It's no stretch to say Dahlia has gone through more testing than the average kid, even adult: Numerous blood draws, an MRI, metabolic analysis, X rays on her hips and legs for the low tone, multiple hearing and vision tests, not to mention the evaluations for therapy. It's like her whole first two years of life was one big test, with a big Fail on many of them. It was brutal. Thankfully, with strength, time and this diagnosis, we don't look at it that way anymore, as big red Fails.
This post is about her EEG, and how that by far was the hardest test in this journey.
She only had a one hour EEG. Many BPAN parents warned me it was going to be awful, and they were right, as usual :)
She hated the weird cream and glue all over her head, didn't tolerate the wires and cap, and screamed and cried through the whole ordeal. She never calmed down, never fell asleep (it's got to be a joke they expect a toddler to fall asleep during this), and she fought it and us every moment.
There are many worse procedures and tests out there, and it wasn't this big dramatic tragic ordeal, but it did suck, and feel pointless and primitive; tons of wires on this kid's head, weird gobs of lotion on each spot including her face, and the only direction was to please have your kid stay still for this, and try to make them fall asleep. We'll turn the lights off, there you go, should be a cinch. Sure, Jan.
Dahl didn't cooperate, ripped off tons of wires, and dry heaved and sobbed like I'd never seen the entire hour. Have you ever had to forcibly hold down your sobbing toddler for an hour straight? 60 minutes of the Big Little Lies finale goes by in a flash, but 60 minutes of this crap? It felt like forever. But we're tough and this is for good reason, blah blah, onward and upward.
The feedback we received a week later was that she has slow brain activity, not surprising to doctors given the delays and BPAN, but still hard for me to hear. But the good news was they didn't see any seizure activity. We were expecting to hear the worst like always these days, after all most BPAN kids have seizures, so we were pleasantly surprised.
Still...she could still have seizures and we missed them, or she'll develop them in the future. But for now we'll take this bit of sunshine and move on. We have some living to do.
To live will be an awfully big adventure. – Peter Pan