Tag - seizure disorder

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Epilepsy
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How Confronting My Child’s Doctor Brought Me Peace

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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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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