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6 thoughts on “Cameron Boyce’s Death Is Bringing Awareness to Epilepsy

  1. hi I also have a seizure disorder here is my story
    When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. As i grew from baby to toddler my parents began to see that i was delayed. So i started early intervention at 3 years old I had occupational therapy and PT . In pre k I would get angry and punch any thing that was in front of me after my parents had been observing me in a pre k class and talking to the pre k teachers it was suggested that my parents should take me to a therapist to rule out any behavior issues. he took one look at me and said that I was having seizures he then referred me to a neurologist.
    At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. When i had an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned
    The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself i also have severe in Processing disorder Perceptual Reasoning, and Working Memory, Coordination,Dexterity, Fine and gross Motor Skills, Hand Strength, Visual Perceptual Skills.
    When was 19, my father died, and it seems I have had a relapse if that is possible.I still have my absence seizure but it is not enough to put me on meds. When I was thirteen I had my last EEG and my seizures showed up as misfired neurons not seizure activity per say and the Dr. called them “flurries", so here is what my flurries are typically like: I will become very spacey, I can not interact with my surroundings, I also felt locked in to place. I am completely aware, my vision becomes like a tunnel, and thing start to move or vibrate on their own.

  2. My daughter was diagnosed with uncontrolled epilepsy in 2016. Until then she was a very active, adventurous young girl. she played sports(track, basketball and soccer) it was a concussion suffered in soccer that caused the small tear that caused the defect. unfortunately she is not your common case. she has 4 different types of seizures and although she takes multiple meds for them they are still uncontrolled. the last time she ended up in the ICU and we didn't think she would leave alive. Our neurologist informed us in the very beginning that she was at high risk for SUDEP. i think that is the moment my world stopped spinning for a while. Now we live with the fact that she could die at any minute and although anyone could die at anytime, it becomes more real, more aware when you see your child seize and know that there is not much you can do to stop them. So we live everyday with the knowledge that life can be taken just as fast as it is given and we celebrate it everyday.

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