Quinn had her 24hour ambulatory EEG yesterday. They’ve never had anyone that young before and was almost not going to do it. Usually kids that young would have to be hospitalized. Since I wasn’t comfortable staying in a hotel for a routine reading, ambulatory it was!
I wasn’t thinking I would blog about it so I didn’t think to take more photos. We were in the middle of buying a home so my mind has been very occupied.
What is an EEG?
My basic explanation is this: an electroencephalogram (EEG) a test where they glue electrodes to your scalp to measure your brain wave activity. This is the only way to know whether you are having a seizure or not when you have these absence seizures or petit mal seizures. So for every eye flicker or head bobs Quinn has–we can only speculate that it’s the result of a seizure. We do not know for certain unless she’s hooked into this apparatus while experiencing those eye flickers.
Her first EEG in March 2016 was what officially diagnosed her with epilepsy.
- Took about 2.5 hours (1.25 hrs to put on; 45 mins to run tests and make sure device is reading).
- Bring iPad, snacks
- She had about 24 (?) Electrode wires (adults and kids after a certain age have the same number).
- Get a small backpack with chest strap
While she is strapped into this, we need to do everything we can to trigger a seizure so the doctors can see what her seizures are like. All the wires run into a unit that collects the reading. There’s a button on the unit that we have to push when we detect or suspect a seizure, as well as a paper log where we write the time. This is for when they analyze the reading, they can take extra care during those button presses.
Taking off the leads is very quick but annoying.
- Took about 30 mins
- Take EKG pads on body/back last!!!
- Massage extra baby oil into the scalp later in the bath. Then scrub, scrub, scrub
For this particular visit at Yale, Quinn cried the whole time like she was being violated. 😫 The tech wasn’t very nice and ripped her chest stickers off first, which set the mood for the rest of the visit.
You can have really good techs and you can have nasty techs. I haven’t figured out how to tell the difference. If you know a tip, let me know.
Quinn’s EEG results were: no seizures but they do detect abnormal activity. The analogy they gave me was “it’s cloudy out”. So there were no thunderstorms (seizures) coming that they can see but anything can happen.