January 5, 2013

Cameron Update:9:00pm; For the first day in a while he didn't have a fever of seizure activity, but I am saying that out loud because he right next me (teenagers have a mind of their own). There isn't much for news except for Monday they will be doing a muscle biopsy, an MRI, and starting him on a Kenogenic Diet (all protein and no Carbs or Sugar). The Neurology team believe that Cameron might have "FIRES" (Febrial-Infection-Related Epilepsy Syndrome) now before you go and do research on this just be warned that what you find isn't something you want read. It's a long shot on their part but it is the only thing close, the cases are very rare and don't show alot of similarities to Cameron. Also each one of the for case studies were treated with only one of following ways. AED (anti epilepsy drugs), Steroids, IVIG's (Intravenous immunoglobulin ), and BSC (Brust Suppression Coma). Cameron is on all four of these at this time. Diagnosing Cameron with is hard because all 77 cases were done under a Clinical Study and not Idology. Please be aware that we researching Rare Diseases the information is rarely good, we are being hopeful.