Hi, I'm new to the SN boards but i know lots of you have seen/posted on my DS's EEG thread.
Attempt at brief history:
DS2 (16mo) 'normal' apart from sleeping lots from about 10months.
At 15months he had 2 'fits' in 2 days & 2 trips to a&e.
Then started 'nodding'/absences.
Had an EEG - abnormal result.
Had an MRI - bright spot seen.
Started on Epilim, at a quarter dose to build up slowly.
GOSH appt this week - very kind and helpful doc gave us lots of info, not sure we've processed it all yet.
An area about the size of a slice of a medium size tomato that did not develop in the womb.
Will not get bigger or go away.
Rest of brain should grow around it and take over whatever might have come from there.
His development is right on track and should continue.
He will not 'grow out' of it.
We can speed up the Epilim doses and get to the full dose next week.
Then give it 2/3 weeks. If no control, she wants us to change to Keppra.
If no control then she wants to discuss surgery.
(is prepared to discuss the keto diet first as she is a specialist in it & i am very interested in it)
DS2 seems to be getting worse recently, had another seizure this morning (only 30secs so not v bad), is certainly more tired, has big clusters of absences, is grumpy (previously never a grumpy baby) and so on.
His big seizures we were calling TCs but the doc doesn't think they are - looking at a leaflet from the hosp, think we could maybe call them Tonics. not really sure how to refer to them.
(sorry not brief at all!)
Anyway, all happened incredibly quickly, DH and I still in disbelief & shock. Though, we are trying to be positive and say, if we get control (with either drug) then we will just carry on as normal, thinking of it as something similar to diabetes/asthma. Doc was v insistent on not using it as an excuse not to do something.
Any tips, advice, support welcome.
thanks for reading this far!