Juvenile Epilepsy Awareness

Fingers Crossed (RNS DEVICE INFO)

Hello everyone! We are a little late to our update!  We promised to share info on the RNS device and also wanted to give a link to a webinar that is coming up on the topic of epilepsy surgery!   

Bella and Courtney are writing this together so please feel free to reply to both!  On 4/15/21 Bella went back to NYC for her 3 month data review.  During these visits the neuro team looks at the the seizure activity that is collected through her implanted RNS device. (Responsive Neuro Stimulator-basically a brain pacemaker). We are beyond thrilled to report that she only had 1 recorded 15 second seizure and this was when we tried to go fully off of one of her medications too quickly. Overall she has been seizure free for over 4 months now.  We are so happy to say that after trying 12 different medications one is working longer than any other has in the past.   When a person is diagnosed med resistant or with refractory Epilepsy, you will often see a medication work for a while then slowly stop working and increased seizures occur.   The new medication she is taking is fairly new.  It’s name is Xcopri.  And to make things even better she isn’t even at the max dose. 🤞🏼 We usually hate to even talk about these things but many people don’t know about this medication yet so knowledge is key to care and advocacy.  We are not sure how much the RNS is also working. It could be a combination of both.  Lowering the 2 other medications is still in the works but we plan to take it slow...An RNS device has 2 purposes. It acts like a 24 hour internal EEG and is also slowly programmed by an Epileptologist to learn the patient’s specific seizure activity and stop it when abnormal activity is detected.  It’s pretty amazing.   We will try to add some images of Bella’s implant, the device, and also the seizure activity on an eeg report.  A patient is only eligible for one of these devices if they have refractory Epilepsy.   Which, in essence, means they are med resistant and have failed at least 6 medication trials.  That number may vary based on Neuro teams.    In Bella’s case she did also attempt to have brain surgery to have the seizure field removed, but it was too risky given the area of the brain. Please reach out if you have absolutely any questions about this or would like to talk to a medical professional for more info.  We can lint you in the right direction.   

On another note, because of all of your support and networking we have been able to connect with 3 new families that have been impacted with an Epilepsy diagnosis.  2 of the 3 were directly forwarded JEA’s page by our followers.  I cannot stress enough the importance of having others to talk to, vent with, cry, listen, celebrate, and advocate for the best care.  The individuals we met were 43, 6, and a 14 years old. More on their stories when we have permission to share.   Thank you so much for helping raise awareness and support through networking!   

Webinar- recording http://www.bcepilepsy.com/events/adult-epilepsy-surgery-webinar-april-28th-at-5-pm-pst

RNS and EEG IMAGES of Bella.

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