Category - seizures

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International Epilepsy Awareness Day
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Seizures and Todd’s Paralysis
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Warning: This Post May Put You To Sleep….
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A Peek Inside Her Head
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EEGee

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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Warning: This Post May Put You To Sleep….

Twenty-twenty-twenty four hours to go I wanna be sedated.   Nothin’ to do and no where to go-o-oh I wanna be sedated…   To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky.  In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

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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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EEGee

  With a relatively sleepless night under our belts, we headed to today’s early morning EEG appointment. The nurses were appropriately impressed by the dark shadows the little patient was wearing under her eyes like a badge of honour.    Being sufficiently sleep deprived allowed the oral sedative called Chloral Hydrate to take effect quickly. Once fully asleep, the lab technician took head measurements to map crucial attachment points for the leads and started the test. The reading took about thirty minutes.   We watched as brainwaves traveled across the monitor. Some left a smooth, even trail, while some lines were wildly jagged. The sudden flickers made me wonder, “Was that a seizure or an innocent dream?” Maybe we were witnessing memories being relived or new skills being rehearsed before our eyes?   When Avery woke up she offered groggy hugs to mummy and daddy and a raspy “Bank you” to the nurse. We’re home now cuddled in bed watching Dora and getting ready for a well deserved nap. The neurologist will read the results and give us a call.

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