The EEG "Adult" Experience

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: 12^th 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...

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. 

Then it was time to dim the lights.  

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.

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. 

The EEG Experience

Imagine my relief when out through the doors walked a familiar face…the same technician we had 3 years ago when Riley had the ambulatory EEG done. She was wonderful back then and even wonderfuller (yes I know that’s not a real word) now.

She remembered us. Now this could be taken as a good sign or…not?!? I am going to go with the positive. Humour me. She remembered that Riley liked Winnie the Pooh DVDs the last time we were there. (Yes I know it too was in R’s file…she is still wonderful in my books!)  She had 2 DVDs on the counter ready to go. Being well versed in social etiquette R responded with a “No thanks. I don’t like that.” At least he’s polite. *sigh*  Off she took him to pick out something else. Did I mention how wonderful she was? 

When we finally got settled the technician began to ask the usual routine questions. She started with Riley. “How old are you Riley?”  “I’m 18 years old Leanna.” Wait. What? Who is he talking about?  

She continues. “What grade are you in?” Meanwhile I am frantically looking at her to see how she reacts to being called Leanna. “I’m in grade 12 Leanna (again with emphasis on the name).” That’s when I notice the nametag.

I am not sure how long it had been at that point. Maybe 5 minutes. Possibly 10. Probably somewhere in between. Regardless of how long, for all that time I spent talking with her; looking at her; I was too stressed to notice she was wearing a nametag. Riley noticed. What I am able to “filter” out when I am stressed, Riley takes in. This part (sensory processing) of Riley World is a part that can make it difficult for him to be able to cope at times.

Here is an example of how I can only assume it might feel to be in sensory overload. I remember a memory game I used to play. A tray with a number of items would be brought out. You would look at the tray for a set amount of time then the tray would be taken away. You would then have to try and remember as many items as you could. I feel my shoulders reaching for my ears thinking about it. Now imagine playing that game in a dark, dingy basement with poor lighting; there may be a slightly unpleasant odour in the air; rap music (ugh) playing loudly in the background; oh and just for added fun...you need to remember at least 90% of the items. How are your shoulders feeling now???  A little stressed???  This feeling?  I can only imagine to some degree is how it is in Riley World every. single. moment of every. day. I digress. Back to the EEG.

Lovely Leanna. I heart professionals like Leanna. She started by making marks on Riley’s head.  

“Ouch! That hurts!” Lovely Leanna would apologize. R would immediately reply in his sweet voice “That’s OK Leanna.” followed by “Shut up you stupid pencil!”  Replace 'pencil' with other objects in the room. Rewind and repeat multiple times.

Next came attaching the wires.

“Hey! You’re hurting me!” Lovely Leanna would apologize. “Oh it’s OK Leanna.” “Shut up you stupid glue!”  Again…replace, rewind and repeat.

Once again we have come to a new fork in the road. At 18 when Riley is stressed he does not want to be comforted by me holding his hand any more.  He does not want me to cuddle with him any more.  He does not want me to lie down with him any more.  Yes this is a good thing in so many ways (he is, after all, 'physically' a young man) yet I am struggling with how to try and make him feel better? I tried to redirect his attention to the video store and McDonalds (his choice of incentives picked beforehand). When this stopped working I tried saying nothing. I sat beside the bed with my hand on top of the blanket over his hand. It is always a crap shoot with chances of hitting the "meltdown button" getting higher and higher as time goes on. Thankfully we were almost done.

“I’m tired.”  Lovely Leanna would say “I know you’re tired. You can go to sleep in a few minutes.” R came back with “NO! I’m NOT tired anymore.”  Oi-vay.

A few tests to make sure everything was working then it was time to dim the lights and hope that R would fall asleep.

“Shut up you stupid!  That’s stupid!  I don’t want to go to sleep anymore.  This is stupid!”  Again...rewind and repeat. 

In the end Riley did fall asleep. He was more than happy to have everything taken off and head to the video store and McDonald's for a job well done! A small price to pay for a stressful afternoon. I, on the other hand, had a nap and an adult beverage or two when we got home. Results due tomorrow. 

Going for an EEG (the Sequel)

Did you know about 1 in 4 autistic individuals may begin to have seizures during puberty? Riley was almost 15 when he was diagnosed as having Complex Partial seizures. He has been on medication since diagnosis and has been seizure free to date.

This Wednesday at 1:00pm Riley will be going in for another diagnostic EEG to see if he is still having seizures as we have noticed some behaviours lately that are similar to previous symptoms. An EEG is the only way to monitor seizure activity before making any adjustments to his medication. 

The first time Riley had a diagnostic EEG it was inconclusive so a 24 hour ambulatory EEG was required (an entire blog post in itself which I will save for another time). In preparation for the EEG, it is best if Riley is sleep deprived as they would prefer it if he falls asleep during the test (something that did NOT happen the last time). This means keeping him up until midnight on Tuesday night and waking him up at 5am. Since his appointment is not until after lunch that means he can go to school in the morning. Lucky them. I have my reasons. No need to judge too harshly here.

We are 2 days away from the test. Time to let Riley know this is going to happen. How do I go about preparing R you might be wondering? Well since this is not his first time; R is 3-1/2 years older and much more cooperative than when he was younger, I am going to start at the most logical point. I go to his visual schedule and add “Lunch at Home” on Wednesday. Yup you read that right. Seeing Lunch at Home on a school day is THE best thing EVER in Riley World. I later added doctor and hospital to his schedule and had a brief chat about it with R who, by the way, was more interested in adding McDonald’s after the hospital to his schedule.

So for tonight we are done talking. The hospital has a great on-line photo book explaining the procedure that I will go over with Riley tomorrow.

I will be sure to let you know how it all goes.  Wish us luck!