About Brynn and Brett

Brynn (15) and Brett (10) have likely had seizures since they were toddlers. Brynn had his first “known” Tonic Clonic Seizure while taking a nap on Jan. 25, 2009. Everyone is allowed one seizure they said… It wasn’t until we found him having his second “known” 10+ minute Tonic Clonic seizure in the early morning hours of his 11th Birthday that he was diagnosed as having Epilepsy. Brett’s pediatrician determined that his seizures and wetting himself was faking for attention after a normal 20 minute EEG. Almost two years later, a sleep deprived VEEG revealed Epilepsy in August 2013. Brett completed an Epilepsy Panel with only having two unknown significance genes (p.Gln88Glu and p.Leu146Val) come back. Both boys carry the diagnosis of Cryptogenic Refractory Epilepsy. Brett, who was once ahead in his learning journey, has become developmentally delayed and Brynn has had neuropsychological testing revealing Cognitive Disorder NOS and Cognitive Disability. Brynn received a VNS implant in October 2012 and Brett had his implanted in May 2014. Refractory Epilepsy roller coaster ride no one wants to be on…

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