Over six months ago Gabby started having some issues that we just couldn’t quite figure out. I started noticing first that she seemed somewhat confused at times. She would randomly ask strange questions that didn’t make sense or say something completely off topic that she wouldn’t even be able to explain. Then she started forgetting stuff pretty often which at first I chalked up to her Hemipherectomy but it got worse. There were several times she would be lost as well. When I say lost I mean she wouldn’t be able to find her way around her school or Nana’s house or even at home sometimes. It wasn’t that she truly forgot where rooms where but it was almost like she couldn’t think straight to be able to actually focus on where she was going.
I always called and reported these incidents with her Neurologist. Over the time period she also was having problems losing bladder control which is extremely unusual for Gabby. The only time she has even had bladder loss is during a seizure. So obviously that was my first thought. After months of progressing episodes, her teachers and therapists started seeing it as well. They were all very alarmed over the past two months that they even wrote notes to share with the Neurologist to somewhat ‘thicken‘ my case.
Three weeks ago her Neurologist scheduled testing to be completed on last Thursday and Friday over a full 24 hour period. We went in on Thursday morning at 8 AM but unfortunately didn’t leave until today, Monday. Her 24 hour test turned into 5 days which I’ll be honest, I wasn’t a bit surprised. It started with the video EEG and then we had the MRI which she had to be put under full sedation for. I updated mostly on Facebook and some on Twitter, but I also created a Whrrl story with photos throughout our stay. Check it out below so you can follow along with our past five days and see live updates.
End results: MRI looked okay and about the same as it did after her Hemispherectomy, video EEG did show seizure activity and extreme spikes on the frontal right lobe, we were referred to another specialist yet no appointment scheduled yet and they did raise her Epilepsy medication dose to test it out and if we don’t see a positive change then they may want to monitor her longer next time. Lovely… So we are hoping for the best and testing out their recommendations one step at a time.
Thanks for all the wonderful support!