"Starting" to freak out a little...

Okay...I probably shouldn't blog this, but I can't get on facebook at work, and I need to have an on-line freak-out to get all my thoughts on "paper."

As I mentioned before, Kiera has had a two very long (30 minute) seizures that were clearly seizures, even to my "untrained" eye. She's been on anti-seizure meds since Decemeber, we've done the initial EEG, CAT scan, MRI, etc, and we are "patiently" waiting for a neurology seizure study that I think is scheduled for June. I was fine with waiting... until yesterday ...when I started to wonder about some of Kiera's other unusual activity and whether she has had other seizure activity that has been going unrealized.

Scenario: Last night she woke up from a nap. She had been sleeping on her arms in kind of a traditional napping pose. She was cranky at waking up. When I picked her up, her arms remained in the pose, folded hand over hand and elbow to the ear. She went back to "sleeping" and lying against my chest in this pose. When I would try to extricate her she was kind of like a magnet, wanting to lie against my chest and arms continuously in this position. She seemed aware at all times, but would cry if we tried to move her arms. She seemed cold and was shivering, although it's been cold in our house, and her eyes were very dilated, but it is also kind of dimly lit in the living room. There was some slight lip smcking, but not a lot, that I attributed to being thirsty or waking up. When I handed her off to daddy, the normal thing for her to do would have been to change sides for her arms, but although she was laying against him on her left side, her arms remained in the pose on her right side. Finally, I sat her up and was able to slowly massage her arm down or get it "unstuck." After this weird event, she fell back asleep and slept ALL night, having already been sleeping since before 6PM.

Now I am freaking out! Going back in my memory, I remember these frozen pose situations after naps at least 3 or 4 times. I started researching seizures on-line and found Tonic Seizures that seem to describe some of what was happening. Another person's description mentions her son raising his arms over his head and grimacing. ACK! Now I am going through all the times she raised her arms over her head upset about unison sound that would make her cry like she was in pain and re-evaluating the whole thing. What if the sound was triggering a seizure which would make her arms stiffen like that, and the crying was BECAUSE of the arm stiffening (not the sound sensitivity that we had assumed) and wanting to bring her arms down but not being able to? How many times has she done this raised arm thing? Oh...50... 100? I haven't counted. What if her developmental delays are being enhanced by seizure activity? What do we do now?

Big sigh. I have a call into the neurologist and am waiting to hear back from her so we can discuss this. Maybe they can move up her appointment. This is so weird. 4 1/2 years of medical drama, and NOW I'm freaking out. Does anyone out there in blogosphere have seizure experience that they might offer?

Kiera is so sick right now...

Keep Kiera in your prayers so we can stay out of the hospital. Both she and I have been unable to permanently shake this nasty respiratory stuff that we caught on Christmas Day. I realize I haven't posted much, but life has been pretty non-stop miserable. I finally feel better today than I have in over a month (even with the chronic coughing and nose blowing), so I hope there is light at the end of the tunnel for her. She started running fevers and vomiting Friday after we thought we were finally getting over the last cold. It seems like she's getting tag teamed by different viruses. I've got her on round the clock fever meds and had to bump her nebs back to every 3 hours in hopes of clearing her out so we don't have to admit her and risk her catching something else in the hospital.

Our extreme weather yesterday probably didn't help. It reminds me of that big storm back in 2007 the day of Kiera's tracheostomy surgery. I think there is 2 feet of snow in my back yard. Too bad Kiera isn't well enough to enjoy it. It will be nice one day when she is well enough to do something simple like sledding down our driveway. Here's to hoping for that day to come soon. In the meantime, I've got a sick kid to hold. Gotta go.