Caitlin is our 20 year old, 2nd daughter. Normal development until
three, from there we have had failed every drug, 2 brain surgeries,
VNS, Multiple years of ER visits, and no seizure control.
I had no idea there were so many like Caitlin. She is your classic
case. I always knew her epilepsy was Lennox-Gastaut, but never
knew it was a syndrome, or that so many had the same
progression. I remember the first doctor telling us that she could
three, from there we have had failed every drug, 2 brain surgeries,
VNS, Multiple years of ER visits, and no seizure control.
I had no idea there were so many like Caitlin. She is your classic
case. I always knew her epilepsy was Lennox-Gastaut, but never
knew it was a syndrome, or that so many had the same
progression. I remember the first doctor telling us that she could
"show us pictures" but the people are in wheelchairs. I at the time had a child that was
riding a bike, going to dancing school, playing soccer etc....so i figured this was just an
extreme. 17 years later, this now makes sense. She at this point is functioning like a 5
year old, is in Special Ed at our local high school and we are looking for day programs
for next year, as she "ages out" of the current high school, and will need a day program,
as she can never be left alone.
-Caitlin's mom, Eleanor
riding a bike, going to dancing school, playing soccer etc....so i figured this was just an
extreme. 17 years later, this now makes sense. She at this point is functioning like a 5
year old, is in Special Ed at our local high school and we are looking for day programs
for next year, as she "ages out" of the current high school, and will need a day program,
as she can never be left alone.
-Caitlin's mom, Eleanor
