Skip to main content

seizure report

So I think it's safe to assume at this point that Trevy's increase in seizures the past couple weeks was definitely connected to a brewing ear infection.


I think we're settling into a 40-ish daily range. As our current baseline.


And the bizarre-ness of being happy about that number doesn't escape me! ::smile:: But we SO are! Because...seriously...40-ish is so much better than ALL day long-ish!


******************

On topic...


Dr. Neuro emailed yesterday to let me know she's waiting to hear from Dr. Boston. Trev's most recent EEG is waiting his reading. Buuuuuut...she did show the EEG to Dr. G (B...you need to help me think up a clever nick for him! Like maybe Dr. Hmmmmm let's not be so agressive? :) from our local neuro team. And Dr. G agrees that Vigabatrin is the next best step for Trevor.


Sooooooooooo...


Hurry up already Dr. Boston!
Labels:

Comments

Mama Skates said…
thinking of u!

xoxox,
sharon
November 6, 2008 at 6:56 AM
labonte4 said…
Every time I go to Trev's blog to leave a comment, something happens around here.....crying...a mess....brother sister rivarly...so now I'm tring while 2 are sleeping, and Its' working out well!

Hmmmm...names for Dr. G.---the friendly giant?----the family man? (since he has 3 kids!! must be crazy *LOL*--Dr. Conservative?

We haven't started vig. yet. A loooong story. I am going to update my blog today...promise!!!

And no word on the other thing in the works.
November 7, 2008 at 4:44 AM
Danielle said…
I LOVE Dr. Conservative! I think that'll stick...lol Dr. H emailed last night and said she's planning on Trevy starting Vig next week. I think she's been dragging feet to give the Zon a chance to work...but with Trevy's last increase he's been VERY wobbly PLUS having at least 40 szs a day. Sooooo...she's finally ready. Altho she also mentioned wanting him to have another Digitrace...and I told J that she's smokin' some serious sumthin if she thinks we're having another EEG anytime soon! lol

...d
November 7, 2008 at 11:10 AM
Mrs. M said…
Whoa!
The sigh of relief for 40ish seizures makes complete sense! Crazy as that may be...it really does.
Oh I hope the Docs come forward with positive feedback for you all. I've been reading good things about Vigabatrin, may it be great for Trevy too!!
November 8, 2008 at 3:40 PM
Holli said…
Looks like we'll be trying the vig together! I've ordered Austin's and it's on it's way...hopefully be here by the end of the week or early next week.
I just hope our ES isn't just humoring my desire to try it. He said he's not real optimistic that it will work for Austin. So, I'm afraid he won't take the dosing seriously...and I wouldn't know the difference. Maybe I can get an idea from Trevy.
November 12, 2008 at 11:05 AM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

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