Last weekend was the long-awaited ambulatory EEG for the Bug. We’ve seen signs of possible absence seizures for a few months, though (of course) there’s been less lately since we finally got the EEG scheduled.
It was…. an experience. So here’s a few tips of what to do and what not to do if your toddler or young child is due for an Ambulatory EEG.
Restraints Are Your Friend
The Bug, who used to be a champion doctor’s appointment pro has turned into a squealing ball of tantrum if he goes near a doctor’s office. He’d had an inpatient EEG once before which did NOT go that awesomely, so we knew he’d be tough this time.
Fortunately for us, but unfortunately for Graham, the hospital was armed with this giant papoose:
I know it looks awfully barbaric, but you have to keep his head still for a good half hour or more. You know that’s not going to happen with a 2-year-old.
Our tip to deal with the long wait while the tech is sticking all the ledes to their head: videos on your phone. The Bug is a particular fan of watching videos of himself. We made it through a good 6 months’ worth. You may want to bring a portable DVD player.
Enjoy Being the Parent of the Most Pitiful Looking Child on Earth
I was a little surprised no one asked us any questions all weekend. The nanny reported some stares, but with me I found people were overly nice. I was trying to think of some witty responses in my head, but didn’t have the heart for it.
I doubt people look at him all done up and think he’s just getting a pain-free outpatient treatment. He looked like he was on chemo or something, poor kid.
Do As Much In the Stroller As Humanly Possible
It turned out that the stroller was the only safe place. The pack the ledes are attached to fit nicely on the handles, the Bug was distracted enough not to mess with it, and we had him in easy reach if he tried to mess with his headgear.
Walking around the first day, he carried his little pack with him while he played.
This did not last long. It was light and he could wear it if he wanted to, but he found the idea of the backpack cumbersome and soon he’d be walking around with it dragging behind him.
So yeah, take a lot of walks. Or something.
Do Not Plan Any Activities
I recommend a padded room.
You can’t take the kid to a playground. You can’t take them swimming. The front yard might be okay, but there might be running involved.
We tried to keep it low-key, but how do you keep a 2-year-old low-key for 3 days??
TV… food… walks… and besides that I don’t have many options. Thus I suggest a padded room. With some toys.
Don’t Leave Them Alone. Ever
Every time we got Graham up from bed or a nap his headgear was a little looser. Mostly he was okay when I put the backpack in bed with him, I suspect most of the damage was done when he woke up.
I actually laid down to nap with him Saturday afternoon so that I could adjust the backpack and orient him appropriately. I probably should’ve done it every time he went down. Graham is a saint about going to bed. If your kid doesn’t like it much, expect this to be a major problem area. I also worried a little because the stocking going back to his backpack always got wrapped around his arms and neck and such.
The Kiss of Death: The Car Seat
It took that kid 5 minutes in the car to get 1/3 of his ledes off.
I might have noticed if I hadn’t been busy puking in the front seat.
Nevertheless, there wasn’t much I could’ve done. By the time you can stop, pull over, get out and try to fix it, most of the damage is already done.
At least keep another passenger with you and the kid at all times.
Get Contact Information
Because we were outpatient, there was nobody there for us to talk to on the weekend. I felt like a bit of a dope getting the Neuro resident paged, but she was very helpful. We did our best to keep the ledes on after she told us there was still a chance they could continue to get data.
I definitely recommend asking in advance what you should do if ledes fall off or if you child pulls them off. We weren’t quite prepared for how easily he was able to do it.
We got another 15 hours or so, until Sunday morning when he looked like this.
Goodbye stocking, goodbye bandages, goodbye ledes. Just a few sticky tape pieces left with their conductive goo.
All that effort and I’m not sure if he had any kind of episode in that 24 hour period. There was some weird stuff during his nap on Saturday, but it was hard to tell if it was more seizure or more weird sleep stuff.
I wish we could’ve had another day of data but I don’t know what else we could’ve done.
Except for the padded room.