you refer to as seizure activity?

[portuguese mom]

Did they take her off milk based products? Did they test her for protein and other food intolerances? you need to see a genetics specialist ASAP as well as the neuroligist.  There are many syndroms (syndromes) that cause seizures.  Some of these sysndroms are related to food intolerance such as the body inability to process protein.  They can be managed by identifying the food that causes the issue in the brain (such as the seizure). In your case, she is only 11 weeks and milk/formula/ breast milk is the only food that she is taking, unless her doctor already took her off the milk based food. This is very easy to replace with a non-milk food type.  Good luck and God bless your baby. I know what you are going through.

[bellabeanmom]

Seizure like activity for her includes her being completely lucid and then the next second, it is as though she can look through me and basically checks out.  Her eyes either shift very quickly from side to side or roll back and up to the right.  It happens when she is awake or sleeping.  Her breathing becomes very rhythmic - if I am not watching her it is the sound of her breathing that tips me that she is having one of these episodes.  Her mouth will either have her tongue up against the top of her mouth moving extremely quickly or she will stick her tongue out (always towards the bottom right).  Recently her entire jaw has moved throughout the duration of the activity.  She smiles or one side of her mouth at times smile, or her cheek twitches.  Her arms and legs get involved - usually only one at a time (though the side changes).  Her eyes during these episodes are completely fixed and the second that the episode is over her eyes immediately respond to light normally again. It is though she is dreaming awake.

[Kevin Kennedy, Ph.D.]

You are correct in thinking that your daughter's symptoms are not typical of Sandifer's Syndrome, in which spasmodic dystonia and rigid posturing are observed. Sandifer's is really a gastroseophageal condition that has neurologic components, vs a primarily neurological condition. In cases of Sandifer's, the symptoms are usually, but not exclusively, associated with feeding. More importantly, though, your daughter's symptoms differ from what is usually seen in Sandifer's. There are indications that your daughter may be displaying a seizure disorder (Sandifer's is not a seizure disorder). It would be prudent to persist with additional evaluation under the care of a pediatric neurologist. One challenge diagnostically is to discern seizure-like states from actual seizures in infants. The situation with your daughter does invite additional study.

[bellabeanmom]

Thank you for your response.  She has had two 24 hour EEG's - on the first she exhibited this behavior - the EEG came back normal.  On the second, she did not have any episodes, but we are still waiting on the results - which I believe will be normal like the first.  What else can cause seizure like states?  I'm trying to cover all my bases to figure out what is happening with her and greatly appreciate your insight.

[Kevin Kennedy, Ph.D.]

Here is a reference you might find helpful in this regard.

http://pedsinreview.aappublications.org/cgi/content/extract/27/5/e42

[Kevin Kennedy, Ph.D.]

One additional note: As you can see from my credentials, I am not a neurologist. I'm glad to offer you my best guidance and opinion, but you might consider posting your question on the Neurology Forum as well, wher it can be considered by a neurologist from the Cleveland Clinic.