Category - 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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Why This Mama Bird Ain’t Happy About Back-To-School
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I Like My EEGS Sunnyside Up

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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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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