Keeping Us On Our Toes

Let me first start by saying that we love MCV but today was really the first time we missed CHKD. The staff at the EEG Lab at CHKD always took such awesome care of our girl and not that they didn't do a nice job at MCV, it just wasn't CHKD. We missed Miss Amy, it was cold, they didn't have a nice, comfy video room with a TV...we are spoiled rotten, I know! :)

Onto the EEG...the area where the activity is coming from is the area that was questionable back at surgery time. Our neuro was just conservative and didn't want to take that area out unless it was absolutely necessary because it would mean taking some of Charlie Claire's sensory strip out.

The activity is not a seizure but it's not NOT a seizure. There is rhythmic activity happening but it's not really forming into a full seizure and when it's done the EEG isn't showing a typical post seizure pattern (I'm not 100% familiar with this but apparently it would slow down or something along those lines) also when it happens she is still "with it"...looking around, chatting, kicking her legs, eating, etc. so Dr. M doesn't want call it a seizure just yet. He said it could be healing and as her brain is reorganizing this could be a "side effect" because it started happening when things seemed to start clicking for her developmentally. So, we are starting CC on keppra as a precaution to see what happens, if it helps then great if it doesn't then worst case would be going back in and removing that last small area. Keppra is one of the easiest anti-epileptic drugs you can take and has minimal side effects. CHKD tried her on that back in December with no luck but at the time she had a big area that was seizing all day and now there is a tiny area and it's not seizing constantly.

Dr. M said he isn't discouraged because the rest of CB's EEG looked AWESOME! The right side of her brain....perfect, front left...perfect and the only activity that happened was corresponding with the eye flutter...nothing happening besides that, meaning she isn't having seizures we can't see.

After the EEG and meeting with Dr. M, Charlie Claire had to get some blood work done. Dr. M wanted to get a phenobarbital level. They want to take C off the phenobarb eventually so depending on how she does with the keppra we might do that soon. Another moment of missing CHKD. The lady who takes C's blood at CHKD NEVER had a problem and Charlie Claire always handled it like a champ. I don't know what happened today...Shortcake wasn't having any of it...this lady stuck her twice and nothing came out, C was HYSTERICAL (I'm talking turning blue hysterical), she got someone else to come help her with no luck and finally after 30 minutes they did a finger prick and squeezed the blood out...C and I both were sweating when it was over.

So, its not fantastic this is happening but Dr. M told us to not be defeated that this wasn't completely unexpected. We are really crossing our fingers and saying TONS of prayers that this is just a fluke thing and will resolve, if not then back to the OR we go...

Tomorrow CB will start the keppra and it will take about 5 days to really get in her system. We will go from there...