EEG Update

Before

Getting the leads glued on

You don't have to be an epileptologist to recognize EEG chaos. 
This was taken while Otis was at rest--not having any (visible to us) seizures.  :(

After/Going home!

We ended up being discharged from the EMU just 24 hours into the study, since that's all it took for the epileptologist to get the info he needed. The study will still need to be fully read, but the preliminary reads show that O's brain activity is chaotic, and that seizure activity appears to be coming from all over his brain, rather than originating from one location. We continue to be so grateful to our epi back in Kansas City, who talked reason to us back in 2012 when we were about to rush into a hemispherectomy surgery at Cleveland Clinic. The study also confirmed all of the different seizure types we suspected he was having:  spasms (now just called spasms or "epileptic" spasms rather than "infantile" spasms now that he is no longer an infant), myoclonics (jerks), atonics (the head drop ones), and short (10-30 second) tonic-clonics, also known as grand mal seizures.

There was no discussion about treatment plan recommendations. That will take place in a follow-up office visit, which we have yet to schedule. We did ask for O's VNS to be adjusted to go off more frequently before we left today. Back in January, we had asked his neurologist here in the Springs to start backing off on the settings so we could see if it was having any effect on seizure control. We always suspected that the VNS wasn't helping with seizures. Around the same time as that adjustment, Otis was sick on and off for about a month, and he also started having daily TC seizures. Once he finally got better, the TC's continued. So today in the hospital the adjustment was made to go back to the pre-January VNS settings. We will keep an eye out for any changes in TC activity going forward, with the hope that we begin to see fewer. Otis did have a short TC when we got home from the hospital today, but that could have been the result of being so wiped out. None of us slept much last night, but he was the one with 25 leads glued to his head, poor guy!

Thanks to everyone for all of the love you've shown to us through your kind words and prayers. It all helps us more than you will ever know.

Here is a little message that Mr. Cutie Pajamas asked us to share. (At 0:30 he starts signing for "more" because he really REALLY just wanted Daddy to give him his bedtime plug!)