The other night Dr. Neuro called to ask about Trevy. And to let me know that...
yes we can begin to wean the Vigabatrin.
BUT...
she's still feeling sketchy about Banzel.
And is insisting we start the new med during our upcoming in-patient VEEG (and crossing fingers PET scan too!) to moniter Trevy's response. Since I'm big chicken when it comes to trialing new meds...it works with me!
She was also asking me to define the way Trevor's seizures are currently presenting. Have they changed? How often? Intensity? She's concerned that his seizures are morphing into multiple (and more often) seizure types.
And so...I'm posting the video clip below of the most common clusters that we're seeing these days. This was actually his third cluster before 10am. I only captured a handful of seizures. There were approximately 15 in that cluster. Which is our new norm. To me...his right side is undoubtedly more affected than his left. That said...we're seeing more & more both sided spasms. Along with loss of balance. And his little head falls forward (leaning to the right) which Dr. Boston informed us are head-drops.
We're still seizure rookies. I call them all spasms. Because they cluster.
But I thought I'd call on the experience of the seizure seasoned. It would be wonderful if you would watch the clip & share your thoughts...
yes we can begin to wean the Vigabatrin.
BUT...
she's still feeling sketchy about Banzel.
And is insisting we start the new med during our upcoming in-patient VEEG (and crossing fingers PET scan too!) to moniter Trevy's response. Since I'm big chicken when it comes to trialing new meds...it works with me!
She was also asking me to define the way Trevor's seizures are currently presenting. Have they changed? How often? Intensity? She's concerned that his seizures are morphing into multiple (and more often) seizure types.
And so...I'm posting the video clip below of the most common clusters that we're seeing these days. This was actually his third cluster before 10am. I only captured a handful of seizures. There were approximately 15 in that cluster. Which is our new norm. To me...his right side is undoubtedly more affected than his left. That said...we're seeing more & more both sided spasms. Along with loss of balance. And his little head falls forward (leaning to the right) which Dr. Boston informed us are head-drops.
We're still seizure rookies. I call them all spasms. Because they cluster.
But I thought I'd call on the experience of the seizure seasoned. It would be wonderful if you would watch the clip & share your thoughts...
Comments
...d
Anyway, thanks for the OTM email. Now here is my 2 cents.
Only the first 'motion' didn't involve his head. This is EXACTLY how Austin presented in the beginning. And they classified them as head drop/atonic seizures. I assume this is because 1) the neuro was a moron or 2) the was no trace of hypps AND she was a moron! Anyway, watching this is like watching Austin. They were even spaced out about the same, though a lot of times they knocked him completely off his feet leading to many brusies and even chipped teeth.
We went with the atonic diagnosis for 4.5 months before we got to Boston and the diagnosis was changed to IS. IMHO I say they are still infantile spasms, or if you want to be more "PC" myoclonic spasms, since that is what some neuros call them in older kids. As Chugani says the ONLY seizures that cluster are spasms.
My 2 cents
P.S. He's such a cutie!
btw...I think you gave me the way to allow Dr. Neuro to view vid clips too! She can't access YouTube from the hospital...and the files are always too big for my server! I emailed her this clip via OTM...we'll see what she has to say later!
...danielle
We have a neurologists appointment on Wednesday.....EEG in December showed 3 Hz spike and wave, so they started him on Zarontin-we hadn't particularly noticed absences....His cluster as well, with about 5 "spasms" per cluster-and Thomas is soooo far removed from when he had IS-10 years seizure free-that I don't think we can call them IS anymore. I don't know-but I'm right there with you with the return of the ugly seizure monster.
Karen
You guys are in our thoughts!!
Karen
Karen (Thomas' mom)- how you manage to remain so calm amazes me. I wish Thomas luck with the Zarontin.
Karen (KC's mom)- GOOD LUCK!!!
I also noticed him smacking his lips. Ava does that ALL THE TIME when she's having a cluster. I'm going to try to get a vid. of her today and post if for you to look at.
D...I hate that we even have to talk about our kids having seizures!!! This sucks!
I'll have to remind myself to check it out when I head to civilization (aka my mother's house!)...
By the way...our doc has never shown any interest in explaining or wanting to distinguish whether or not Austin's are atonics or myoclonics..blows my mind.
Holli
I showed the vid to his neuro...and she feels they look like his original spasms. And is now ready to move forward with Banzel.
Thomas' Karen...I tried to watch the video clip...but my *^$^&*#$0-ing computer keeps shutting down on me! Ugh! I hope it's not IS... I hate IS. It's like you can never breath easy again...
...danielle
((((hugs))))
...danielle
I am not an expert, but they look different from when he had the spasms before. I know the way spasms present themselves can change (Kay's went from forward jack knife to backward jack knife, then to presenting more on one side than the other). I just don't know. This cluster seems like it wasn't as intense as one of the previous clips. Do you think that is from the meds or just not as intense as usual? Hoping the meds are at least calming the intensity.
Honestly, even though he is having sz's. He really does look great. He looks alert, responsive, he's trying to talk and very aware. These are all very good things. What a little trooper! I'm so proud of him!
Hang in there mama. Keep us posted on what Dr. Neuro has to say.
Even as a "veteran" mom, my heart still skips a beat with every spasm!
[[[hugs]]]