Hey all, using brother's laptop so best be brief (as i can anyway) - it mostly went well.
i can't remember it all clearly but the plan is:
increas to 3/4 dose today (instead of waiting till fri), then full dose next week (the 4.13 thing she cleared up saying it's not THAT precise, we can go for 4 or 4.2!).
then 2 or 3 weeks later the fits should have stopped.
IF they haven't then Epilim is the wrong drug and we can try Keppra (think she is keener on K than E anyway from her tone). so within a few months we really should be on top of the fits.
she wants us to go back in a couple of months to discuss.
and another MRI in about 8 months to see if they can get a clearer picture of abnormal bit.
it is NOT a tumour, it is an 'area' (about the size of a slice of a medium size tomato) that did not develop in the womb (for no particular reason) and will not grow/change/develop from now.
the brain should learn to work around it so his development should NOT be affected. though he may have learning issues later on (but then i'm expecting dyslexia anyway cos of DH)...
if the drugs aren't working & another MRI shows a better pic, then they may suggest surgery.
but...she is a specialist in the ketogenic diet and was happy with my preference to try that before brain surgery (or at least to fully research the surgery before just blindly agreeing to it).
i'm sure i've missed loads but must call grandparents and try to be concise, lol!
mostly positive, some sadness, he is unlikely to 'grow out of it' but it should not affect things like driving, swimming, school, etc.
have i been clear?