Dravet's - Severe Myoclonic Epilepsy of Infancy

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Carl Weatherell - 10 Nov 2004 23:03 GMT

Anyone have experience in this, children grown/growing up with
Dravet's/SMEI?

We are curious about long term prognosis

thx

Carl ;-)

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Brownzoo - 16 Dec 2004 14:06 GMT

Hi Carl
I just happened to come across your post as of course I am scouring for
info. My son has never been diagnosised with this but He has all the
characteristics. I am dying as I read the info that says Lamictal makes
the seizures worse, yeah we're living that nightmare. He is 6.5 we have
been through a lot and are currently considering the vagus nerve
stimulator. Too much to go on here, feel free to email me at
Brownzoo@yahoo.com I don't know how old your child is but I would
definitely like to compare notes. thanks. Rebecca

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Dave ???? - 16 Dec 2004 19:26 GMT

Howdy Rebecca!

If you are considering the VNS pop into:

The VNS Message Board
http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

for more information.

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Dave ????

http://www.howdydave.com

> Hi Carl
> I just happened to come across your post as of course I am scouring for
[quoted text clipped - 5 lines]
> Brownzoo@yahoo.com I don't know how old your child is but I would
> definitely like to compare notes. thanks. Rebecca

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