Re: Fw: Google Alert - epilepsy

[Guest guest]

Thanks for the info. " Levetiracetam " is the generic

name for Keppra.

Best wishes,

Pepper

--- <mindcb45@...> wrote:

> FYI for the group.

>

>

>

> Google News Alert for: epilepsy

> No More Seizures? New Drug Holds Promise for

> Epilepsy Patients

> Newswise (press release) - USA

> Newswise — People with newly diagnosed epilepsy

> experienced few, if any, seizures while taking the

> drug levetiracetam as a single therapy, giving hope

> to ...

> Help Rhiannon help others with epilepsy, seizures

> Edmond Sun - OK,USA

> A traumatic birth caused the sixth-grader at Deer

> Creek Middle School to have seizures due to

> epilepsy. An emergency cesarean became necessary for

> ...

>

>

> This once a day Google Alert is brought to you by

> Google.

> Remove this alert.

> Create another alert.

> Manage your alerts.

>

> [Non-text portions of this message have been

> removed]

>

>

Alternative Epilepsy Treatments

http://epilepsyalternatives.freeservers.com

________________________________________________________________________________\

____

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and hotel

bargains.

http://farechase./promo-generic-14795097

[Guest guest]

Uh, I realize we may be of the minority here, but Keppra increased seizure

activity as doses increased in our son and didn't go away until we started

Topamax and weaned completely off Keppra. Our neurologist saw another case

just like ours...so that makes 2.

On 2/5/07, Pepper <hey_pep@...> wrote:

>

> Thanks for the info. " Levetiracetam " is the generic

> name for Keppra.

>

> Best wishes,

> Pepper

> --- <mindcb45@... <mindcb45%40>> wrote:

>

> > FYI for the group.

> >

> >

> >

> > Google News Alert for: epilepsy

> > No More Seizures? New Drug Holds Promise for

> > Epilepsy Patients

> > Newswise (press release) - USA

> > Newswise — People with newly diagnosed epilepsy

> > experienced few, if any, seizures while taking the

> > drug levetiracetam as a single therapy, giving hope

> > to ...

> > Help Rhiannon help others with epilepsy, seizures

> > Edmond Sun - OK,USA

> > A traumatic birth caused the sixth-grader at Deer

> > Creek Middle School to have seizures due to

> > epilepsy. An emergency cesarean became necessary for

> > ...

> >

> >

> > This once a day Google Alert is brought to you by

> > Google.

> > Remove this alert.

> > Create another alert.

> > Manage your alerts.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> Alternative Epilepsy Treatments

> http://epilepsyalternatives.freeservers.com

>

> __________________________________________________________

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel sites to find flight and

> hotel bargains.

> http://farechase./promo-generic-14795097

>

>

[Guest guest]

Helen,

I was not endorsing Keppra. It did not work for me either. And I went into it

with very high hopes and a very positive attitude. It made me extremely

depressed and tearful. Not for everyone not doubt.

Re: [ ] Fw: Google Alert - epilepsy

Uh, I realize we may be of the minority here, but Keppra increased seizure

activity as doses increased in our son and didn't go away until we started

Topamax and weaned completely off Keppra. Our neurologist saw another case

just like ours...so that makes 2.

On 2/5/07, Pepper <hey_pep@...> wrote:

>

> Thanks for the info. " Levetiracetam " is the generic

> name for Keppra.

>

> Best wishes,

> Pepper

> --- <mindcb45@... <mindcb45%40>> wrote:

>

> > FYI for the group.

> >

> >

> >

> > Google News Alert for: epilepsy

> > No More Seizures? New Drug Holds Promise for

> > Epilepsy Patients

> > Newswise (press release) - USA

> > Newswise — People with newly diagnosed epilepsy

> > experienced few, if any, seizures while taking the

> > drug levetiracetam as a single therapy, giving hope

> > to ...

> > Help Rhiannon help others with epilepsy, seizures

> > Edmond Sun - OK,USA

> > A traumatic birth caused the sixth-grader at Deer

> > Creek Middle School to have seizures due to

> > epilepsy. An emergency cesarean became necessary for

> > ...

> >

> >

> > This once a day Google Alert is brought to you by

> > Google.

> > Remove this alert.

> > Create another alert.

> > Manage your alerts.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> Alternative Epilepsy Treatments

> http://epilepsyalternatives.freeservers.com

>

> __________________________________________________________

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel sites to find flight and

> hotel bargains.

> http://farechase./promo-generic-14795097

>

>

[Guest guest]

Keppra did not work for us too+caused aggressive behavior.

J.Naleid

On 2/5/07 4:54 PM, " Helena Macy " <helenasjmacy@...> wrote:

> Uh, I realize we may be of the minority here, but Keppra increased seizure

> activity as doses increased in our son and didn't go away until we started

> Topamax and weaned completely off Keppra. Our neurologist saw another case

> just like ours...so that makes 2.

>

> On 2/5/07, Pepper <hey_pep@...> wrote:

>>

>> Thanks for the info. " Levetiracetam " is the generic

>> name for Keppra.

>>

>> Best wishes,

>> Pepper

>> --- <mindcb45@... <mindcb45%40>> wrote:

>>

>>> FYI for the group.

>>>

>>>

>>>

>>> Google News Alert for: epilepsy

>>> No More Seizures? New Drug Holds Promise for

>>> Epilepsy Patients

>>> Newswise (press release) - USA

>>> Newswise — People with newly diagnosed epilepsy

>>> experienced few, if any, seizures while taking the

>>> drug levetiracetam as a single therapy, giving hope

>>> to ...

>>> Help Rhiannon help others with epilepsy, seizures

>>> Edmond Sun - OK,USA

>>> A traumatic birth caused the sixth-grader at Deer

>>> Creek Middle School to have seizures due to

>>> epilepsy. An emergency cesarean became necessary for

>>> ...

>>>

>>>

>>> This once a day Google Alert is brought to you by

>>> Google.

>>> Remove this alert.

>>> Create another alert.

>>> Manage your alerts.

>>>

>>> [Non-text portions of this message have been

>>> removed]

>>>

>>>

>>

>> Alternative Epilepsy Treatments

>> http://epilepsyalternatives.freeservers.com

>>

>> __________________________________________________________

>> Finding fabulous fares is fun.

>> Let FareChase search your favorite travel sites to find flight and

>> hotel bargains.

>> http://farechase./promo-generic-14795097

>>

>>

>

>

>

[Guest guest]

Helen,

Everything I ever took for seizures ended up with my seizures

getting worse. That's why I finally pitched the drugs and found other

ways to bring them under control. One issue that is not much

discussed is how the side effects of the drugs may end up lowering

the seizure threshold. For example, if the drug you are using is

affecting your folic acid levels, this in turn might lead to the

symptoms seen with low levels of this vitamin, which may affect your

seizure threshold. This may be a factor with other drug nutrient

interactions.

Nor can you safely just take a vitamin to offset what a drug may be

depleting. Taking folic acid with dilatin can interfere with how the

drug works. The internet is again a good resource for finding

professional assistance on these issues. We don't need to feel

powerless for lack of information.

I just feel like crying at some of the stories I hear from others

with seizure disorders, parents thinking their kids have behavioral

or developmental disorders, when their problems may be due to the

drugs they are taking, and adults who think they have mental

problems, not realizing their symptoms may be triggered by the way

their AEDs are affecting them.

One very good thing about the internet is the ability to do our

own research about medications and their side effects. Below is a

link to an article just on phenobarbitol with a long discussion on

nutrient interactions. Anyone reading this can take any of the

nutrients listed in the article and do a search, like on google for

that nutrient and whatever drug they are taking. For example, the

article has a section on vitamin B6. Anyone can do a search

on " vitamin B6 " and their own drug. Or on any symptom,

like " cognitive function " " vitamin B6 " ,or some other symptom. Having

that knowledge gives you more of the information needed to decide

whether or not a drug is safe to take, and if so, how to minimize any

possible negative side effects.

Zoe

http://home.caregroup.org/clinical/altmed/interactions/Drugs/Phenobarb

ital.htm

>

> Uh, I realize we may be of the minority here, but Keppra increased

seizure

> activity as doses increased in our son and didn't go away until we

started

> Topamax and weaned completely off Keppra. Our neurologist saw

another case

> just like ours...so that makes 2.

[Guest guest]

How about taking folic acid and Trileptal/Clonazepam combo?

Would link provided work for it too?

Thank you Zoe!

J.Naleid

On 2/5/07 8:44 PM, " zoe88025 " <Zll51@...> wrote:

>

>

>

>

>

>

> Helen,

> Everything I ever took for seizures ended up with my seizures

> getting worse. That's why I finally pitched the drugs and found other

> ways to bring them under control. One issue that is not much

> discussed is how the side effects of the drugs may end up lowering

> the seizure threshold. For example, if the drug you are using is

> affecting your folic acid levels, this in turn might lead to the

> symptoms seen with low levels of this vitamin, which may affect your

> seizure threshold. This may be a factor with other drug nutrient

> interactions.

> Nor can you safely just take a vitamin to offset what a drug may be

> depleting. Taking folic acid with dilatin can interfere with how the

> drug works. The internet is again a good resource for finding

> professional assistance on these issues. We don't need to feel

> powerless for lack of information.

> I just feel like crying at some of the stories I hear from others

> with seizure disorders, parents thinking their kids have behavioral

> or developmental disorders, when their problems may be due to the

> drugs they are taking, and adults who think they have mental

> problems, not realizing their symptoms may be triggered by the way

> their AEDs are affecting them.

> One very good thing about the internet is the ability to do our

> own research about medications and their side effects. Below is a

> link to an article just on phenobarbitol with a long discussion on

> nutrient interactions. Anyone reading this can take any of the

> nutrients listed in the article and do a search, like on google for

> that nutrient and whatever drug they are taking. For example, the

> article has a section on vitamin B6. Anyone can do a search

> on " vitamin B6 " and their own drug. Or on any symptom,

> like " cognitive function " " vitamin B6 " ,or some other symptom. Having

> that knowledge gives you more of the information needed to decide

> whether or not a drug is safe to take, and if so, how to minimize any

> possible negative side effects.

> Zoe

> http://home.caregroup.org/clinical/altmed/interactions/Drugs/Phenobarb

> ital.htm

>

>

>> >

>> > Uh, I realize we may be of the minority here, but Keppra increased

> seizure

>> > activity as doses increased in our son and didn't go away until we

> started

>> > Topamax and weaned completely off Keppra. Our neurologist saw

> another case

>> > just like ours...so that makes 2.

>

>

>

[Guest guest]

I take folic acid and Trileptal and have not problems. Check the research on

Dilantin and folic acid. There is a balance there where it is needed and has

shown in some cases to lower the seizure threshold. Other reports show that

folic acid is needed to prevent seizures. Zoe is right about the medications

eventually causing more seizures if they deplete the nutrients necessary to

prevent or add to the balance necessary to prevent seizures. Depakote is one of

them. The research on that medication and its affects on nutrients is in the

main stream publications that I have that are used in medical schools.

Re: [ ] Re: Fw: Google Alert - epilepsy

How about taking folic acid and Trileptal/Clonazepa m combo?

Would link provided work for it too?

Thank you Zoe!

J.Naleid

On 2/5/07 8:44 PM, " zoe88025 " <Zll51hotmail (DOT) com> wrote:

>

>

>

>

>

>

> Helen,

> Everything I ever took for seizures ended up with my seizures

> getting worse. That's why I finally pitched the drugs and found other

> ways to bring them under control. One issue that is not much

> discussed is how the side effects of the drugs may end up lowering

> the seizure threshold. For example, if the drug you are using is

> affecting your folic acid levels, this in turn might lead to the

> symptoms seen with low levels of this vitamin, which may affect your

> seizure threshold. This may be a factor with other drug nutrient

> interactions.

> Nor can you safely just take a vitamin to offset what a drug may be

> depleting. Taking folic acid with dilatin can interfere with how the

> drug works. The internet is again a good resource for finding

> professional assistance on these issues. We don't need to feel

> powerless for lack of information.

> I just feel like crying at some of the stories I hear from others

> with seizure disorders, parents thinking their kids have behavioral

> or developmental disorders, when their problems may be due to the

> drugs they are taking, and adults who think they have mental

> problems, not realizing their symptoms may be triggered by the way

> their AEDs are affecting them.

> One very good thing about the internet is the ability to do our

> own research about medications and their side effects. Below is a

> link to an article just on phenobarbitol with a long discussion on

> nutrient interactions. Anyone reading this can take any of the

> nutrients listed in the article and do a search, like on google for

> that nutrient and whatever drug they are taking. For example, the

> article has a section on vitamin B6. Anyone can do a search

> on " vitamin B6 " and their own drug. Or on any symptom,

> like " cognitive function " " vitamin B6 " ,or some other symptom. Having

> that knowledge gives you more of the information needed to decide

> whether or not a drug is safe to take, and if so, how to minimize any

> possible negative side effects.

> Zoe

> http://home. caregroup. org/clinical/ altmed/interacti ons/Drugs/ Phenobarb

> ital.htm

>

>

>> >

>> > Uh, I realize we may be of the minority here, but Keppra increased

> seizure

>> > activity as doses increased in our son and didn't go away until we

> started

>> > Topamax and weaned completely off Keppra. Our neurologist saw

> another case

>> > just like ours...so that makes 2.

>

>

>

[Guest guest]

Your pharmacist would likely be able to get this information for

you. Check out the link, but always question how reliable the

information is and double check with other sources.

Zoe

> >> >

> >> > Uh, I realize we may be of the minority here, but Keppra

increased

> > seizure

> >> > activity as doses increased in our son and didn't go away

until we

> > started

> >> > Topamax and weaned completely off Keppra. Our neurologist saw

> > another case

> >> > just like ours...so that makes 2.

> >

> >

> >

>

>

>

>

>

[Guest guest]

,

Agreed, it is important to check the research.I got my information

from the National Library of Medicine, but that isn't the last word

either. There is no " last word " on a lot of this stuff, so we need to

keep on our toes and be ready to change our views as we get new

information. What resources do you use? Can you post them here for

the group, with links if they are available online?

Zoe

MedlinePlus Herbs and Supplements: Folate (folic acid)There is some

evidence that folic acid supplements reduce the efficacy of ...

Phenytoin (Dilantin®): Folic acid, in doses of 1mg per day or more,

http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-

folate.html

> >> >

> >> > Uh, I realize we may be of the minority here, but Keppra

increased

> > seizure

> >> > activity as doses increased in our son and didn't go away

until we

> > started

> >> > Topamax and weaned completely off Keppra. Our neurologist saw

> > another case

> >> > just like ours...so that makes 2.

> >

> >

> >

>

>

[Guest guest]

i am so thankful for this website. my son has been on meds. going on

5+ years. he's a strange seizure case-he's " labeled " lennox gasteau

(sp?) but he can walk/talk-he has not deteriorated quickly like so

many other kids unfortunately have-so he's got that label plus the

misc. unknown seizure lable as well. he's also currently on the

ketogenic diet. i'm convinced that if he were allowed to eat regular

foods with suppliments he might settle down a bit. we have a dr. appt.

again in about a week to talk to him again. he wants him to stay on

the diet until 6th grade! (he's a 2nd grader now.) and of course

keep-upping the meds if needed! it's hard to convince his doc. to

change, he's not really up on this stuff!

thanks for your info. if you have any other websites, i'd be happy to

check them out. we're new to this game!

jenny

> >

> > Uh, I realize we may be of the minority here, but Keppra increased

> seizure

> > activity as doses increased in our son and didn't go away until we

> started

> > Topamax and weaned completely off Keppra. Our neurologist saw

> another case

> > just like ours...so that makes 2.

>

[Guest guest]

was your son evaluated for inborn errors of metabolism?

This link is to an article about the ketogenic diet and you likely

know most of it, but it also mentions contraindications and I

wondered if this may apply to your son.

http://www.neuro.wustl.edu/epilepsy/pediatric/articleKetogenicDiet.htm

l

Has your doctor talked to you about the long term side effects of

the diet? Are you in a situation where you can get a second opinion

to get your concerns addressed?

This is about an 80 page document with a chapter on

neurology\childhood seizures that may give you more information.

File Format: PDF/Adobe Acrobat

inborn errors of metabolism: fatty acid oxidation defects,

galactosemia. Clinical Findings ... Lennox-Gastaut. • onset commonly

< 5 years of age ...

http://basilmedicine.tripod.com/sitebuildercontent/sitebuilderfiles/pe

diatrics-mccqe-2000.pdf

Zoe

> > >

> > > Uh, I realize we may be of the minority here, but Keppra

increased

> > seizure

> > > activity as doses increased in our son and didn't go away until

we

> > started

> > > Topamax and weaned completely off Keppra. Our neurologist saw

> > another case

> > > just like ours...so that makes 2.

> >

>