JJ was diagnosed with epilepsy July 2014 at the age of 8.  He was found unresponsive by his older sister one day in his game room.  Nothing was found at that ER visit.  Two days later both JJ’s sisters witnessed JJ having a seizure while watching TV.  At this time JJ was referred to the University of Iowa Stead Family Children’s Hospital Neurology Dept.  JJ started seeing Dr. Bonthius.  He had an EEG and was diagnosed with Generalized Epilepsy.  (Epilepsy is defined as a disorder in which nerve cell activity in the brain is disturbed causing seizures).  JJ’s seizures are called Grand Mal or Tonic Clonic.  This means he has a burst of uncontrolled electrical activity between brain cells that causes temporary loss of consciousness and violent muscle contractions.  JJ’s childhood changed dramatically.  He was advised not to climb, swim, ride a bike etc. due to risk of injury.  Of course JJ’s first question was, “will I be able to play hockey?”  The doctor was ok with this because he is padded head to toe!  For the next year we worked with the doctor to find a combination of medicine to control his seizures.   

JJ was able to go 4 years seizure free.  At age 13 the doctor wanted to take JJ off the medications to see if he had outgrown his epilepsy.  Two months later he started having seizures again and went back on the meds.  Now JJ is seeing Dr. Ciliberto and he went another 2 years seizure free.   

February 2022 JJ had a seizure at ice hockey practice and continues to have 1-2 seizures per month.  The type of JJ's seizures has changed a bit.  He now starts with an absence seizure then it develops into the tonic clonic seizure. The absence seizure is a temporary staring with muscle stiffening.  JJ has increased the doses of his meds, tried 2 new meds all together and has not been able to find a combination to keep him from having a seizure.  He continues to work with Dr. Ciliberto to find the appropriate medication to control the seizures.  In the meantime, JJ is 17 and continues to play ice hockey and dek hockey.  He is unable to drive until he is seizure free for 6 months.   

Thankfully JJ's friends, coaches and teammates know what to do when JJ has a seizure and are able to keep him safe. Our family is grateful for the University of Iowa Stead Family Children’s Hospital and Dr. Ciliberto for working with JJ through this process and being a great resource for our family.  We are excited for the QC Blues Benefit game and raising money for their research to End Epilepsy.