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Seizure update July 19, 2012

Filed under: Uncategorized — ryangrace11q @ 4:30 pm

Ryan did have a seizure yesterday but it was the type of seizure that is brought on by holding your breath.  It’s called a reflex anoxic seizure.  Another term is syncope (sink-oh-pee) which is basically passing out.  Our pediatrician is pretty confident that Ryan got upset, couldn’t catch her breath, and subsequently had the eye roll and blue episode and was unresponsive.  She was telling me that kids can put themselves into such a state by just having a temper tantrum and holding their breath.  Some kids even have full-on convulsions.  Thank God that didn’t happen to Ryan but we really need to watch her when she’s upset because she’s the type of kid that can cry so hard no sound comes out.  She’s fussing in her crib right now trying to go down for a nap and I’m glued to the monitor making sure she doesn’t start to really lose it.

But the question still remains of why she got so upset.  In our research we found that these episodes can be brought on by pain.  So that brings us back to her neck.  She also has an ear infection (which is totally random and we had no clue) but the doctor doesn’t think that could have caused the seizure.  The doc is going to call the neurosurgeon today and try to find out more about what we can do.  I told her that doing nothing wasn’t an option (considering the neuro guy wanted to wait until April for a follow-up MRI) and she agreed.  Even if it means a neck brace or something, we need a plan.  The fact that Ryan can get up on her hands and knees and rock, which is huge progress, but still has a severe head-flop isn’t making sense to her or us.  So now the hunt for the answer begins.  Operation: What The Heck Is Wrong With Her Neck has officially begun.

On a happy note, Ryan is doing great today.  She has gained about 10 ounces in 3 weeks because she’s eating so well.  And, she just settled to sleep after about 5 minutes of “mamamamamama”.  I love hearing her say that!

 

3 Responses to “Seizure update”

  1. Jenn Sprung Says:

    My daughter is a syncope kiddo- it’s sooooo scary. She is 4 now. They used to happen almost every time she cried, but now it’s very infrequent. It does happen if she bonks her head. I am not sure if she carries the 11q+ anomaly or not, since we haven’t had the family study done yet. He uncle, who I highly suspect carries 11q+ also has syncope. I can’t help but wonder if it boils down to a common denominator. I know that they tell me it’s *normal, but for crying out loud, if it’s normal then why is it that I’ve NEVER heard of it before my own kids came along!

  2. Happy to hear you all know what it is…good luck with learning why. 🙂

  3. Serge Says:

    Just checking in today on Ryan and all of you!! Love her photos what a cute baby she is. Always thinking of you!!


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