David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
David’s VNS surgery was successful with no complications, and he is recovering well. His “medicinal rages” have become less frequent and intense. Progress is evident as he reduces phenobarbital, experiencing no seizures. David resumes normal activities, preparing for a move soon, and the family appreciates ongoing support through this journey.
After exhausting options to control David’s seizures and facing insurance hurdles with Epidiolex, the family is proceeding with Vagus Nerve Stimulation surgery. They hope for improved seizure management and quality of life. Despite challenges, they celebrate David’s progress over two years battling FIRES, expressing gratitude for support during this journey.
David’s journey with FIRES marks two years of challenges, particularly with Phenobarbital, which he is beginning to wean off due to its side effects. Transitioning to Depakote has been successful so far, with no seizures reported. Despite hospital stays being disliked, the exceptional care at Nicklaus Children’s has made a positive impact.
David Fighting F.I.R.E.S.