----- Original Message -----

From: Sherry

To: Cent_Wa_Epilepsy_Support@yahoogroups.com

Sent: Saturday, January 19, 2008 1:33 PM

Subject: RE: [Cent_Wa_Epilepsy_Support] New Member

T/C's??? Is that Tonic-Clonic?

Boy, Lars would be *so* happy to have only two seizures of any kind per
month! I can honestly say I've witnessed thousands of seizures over the
past 6 years and at one point, it wasn't unusual to see 2-3 grand mals per
*day* not to mention quite a few complex partials on the same day! On
occasion, we'll see him go for up to a week without seizures, but for the
most part, the seizure free days may be only 3 or 4 days at a time and then
he has another round of seizures for several days. We did see a drop of
seizures after he started felbamate, even with a minimal dose so we're
really hopeful that when gets up to a maximum dose that he'll do even
better.

Fortunately, since the VNS, I can't remember the last time we've seen a
grand mal (looking back at the seizure log, it looks like 2004 was the last
one) but he still has a lot of partials and falls - several a day is not
unusual. Just the other day he had five falls (we're looking at them as
possibly aborted grand mals - they're definitely not 'rag doll' drop
seizures) in addition to several partials.

This is with the VNS and three seizure meds (plus 2 mg ativan prn for
clusters)! His VNS is currently set at 2.75 for the regular "zap" and 3.0
for the zap with the magnet.

Lars started having seizures when he was 12, 25 years ago.

Sherry

-----Original message----
From: Cent_Wa_Epilepsy_Support@yahoogroups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of SUE OWNBY
Sent: Friday, January 18, 2008 4:58 PM
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: Re: [Cent_Wa_Epilepsy_Support] New Member

She has her regular neuro there which we can get into anytime we wish...but
we've been waiting for a specialist in mitochondrial disorders for this
whole time.  Had an appt. in October (scheduled 10 months out) and it got
cancelled the week before because he was going out of town.  I've heard the
doctory at HarborView are good...and I just may look into that.  Chelsi will
be 14 in March and she's on Keppra and Zonegran.  I can't say that drugs
have EVER done anything for her.  She's continued to have them since she was
10 months old.  She averages 1 or 2 T/C's a month, which is 2 too many!
 
Thanks for the link, I will check it out!
Sue