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!
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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!
5 comments:
thinking of u!
xoxox,
sharon
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.
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
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!!
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.
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