David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
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.
To raise awareness of the rare syndrome F.I.R.E.S. and document David’s progress, a video blog will supplement the existing written blog occasionally. This aims to showcase changes for medical professionals and family, while recording medication effects. Despite ongoing challenges, doctors find David’s progress remarkable with no signs of brain damage.
David Fighting F.I.R.E.S.