My name is Cole. I am 7 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. 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". 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 (click HERE to see my surgery journey) 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!
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.
Update (March 2016): It's been a rough year for me, I started having seizures again. Sadly, I have a new seizure type as well...Grandmals. They are very hard on my body and I sleep for hours after having them. I still struggle with my mood and behavior & get very upset and angry. I have a hard time playing with kids around me and get very aggressive so I have to be at arms distance. I get headaches a lot. I'm still working on "communication" and have started copying my teachers, parents and sister. I like to copy my little sister the BEST! She's only 2 but she is a great help to me. She LOVES ME so much and says "Coe, say mommy, say daddy, say Coe...", she also gets me my favorite pjs when I'm sad or my blanket when I'm having a hard time. She also pushes me in my stroller. I like to SCREAM a lot which makes it difficult to go out in public because my voice is SO STRONG it hurts peoples ears and they get mad at me sometimes & think that I'm a typical kid "acting out". I LOOOOVE making messes and I'm REALLY fast & good at it...I can make a big mess in less then 2 minutes...I have taught my sister to do the same!