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.
Add Rufinamide.
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...
I can't.
Yes, he is doing okay right now.
But he is on a path that is leading to not okay.
Just like that.
::boom::
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?
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.
Add Rufinamide.
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...
I can't.
Yes, he is doing okay right now.
But he is on a path that is leading to not okay.
Just like that.
::boom::
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?
Comments
Why do these horrible things wrack our babies brains? I wish I knew.
I hope that all of the future plans will give some relief for Trevor & you. I'm here if you need a shoulder, even though I'm so far away.
But on a serious note. I have been in your shoes. WE have that child that LOOKS okay. It is hard to explain to someone that he isn't. Obviously after working with him, they get that something is 'off' but can never quite figure out why. It's just another mystery of post IS and epilepsy.
Don't accept that there is no hope for Trev, even if a doctor won't say it. Trev will do and be, what Trev will do and be. He will dictate who he becomes. Keep teaching and he'll keep learning. Maybe it'll be slower than others, but persistence will pay.
Try and see if you can get in to Dr P.
Don't get sucked in by one Dr's opinion. Especially when it comes to HIS list of meds! We've seen a few different doctors, and base our decisions on our gut....and the opinion(s) of different docs. We've been approached about both Rufinamide and Felbatol...but, as of now, have said no to both for a number of reasons, but they are still on the table if needed.
Don't be discouraged because....not to sound ridiculous...but it does always seem that whenever we are at our lowest..we do always end up seeing that light at the end of the tunnel..and start hoping again!
(((((tight, tight hugs!!!)))))
xoxoxoxox,
sharon
I had one doc tell me that Javi would never speak if he didn't speak by age four, I had another doc say that he would be mainstreamed by kindergarten. Neither one of them were right!! You just can't put limitations or labels on kids. They will surprise you every time!
With that being said, we had heard from our neuro that if the topamax didn't cure the 2nd bout of IS for Kay, he would move directly to the diet. He said there is new evidence that the keto diet can really help control many types of sz's that are difficult to control with traditional western meds.
Also, I thought that they didn't start moving to the LGS dx until they were 3 years old and showed signs of major developmental delay???? I don't know that much about it, but I think I had read that somewhere.
Hang in there sweetie. Just enjoy Trev. Don't let the docs ever rob you of your hopes. He is a beautiful, bright, lovable, curly top boy. Thank god for every day with him and celebrate every step forward.
Luv ya D!
-Shanna
Big hugs to you. Keep believing in little Trevy. He has never ceased to amaze you and all of us.
basically the cliff's notes version was....neurologists suck. they are the GRINCH of the medical profession. Trevy will prove him wrong...he just has to. Love to you all!