Category - seizures

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Purple Day—Our Epilepsy Story
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Why This Mama Bird Ain’t Happy About Back-To-School
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I Like My EEGS Sunnyside Up
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International Epilepsy Awareness Day
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Seizures and Todd’s Paralysis

Purple Day—Our Epilepsy Story

When our daughter was eight months old she was diagnosed with a chromosome 3P deletion/duplication disorder. Doctors told us to expect some devastating things. Some came true, but thankfully most did not. The one thing they didn’t tell us to expect was seizures—those began when Avery turned three. We were caught completely by surprise.  One afternoon I put Avery down for her nap and when it seemed to last a little longer than usual, I went to check on her. When I stepped inside her room I knew something was wrong. There was vomit on her crib rails, she was blue, and she wasn’t breathing. I scooped her up, limp in my arms and called 911. I must’ve screamed because our son, who was six at the time, had come out from his room and was looking at me with the most fearful eyes.  I said, “Sebastian don’t be afraid, but in a few minutes some fireman are going to come through the door. They’ll help Avery.” I didn’t understand what was happening. I’d never seen her have a seizure. We didn’t know yet that she has epilepsy. I told our son to keep out of the way and that[…]

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Why This Mama Bird Ain’t Happy About Back-To-School

A friend posted a question on Facebook asking, “Are you happy or sad about your kids going back to school?” The majority of responses were something like, “It’s been fun but I want my routine back!”  My sad face emoticon response was in the minority. I am not excited about my kids heading back to school in the least.  That might make me sound all, “Oooooh, I’m such a wonderful mother. I enjoy every single second with my perfect children, crafting and baking wholesome snacks, and exploring nature on our many hikes and adventures. Hashtag…. #blessed” As if. The last thing I hiked up was my skirt at the waterpark.  Me lamenting my kids return to school doesn’t make me some kind of earnest earth mother who savours each second with her spawn. Of course I savour some seconds, but not all of them. Some seconds/minutes/hours are loud and clingy and annoying and totally cut into my highly coveted “me time.”  Admittedly, I’ve had it easy. My husband is a teacher, off for the summer. I always have an extra set of hands. I’d be singing a vastly different tune if I was home alone with my kids for sixty-eight days straight. […]

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I Like My EEGS Sunnyside Up

  We kept our daughter up for most of the night to deprive her of sleep, on purpose. Consider it payback for all the nights she’s kept us awake. In your face, Avery! Mwah hahaha…   Kidding. She was scheduled for an EEG the next morning.   Having her good and exhausted prevents her from having to be sedated (she fell asleep naturally on the exam table within seconds) and it ensures her brain will be disorganized and stressed—perfect conditions for performing an exam to look for the abnormal brain waves associated with seizure activity. The same test last year revealed ‘moderate abnormalities.’ This meant Avery would remain on medication—the seizures were still there, suppressed by the meds, but skulking in the shadows. This year we were hopeful that even if the result wasn’t completely normal, there would at least be some improvement, indicating that Avery is slowly but surely growing out of this condition. No such luck. The results were the same. ‘Moderately abnormal.’ We’ll try again in a year. There’s time, things could still change. And in the meantime we’re fortunate to have found the perfect balance of medications, with no side effects, to suppress the seizures. When[…]

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International Epilepsy Awareness Day

  March 26 is International Epilepsy Awareness Day and Gary Collins, the Executive Director of Epilepsy Canada, will dye his hair purple on that day to raise money for epilepsy research. Our daughter Avery is among the over 300,000 Canadians, including Mr. Collins, who have been diagnosed with epilepsy. Another 15,000 will be diagnosed this year. The seizure inducing condition is a neurological issue affecting the brain and is much more common than people realize. Epilepsy affects one in every 100 people worldwide. Thankfully, medication keeps Avery’s once life-threatening seizures under control. Unfortunately 30% of people live with seizures which are resistant to drug therapies. During March, Epilepsy Awareness month, people are being encouraged to donate to Epilepsy Canada’s research grants program. Since 1966, Epilepsy Canada has annually funded important epilepsy research projects at major Canadian hospitals and universities. Money raised by the Purple Hair 4 Epilepsy and other initiatives will contribute to keeping the funding program alive. Anyone who wishes to sponsor Gary or others who have pledged to colour their hair purple can do so online at www.purplehair4epilepsy.com.

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Seizures and Todd’s Paralysis

Our daughter had her first seizure the summer of 2009.  She stopped breathing and her heart raced out of control. There are times, even years later, that I stand in her room reliving that night, imagining all the what ifs in painful detail. What if the ambulance hadn’t made it in time? What if, what if, what if… After starting meds, the seizures continued, but lessened in severity. Each occurred during sleep. The neurologist believed the transition from one level of sleep into another was some sort of trigger. Then Avery had her first seizure while she was awake. It lasted a few minutes and stopped abruptly, leaving her left side limp, temporarily paralyzed. We thought she had possibly had a stroke. We later learned she had experienced Todd’s Paralysis — a focal weakness in part of the body, occurring after about 13% of seizures. It’s amazing how easy it is to mask your panic when you have another child to consider. Our son witnessed the seisure. “Oh no, oh no, oh no.” he repeated.  “She’s fine,” we told him in an absurdly casual tone. “We’re going to take her to the doctor just to be safe. There’s nothing to[…]

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