Cole-Undiagnosed

Cole-Undiagnosed

Cole-5 years old

Diagnosis-Unknown

USA

Cole-Undiagnosed

Cole-Undiagnosed

My name is Cole. I am 5 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 a 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, even though I am 5. 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 didn’t know how to help me.

Cole-Undiagnosed

Cole-Undiagnosed

 

In February 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” which happens in utero where my brain didn’t fully form. I have some sort of Chromosomal Abnormality which they have not found. They found a 3rd seizure type as well, “Infantile Spasms” aka “West Syndrome” which are HORRIBLE seizures with a poor prognosis on development.  In September 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”.  I am in ABA Therapy and continue to learn at my own pace!

Cole-Undiagnosed

Cole-Undiagnosed

 

Cole-Undiagnosed

Cole-Undiagnosed

Cole-Undiagnosed

Cole-Undiagnosed

 

Cole-Undiagnosed

Cole-Undiagnosed

Update (March 2013): I started doing ABA Therapy in August 2013-current.  It has been the BEST THING EVER FOR ME!!! I have started talking!!!  I can now say: Daddy, Apple, Stay, Weese (please), no, yes, Go Cole, Whoa. I can also sit in my chair with my hands & feet down. I can point to things I want.  Sadly, after this school year I won’t get ABA Therapy unless my parents pay for it out of pocket.  It is VERY costly ($700-$2000/month).  This is the only thing that has really worked for me, but I will have to go without because the state I live in does not include ABA Therapy in medical insurance.  To see more of Cole go to: www.beatingepilepsy.blogspot.com

You Tube Video of Cole’s Journey-   https://www.youtube.com/watch?v=PUlOxN9WJYA&noredirect=1#t=1

Cole-Undiagnosed

Cole-Undiagnosed

Cole-Undiagnosed

Cole-Undiagnosed