Wednesday, October 14, 2009

Bumps in the Road... Upsetting the Apple Cart?

So, over the past couple of weeks we've had some roller coaster rides. They are minor in the scheme of the big picture -- but we all know that minor bumps along the road can upset the apple cart just as well.
Alexis has numerous doctors, nurses and "followers" of her medical care. We have seen Neurologists throughout her very short life but they have always been "come-and-go" doctors. What I mean here is that they descend on her in the hospital, do some test and then give her a "clean" bill of health. She's had a Neurologist when she was in the NICU in 2006 and in the ICU in 2007.
Over the past year, Alexis' sleep studies have shown SPIKES. Our Sleep Doctor from Children's was quite alerted after he saw two sleep studies showing these SPIKES.
What are spikes? Misfirings of the brain.
Are these concerning? Well, not necessarily. But our sleep doctor is also a Neurologist. To understand what is going on more thoroughly, he 'ordered' an EEG for Alexis (this was a daytime EEG and the leads were on her head for 20mins). The results he saw were spikes all over the brain, a lot of activity and a lot of curiousities to what could be going on. His recommendation was that Alexis should get a 24 hr EEG to watch more closely the brain spikes.
Why the concerns about the spikes? From Alexis' Neurologist/Sleep doctor's experience, he has never seen a kid with these spikes that doesn't have seizures. His direct quote to us, "It's almost a guarantee that Alexis will have seizures based on her abnormal spikes in her brain".
Hence, the bumps in the road. Today Alexis is geared up with her 24-hr EEG to determine if she's already having seizure activity.
In the mix of everything else Alexis has going on, it doesn't really surprise us.... but we had been "safe" (if that's a fair word) from Neurology up until this point in her life. Naturally though it does frighten us as we are anxious that eventually Alexis will catch a break.
So, in short, we've added another specialty to regularly see Alexis every 3 months and challenge us to figure out what is really going on and how it affects her daily life.
We'll keep you all posted on the status of Alexis' EEG results,
Catherine & Matt

1 comment:

Leslie, Arlin and Katie Kauffman said...

Katie has had two EEGs--a 24-hour at-home one when she was 3 1/2, and a 48-hour video EEG under hospital observation when she was 5. Both EEGs showed continuous spikes in both hemispheres of her brain, but neither EEG showed any true seizures. We're not totally convinced she doesn't have seizures, though, as you can sometimes observe them behaviorally in her ("zoning out," staring, rapid blinking--what's called "absence seizures"). They were never able to confirm them on EEG, though.

She was on seizure medication between the two EEGs, but we never really saw any difference while she was on it, so her neurologist advised us to discontinue it after the second EEG came back showing no seizures. We still see the absence seizure-type behavior some, though, although it doesn't seem to be as prevalent as it was a couple years ago. We've been told, though, that with the level of spikes she has, she's more at risk for a bigger-type seizure somewhere down the road. We also wonder if the spikes don't cause some learning problems for her (difficulty in focusing, short attention span, etc.).

I'll be curious to hear what Alexis's results are!