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