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...
19 comments:
I can't even help!! Without internet at home I have no you tube access. Is the file massive? Can you email it to me? I think I can get 5-6 MG at work.
ummm...A) get internet! B) I'll try...but I think the file is too big for my email server...
...d
I'm TRYING to get the internet back up and running, really I AM!!!
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!
Thanks Jen! I value your input...but you already know that. I mean...why else would I mess around trying to figure out OTM when it's a snow day & my kids were tearing the house apart behind me?! *smile* To me they seem very similar to Trevy's originial spasms...except now he's walking. And the right side is more involved...but maybe it always has been & we just never had reason to notice.
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
Certainly no expert but at one point Dawson was diagnosed with Myoclonic Jerks. To us they looked just like what Trevor is doing in the video.
My son Thomas (11 years old-10 years post spasms) began having similar episodes in November (video is here w/ movements at 33 seconds and again close to the end: http://www.dropshots.com/nchlsgdk#date/2008-11-19/19:29:52 )
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
Well, that is definitely a hard video to watch. Mind you I am nowhere near a seasoned veteran, but those look like spasms to me too. I am interested to see what the doctor has to say.
You guys are in our thoughts!!
I agree with Jen! KC has atonic seizures plenty of times before but it's different than what I am seeing with Trevor. With the atonics its just the head dropping, that's it. Trevy's arms are still going up at the same time, and it looks like his eyes are too? Looks like spasms to me. I'm sorry...I'm sure you are hoping they are not, but I know you want honest answers. Good Luck! BTW-got your email, thanks : ) I will write back soon...I've been only having a few seconds here and there to be online.
Karen
JUVENILE SPASMS... that's what Chugani calls them! It hit me last night and I had to keep reminding myself so I would remember this morning when I could get online :)
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!!!
Well, Ava has tons of myoclonics per day. Trevors look very much like our original IS spasms. Although when Ava's myoclonics first appeared they presented as long periods of staring (which I thought I noticed Trev doing)..then a quick myoclonic...then they would cause her to fall forward a few months after the initial presentation (but docs never called it a full atonic) Dr. G. says they were myo's.
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!
uggghh....i can't get it to work still!! i'll keep trying, hang in there!
D, Ok, I don't have any kids with IS or any type of seizure disorder, but even I could tell that he was having them! As I watched, I could feel my heart breaking and I wanted to reach into the video and just gather him in my arms to cuddle him. When I heard you talking to him near the end, I just wanted to hug both of you. I wish there was some easy way to make all these things just disappear, but unfortunately, I'm not a doctor and have no clue.
I wish my crummy computer and internet connection could handle this clip! I can't ever watch videos online, so I've honestly never been able to compare "notes"...
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
Thanks everybody for your feedback... I wish it wasn't spasms...and I was hoping you'd see something else. But it's one of those things that in my deep place I know. I remember how he looked in the beginning. It's more than the arms. It's the lips & eyes. Ugh!
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
i think they look like myoclonic seizures aka "spasms". connor's are very similar. he breaks my heart with those big eyes after each one. even after seeing them almost daily for over 2years they still get to me. thanks for sending me the link. i'm asking our bonehead dr. neuro about the banzel tomorrow. hugs...monica
Danielle-10 year out and I thought we were ok...seizure wise-ok, I mean....we've got other challenges to deal with, but not doing bad. And it changed in a heartbeat. And Jenn (I read your blog, too, and am on the ISGrads yahoo group as well)-I'm calm now (wasn't intially), somewhat reassured by a 3hZ spike and wave and not a 2.5 hZ slow spike and wave....Hopefully the appointment will get us at least a video EEG to help us sort it all out. And all you can do is hope each next day is better.
T's Karen...good luck at your appointment today! I sucked all the dust outta my computer & it seems to be helping...so I watched the clip. OMG! My heart just broke...watching him struggle through the spelling. Squeeze him for me...he's beautiful! Hopefully your neuro can give you guidance today!
((((hugs))))
...danielle
Ahhh, finally getting back to blogland to find this clip :( Poor Trevy!
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.
I agree that it looks like spasms, but I found that when we transistioned from IS to myoclonics, I could really feel it in the back... the muscle intensity for IS is significantly greater than for myoclonics.
Even as a "veteran" mom, my heart still skips a beat with every spasm!
[[[hugs]]]
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