It's just me, Hubby of 5 years, and 16 year old Kid. Three weeks or so ago, my son's epilepsy got worse. Grand mal/tonic clonic seizures increased to about 7-8 a week. He started regressing in maturity. Had to be pulled out of school after a big seizure there scared the teachers silly so no school for the rest of the year.
Finally have our diagnosis tho. PET/CAT/EEG on Mon Dec 3 showed the neurons in the right frontal lobe didn't form correctly in utero, plus he has lesions and a small tumor. Can't do much until seizures are under control so meds were upped, which did help (as shown on yesterday's EEG) but furthered his regression and also probably caused an odd-pattern swelling on his scalp. Decreased 1 med last night and will again tonight then will stop unless seizures come back. Am to keep a close eye on swelling.
SUDEP (sudden death in epilepsy) is a real possibility.
Meanwhile, we're trying to find ways to make more money because his medical bills are mounting. Inpatient hospital stays and surgery are expected next year.
Please keep us in your thoughts.
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