Yes, Soren is scheduled for an EEG tomorrow. His last EEG was in November. It showed some positive and negatives. The positive was that he no longer had hypsarythmia, the tell-tale indicator for Infantile Spasms. Now, this either means that Soren's meds (the Lamictal and Zonegran at that time) had stifled the hypsarythmia. Or he had outgrown the Infantile Spasms, which, indicative in the name, can happen. The problem then is that, if the seizures are not under control, the child just segues into another form of seizure disorder.
The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.
Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.
So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.
Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.
BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.
And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.
But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."
And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.
All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.
Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.
Amy
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