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Re: Roll Call for our List!   Message List  
Reply | Forward Message #673 of 894 |
Re: Roll Call for our List!

hey there isn't a cure all for this. one thing that helps is to just
be patceint. also to let them try and be normal.
Deborah
--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, Sherry
<hot.rod.wife@...> wrote:
>
> Do you find that the VNS at least shortens the seizures or makes them
> milder? That was the main effect that we found with Lars - they weren't
> immediately aborted but they were much shorter some of the time....
>
> However, when he goes into a "cluster" nothing helps! We have a
hard time
> getting him to take his Ativan because he's so out of it and I think
that by
> the time he's aware enough to take the Ativan that he's coming out
of the
> cluster anyway! The Ativan does help keep him from getting more for
a few
> hours.
>
> Thank God the clusters are much milder and less frequent on the
felbatol!
>
> Sherry
>
> -----Original Message-----
> From: Cent_Wa_Epilepsy_Support@yahoogroups.com
> [mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of
> savedbygrace77777
> Sent: Monday, April 21, 2008 6:52 AM
> To: Cent_Wa_Epilepsy_Support@yahoogroups.com
> Subject: [Cent_Wa_Epilepsy_Support] Re: Roll Call for our List!
>
> Hi Sherry:
>
> Claire can't speak, but I can tell when she's getting ready to go
> into a seizure. We use the magnet, but, that doesn't seem to stop
> them at all.
>





Fri Jun 27, 2008 6:22 am

angelicarcher12
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Message #673 of 894 |
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Hello! My name is Jessica and I was just added to this group not to long ago. I have posted a couple of times. My daughter Sierra who is two and a half was...
jessq72
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Apr 15, 2008
6:34 am

Hi Jess: My name is Diana. I'm a brand new member to the group also. I know where you're coming from. My daughter, Claire (11 years old) has the same...
savedbygrace77777
savedbygrace...
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Apr 15, 2008
11:45 am

Are you a woman with epilepsy? Do you have a wife, a daughter, a sister, a mother, or a female friend with epilepsy? Whatever your connection with women with...
Mineko Sterling
mineko_from_...
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Apr 15, 2008
4:22 pm

... I was just reading through the messages and realized you sent me a post. Thank you so much. I can't imagine how hard it must be for you to be dealing...
jessq72
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Apr 24, 2008
5:53 am

... I was just reading posts again and didn't realize Claire was unable to talk completely. I can't imagine what you must go through on a daily basis. It...
jessq72
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Apr 24, 2008
5:58 am

Diana ~ just curious if you've ever looked into a VNS? That's our next step. Sue ... From: savedbygrace77777<mailto:savedbygrace77777@...> To:...
SUE OWNBY
sue_ownby
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Apr 21, 2008
2:52 am

Yes Sue. Claire has the VNS implant. It hasn't worked as well as we had hoped. God Bless!! In Jesus' Name, Diana ... From: SUE OWNBY <s_042620@...> To:...
Diana Trahan
savedbygrace...
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Apr 21, 2008
1:04 pm

When Lars had his placed, we were told 1/3 of the patients had great control, 1/3 had some control and 1/3 had no control. His seizures were so out-of-control,...
Sherry
sherdh
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Apr 21, 2008
1:44 pm

Hi Sherry: Claire can't speak, but I can tell when she's getting ready to go into a seizure. We use the magnet, but, that doesn't seem to stop them at all. ...
savedbygrace77777
savedbygrace...
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Apr 21, 2008
1:52 pm

Do you find that the VNS at least shortens the seizures or makes them milder? That was the main effect that we found with Lars - they weren't immediately...
Sherry
sherdh
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Apr 21, 2008
2:44 pm

Sherry: It seems as though when we first had the VNS implanted, we were getting good results, but as time went on, it seems as though it quit working ~ The...
savedbygrace77777
savedbygrace...
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Apr 21, 2008
3:16 pm

I'm assuming that the VNS is being checked regularly by the neuro? Has it been "upped" at all? Illness can certainly affect the seizures. Stress affects them...
Sherry
sherdh
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Apr 21, 2008
4:38 pm

Oh yes, her neuro checks it. He has adjusted it many times, with no different results. I believe Claire is allergic to Lamictal also, because, when we reached...
savedbygrace77777
savedbygrace...
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Apr 21, 2008
4:50 pm

hey there isn't a cure all for this. one thing that helps is to just be patceint. also to let them try and be normal. Deborah ... hard time ... that by ... of...
Deborah
angelicarcher12
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Jun 27, 2008
6:22 am

There may not be a "cure" but with the proper meds, hopefully the seizures can be better controlled. My step-son told me a few years back that it wouldn't get...
Sherry
sherdh
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Jun 27, 2008
3:22 pm

hey does he "see" people who aren't there? I did that alot. i also whent insane on a med. i came at my brother with a knife!! it scared everybody but after we...
Deborah
angelicarcher12
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Jun 28, 2008
1:50 am

Well, not people, but he did have quite an active imagination <g> Celontin set him back mentally - he said he had to learn to walk and talk again (but then he...
Sherry
sherdh
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Jun 28, 2008
4:11 am

My girl is allergic to Lamictal. We've tried it twice and both times she became so ataxic (dizzy-no balance) she couldn't even sit up, let alone walk. It's...
SUE OWNBY
sue_ownby
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Apr 22, 2008
3:08 am

I'm late in responding to the roll call. My son, 12.5 years old, has experienced partial right frontal lobe seizures since 6 years old. He's taking...
Paula Thalmann
thalmannmom
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Apr 22, 2008
3:53 am

Forgot to mention one plus from the VNS surgery .... Blissfully, my son does experience a positive side effect since his VNS .... his mood is much more jovial....
Paula Thalmann
thalmannmom
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Apr 22, 2008
4:02 am

Hi Paula: I want you to know that my thoughts and prayers are with you and your family. I pray that you will continue to see better and better results from...
Diana Trahan
savedbygrace...
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Apr 22, 2008
12:21 pm

I'm on Lamictal and it makes me like a nut. I told my neurologist and he says it's not he meds, so I guess he wants me to remain a nut. ... From: SUE OWNBY...
Joellen Bley
joellenlb
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Apr 22, 2008
12:51 pm

Claire's neurologist tried to tell me that it wasn't the Lamictal also. But I told him I wanted her off of the med because everytime she took it, she would...
Diana Trahan
savedbygrace...
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Apr 22, 2008
1:01 pm

Paula - it's so amazing to me, the diversity of the seizures. We have just about every type/severity represented on this list! I'm glad to see it grow. I've...
SUE OWNBY
sue_ownby
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Apr 23, 2008
1:34 am

Funny neurologist! ... From: Joellen Bley<mailto:joellenlb@...> To:...
SUE OWNBY
sue_ownby
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Apr 23, 2008
1:34 am

... Cent_Wa_Epilepsy_Support@yahoogroups.com<mailto:Cent_Wa_Epilepsy_Suppo rt@yahoogroups.com> ... List! ... and he says it's not he meds, so I guess he wants...
Deborah
angelicarcher12
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May 26, 2008
8:29 am

Hi Jess: Claire was able to speak, walk and function up until the major seizure in 1999. It's only since then, because of the brain damage that the seizure...
Diana Trahan
savedbygrace...
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Apr 24, 2008
12:08 pm

... seizure in 1999. It's only since then, because of the brain damage that the seizure caused, that she is totally disabled. She's made some progress and is...
Deborah
angelicarcher12
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May 26, 2008
8:16 am
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