So remember the other day?
When I waxed all nostalgic about the great answer hunt in the crazy land of Infantile Spams. And things of that nature?
So...
Yeah...
...ummmmmm
...about that.
Seems I misunderstood Dr. Neuro's email. I shoulda waited for the phone convo before writing lengthy posts. Lengthy misguided posts. My bad.
::smile::
And I probably shouldn't be laughing right now either. But it is...really...kinda funny. And SO very me!
The thing is...I'm not WAY off base.
And to be fair. Her email was misleading! I emailed asking if it was Cortical Dysplasia. She emailed back "it is a migration disorder".
Well...so is CD! So they're in the same family. Both falling under the Malformations of Cortical Development (MCD) category.
The same. But different.
Ooops.
And without making this post overly long and boring. I'll try to relay what I learned.
Cortical Dysplasia (which is not the findings in Trevy's pathology) is a migration disorder that is a little more organized. And is thought to happen later during fetal development.
Heterotopia...also a migration disorder (and is Trevy's pathology) happens in the very early stages of fetal development. The word heterotopia is really just a fancy way to say "displaced". (Barbara may be able to better comprehend and explain some of these things! I recommend clicking over there regardless...cause her current post is a great read!) The neurons in Trevy's brain made it past the central region and began the migration upwards towards the top of his brain. But somewhere along the way the little neurons lost their way. And were confused. And are instead displaced. EVERYWHERE. Little itty bitty gray matter neurons are peppered throughout his white matter. So more specifically Trevor has Gray matter heterotopia. Albeit mildly.
Now...as Dr. Neuro said...how does this relate to neurology? Is this the cause of his seizures? What does his future look like?
We just don't know. (Neuro School theme song?)
But we do know that Trevor is responding (in the short term) fabulously to surgical intervention! We are now counting in the months of seizure freedom. Something we haven't done if a very very long time! And he is very very young! Of course I'd like to more fully understand how this new piece fits into the puzzle that is my son. Dr. Neuro too. But she was unable to find any helpful literature at all. She repeatedly reminded me that science is constantly discovering. And that Trevy will be The Literature for another family.
Which is in a way...comforting.
As is reminding myself that Trevy is still Trevy. Just as he was Given. His story is still his. Just like it's been Written.
But lesson learned. Next time I have a pathology report to report...
I'll wait for the phone convo first!
When I waxed all nostalgic about the great answer hunt in the crazy land of Infantile Spams. And things of that nature?
So...
Yeah...
...ummmmmm
...about that.
Seems I misunderstood Dr. Neuro's email. I shoulda waited for the phone convo before writing lengthy posts. Lengthy misguided posts. My bad.
::smile::
And I probably shouldn't be laughing right now either. But it is...really...kinda funny. And SO very me!
The thing is...I'm not WAY off base.
And to be fair. Her email was misleading! I emailed asking if it was Cortical Dysplasia. She emailed back "it is a migration disorder".
Well...so is CD! So they're in the same family. Both falling under the Malformations of Cortical Development (MCD) category.
The same. But different.
Ooops.
And without making this post overly long and boring. I'll try to relay what I learned.
Cortical Dysplasia (which is not the findings in Trevy's pathology) is a migration disorder that is a little more organized. And is thought to happen later during fetal development.
Heterotopia...also a migration disorder (and is Trevy's pathology) happens in the very early stages of fetal development. The word heterotopia is really just a fancy way to say "displaced". (Barbara may be able to better comprehend and explain some of these things! I recommend clicking over there regardless...cause her current post is a great read!) The neurons in Trevy's brain made it past the central region and began the migration upwards towards the top of his brain. But somewhere along the way the little neurons lost their way. And were confused. And are instead displaced. EVERYWHERE. Little itty bitty gray matter neurons are peppered throughout his white matter. So more specifically Trevor has Gray matter heterotopia. Albeit mildly.
Now...as Dr. Neuro said...how does this relate to neurology? Is this the cause of his seizures? What does his future look like?
We just don't know. (Neuro School theme song?)
But we do know that Trevor is responding (in the short term) fabulously to surgical intervention! We are now counting in the months of seizure freedom. Something we haven't done if a very very long time! And he is very very young! Of course I'd like to more fully understand how this new piece fits into the puzzle that is my son. Dr. Neuro too. But she was unable to find any helpful literature at all. She repeatedly reminded me that science is constantly discovering. And that Trevy will be The Literature for another family.
Which is in a way...comforting.
As is reminding myself that Trevy is still Trevy. Just as he was Given. His story is still his. Just like it's been Written.
But lesson learned. Next time I have a pathology report to report...
I'll wait for the phone convo first!
Comments
I struggle with the why??? Infection?? Genetics?? No DNA testing for us offered unless we pay out of pocket...
But anyway...
Have you signed Lauren up for the Infantile Spasms Registry study? They are zoning in on genetics.
I finally printed out the consent forms...and am sending them out this week.
...danielle
We are doing EPGP by the way. Part of the study is on IS.
I think it's a very good sign that he's responding so well post surgery though. At least I'm trying to force myself to focus on that!
I emailed Chugani...and he said he's seen it before. According to him many times heterotopia and CD are found together. He didn't seem overly concerned or surprised.
...danielle
And the best thing is, he is still SO young that his current intervention should continue to work miracles for him!!!!
Cyndi
The physicians seem to be explaining things as well as possible and I know a small fraction of what they know. danielle is a good translator (when she has the whole message). ;)
Barbara
if you want. It is so frustrating to have little pieces of the puzzle but nothing fitting together to make a big picture.
Lori
PS thanks for the updates.
It's all a puzzle isn't it? And you're slowly being given pieces to put together. Genetic testing...we've gone that route for Bup's TSC and have most of the answers which is great for our extended family. The blood work isn't done in Canada though, and our Health Region won't fund it to have it done in the US right now due to budgetary constraints. So....we'll wait. Bup's not about to reproduce anytime soon so we can wait...and hopefully the future will bring more answers, better testing, treatment, etc.
I wish all of those things for your Trevy too.
M