Tag - EEG

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I Like My EEGS Sunnyside Up
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EEG Results Are In
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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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Seizure Salad

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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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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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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