[tri-med] Re: multi focal myoclonic seizures/general seizures

Wow aren't we lucky to have you here to be able to describe how you 
are feeling during this. I'm so interested. When my Gill had her 
petit mal seizures, she would sometimes be eating and the spoon would 
pause half way to her mouth, and she would stare, or sometimes a 
slight tremor. She once ran into a hedge on her bike (so we had to 
ban bike riding after she was diagnosed). She was playing cricket in 
the yard, and paused, stared and didn't even strike out at the ball, 
and other such things. Once during a family concert, she had one, and 
afterwards, pretended she was smoothing down her dress, as she was 
obviously aware of the blank space in the song. She said later on 
when she got older, that she didn't really feel anything, except in 
class she felt like she kept missing bits of what the teacher was 
saying. She was on medication from age 9 to 17 years (Zorontin). She 
eventually grew out of them.

Tess is apparently (in Prof Ovrier's opinion) having lots of "small 
epileptic activity," and they have put her back on clonasepam 
(Rivitril) beginning at point 8 and gradually working upwards, 
depending on how she tolerates it, to 2mg. I have witnessed one 
seizure that was very like petit mal (from my experience with Gill), 
when Tess just stared, but there was a slight tremor in her hands and 
arms too, this happened a couple of weeks ago.

She didn't have her teeth taken out last Thursday as she still has a 
chest infection and head cold. They won't reschedule until she's well enough.



At 12:00 AM 25/08/2007, you wrote:
>
>
>Thanks for you kind response! I don't recall any emotional precursors to  the
>myoclonic sz; maybe some excitability. I can definitely agree with feeling
>confused during the episode; it's a crazy feeling to have a group of muscles
>out  my control. I think I could understand feeling angry because of 
>not being
>in  control of the muscle's actions, and because of not knowing what's going
>on. An  example of what can trigger my myoclonic seizures is the 
>flashing lights
>that  accompany fire alarms.
>Before my grande mal's, I have a lot of auras (thankfully!): the 'smell' of
>wood smoke and laughing gas (very disconcerting!), halo's around 
>lights. Right
>  before the sz, I get really excitable and start to hyperventilate.
>I have another "tic" that I think is a number of small focal myoclonic
>seizures: I can be doing anything, including walking, and stay 
>totally concious;  I
>liken it to a CD skipping; it feels like my body is skipping a beat, and they
>  come in fours usually. Anyway, my neurologist looks at me like I've gone
>psychotic when I tell him about them, so who knows!
>: ) Annee
>
>
>
>Oh,  how the little things
>Strengthen my tiny wings,
>Help me to take on the  world,
>When you love me,
>There's nothing I wouldn't try,
>I might even  fly.
>-Sarah Groves, All Right Here
>actually  your input is ideal as you can tell me what it FEELS LIKE. Bec
>seems  confused, angry, and it looks like, well, if she was speaking she
>seems to  keep repeating until 'whatever is happening' is done. But the big
>thing is  what does it feel like.
>
>Catherine, mom of Becky (32yrs. Trisomy 13  Mosaic)
>
>
>
>
>
>
>
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Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 20, Mathew 18, Ashleigh 17, Alex 15, and Tess 10 years 
old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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