EEG Take Two

Tomorrow morning,  Elliott will be taken to Akron Children’s Hospital for his second EEG in four or five years.

When Elliott was about 18 months old,  he had seizure-like episodes.  He would be walking and all of a sudden,  he would freeze and fall over.  It was like tipping a statue over because he made no attempts to catch himself.

This pretty much freaked us out because this happened quite a few times.

We would always get him in to seen but they never found anything.  He had an EEG but again,  they never found anything.  He eventually seemed to outgrow these seizure-like episodes.

Over the past few months,  Elliott has been complaining about shaking.  This occurs mostly at night and wakes him out of a dead sleep.  He says after he wakes up he feels like he’s falling.  This is so distressing to him that he will not go back to sleep.

Honestly,  we never really thought anything of it because we were so buried by what seemed like more pressing matters. Gavin is experiencing neurological degeneration has no immune system.  This is all relatively knew symptoms in the last 12 months or so. 

Emmett has been battling with this PFAPA or fever disorder.

Elliott’s symptoms seemed insignificant by comparison.  I don’t mean that Elliott was any less important,  it’s just more like triage.  We have so many challenges that we often have to triage. 

I was trained to triage as a paramedic.  Anytime you have multiple people that need help or are injured,  you have to prioritize them by severity and chances of actually surviving. Not that this is the exact same thing but the principle is very similar.

Anyway,  Elliott was being more and more persistent about this shaking.  His anxiety was already through the roof and this just added more to his plate.  We took him back to the pediatricians office and we were referred to neurology at Akron Children’s Hospital. 

That brings us current,  I think. 

We go in the morning,  knowing full well that Elliott is not going to make this easy.  He is extremely nervous and actually,  that’s why we moved his birthday and celebrated its on Friday instead of his actual birthday,  which is today.  He was freaking out because he didn’t want to have an EEG the day after his birthday,  so that’s why we moved it.

He’s already an emotional wreck and knowing that the EEG is in the morning is just fueling the fire.

What a way to start the week….

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kathy

Was he ever a breath holder? Even if you only saw it once or twice? My 6yo used to faint during the most bizarre times; once he was riding his tricycle and just tipped over. Neuro said it was similar to the people that faint when they see blood; something scared him and his body would react by fainting.

Silachan

http://en.wikipedia.org/wiki/Hypnic_jerk

Sound like this at all? I've had a few of these and they are quite scary, they make your heart race and wake you right up.

Stephlton

I'm sorry to read that he is dealing with that. Is he actually shaking or does he just get the sensation that he is shaking? Sometimes when I fall asleep it feels like the world starts shaking and I will abruptly freak out and jerk myself awake. I have had that sensation on occasion since i was a kid and i know a few other people who also get it. It is kind of like…a falling-shaking sensation. Pretty weird stuff.

Lost_and_Tired

That sounds very close to what he is experiencing. It really has him freaked out. 🙁

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