Tag - seizures

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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?
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Better
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How Confronting My Child’s Doctor Brought Me Peace

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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Better

My god I’m a useless sack of skin when I’ve had no sleep. Honestly. My brain don’t work so good. If I were smart, which I’m not, I’d go to bed instead of writing this. The thing is, I’m on “full alert” right now. Avery had two small seizures on Saturday and since she has a cold and is feeling unwell, I’m afraid that a “big one” is brewing. So I watch, with toothpicks propping open my lids. Last night, after going to bed at a sensible 12 am (see, told you I was dumb) Avery woke up at 2:45 am. And not just roused, but was UP and ready to rock, going full tilt until nearly 5 am. Being woken from sleep and forced to stay awake when your body is begging for rest is nothing short of torture. So today was a hazy blur. I went through the motions and managed to run some errands, get groceries and make new recipe for dinner. All pretty impressive considering my eyes were shut the entire time. When DS asked what was for dessert, I responded “Listen. Give me a minute. I’m doing my best okay?” To which he replied honestly[…]

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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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