EEGs, iPads, and Surprises

First off, David is doing well and responding to his first dose of the new med without side effects. Things have been going smooth on that front.

Yesterday David had a neurology consult. This visit was unrelated to the new medicine trial and was planned several months ago to take advantage of David's inpatient stay to do a nuero test called an EEG. This test looks at his brain function and observes seizure activity.

So this morning we rolled on do to the lab. The technician glued about 50 different leads to David's head and we sat back to watch. I was feeling very relieved, because David was laying there being twitchy. I wasn't sure whether it was a seizure or not, but I figured this was I'd know one way or the other. The EEG was longer than I remembered the first one being, and when we were done the technician checked a message that had come in during the test and told me she'd be leaving his leads on for a possible retest. Hmmmm. She wrapped his head like a mummy and sent us back to David's room. All I could think was that my mom-senses were right! He had been having low level seizures. And I'll admit I was happy they were caught on record, whatever the twitches were.

The floor nurses seemed surprised to see David's new 50 lead hairdo. (I took pictures, of course!). And next thing I knew, the neuro team was in the room. If you've ever been in the hospital waiting to see a doctor, you know how odd it is to have them actually show up right when you have questions for them!

So here's the scoop: David was not having "clinical seizures" but... To be continued after David's lunch.

I'm back. So, it wasn't seizures like I picture them, the outwardly visual kind, but they did see a lot of abnormal brain activity. In fact it was so much that the doctor described it as "scary". ( note to doctors: please do not use the word "scary" when talking about my child. May I suggest "alarming" or "concerning".). Anyway, I think it we this continuous, scary brain behavior that brought the team to David's bedside so quickly. So, there's that at least.

Long story short: David's been living with this static (my word) for months, likely. It's going on right now while he's babbling and watching Handy Manny. (thank you CMH for having cable!). With this scary brain activity, David is, and has been, at risk for a big old seizure any moment, so they are going to up his seizure meeds and try to beat back this scary brain activity. The neurologist did seem impressed with David's ability ton laugh and play through scary brain activity, though, and he canceled the repeat EEG. Though they haven' taken the leads off yet, so he's still got quite the interesting hairdo!

Finally, a note about the iPad. This has been the coolest thing ever, and not just because I played Moxie2 through an entire nap! We've used it to distract him through lots of lab work. I don't think he even knows he has a PICC line. I used it today to keep him calm through the lead placement. Awesome. That was 30 minutes of Elmo, Fireworks, sparkabilities, and monkeys jumping on the bed. And 30 minutes of no tears and screaming like the boy next door. Best purchase ever!