Yesterday's appointment was pretty much heart shattering.
It felt a lot like Dr. Boston was throwing in the Trevor towel. Although I'm sure he'd be quick to deny.
It is his opinion that at this point Trevor would no longer be considered IS but should be moved into the LGS category. He was basing this on Trevor's age & seizures.
I showed him the video clip...which he agreed Trevy's spasms are undeniably A-symmetrical. But he also pointed out head drops...which are bi-lateral. Meaning involving both hemispheres. And that his left arm although less so...is affected as well. And while he would present it to the surgical team for me...he felt this evidence was ruling out a surgical miracle. To his credit, he did say it is imperative to get an VEEG before we completely shut the surgery door.
We spoke about the Keto diet. That would be last on his very educated list.
We left with broken hearts and his recommended to-do list...
24 hour in-patient video EEG. This will provide us with a baseline of how Vigabatrin is handling the epileptiform activity. And also reveal where Trevy's seizures are originating. Which will be used in determining whether or not Trevor is surgical.
Wean Vigabatrin within the next two months.
Three weeks in schedule another EEG to compare with our baseline...in hopes of protecting Trevor's cognitive development.
(if Trevor begins to regress developmentally he was open to re-implementing Sabril)
If Rufinamide fails move to Prednisolone.
If Prednisolone fails trial Felbamate.
I couldn't help myself. After he concluded his just jotted down thoughts...I blurted...
But LOOK at him!
Trevor was busy climbing walls...and smiling...and eye contacting...and if you didn't look too hard could be mistaken for a normal toddler.
He's doing SO great!
I need you to tell me that this kid is doing okay...
...and he's gonna be okay!
Dr. Boston paused. Looked me in the eyes and said...
Yes, he is doing okay right now.
But he is on a path that is leading to not okay.
Just like that.
I knew he was going to say that. I knew it. But the sappy inside of me has to ask. Every time. And I wondered how many other parents sat in that office. On that chair. With their almost typical toddler climbing the walls. Licking the outlets. Asking the same question. My heart felt their stories haunting me. I wondered if his response slipped out as easily the first time he was asked. When did his heart go numb. To the pain. The broken-ness. The world flipping on end?
I don't envy his job.
I don't envy mine.
And as much as I know he is NOT the Author of Trevy's future. I can't just throw his years of experience out the window. Because neither am I. And the One Who is hasn't given me a crystal ball.
If it (&*%) stops snowing maybe today's appointment will be more positive?