Tuesday, June 30, 2009

Re: [epilepsy] EP website/ info



yeah I looked there but still havent come to an answer of what the jerking last night was about!

 

________________________________
From: "mylmy@bnin.net" <mylmy@bnin.net>
To: epilepsy@yahoogroups.com
Sent: Tuesday, June 30, 2009 9:22:05 PM
Subject: Re: [epilepsy] EP website/ info

Elizabeth,

There are at least 25 different kinds of szs and about
that many meds. I like to type Epilepsy Ontario
into my Yahoo tool bar. That website has a lot of info.

For the szs -- there is a list of them and whichever one you
click-- a description will come up and tell you about it. there
is a lot more info there also.

Millie

> yes shes been weaning off for a week tomorrow. Im not really worried about
> the weaning and getting off the keppra totally. Shes been on it for two
> years and what the side effects have been its worth her getting off ot it.
> The pros out weight the cons of getting her off of it. Tegratol didn't
> help and made her loose her hair and have a rash, depakote made her gain
> 15 pounds and didn't help that much either. Keppra has been good but its
> not stopping the seizure and the side effects are beginign to get worse
> which happens when she is getting immune to her drugs.
> Im wondering more about the jerking in her arms and legs then anything
> else while Im waiting on her epitologist to call me back!
> Thanks!
> Elizabeth
>
>  
>
>
>
> ____________ _________ _________ __
> From: "mylmy@bnin.net" <mylmy@bnin.net>
> To: epilepsy@yahoogroup s.com
> Sent: Tuesday, June 30, 2009 8:49:12 PM
> Subject: Re: [epilepsy] Question: withdraws
>
>
>
>
>
> Elizabeth,
>
> Is your daughter going off of Keppra now? Maybe she
> needs both meds. Every person has to find their own med.
> Just because Dilantin and Phenabarb work for me doesn't
> mean they will work for anybody else.
>
> Most of us have found that brand name meds work better that
> generic. I know brand name Dilantin is stronger than the
> generic.
>
> Millie
>
>> I ushually dont post on here but try to help other with what I have
>> learned from the past 6 and half years of my daughter having ep.
>> My 6 and half year old daughter has had ep since the age of 2 weeks. We
>> live in Texas we have been to Lubbock, san Antonio, San Angelo, Dallas
>> and
>> Fort Worth and Austin to see nuerologist. Till we finally got to go to
>> Houston to Texas Children's Hospital to see an epitologist. We finally
>> got
>> a diagnoses last August that yes its ep and that its because of her
>> metabolism. My daughter has been on Keppra 8 ml am and pm and Vitamin
>> B-6
>> (for the emotional side effects of keppra)since August and shes been on
>> keppra in general for two years. We just went and saw her epitologist
>> and
>> we decided that if Keppra was going to be her drug of choice to stop the
>> seizures it would have already done it. So we added zonisamide (geniric
>> of
>> zonagram) 100 mg at night with a smaller dose of 7mls of keppra. Since
>> we
>> added the new medicine the side effects of the keppra like her very bad
>> and tramatic axiety, emotionalness, moody swings etc have been less and
>> shes doing so good. I mean she is totally a differant child. I talked to
>> her epitologist via phone last Wednesday and we had the pediatricians
>> report that Karon is doing much better on the medicine and we all were
>> in
>> agreement to start wheaning her off of the keppra at this time 1ml less
>> at
>> a time per weekly. As in last Wednesday we went from 8mls twice daily to
>> mls twice daily and then tomorrow will be 6 mls twice daily and
>> continues
>> for 6 more weeks till shes totally off. Since we added the zonisamide
>> four
>> weeks ago tomorrow she has been seizure free except we speculate that
>> she
>> did have a bad seizure we didn't catch at some point in time but other
>> then that seizure free and a totally differant child.
>> My question is:
>> she came to me last night and her arms and hands were jerking. Not
>> really
>> fast or hard liek her grandmal but jerking forcefully. I made sure she
>> had
>> her meds on time and everything. She was standing right in front of me
>> talking and able to walk and function like normal except her arms and
>> hands were jerking. Then when she got in my bed her feet and legs were
>> doing the same thing. Shes been checked by her peditrician and my
>> daughter
>> is pretty much on what she calls lock down. We aren't leaving the house
>> etc and shes limited to where in the house she can go without her
>> seizure
>> alert/service dog or her brother, me or her Pawpaw (my dad). We have
>> been
>> told to watch and observe which is fine with us we dont want to medicate
>> more then what we have. And we are waiting on a call from her
>> epitologist.
>> Just wondering if anyone has been throught his or not?
>>
>> Sorry its so long to explain!
>> Thanks!
>> ELizabeth
>>
>>
>>
>>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>

[Non-text portions of this message have been removed]

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Posted by at No comments:

Re: [epilepsy] EP website/ info



Elizabeth,

There are at least 25 different kinds of szs and about
that many meds. I like to type Epilepsy Ontario
into my Yahoo tool bar. That website has a lot of info.

For the szs -- there is a list of them and whichever one you
click-- a description will come up and tell you about it. there
is a lot more info there also.

Millie

> yes shes been weaning off for a week tomorrow. Im not really worried about
> the weaning and getting off the keppra totally. Shes been on it for two
> years and what the side effects have been its worth her getting off ot it.
> The pros out weight the cons of getting her off of it. Tegratol didn't
> help and made her loose her hair and have a rash, depakote made her gain
> 15 pounds and didn't help that much either. Keppra has been good but its
> not stopping the seizure and the side effects are beginign to get worse
> which happens when she is getting immune to her drugs.
> Im wondering more about the jerking in her arms and legs then anything
> else while Im waiting on her epitologist to call me back!
> Thanks!
> Elizabeth
>
>  
>
>
>
> ________________________________
> From: "mylmy@bnin.net" <mylmy@bnin.net>
> To: epilepsy@yahoogroups.com
> Sent: Tuesday, June 30, 2009 8:49:12 PM
> Subject: Re: [epilepsy] Question: withdraws
>
>
>
>
>
> Elizabeth,
>
> Is your daughter going off of Keppra now? Maybe she
> needs both meds. Every person has to find their own med.
> Just because Dilantin and Phenabarb work for me doesn't
> mean they will work for anybody else.
>
> Most of us have found that brand name meds work better that
> generic. I know brand name Dilantin is stronger than the
> generic.
>
> Millie
>
>> I ushually dont post on here but try to help other with what I have
>> learned from the past 6 and half years of my daughter having ep.
>> My 6 and half year old daughter has had ep since the age of 2 weeks. We
>> live in Texas we have been to Lubbock, san Antonio, San Angelo, Dallas
>> and
>> Fort Worth and Austin to see nuerologist. Till we finally got to go to
>> Houston to Texas Children's Hospital to see an epitologist. We finally
>> got
>> a diagnoses last August that yes its ep and that its because of her
>> metabolism. My daughter has been on Keppra 8 ml am and pm and Vitamin
>> B-6
>> (for the emotional side effects of keppra)since August and shes been on
>> keppra in general for two years. We just went and saw her epitologist
>> and
>> we decided that if Keppra was going to be her drug of choice to stop the
>> seizures it would have already done it. So we added zonisamide (geniric
>> of
>> zonagram) 100 mg at night with a smaller dose of 7mls of keppra. Since
>> we
>> added the new medicine the side effects of the keppra like her very bad
>> and tramatic axiety, emotionalness, moody swings etc have been less and
>> shes doing so good. I mean she is totally a differant child. I talked to
>> her epitologist via phone last Wednesday and we had the pediatricians
>> report that Karon is doing much better on the medicine and we all were
>> in
>> agreement to start wheaning her off of the keppra at this time 1ml less
>> at
>> a time per weekly. As in last Wednesday we went from 8mls twice daily to
>> mls twice daily and then tomorrow will be 6 mls twice daily and
>> continues
>> for 6 more weeks till shes totally off. Since we added the zonisamide
>> four
>> weeks ago tomorrow she has been seizure free except we speculate that
>> she
>> did have a bad seizure we didn't catch at some point in time but other
>> then that seizure free and a totally differant child.
>> My question is:
>> she came to me last night and her arms and hands were jerking. Not
>> really
>> fast or hard liek her grandmal but jerking forcefully. I made sure she
>> had
>> her meds on time and everything. She was standing right in front of me
>> talking and able to walk and function like normal except her arms and
>> hands were jerking. Then when she got in my bed her feet and legs were
>> doing the same thing. Shes been checked by her peditrician and my
>> daughter
>> is pretty much on what she calls lock down. We aren't leaving the house
>> etc and shes limited to where in the house she can go without her
>> seizure
>> alert/service dog or her brother, me or her Pawpaw (my dad). We have
>> been
>> told to watch and observe which is fine with us we dont want to medicate
>> more then what we have. And we are waiting on a call from her
>> epitologist.
>> Just wondering if anyone has been throught his or not?
>>
>> Sorry its so long to explain!
>> Thanks!
>> ELizabeth
>>
>>
>>
>>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>

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Posted by at No comments:

Re: [epilepsy] Question: withdraws



Thank you Tammy. I forgot to mention that my daughter has been off all her meds lots of times before for hospitializations for veegs. We had more of the emotional and tiredness. Maybe it was a weird kind of seizure or something who knows.

 

________________________________
From: uniquepnk tds.net <Uniquepnk@tds.net>
To: epilepsy@yahoogroups.com
Sent: Tuesday, June 30, 2009 9:01:51 PM
Subject: Re: [epilepsy] Question: withdraws

Elizabeth,

I have been on a lot of the different kinds of seizure medicines. My
neurologist has taken me off the medication before I went in the hospital to
monitor the seizures. The withdrawls are awful. When I first started coming
off the Keppra, it made me sick to my stomach and I had cold sweats.I hope
your daughter finds the right kind of medicine that helps her without the
side effects being so bothersome. Take care.

Tammy

On Tue, Jun 30, 2009 at 9:23 PM, elizabethkaron <elizabethkaron@ yahoo.com>wrote:

>
>
> I ushually dont post on here but try to help other with what I have learned
> from the past 6 and half years of my daughter having ep.
> My 6 and half year old daughter has had ep since the age of 2 weeks. We
> live in Texas we have been to Lubbock, san Antonio, San Angelo, Dallas and
> Fort Worth and Austin to see nuerologist. Till we finally got to go to
> Houston to Texas Children's Hospital to see an epitologist. We finally got a
> diagnoses last August that yes its ep and that its because of her
> metabolism. My daughter has been on Keppra 8 ml am and pm and Vitamin B-6
> (for the emotional side effects of keppra)since August and shes been on
> keppra in general for two years. We just went and saw her epitologist and we
> decided that if Keppra was going to be her drug of choice to stop the
> seizures it would have already done it. So we added zonisamide (geniric of
> zonagram) 100 mg at night with a smaller dose of 7mls of keppra. Since we
> added the new medicine the side effects of the keppra like her very bad and
> tramatic axiety, emotionalness, moody swings etc have been less and shes
> doing so good. I mean she is totally a differant child. I talked to her
> epitologist via phone last Wednesday and we had the pediatricians report
> that Karon is doing much better on the medicine and we all were in agreement
> to start wheaning her off of the keppra at this time 1ml less at a time per
> weekly. As in last Wednesday we went from 8mls twice daily to mls twice
> daily and then tomorrow will be 6 mls twice daily and continues for 6 more
> weeks till shes totally off. Since we added the zonisamide four weeks ago
> tomorrow she has been seizure free except we speculate that she did have a
> bad seizure we didn't catch at some point in time but other then that
> seizure free and a totally differant child.
> My question is:
> she came to me last night and her arms and hands were jerking. Not really
> fast or hard liek her grandmal but jerking forcefully. I made sure she had
> her meds on time and everything. She was standing right in front of me
> talking and able to walk and function like normal except her arms and hands
> were jerking. Then when she got in my bed her feet and legs were doing the
> same thing. Shes been checked by her peditrician and my daughter is pretty
> much on what she calls lock down. We aren't leaving the house etc and shes
> limited to where in the house she can go without her seizure alert/service
> dog or her brother, me or her Pawpaw (my dad). We have been told to watch
> and observe which is fine with us we dont want to medicate more then what we
> have. And we are waiting on a call from her epitologist.
> Just wondering if anyone has been throught his or not?
>
> Sorry its so long to explain!
> Thanks!
> ELizabeth
>
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

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Posted by at No comments:

Re: [epilepsy] Dogs and seizures



I wanted to add one thing to the message below if thats okay. The whole thing about having a dog thatalready detects a seizure and you own them its hard to find an organization or trainer that can certify your dog. A lot of people think its easy but its not we went two years until I found a trainer to certify my daughters dog. I do know of one if you are interested in maybe geting your dog certified and he is pretty decently priced.
elizabeth

________________________________
From: "mylmy@bnin.net" <mylmy@bnin.net>
To: epilepsy@yahoogroups.com
Sent: Tuesday, June 30, 2009 9:11:37 PM
Subject: Re: [epilepsy] Dogs and seizures

Amanda

I don't know more about dogs than what I read. My guess is
that you are right. I do know that there are dogs who are
trained to know when you have a sz. Jewl, our moderator, has
her second one and there are a few others who have them in
the group.

If you have a dog that recognizes szs and hasn't been trained
-- that will save you money and time of waitng for a dog.

Millie

Millie

>
> As you all know my daughter had a breakthrough seizure. I was wondering if
> dogs can sense when it happens. The night my daughter had her seizure, our
> dog sat at the end of the bed at looked at her door all night! It scared
> me cause my hubby is deployed, so I am home alone! I have herd of dogs
> sensing seizures. Has this happened to any of you??
>
>
> Amanda
>
>
>
>
>

[Non-text portions of this message have been removed]

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Posted by at No comments:

Re: [epilepsy] Dogs and seizures



Amanda

I don't know more about dogs than what I read. My guess is
that you are right. I do know that there are dogs who are
trained to know when you have a sz. Jewl, our moderator, has
her second one and there are a few others who have them in
the group.

If you have a dog that recognizes szs and hasn't been trained
-- that will save you money and time of waitng for a dog.

Millie

Millie

>
> As you all know my daughter had a breakthrough seizure. I was wondering if
> dogs can sense when it happens. The night my daughter had her seizure, our
> dog sat at the end of the bed at looked at her door all night! It scared
> me cause my hubby is deployed, so I am home alone! I have herd of dogs
> sensing seizures. Has this happened to any of you??
>
>
> Amanda
>
>
>
>
>

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Posted by at No comments:

RE: [epilepsy] Dogs and seizures



Amanda,

Yes, they sure can. I am so happy for your daughter and you.

I have a German Sheppard who is my seizure alert service dog. He is my
second my fist Tagert passed away in 05 and I waited about 2 1/2 years for
Rocky. Both were trained at two different organizations for me.

Rocky goes everywhere I go. Mall, restaurants, movies, concerts, planes
etc. Some do have a instinct that they pick up on it by themselves.

If you can get him/her to behave properly in public, have obedience training
and pas the Canine good citizen test. Than you can take the dog with her
where she goes, even to school or work.
I forget how old your daughter is.

I own a seizure alert dog support group if you would like to join to find
out more about the dogs and how yours can become a service dog.
http://groups.yahoo.com/group/seizurealertdogs/

Jewl, TX

Information on Seizure Response/Alert Dogs

http://www.homestea <blocked::http://www.homestead.com/Tagert/MsJewl.html>
d.com/Tagert/MsJewl.html

[Non-text portions of this message have been removed]

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Posted by at No comments:

Re: [epilepsy] Breakthrough Seizures



Millie,
Exactly- what are they waiting for...lol! They have nothing to compare this tumor to, and think it may be a malformation of the brain that has slowly grown since birth. They have no idea how fast it may grow, or if it will continue to grow. The second reason, is that to operate on the tumor only has a 35% survival rate. The tumor is in the midline along the frontal lobes with intrusion of the corpus callosum (center of the brain).
 
His seizures are definitely related to the tumor, but his neurologist and neurosurgeon are sure that a wait and see attitude is best in this case. So, we have to wait until July 29 for the results. At this time he will see 3 different doctors at the brain tumor clinic at Children's Hospital in Milwaukee, WI. This is a very long time to wait when we are talking about the lives of our children.
 
I have been an emotional mess, but try to stay strong during the day for the rest of my family! You are so correct, I have learned so much in the past two months, and I am always eager to learn more. So if there is anything else you would like to share- that would mean so much to me!
 
Thank you,
Susan

--- On Tue, 6/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:

From: mylmy@bnin.net <mylmy@bnin.net>
Subject: Re: [epilepsy] Breakthrough Seizures
To: epilepsy@yahoogroups.com
Date: Tuesday, June 30, 2009, 10:01 PM

Susan,

I don't know anything about brain tumors. What are they waiting for?
Are they expecting to operate or that it will shrink or grow?

I seems that if he is having szs -- they would be doing something.
But like I say-- I don't know anything about tumors.

When something like szs some into your life you do learn a lot fast.

Millie

> Millie,
> I have been here for about a month, but do not get the chance to post
> much. I have six beautiful children that range in ages from 11 to four
> year old twins! I have five sons and one beautiful daughter! In March my 8
> year old son had a seizure, and then 6 days later he had another. We
> rushed him to the hospital because it was very scary, and the pediatrician
> told us after the first seizure that is what we should do. At the local ER
> they did a CT scan and found a brain tumor, he was immediately rushed to
> Children's Hospital in Milwaukee. He had another CT and an MRI, plus they
> started him on AED's.
>  
> Since April he has had breakthrough seizures about every 14 days on the
> dot. He gets a stomach, and that is the only pre-cursor we have to him
> having a seizure. He has a repeat MRI on July 24 to determine if the tumor
> has grown at all. He has been through so much in the last two months, it
> is crazy how much your life can change in a matter of a few minutes.
>  
> This group is great, and there is a lot of wonderful information here!
> Thank you so much for the warm welcome!
>  
> Susan
>
> --- On Tue, 6/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>
>
> From: mylmy@bnin.net <mylmy@bnin.net>
> Subject: Re: [epilepsy] Breakthrough Seizures
> To: epilepsy@yahoogroup s.com
> Date: Tuesday, June 30, 2009, 9:17 PM
>
>
>
>
>
>
>
>
> susan,
>
> Not sure if you are new but if you are Welcome;
>
> I was 30 when I was dignosed (DX) with EP. I had 3 daughters,
> 2, 4, and 6 plus a husband(ex now). That was 47 years ago.
>
> I have learned a lot in this group.
>
> Millie
>
>> Amanda,
>> My son has epilepsy, and he is currently taking 775 mg of Depakote a
>> day.
>> He has breakthrough seizures about every two weeks, and they are also in
>> his sleep. They have never lasted more than 3 minutes, but yes, they are
>> very very scary! My son has complex partial seizures, and has had one
>> petit mal about two weeks ago.
>>  
>> He just had a 24 hour EEG which showed no under-lying seizure disorder
>> in
>> his sleep, but he seems to have a breakthrough seizure every 14 days. My
>> son is 8, and was diagnosed in April with epilepsy and a brain tumor.
>> Best
>> of luck to you! Would love to talk more!
>>  
>> Thank you,
>> Susan
>>
>> --- On Tue, 6/30/09, Amanda Rainey <a_rainey121708@ yahoo.com> wrote:
>>
>>
>> From: Amanda Rainey <a_rainey121708@ yahoo.com>
>> Subject: [epilepsy] Breakthrough Seizures
>> To: "epilepsy" <epilepsy@yahoogrou p s.com>
>> Date: Tuesday, June 30, 2009, 8:39 PM
>>
>>
>>
>>
>>
>>
>>
>>
>> Hi all,
>>
>>     Just wondering if any of you have had a " breakthrough" seizure. My
>> daughter had one on Saturday that sent her to the ER. Now they have her
>> on
>> her regular meds (Tegretol) 1tsp 2x a day and then a 1/2 tsp around 1400
>> (2pm). It was a grand mal seizure in her sleep. I HATE those, they scare
>> me so bad. If any of you have had these I would love to know. Thank you
>>
>> Amanda
>>
>> [Non-text portions of this message have been removed]
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> [Non-text portions of this message have been removed]
>>
>>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>

[Non-text portions of this message have been removed]

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Posted by at No comments:

Re: [epilepsy] Dogs and seizures



Hi Amanda,
Im going to share an article with you! Its my daughter and her seizure alert/service dog. And to answer your question dogs know ushually when something is not right not nessacerall meaning that the dog knew your daughter was going to have a seizure but the fact that something wasn't quite right. Through my daughter and her dog (we owned him 2 years till we got him certified this past Feb) I am now a service /seizure alert dog trainer for kids! Loving every bit of it too! Animals are awesome!
You can email me privatelyif oyu like also. But Ill send the link you can go to see the story of my daughter and her dog.
Best of Luck to you and your daughter!
Elizabeth

http://www.amarillo.com/stories/020809/new_12532895.shtml

________________________________
From: Amanda Rainey <a_rainey121708@yahoo.com>
To: "epilepsy@yahoogroups.com" <epilepsy@yahoogroups.com>
Sent: Tuesday, June 30, 2009 8:49:24 PM
Subject: [epilepsy] Dogs and seizures

As you all know my daughter had a breakthrough seizure. I was wondering if dogs can sense when it happens. The night my daughter had her seizure, our dog sat at the end of the bed at looked at her door all night! It scared me cause my hubby is deployed, so I am home alone! I have herd of dogs sensing seizures. Has this happened to any of you??

Amanda

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