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
Seizures”
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
Encephalopathy”
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
Diet
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
Epilepsy”
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
Cleveland
Clinic
in Ohio & neurologist Dr.
Deepak Lachhwani
found that my
left temporal & occipital lobes are malformed

aka “Cortical
Dysplasia
“. 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

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