Tag - seizures

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International Epilepsy Awareness Day
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Seizures and Todd’s Paralysis
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A Peek Inside Her Head
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Seizure Salad
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Brain Waving

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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A Peek Inside Her Head

  Have you ever looked at your child and asked, “What is going inside that head of yours?” Apparently there’s a way to find out. Just hook up them to tangle of rainbow coloured wires and take a gander at their brain waves… Avery has been having seizures since she was three years old. This is attributed in some way to her genetic disorder. Luckily for us, we have found the perfect balance of medications and outside of a few minor absence seizures, she has been seizure free for nearly two years. She was tested a few years ago and the results showed “moderate seizure activity” despite having relatively few physical symptoms. So now it’s time again; the neurologist scheduled another peek via EEG. If no seizure activity is present, he will wean her off the anti seizure meds. This is both thrilling and terrifying… “But, what if her seizures come back?!” I protested. “She’s fine on the meds. Can’t we just wait a little longer?” “We need to give her a chance,” he told me. “You don’t keep someone on medication if they don’t need it.” He’s right. I may not like it, but this is what happens now.[…]

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Seizure Salad

Our daughter has Epilepsy. The onset was sudden (at the age of three) and the year it took to bring her life threatening seizures under control was brutal. Now secure in the knowledge the medication is doing its job to keep the big seizures at bay, we’re able to breathe. I can even leave Avery for the night without suffering a panic attack at the theatre, spending the second act with my head between my knees. Today, we got the latest results of her recent EEG.They were abnormal and showed moderate seizure activity in her beautiful brain. *Our neurologist says lots of children out grow seizure disorders. I had myself convinced this would apply to Avery. I imagined the doctor shaking his head in amazement saying, “Wow. How wonderful. Generally Epilepsy doesn’t resolve this quickly.” He didn’t say any such thing. Despite this disheartening news, there’s still a good chance she will grow out of this. God, I hope she does. I also hope the medication will continue to provide a barrier between us and those frightening seizures. They were seriously alarming. We will just have to wait and see what happens. I hate that. Isn’t there a cosmic cheat[…]

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Brain Waving

Our beautiful daughter has Epilepsy. I refused to believe it at first, but couldn’t dispute that the squiggly lines on the electroencephalography monitor were indicative of a life threatening seizure disorder. After a year of tweaking her meds, we were thankfully able to control her seizures and Avery has been footloose and (nearly) seizure free for over a year now. Though she still has the occasional absence seizure, the BIG ONES seems to be a distant memory.   So as pediatric neurology dictates, Avery goes into hospital as an outpatient for an EEG to get a look at what’s going on in her little blonde head.   Patients must remain still and be completely relaxed for this test. Um, this patient is five and a little monkey; hence the fact that she will need to be sedated. Can they sedate me too ’cause every time she goes under I want to barf. If you ask me, there’s nothing “general” about general anesthesia. There are risks and the possibility of very real complications…especially with a medically complicated child like ours.    Alas, in order to get a proper reading she needs to be asleep. She also needs to be sleep deprived[…]

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