Lynn,

Oh, I fully understand the fear! He can be talking with you and down he
goes right in the middle of a sentence! There have been more times that
we've been on the phone with him and called his caregiver to go check on him
because he started having a seizure while we were talking! It's eerie.

When we were at Walt Disney World in April for a wedding, he had at least 45
seizures that week - those were the ones we counted! It was hell getting
through airplane security! He had a seizure while in line and it got pretty
crazy trying to get him moving on through! Fortunately, the TSA people were
pretty cool about it.

He never has any warning that he's going to have a seizure, which makes it
really hard. If I were him, I'd be pounding at the door to get a seizure dog
but he doesn't like dogs and won't even think about it!

He's active at Highland Center in Bellevue where they have wonderful support
for developmentally delayed people (he fits in that category because his
problem started before he was 18). He goes there about three times a week
for social club (games, karoke, crafts), movietime (the participants bring
their own DVDs and the group votes on which one they're going to watch),
dancing and drama (he's even been in a play and will be in another one
starting next weekend) and goes bowling with the group on Sat mornings. He
did karate while the program was available, but the instructor left and
they've been having a hard time finding another one.

He volunteers at the YMCA once a week and is even looking for a part-time
job but it's hard to find an employer willing to take the risk (He's working
with DVR and NW Center). Every Fri and Sat nite we're at Crossroads Mall in
Bellevue to hang with his buddies and listen to the music. We usually go
with him or at least swing by and check up on things.

Finally, after four visits to the ER in three weeks - getting his head
stapled back together two of the visits - we've got him convinced that he
should probably wear his helmet on a regular basis - at least until we get
the falls under control. He's got one that doesn't look like a football
helmet - it's fabric and foam and works really well.

He'll start curling forward, kinda like someone on a diving board only
without the benefit of having his hands over his head and water to soften
the fall <g> and just keep going until he hits the ground. He either lands
directly on the top of his noggin or his knees will start to buckle and
he'll land on his bottom, usually hitting his head on something on the way
down before it hits the floor.

When he had the tonic-clonic seizures, he'd just fall flat forward and do a
great job of abrading his face on the asphalt or cement for several minutes.
Usually he'd just get some facial abrasions and bruising - only one time did
we have to get him stitched up from those falls.

Doing a little googling, I found a study which indicated that 35% of the
patients in the study never achieved control! And if it's not controlled
right away, it probably will never be in control.
http://www.neurologyreviews.com/jan05/refractoryepilepsy.html

It's so great that the meds work for you! I have a feeling that if some of
the meds that are out now, or even the VNS, were available when Lars started
having seizures, he'd be doing a lot better!

Sherry


-----Original message-----
From: Cent_Wa_Epilepsy_Support@yahoogroups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of
LMEvans926@...
Sent: Monday, October 29, 2007 8:17 AM
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: Re: [Cent_Wa_Epilepsy_Support] Felbatol

Sherry,
 
I'm glad you have such wonderful doctors.  I'm fairly new to Epilepsy, so I
probably should have kept my big mouth shut.  I've only been diagnosed since
May of 2006.  When I read everyone's stories, I find it hard to feel sorry
for myself because I've had a total of three Tonic-Clonic seizures that we
know of, but multiple simple partial aura seizures.  I haven't had anything
since going on meds a year and a half ago.  Reading stories like Lars' makes
me feel pretty humbled and lucky.  I freak out about the thought of having
ANY seizures, as I am home alone with my children much of the time, so I
can't imagine what it must be like to live with so many seizures.  I would
be totally paralyzed with fear and unable to function.  I really admire
anyone with this affliction who lives a "normal" life while dealing with
seizures.  I know I couldn't handle it.  I literally have panic attacks even
thinking about having a seizure and sometimes I have to take Ativan just to
calm down.  It's pathetic, really. =) Best of luck with Lars, I hope this
new treatment works out.    Take care.
 
Lynn