Tag - childhood epilepsy

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Purple Day—Our Epilepsy Story
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Epilepsy
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I Like My EEGS Sunnyside Up
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EEG Results Are In
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How Confronting My Child’s Doctor Brought Me Peace

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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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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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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EEG Results Are In

To the untrained eye, these wavy lines are a series of peaks and valleys forming scribbles across a page. It seems incredible to me that anyone can decipher their meaning. A neurologist can examine these lines and see inside my child’s brain — she’s breathing, she’s dreaming, she’s learning, she’s remembering; the lines tell a story. Every thought, every action, every emotion is recorded and preserved within these lines. To the casual observer these lines are a curiosity. To somebody with Epilepsy, these lines are a gauge. A disruption in the electrical current may reveal seizures lying in wait. Our daughter was diagnosed with Epilepsy at the age of three. Her initial seizures were fierce and long lasting. Luckily three years later, seizures are being managed effectively with medication. They are so well controlled that our neurologist suggested she may have outgrown the disorder. What a wonderful thought. An EEG would help determine if this was indeed the case. We were excited and waited anxiously for the results. Recently I witnessed a child having a seizure. Not my child, but I saw my daughter’s reflection in this child’s face. My heart breaks for this girl’s family who must endure seizure[…]

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How Confronting My Child’s Doctor Brought Me Peace

Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them? That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority. Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop. I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly[…]

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