Yeah, Lars is considered DD because his disability started before he was 18.
He's in "the system" which really helped for him to get the housing
assistance he needed. He's had some fantastic help from the case workers,
which we've been so grateful for.

When he got the VNS, he was told that 1/3 of the patients are seizure free,
1/3 get some help and 1/3 have no help at all. He fits in the middle class
of "some help". He wasn't a candidate for brain surgery because his
seizures were too generalized. Nothing has ever showed up on the MRIs.
Sure wish we could pinpoint a cause, but most seizures have no known cause!

One big plus for the VNS is that they discovered that it can help with
depression - people who aren't helped by meds can be free from depression
with a VNS implant. We did notice a dramatic improvement in his outlook on
life. We're not sure if it's totally from the VNS, but since the implant,
he's much happier and more outgoing. Cyberonics fought long and hard to get
the device approved for treating depression and they finally did get the
approval. They're now researching on a similar device to help cut appetite
for the obese! It's implanted in the abdomen and attached to one of the
stomach nerves. I'm not sure if that's in human trials yet or not.

Lars' neuro did say there were some new meds on the horizon and he would
certainly keep Lars in mind for enrollment in clinical trials, if he wanted
to do that. The big question would be what happens if the med works for him
(assuming that he got the med and not a placebo) and it didn't make it to
market? That would certainly be disappointing! We'll check with Dr. Holmes
when we see him again next month.

Wonder if it's the seizures or meds that cause the thinking problems?
Probably a little of both, esp with the extra-ordinary doses that Lars is on
(4500 mg Keppra, 400 mg Zonegran and 600 mg Lyrica). It's surprising that
he's even conscious with those doses!

Sherry


-----Original message-----
From: Cent_Wa_Epilepsy_Support@yahoogroups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of Rachel
Murillo
Sent: Sunday, May 06, 2007 3:48 PM
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: RE: [Cent_Wa_Epilepsy_Support] Re: New to the group

Sherry:

I can understand - right now my husband hasn't had a seizure in about 3
weeks.  But, durring the time I call the "dark ages", he would have several
each day - maybe only one big one, and several little ones.  It would be
really tough if he also had alergies to the medication.  The neurologists
believe Ivan's seizures are caused by a car accident after which the
seizures started (around 1989).  His seizures were under complete control
for many years until about 3 years ago.  They can't locat the scar tissue,
though, and so surgery hasn't been an option.  There was one neurologist who
wanted to try the VNS - but, we moved to Seattle and his new dr doesn't
think it will help.  
 
Is Lars developmentally disabled?  Ivan isn't - but after the dark ages, I
have noticed he's much less capable of deductive reasoning and absolutely
incapable of multi-tasking on even very simple things.  He is working on a
masters degree - but can only take one class at a time.  Even with one
class, sometimes the stress of a deadline or test can cause him to have
seizures.
 
Rachel