Today's neurologist appointment & other "jerky" events
June 11, 2014
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June 11, 2014
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So because of Kyle’s seizure clusters at school yesterday & today (read my previous blog post for more info) we went to the neurologist appointment at 2:15pm. This is a well regarded NYC neurologist that we saw last year to get a second opinion before we decided to get the VNS surgery.
We are thinking of him being our regular neurologist.
And just as I expected before we do anything he wants Kyle to go in for a new 24-48 hour EEG at the hospital that he is affiliated with.
But within 10 minutes of being in his office our morning that felt like such an emergency started to feel like “ok, well let’s do this & that & then try this”
Kyle will go in for a 24-48 hour EEG on June 23rd in a hospital in Manhattan (unless they have a cancellation or a no-show…then we are on the standby list).
After the EEG we’ll decide what kind of seizures he’s having and adjust meds accordingly or try new ones.
Really the scariest part about all this (at least for me & the wife) is the fact that we’ll be leaving the great children’s hospital where we’ve done all his eegs the last 2 years and where we feel so comfortable and where they get Kyle and instead we’ll be going to an older smaller hospital in manhattan with all the hustle and bustle that comes along with that.
Will they know how to glue the EEG leads on the head of our 90 pound scrappy kid? At the other place they knew how to handle him. The neurologist said we’ll be fine at the new place.
But that’s the big unknown. In the past getting the eeg leads on was the hardest part. It’s absolute torture for the king. The smell of the glue. The sound of the machine. A strange person gluing 20-30 wires to his scalp. Once we get them on the rest of the 24-48 hours, while definitely not a picnic by any means, have gone ok.
So as long as we can get the leads on his head without anyone getting slapped by Kyle and without Kyle popping blood vessels from crying so hard (it happened once) we should be ok.
But for now we are in a complete holding pattern until the EEG. So he goes back to school and we roll the dice and hope for less seizures.
And so how was Kyle for the rest of the day?
Well at the doctors office he was a jerk, lots of hitting between watching his iPad.
We brought my wife’s sis with us as backup and she took the brunt of the hitting.
After the appointment we came home and he was fine. Totally his usual jerky self. Watching tv while bouncing on his ball while holding his breath while eating potato chips while playing with his saliva.
After being home for a few hours the wife said let’s go to the supermarket.
There’s this big, kid friendly supermarket that Kyle sometimes likes when he’s in a mood where he likes it…if that makes any sense.
I thought she was crazy to want to go food shopping after the day we had, but before I could object she was like “c’mon he’ll be awake for another couple of hours. we need milk and his waffles. and maybe he’ll like it and if not you guys can wait in the car and ill race thru the store.”
So we all put on our shoes and headed out.
And he kinda LOVED it! He had a real nice time there between some hitting. He had an ice cream cone and pushed all the buttons on the animatronic singing characters placed throughout the store.
And after we finished shopping they have actual real farm animals outside the store so we went to check them out but instead of enjoying seeing the real live animals my son instead fell in love with one of the ugliest animatronic displays
He even bopped to the music a little.
On the way home he was back to being jerky. Hitting me in the passengers seat and purposefully spilling his bottle of water on the floor.
But jerkiness is better than sleeping and seizures, right?
Anyway it’s now 8:21pm and he’s asleep on the couch next to the wife.
And tomorrow we pick ourselves up and go back to our normal routine and hope for the best.
That’s all I got. I figured I wrote a post about the first half of our day and that first half was a bit scary. So I figured I’d give you the 2nd half of our day to show that when he’s not having his small seizures everything is still “normal” around here.
The king is still his jerky self.
Anyway that’s it. Time for wifey & I to watch Episode 7 of “Orange is the New Black” Season 2.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).