The
last time R had an EEG, we were still able to go to Children’s Hospital.
There is quite a difference between going to Children’s Hospital
and going to a “regular” hospital. There are no TV’s, no DVD’s and mostly…
no Lovely Leanna.
For
the first time ever though, R was inquisitive
about this appointment.
R: Where we are going?
Me:
We are going to a different hospital.
R: What is it called?
Me:
Vancouver Hospital.
R: What it is on? (no
that’s not a typo)
Me:
12th Avenue.
R: Who’s the doctor’s name?
Me: Ummmm…I don’t know. It will be someone
different.
R
never, EVER used to ask questions. ANY questions. So…WOW! And as always I
handled it in my usual seasoned autism
mom manner…by avoiding any further interactions. I was, after all,
driving.
As
luck would have it…traffic was CRAZY!!! What would normally take 25-30 min took
almost an hour. Yes…we were late. I was very apologetic. They were so gracious I wished I
had flowers, chocolates, coffees or all three in hand. We went right in.
Riley
immediately asked for the Winnie the Pooh and Piglet too DVD (from his previous
2 visits to Children’s Hospital) while looking around for the TV. I knew there would be no TV or DVD's and being the seasoned autism mom, remembered to bring
along R’s iPad to distract him. See. I’m learning.
The
doctor came in and was getting organized.
Dr: Have you ever had an EEG Riley?
R: Yes Peter.
Me:
*noticed ‘Peter’ had a name tag on - pretty
sure Peter has rarely been referred to by his name before.*
Dr: *double
take then smiles*
A
few more questions and the fun began.
The
technician was not wearing a visible name tag so “we” didn’t get her name. She was very nice but no Lovely Leanna so
let’s just go with Nice Nancy.
Nice
Nancy began to mark R’s head while he played Word Search on his iPad. He
grimaced a bit…not so much from pain but more from the idea of someone touching
his head.
Then
came the wires. This time they used a paste to attach them as opposed to glue
which was much quicker and ummm…easier.
Finally done...
Nice Nancy asked if I thought R could do a couple of “tests” (deep breathing and a flashing light). I said we could try.
He looks "happy" doesn't he. Don't be fooled. He was not. |
Nice Nancy asked if I thought R could do a couple of “tests” (deep breathing and a flashing light). I said we could try.
Now
the last 2 times, we had to do a “sleep-deprived” EEG. As an “adult”…this was
not requested. Lucky for us, R usually gets up between 3:30-5am soooo I was pretty
sure he would fall asleep.
Nice
Nancy instructed Riley to close his eyes and to try to relax. R closed his eyes
and well…ummm…relaxed. Did I mention that R’s “stims/tics” get exasperated when he
is under stress?? Yea. That.
Then
Nice Nancy asked Riley to take some deep breaths. We both modelled for him. He
copied. Sort of. He breathed in and out so ummmm…deeply that the likelihood of
him hyperventilating within 6 breaths was enough that Nice Nancy had him stop.
We
did not try the flashing light.
Nice
Nancy was most patient and kind. She gently asked him…“Riley can you relax your
face?" followed by "Try to keep your head still?"...then "Try not to move your eyes.” So, so patient.
That
is until R decided he did not want to relax his face or keep his head still or
not move his eyes.
At this point he banged both his fists into the bed with enough force to make the bed shake.
At this point he banged both his fists into the bed with enough force to make the bed shake.
Nice Nancy made no more requests of Riley.
A
little later Nice Nancy whispered to me if I might be able to get him to lessen
his facial movements. I explained they were tics and the more stressed he is
the more apparent they become. Nice Nancy nodded and we carried on.
About
2/3 of the way through R finally fell asleep. For about 3 minutes. Then we were
done.
Thankfully
he was a little groggy and Nice Nancy was quick to remove the wires and start
to wipe his head down with some water.
R: HEY…YOU’RE
GETTING ME WET!!
NN: I’m sorry Riley. I’m just trying to get the
paste out of your hair.
R: That’s ok.
STOP GETTING ME WET!!! *brushing
off his clothes*
Me: You’re ok. It’s just a little water. (Pretty sure only a drop or two landed on his
shirt)
R: This is SO STUPID! *still brushing off his clothes*
And
with that…we were done and off to collect on R’s incentive.
Two bowls of plain udon with a Sprite with no ice. A small price to pay indeed. Results to come.
Ah, the old sleep-deprived EEG. Nigel had one about 6 years ago that yielded no discernible results except the same types of comments and agitation that R had. So the next time we did the 24-hour ambulatory EEG. He actually did really well with that - liked to pretend the box device strapped to his waist was a proton pack from Ghostbusters. We've (he's) done it twice since then. No decrease in seizure activity *sigh* but his meds do a good job of controlling the seizures. Sending positive thoughts that R's results are good!
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