I doubt I'll be doing much video posting on a regular basis -it takes forever!
But, I managed to catch this cluster during breakfast this morning. I've never posted any of Austin's seizures before, and my descriptions thus far may not have done them justice. So, I thought I'd share this since infantile spasms can vary so much from one kid to the next...even Austin's clusters have different ranges in duration and intensity. This was medium I guess for him. There is head bobbing, a little eye movement...and the infamous hand moving and slapping. Note that the right hand is much more involved than the left. He no longer brings both arms up as in a typical spasm.
I will try to catch a drop seizure. Those are much more intense than these. And they are usually followed by a totally different reaction from him. They're hard to catch on camera since there's no predicting when they'll come...and they're over in a flash.
5 comments:
Is that hand slap common? Was this full duration or beginning of the cluster or the end?
It is interesting to see the left hand being so relaxed and un-used then to suddenly kind of pop back in to the mix.
I appreciate seeing your videos, glad you are now posting them and it helps to show everybody what we are talking about so much.
You on dial-up or something? But yeah, it takes a long time to upload, I just hit upload and walk away.
Ken -It's about 1/4 of the way through the cluster. And I shot it until my battery died. I think it ended shortly after though. Yes, the hand slap is VERY common. That was actually one of the main factors why we took him to Detroit. Dr. Chugani said it could be an indication of a left parietal focus. But, we found very little on the left side. It started as him grabbing his hand periodically. Then over the months it evolved into little use of his right hand completely. Then to slapping and clenching it after seizures. Strange because we didn't get many answers on that.
And...yup, dial up sucks!! I live in a fairly rural area...where high speed is unavailable. I miss it!
Holli...Thanks for sharing your boy again....I am really learning SO MUCH about IS...I actually haven't known a child PERSONALLY through ALL of Colby's years at special needs schools that had IS (at least not that I was told, and I was very nosy asking questions and in the school all the time!) It seems like there are lots of variations with your kids, too...AND changes that happen with the seizures...The videos are SO great to see and learn from...
I really need to figure out how to post Colby's....I have some of his "praying" seizures (I have all sorts of names for them) and then the ones where he totally collapses...I got a new camcorder and finally got a good one on tape and got as far as transferring it to my computer...I will probably NEVER figure out how to post it! My ex is a GENIUS and a computer engineer...Too bad, right?
Cyndi
Cyndi...you always have me & Kenny!
Holli...thank you so much for sharing that. It's so utterly personal...right. But I really deeply feel like it's important for others educational purposes. Trevy's seizures look SO similiar. Although...you know...the degree of intensity varies. But it's so much the same...that even some that were mostly just eye movement & ever so subtle head movement...I SAW THEM! Because I see them every day... In fact...when Trevy's IS resurfaced...that exactly what they looked like. Slight eye deviation...slight head movement...and sometimes just eyebrow movement.
But listen...A SEIZURE IS A SEIZURE!
Just in case anybody was wondering. I'm a little edgy about milder looking seizure being dismissed...as if it's not that bad. Obviously...I'm soap boxy today!
Anyway...
Love you sweetie...and your little man. I wish you lived closer...I think Trevy & Austin would be buds!
...danielle
ohhh I hate hate hate seizures!! he is growing...such a cutie :)
I ended up deleting Madies videos..too hard to watch...Breaks my heart to see ANY child going thru seizures..:( hang in there mama :)!
(((HUGS)))
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