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 Nurology 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 durgs), 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.
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