Tag - seizures

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Purple Day—Our Epilepsy Story
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Living With The Fear of SUDEP
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Epilepsy
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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
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A Bittersweet Anniversary and Post Traumatic Stress
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Flowers In The (playhouse) Attic?

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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Living With The Fear of SUDEP

SUDEP (sudden unexpected death in epilepsy) When a child in our community dies suddenly, the world closes in around us. Having to explain to our daughter that her ten-year-old friend died unexpectedly was hard. It’s tough enough to make sense of it as an adult. For a child, it’s incomprehensible. The sorrow we feel for this beautiful family goes beyond sympathy. We feel a level of empathy that only other epilepsy parents would know. When a child is lost to SUDEP all parents of children with epilepsy receive a jarring reminder that this can happen. No child is exempt.  We are devastated for the family. It hits close to home as we direct some of the shock inward by recalling our own children’s worst seizures. We relive the panic. We hear the ambulance sirens and repeat the silent prayers and promises to the almighty or whomever is listening to “Just please, please let her be okay.” When an otherwise healthy child dies without warning or explanation, it shakes us to the core. For me, post traumatic stress has brought up memories from our daughter’s first violent seizures at the age of three when we came very close to losing her. SUDEP—(sudden[…]

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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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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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A Bittersweet Anniversary and Post Traumatic Stress

  This story was originally published in 2010. Avery continues to do well on her anti-seizure meds and life is good. 🙂 It was an ordinary day. If you consider 40 degrees Celsius in May normal. Avery and I dropped big brother at school and went through our day like any other. It was exactly one year since her first seizure—a severe and nearly fatal episode. I never seen a war, but yet I have Soldiers Heart nonetheless. At least that’s what they used to call it. Today we know it as Post Traumatic Stress Disorder. PTSD usually develops as a result of a “terribly frightening, highly unsafe or life-threatening experience.” It doesn’t make a difference whose life was threatened – yours or the life of someone you love. People who experience post traumatic stress tend to avoid places, people, or things that remind them of the event. But what happens when you live WITH the person who reminds you of the trauma IN the place where it happened? I tell you what happens; you avoid thinking about that event, ever. If you find yourself feeling any emotions related to said event, you crack a joke, call a friend or[…]

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Flowers In The (playhouse) Attic?

  I love my brother. Not in a Flowers in the Attic sort of way, but a… Iamsoluckytohavesuchanamazingsibling kind of way. A few weeks ago my brother Michael and my niece and nephew came to stay with us during American spring break. I said it then and I’ll say it again, “BEST…VACATION…EVER” said oh so sarcastically. I am so sorry little bro. I truly wanted to show you a good time. Instead I ended up showing you the hectic hell that life in this house can sometimes be. Avery’s seizures started up again a few days after Mike and the kids got here and she had at least one every day while they were here. I was a bit of a wreck and took helicopter parenting to a new high. Also during their stay my dad was “packaged out” of his job (which turned out the be a GREAT thing. Early retirement couldn’t have happened to a more deserving guy. Love you dad), Mike got sick, my nephew sprained his ankle and I basically had a nervous breakdown. Goooooood times all around. So, they left for home a few days early. I can’t imagine why. I think I heard their tires screeching as[…]

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