My free time is precious and The Doctors are cheesy. I suppose that's why we really don't mix.
::smile::
But this video clip was posted in one of the Infantile Spasms forums I belong to. And on the cusp of having lived through it...I swallowed my cheesy pride and clicked play. I didn't pop popcorn or anything. But I will admit that it is by far the best...most informative...segment I've seen to date. The footage is graphic at times. But frankly, doesn't touch the real life version.
Three last thoughts before I send you on your video viewing way...
1 - the child in this clip has TSC and the amount of tissue removed was much less than that of Trevor and other hemi kids. But no matter how you dice it...this is a radical intervention. I just want to point out that the more tissue removed...the more hard core the recovery process.
2 - watch for the upcoming segment that flashes across the screen. Leave your response in a comment! I'll leave mine later...
3 - the connection between the two mothers is powerful. Tear spilling powerful. In fact...that may be more graphic than the surgery footage...
Now...you're free to view. But I wouldn't recommend popcorn...
6 comments:
Wow. The big probe thing made me queasy. Thanks for sharing, very informative. They didn't actually name Infantile Spasms, which I find is interesting... it could have gone a long way to helping educate the public about the condition.
Cheesy, heh. But effective for those aspects you commented on - strong visuals and strong emotion. And I really had to struggle through your early references to the 'grid' back when. This video clarifies the concept well. (Me not being a bit queesy about brains and surgery.)
Can I just say you take this blog to WIDEly different topics - without notice! One day it is IEPs, another it is rain and the view from your room.
I suppose I will have to anticipate coming here with the expectation of surprise. ;)
Barbara
Thanks for posting this Danielle. TSC has ruled our life for over two years. Remy's sub-total resulted in the removal of 40% of the right side of his brain. I have talked to/messaged with several TSC families who's stories ended in complete hemi's.
The only upside to TSC (and there is only one) is that the tubers give a definite starting point for hot spots.
Thanks again Dannielle.
I agree with Carolyn. Why not call a spade a spade and say "infantile spasms"?
I'm a sucker for a positive outcome. Thanks for sharing.
I think they left out the IS because they were focusing on TSC. But I agree...not every child with IS has TSC. Just like not every hemi kid has IS. And all could use the publicity.
Barbara...I like surprises! Although...this flooding we're having is a once every 500 years event! Definitely blog worthy. The river has flooded to the point that I 95 is submerged under almost four feet of water! We're thankful our basement is only slosh deep...
Our neighbor's is to his knees!
...danielle
I will say, that as a TSC mom, I was also surprised that IS was not mentioned. It is possible that the little one featured did experience them, but I have not yet connected w/ a TSC family who has not dealt w/ IS at one point in time. Infantile Spasms is often the initial diagnosis, until an MRI shows the tubers. Strangely, TSC is the only situation where IS can exist, causing the same amount of damage without an EEG showing the "typical" hypsarrythmia. Crazy.
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