I'm sure this won't appeal to everyone...not everybody digs morbid.
::smile::
::smile::
But for the curious...we were able to capture some mild spasms (this is just a snippet of what ended up being quite a long cluster involving over 20 spasms ranging from mild to moderate intensity) associated with the lip smacking & also picking at his food. I've noticed when he's in his high chair...if he stops eating & starts playing with his food...it's a cue that a cluster is coming.
I've also noticed the drama of the seizures doesn't really translate well over the video clips. Some of the spasms are as little as his eyes rolling upwards. To the untrained eye it would probably be missable.
And more. But again...I grabbed the camera after the more obvious spasms had passed. Lots of lip smacking though...
8 comments:
Wow. I know it's subtle, but I certainly saw the lip smacking, blanket picking, and eye shifting. I agree with you that there may be complex partials in the mix. Poor baby : (
I don't really know enough about the CPS, but I definitely notice the smacking and the picking at the food. Connor has some mild ones too that just involve his eyes...it's just so bizarre sometimes. Trevy killed me with the smiles during the last video. Poor little Connor does the same thing during some of his clusters. I can hear the heart break in your voice. You know we are all here for you!
Since I assume these are you tube, I will ahve to wait until I am home tonight. I am anxious to see what you are seeing. I'll let you know my thoughts!
It is bizarre. All of it. And sometimes...especially when Trev seems unaffected...I start to wonder if I'm making it bigger than it is? Altho it's hard to not think it's HUGE when your kid is having clusters of seizures all day long! Ugh!
The lip smacking is the most noticable odd behaviour.
Jen...sorry...for some reason I can only upload YouTube vids to my blogspot.
...danielle
Don't apologize. I will try and get to them tonight. I am still painting at my parents though, so maybe tomorrow. I spent 5 hours painting one small room last night and it STILL needs another coat. GRRR
I know what you mean about the video not really capturing the reality of the situation.
Yes, I can hear the heartbreak in your voice too. Big hugs, Danielle. I totally can identify right now.
I think that the gravity of Kay's return of spasms and increase in seizures is really starting to settle in. There was some hope that the Topamax was going to kick in and work, but we aren't really seeing a difference yet. I know we have to give it some time and be patient, but it's hard sometimes.
Wish I could help Jen...I need the practice for when we get a place of our own!
It's so funny that you guys keep mentioning my voice. I never watch the vids with the volume up...but I have no doubt I sound sad. I feel sad when he's seizing...my poor monkey!
...danielle
Danielle, I don't know a bit of anything about IS or CPS except from you and Jen, but I definitely noticed the lip smacking and playing with his food and blanket. I agree with Shanna....you can hear the heartbreak in your voice. I wish there was something I could do for you all. Sending lots of hugs, prayers and love to you all...
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