Epilepsy Association of Utah

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Seize: The Story – Cole Kellar

My name is Cole. I am 3 years old. I
was a healthy little boy saying mama & dada and waving, until 10 months old
when I suddenly developed “A-tonic
drop seizures”
& “Absent
aka “Petit-Mal”in August
2009. My world suddenly changed as I had 100’s of seizures a day. After I
started having seizures, my brain couldn’t keep up and I was diagnosed with
severe brain disorder called “Epileptic
and started regressing
developmentally. I stopped pointing, waving & saying mama & dada. I
don’t talk anymore & get frustrated so I cry a lot. I am developmentally a
10 month old & a 20 month old motor wise, but I am really 3. I started the Ketogenic
in 2010-2011, it helped 75% of my
seizures, I was on it for 1 year…but ALL of the seizures came back in FULL
FORCE. I’ve also been diagnosed with “Intractable
meaning that my seizures are being
treated, but they aren’t stopping. I’ve been on A LOT of seizures meds, none of
them worked…they made my seizures worse. Doctors call me a
“complicated” case and don’t know how to help me. On February 22, 2011-
I flew across the county to the
in Ohio & neurologist Dr.
Deepak Lachhwani
found that my
left temporal & occipital lobes are malformed

aka “Cortical
“. They found a 3rd seizure type
as well, “Infantile
Spasms” aka “West Syndrome”

which are HORRIBLE seizures with a poor prognosis on development. On September
1, 2011
I had brain surgery to remove my Left
Temporal & Occipital Lobes by the BEST neurosurgeon, Dr.
William Bingaman
(who has done the MOST pediatric brain
surgery’s and has NEVER had a fatality, most hospitals have a 1 in 100 deaths
from brain surgery). I had 150+ seizures a day for 2 straight years. Since
my surgery
, my mommy & daddy haven’t seen any
“S’s”.  You can  read more about me on my blog www.beatingepilepsy.blogspot.com