Ben has been SEIZURE FREE since December 5, 2018! Friends and family have witnessed some tough outcomes for Ben over the past three years since his first seizure and Doose Syndrome diagnosis--seizures that were unpredictable, hard to treat, and tough to watch, drop seizures that led to significant injuries, and medication and seizure side effects that affected his behavior and cognitive abilities. We finally landed on the right treatment combo that stopped his seizures for now and we are thrilled to have reached this milestone!
In November 2018 Ben was having hundreds of seizures a day. Seizure types included myoclonic/jerk seizures, absence/staring seizures, and atonic/drop seizures. During this time, he powerfully landed on his chin from an atonic/drop seizure that resulted in injuries: a laceration needing 7 stitches, knocking out a tooth and fracturing a molar, and fracturing his jaw in two locations. A week after these injuries, as he reached the therapeatic dose of Felbatol, we witnessed Ben's last seizure!
We are thankful for everyone who supports, prays for, and loves Ben. Ben's epilepsy doesn't play fair but we continue to fight and remain hopeful that he will be seizure free for many more days, months, and years ahead!
Our family uses some of the services provided by the Epilepsy Foundation of Minnesota. Ben attended their day camp in July 2018 and 2019. He loves the activities and we love that he's connecting with other children who have epilepsy. He would like to attend the overnight camp, Camp Oz at Camp St. Croix in Hudson, WI, when it returns to their summer schedule. Chris and I attend the Epilepsy & Seizures Wellness Expo every November. We listen to keynote speakers, attend breakout sessions, and chat with vendors. We learn more about seizure treatment history, new treatment developments, and inspriring treatment stories. We hear about the heartbreak of SUDEP (Sudden Unexplained Death in EPilepsy) and the weary role of being a caregiver to someone with epilepsy. We learn about financial planning for when a dependent has cognitive impairment from epilepsy. And we learn about the social stigma that continues to exist for those with epilepsy. This expo increases our awareness as we try our best to be the parents Ben needs us to be. We can't thank the Epilepsy Foundation of MN enough for the services they provide to families and individuals who are affected by epilepsy!
The Epilepsy Foundation of MN has canceled their usual fundraising walk in response to the health concerns of large gathering sizes during the COVID-19 pandemic. Fundraising teams are encouraged to walk locally in our own neighborhoods. Please join Ben's Brain Brigade at 9:30AM on Saturday, October 3 at the Doar Prairie Restoration in New Richmond, WI. For directions using Google Maps, click here.
