Category - seizures

1
Brain Waving
2
Sleep Studies Are Tiring!
3
A Bittersweet Anniversary and Post Traumatic Stress

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[…]

Read More

Sleep Studies Are Tiring!

Our daughter had a sleep study last week in hopes of getting to the bottom of why she has such a difficult time staying asleep. When we arrived at the Sleep Lab, Avery was happy to be there. I suppose there’s a certain air of excitement—new environment, friendly faces, lots of attention, rubber gloves. She was rigged with wires glued to her head and bands strapped around her tiny chest. And after some cuddle time and several rounds of ad-libbed lullabies sung horribly wrong by yours truly, she went to sleep like the little trooper she is.  She was in a narrow bed, HIGH up off the hard floor and I told the technician I was concerned about her waking in the night and bolting as I slept unaware in my bed, aka petrified log with a whisper of a blanket and imagining of a pillow. Jeremy the tech guy told me “to relax” (Oh now I love it when people say that) and that they’ve never had any problems. He’d be watching on the monitor though just in case. Flash forward to 12:10 a.m…. Hellooooo bolter! The next two hours were your basic gong show. Avery wanted out of that bed and[…]

Read More

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[…]

Read More

All images and text are copyright © 2019 Forever In Mom Genes