Last week Dar had an electroencephalography, also known as an EEG, which is a diagnostic test. The whole thing was a waking nightmare that was supposed to be a sleeping nightmare, but with a guardedly happy ending. Let me explain.
To recap, Dar has been stimming with a sort of Stevie Wonder-motion, closing his eyes, slightly shaking his head, and arresting his fingers raised in front of him. Several times in January, the school noted him doing this stim more than 100 times in a day. We arranged to see a specialist; all the specialists have three-month waiting lists. Wifey is a hero, so she kept calling until we heard about a cancellation, which got us into see a doctor in February. By then, Dar was Stevie Wondering less. Luckily, he did it during the appointment, and the doctor told us that he was 98% sure that it wasn’t a seizure. Nonetheless he had us schedule an EEG to be sure.
Several times, Children’s Hospital Oakland called us to review the pre-EEG protocol. Eating protocol. Bathing protocol. Mostly, sleeping protocol. They wanted Dar to go to sleep at midnight the night before and be up at 5 a.m. the next morning, with no naps. Wifey and I agreed to split these duties, with her staying up the night before and me getting up before the crack of dawn. How single parents or divorced parents manage this kind of shit, I have no idea.
As a general rule, I guess you try to avoid your kid having an EEG.
Although our appointment was at 10:00, and that meant I could have put Dar in school for more than an hour, I decided to give the school (and not me) a break. Dar would have been too cranky to work, anyway. And it took me forever to park, so we wound up only ten minutes early, anyway.
When we arrived at the hospital, Dar immediately sensed that he hated the place. Like a dog near a pound. Dar doesn’t always do this, but he isn’t always working on five hours of sleep, either. Waiting to check in, Dar kept trying to leave the room. Finally checked in, Dar grabbed my hand and dragged me to the hospital entrance. I tried to laugh. No, Dar, we’re staying here. Now I dragged him back to the waiting room. How the hell I’m going to do this when he’s as strong as me, I have no idea. At eight years old he was within two years of the age of the other five or six kids patiently waiting in the neuropsych waiting room. Notice I said “patiently.” You know how sometimes you’re at a restaurant or likewise and you think, whew, at least I’m not the parent of that child?
I was the parent of that child.
After what felt like forever, the tech called us in. The lady was from Peru. I told her where I’d been in Peru two years ago. We chatted in Spanish. We went into a small room with the machine. She put a bunch of wires, connected to little paper tabs, on Dar’s head. This really isn’t any more invasive than putting 22 small post-its on your head, but try telling that to Dar. Well, I did, but who knows what he heard.
Dar doesn’t even like a hat on his head. In this case, his mild cerebral palsy was working for us, since I didn’t really have to block his left hand. His right hand and I became very close. Tight, you might say.
Dar screamed and fussed. And then, eventually, it got…worse. My new Peruvian friend asked me to lay him down. I did. She asked me to hold him down. I did. Nothing I hadn’t done at the dentist. Homegirl kept checking the machine to see if all 22 of her wires were really connected. One would fall off, then she’d fix it, then another would fall. Dar was screaming like you’d scream if Frances McDormand grabbed your dentist drill and broke open the hard part of your thumbnail. I held………him………down.
Then Ms. Peru pointed to a camera that was capturing all this. Mmmm, great. Not sure I need EEG day to be my next viral video starring me and one of my kids.
Then she wrapped up his head like the Mummy. Wires fell, got readjusted. One of the 22 wires was lost, she decided 21 would have to do. Head wrap complete. Ahhhhhh.
Now: only forty minutes to go!
The hope was that Dar would fall asleep. That was the reason for the protocol. That way we could entirely rule out seizures.
Well, he didn’t fall asleep. Nor did he do the stim while there. Sigh.
He did manage to last for the entire forty minutes. That was a relief. It kinda took forever to get the wires out of his hair, but it happened. I got Dar to school around noon.
The next day I got a call from my doctor’s office, saying that they received the EEG and that everything looked healthy, but Dar hadn’t slept. I have a consult scheduled with the doctor in a few weeks. At that time he may say that we need to do an overnight with Dar to absolutely eliminate the possibility of seizures.
This is not a cheery possibility. Especially when one considers that even when Dar was Stevie Wondering 100-plus times a day, he always responded to his name (people having seizures rarely do this). And now he rarely Stevie Wonders, maybe less than 30 times a day.
It’s a stim, right? Gotta be a stim.
Doctor is at least 98% sure.
Wifey and I have decided we can live with that.