I've posted this all over the place, but if you've read my posts you know that my three year old dd has epilepsy. She's had multiple MRIs showing "white spots" in the right hemisphere of her brain. In the white matter, not the grey matter. They are fairly large, and have stayed the same over repeated MRIs - ones with contrast, ones without - so we know they are a product of her brain, not a mistake on the scan.. Anyway, we're not sure what they are. At our last neuro appt. in May, we talked about maybe trying to figure out what was going on, vs. just watching and observing. The neuro said mito disease was something in the back of her mind, but didn't want to put dd through that and/or genetic testing if she didn't have to, since my daughter has been through alot the past year and was having quite a bit of behavioral and emotional difficulties, which were priority.
However, we go back in August and I really want to talk more about this. I know nothing about mito disorders, though I've seen them mentioned here often.. If anyone could clue me in and/ or point me in the right direction to start reading up I'd appreciate it. I'm not a big googler.
The other thing in my searching that has come up was tuberous sclerosis. I know nothing about this either...Does anyone have more info about this?
Anyone know what else this could be? Whenever I google, MS comes up - but I know that's not it.
If anyone has any insights, I would appreciate it so much. I am starting to wonder if I should have dd evaluated on the mainland. She is stable now, healthwise - but I just need to feel like I have some answers to the why's. The doctor always says not to be fixated on the white spots, but hello! Giant lesions on my kid's brain? Um, hard not to, yk?