Category - seizures

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Epilepsy
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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
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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
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Brain Waving
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Sleep Studies Are Tiring!

Epilepsy

Sometimes I forget our daughter has Epilepsy. But only for a second. We’re incredibly lucky her seizures are suppressed by medications, but it’s impossible to forget the traumatic years when they were not.  Avery’s first major seizure happened when she was three and a half. I shared the story of what happened in every painful detail. I’m sharing the link again HERE. Even after all this time, I find it difficult to read. Even though it was nearly eight years ago now, those seizures just before Avery turned five were brutal.  Every year since she has an EEG to assess the seizure activity in her brain. And every year while we wait for the results we hope for the news that there is no seizure activity or that the electrical abnormalities remain unchanged, in equal measure.  It may sound odd to hope for no improvement, but if her brain activity appears normal the neurologist will take her off anticonvulsants. And this could mean more horrifying seizures.  When neurons discharge inappropriately they cause abnormal electrical impulses in the brain. This results in seizure activity which can lead to abnormal motor activity or convulsions, and loss of consciousness, and if not controlled as soon[…]

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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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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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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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Sleep Studies Are Tiring!

Our daughter had a sleep study last week in hopes of getting to the bottom of why she has such a difficult time staying asleep. When we arrived at the Sleep Lab, Avery was happy to be there. I suppose there’s a certain air of excitement—new environment, friendly faces, lots of attention, rubber gloves. She was rigged with wires glued to her head and bands strapped around her tiny chest. And after some cuddle time and several rounds of ad-libbed lullabies sung horribly wrong by yours truly, she went to sleep like the little trooper she is.  She was in a narrow bed, HIGH up off the hard floor and I told the technician I was concerned about her waking in the night and bolting as I slept unaware in my bed, aka petrified log with a whisper of a blanket and imagining of a pillow. Jeremy the tech guy told me “to relax” (Oh now I love it when people say that) and that they’ve never had any problems. He’d be watching on the monitor though just in case. Flash forward to 12:10 a.m…. Hellooooo bolter! The next two hours were your basic gong show. Avery wanted out of that bed and[…]

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