Skip to main content

weird observation

So as we've been weaning off Vigabatrin I've noticed a couple weird things...





Trevy's seizures are more often looking like one-sided arm jerk spasms that we noticed last September. As opposed to those nasty rip your heart out both arms above the head spasms. It's a mix of the two...





It's the weirdest thing...but recently right before a cluster it's like the curtain parts. And Trevor has a sudden burst of clarity. His speech & cognition explode. It's very odd. And I can't quite figure out how to even convey what we're experiencing. It's just like everything gets sharp before the storm strikes. And for a few minutes we're in awe. Then the cluster comes.




Trev used to roll with the punches. He'd have a cluster. It would pass. And he'd be jumping around the room again. Lately...he has a cluster. And after it passes he's very sleepy. Post-ictal. Sometimes he'll actually fall to sleep. Curled up on the floor (or me) with his bink & blankie. I'd be lying if I told you I was okay. It freaks me out that the seizures seem to be affecting him more.

Labels:

Comments

Shanna Grimes said…
Poor baby! It's just exhausts him :(

It seems like ever since Kay has been off the heavy duty stuff, she's been bursting with development. Sharper than she ever has been. Do you think it's just less of the mind numbing drugs? It makes me wonder if these kids wouldn't be total brainiacs with out meds.

Give him big hugs for us.
March 20, 2009 at 4:41 PM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more