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MY STORY

This is a video of Cole's story:

 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! 

8 comments:

  1. I am one of Georgia's Grammys. Reading your story gives me such happiness. Georgie's just had her surgery and our hopes are very high. Just stopping by to say "Go Cole!!"

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  2. DEAR COLE, YOU ARE A WONDERFUL LITTLE BOY WHO HAS SO MUCH STRENGTH!! YOUR MOMMIE AND DADDY ARE SO WONDERUL AND LOVE YOU SO MUCH AS I SEE IN YOUR BLOG. I CAME ACROSS YOUR SITE AND IT IS AMAZING TO SEE YOU COME SO FAR. IT IS A LONG ROAD, BUT WITH YOUR LOVING PARENTS AND THE GOOD LORD YOU HAVE COME SO FAR. BEST OF LUCK AND ALWAYS REMEMBER TO GIVE YOUR MAMA A BIG HUG WHEN YOU ARE UP TO IT. I CAN TELL IT MELTS HER HEART AND GIVES HER THE STRENGTH SHE NEEDS.

    LOVE,
    A MOM OF A KETO KID

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  3. I stumbled upon yr blog the other night and it has inspired me to begin my own. Our stories are different but the "beast" as you call it is the same. My son has been having seizures since before he was three months old, he is now almost eight months. We have no diagnosis yet, but we stay as positive as we can. Cole is clearly a fighter as is your family!! Thank you for sharing your story :)

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  4. Do you know how I can find contact for johns mom?

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  5. have just stumbled across your Blog and am almost in shock. Most of Cole's story seems quite similar to my son Carson's story.. We have been walking this road for many years now and have never met anyone who had experienced even remotely close to what Carson was experiencing. When Carson was 18 month old he started seizing uncontrollably and with an upwards of 100+ seizures a day presenting themselves in various forms such as absence, atonic, tonic-clonic. We just never knew what the day would present.

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  6. This hits home right now for what is going through my head. My husband and I got the news on March 28th 2013 that my 3 year old son Ceagan has Epilepsy. I have been so confused on what to think and what caused this. He started have full blown seizures January of 2012 and had 3 large ones that we saw within a year. Everyone kept telling us it was febrile seizures. He had another one and the mother in me came out and I demanded that they send us to a neurologist. Right now we are stationed in Minot ND with the Air Force and the closest pediatric neurologist is 2 hours away. Thank you for blogging about your sons progress.

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  7. Hi, there. I am also the mother of a child with epilepsy. I write about Virginia's journey (nearly nine years of uncontrolled seizures) at Fits + Starts on katenealecooper.com. You look like fabulous parents and advocates and your little girl—or any sibling—will be such a gift to Cole. I will be thinking of you and following your story.

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  8. I can't believe I ran across your blog. I'm a photographer and was perusing some other photographer's websites, including Peekaboo Photos. I've browsed it in the past and somehow I missed the entry with a link to this blog.

    I had a baby in February 2012, and all was well for about 4 1/2 months. Then, he had his first seizure, which wasn't like a typical seizure they show on television, so we didn't really even know what it was at the time. Long story short, he was diagnosed with epilepsy, and within a month, it was changed to Infantile Spasms. We tried numerous treatments and medications and nothing was helping. But finally four months later in October the ACTH worked! We are so thankful because surgery wasn't an option. Again, it's a long story, but you can read it on our blog: http://ourjourneywithinfantilespasms.wordpress.com/

    Right now all is good, but it's terrifying waiting for the next problem. I hope our epilepsy journey is over, but I doubt it is. :( Anyway, just wanted to say hi and thanks for writing your blog and sharing your story. I wish you and your beautiful (growing) family all the very best!

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