Where to begin....
Almost 2 years ago, Justin had a seizure. A bad one. It was one of the single most scary things I've ever witnessed. (And I've seen this child with a fishing lure dangling from his eyeball)
My child didn't know who I was, didn't know his name, didn't know where his room was, and couldn't even figure out how to put on his own clothes. He vomited several times before going and getting under a pile of laundry. When I took him to the ER they ruled it a seizure, and after several tests... which he doesn't remember... we scheduled an EEG (electroencephalography).
We met with a neurologist that basically told us we get a freebie, but if it happens again... meds!
Well, he never passed out again. Thank God... cause that was terrifying! But he just progressively got ... how to say it... not right. The thing is... looking back is so 20/20 hindsight. It's been so gradual that I didn't notice right away. But when I realized that he couldn't figure stuff out anymore, I really thought he was just being a twit. Holding a conversation became SO one sided and single tracked it was irritating. There were times that he would do everything so slowly it was like he was either a zombie, or on dope. (he's not) But it really felt that way. Other times he's really cool. He cracks good jokes, he helps out around the house, he's in all other ways a pretty normal kid. Until he has an episode. He just... isn't there anymore. Doesn't get it.
Since we began Messiah Lutheran (awesome school, amazing teachers and staff) he's been so stressed out about being with kids his own age, tests, grades, not being home... that his weird behavior became serious. So I scheduled an appointment with a pediatrician.
Yeah.... umm... one doctor is not just as good as the next.
She basically said she thought he was still having seizures and referred us back to the initial neurologist (brain doc). I HATE when they do that! "I've got no clue.... you're google is as good as mine... go see someone else!"
And so we did.
He goes... "Well, two years ago, when he had the EEG there was a lot of seizure activity..."
STOP!!!!!!!!!!
What the hell did he just say?! This is the first I've heard of it AFTER TWO YEARS..... and don't worry, I was so pissed off I called my mom and screamed at her, and then I called Luke and screamed at him until my voice was hoarse.
No wonder we've been going freaking backwards!!!!!!
My child... the one that I didn't have to worry about. My child... the one that understood everything. My child.... the genius that was reading 4th grade books at age 6. My child.... has been fading away and no one could tell me why.
Someone referred me to Dr Patrice Whistler.
We had to book this appointment in way advance (clue #1)
When we arrived, we waited for 50 minutes to see the doctor (clue #2)
When she walked in.... I handed her a printed sheet of things that I'd been noticing about Justin for a while. She took it, asked to keep it, started writing notes all over it.... and as we talked she rummaged through her computer to find his EEG report (to which she read to me)... something I'd never heard. My stomach dropped when I heard it. It was like a punch to the gut when I heard the diagnosis "epilepsy" . This had been sitting in some back archive file for two years and I'd never heard this.
All I can think is... how long has his brain been re-routing and cross firing and playing Pearl Harbor and Beaches of Normandy? It's been WWII inside there for how long?
Dr. Whistler was so awesome... she laid out a huge plan and a series of test, new sleep EEG, psych education, PTOT assessment, labs and a pediatric neurologist referral .... the works.
It finally feels good to be heading in the right direction with someone who KNOWS what they're doing.
