Cheyenne Update

We met with the neurologist this morning. He showed us the scans that were done and some the EEG readings that were taken during her stay. He showed us her “normal” EEG readings and what it looked like leading up to and during a seizure. Long story short, our doc believes all of her seizures are originating from the same location way back in the occipital lobe on the left side. Once the seizures started most of them spread into the temporal lobe on the left side but a few spread over to the right side. 

He told us that since there was some spreading to the right side, their team of doctors were split on whether or not she would be a candidate for surgery. However, he believes that all of her seizures have the same origin starting point and if that starting point can be identified and ultimately removed, she would be seizure free because if they don’t start, they won’t spread anywhere. The team agreed but since they don’t yet have a crystal clear indication of where the seizures are starting, the next step is for additional scans and testing called a “stereo EEG or sEEG”. (Note: DO NOT google that unless you have a strong stomach!) Anyway, to do the sEEG, she will be admitted to Children’s for another 7 days. The day she gets there, they will put her under, shave small areas of her hair and drill pretty tiny holes into her skull (16 of them to be exact) and insert long super skinny eeg probes into her brain. She will again be taken off all meds and be having multiple seizures while admitted. The inserted probes will be able to more precisely pinpoint the seizure starting point(s). In addition to the tracking of seizures, they are also able to use the probes to send pulses/stimuli to different parts of her brain in order to do more precise “brain mapping” to identify the critical areas of her brain that control speech, motor, etc. Once they have captured enough seizure activity and performed the brain mapping, she will have the probes surgically removed and the holes will be closed with one single stitch per hole (that’s how small the holes are). The docs will then use all of that new information to determine for sure whether or not she would benefit from surgery.

They were prepared to admit her the Monday after Thanksgiving. However, we decided to push it until after the first of the year. We won’t get home with Faith until 11/9 and we want her to have adequate time to assimilate into our family before having to watch her new sister go through any of that and Kevin’s paid time off bank will reset on 1/1 to allow him to spend more time with Cheyenne during that week.

So for now, we will get the additional scans and other tests (like a vision field test) done while we wait. We are scheduled to meet with the surgeon right before we leave for China so we might get some more information then, but not much.

I’ll continue to keep you posted with any new information. For now, the new dose in medicine seems to be working well so we’ll keep praying she stays seizure free for a long while.

Thanks to everyone for your continued prayers.