Re: TRILEPTAL

[Guest guest]

,

This kind of thing really burns me up! You're not supposed to take

Trileptal during pregnancy since it can cause serious harm to an

unborn baby, and you are not supposed to breast feed while taking it

for the same reason. So why is it ok to give it to a BABY directly?

I'm very glad to hear she is changing doctors.

> Hello all,

>

> I have a question.

>

> My best friends son is 11 months. He doesn't crawl, sit, etc. He

> doesn't use the left side of his body. She finally took him to a

> neuro.

> and they told her that he had a stroke and that he does have about 2

> seizures a day (she has noticed). Which is why he doesn't use the left

> side of his body. They prescribed him Trileptal. I just looked on

> thier

> website and it states for children 4 years or older. Umm he is only 11

> months. Do any of you know about this medicine?

>

> Oh by the way, she is changing the neuro. He didn't explain

> anything to

> her regarding a stroke or seizures. She is completely lost and scared.

>

> Thanks,

>

>

>

> ------------------------------------

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe@...! Groups Links

>

>

>

" The intuitive mind is a sacred gift and the rational mind is a

faithful servant. We have created a society that honors the servant and

has forgotten the gift. " - Albert Einstein

[Guest guest]

I took Trileptal for a while, it's, like, the safest

anticonvulsant. With kids who have had strokes they

can't do Depakote because sometimes strokes are

related to lactic acid & Depakote raises lactic acid,

phenobarbital has fallen way out of favor (it's what

they used to use for babies), um...Tegretol is

basically Trileptal with more side effects, Keppra is

a smidge safer but they have less data on it and it

tastes worse in liquid form...etc. I know too much

about antiepileptics, there are like 10 more.

Trileptal is, like, the best starter med unless you're

having drop seizures.

Since VERY FEW medicines are officially on label for

babies they don't really have a choice in the 4 and

over thing. It's been tested but not enough for the

official FDA nod yet. Regarding the stroke, did they

say WHEN he had it?

Kassiane

--- nevaehlopez6 wrote:

> Hello all,

>

> I have a question.

>

> My best friends son is 11 months. He doesn't crawl,

> sit, etc. He

> doesn't use the left side of his body. She finally

> took him to a neuro.

> and they told her that he had a stroke and that he

> does have about 2

> seizures a day (she has noticed). Which is why he

> doesn't use the left

> side of his body. They prescribed him Trileptal. I

> just looked on thier

> website and it states for children 4 years or older.

> Umm he is only 11

> months. Do any of you know about this medicine?

>

> Oh by the way, she is changing the neuro. He didn't

> explain anything to

> her regarding a stroke or seizures. She is

> completely lost and scared.

>

> Thanks,

>

>

>

________________________________________________________________________________\

____

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know-it-all with Yahoo! Mobile. Try it now.

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[Guest guest]

pssst , that's Tegretol *grin*. Trileptal is on

the " ok if your other choice is seizures " list. I know

someone who was IN that study and her baby is

beautiful.

--- cathylynn2 wrote:

> ,

>

> This kind of thing really burns me up! You're not

> supposed to take

> Trileptal during pregnancy since it can cause

> serious harm to an

> unborn baby, and you are not supposed to breast feed

> while taking it

> for the same reason. So why is it ok to give it to a

> BABY directly?

> I'm very glad to hear she is changing doctors.

>

>

>

>

>

> > Hello all,

> >

> > I have a question.

> >

> > My best friends son is 11 months. He doesn't

> crawl, sit, etc. He

> > doesn't use the left side of his body. She finally

> took him to a

> > neuro.

> > and they told her that he had a stroke and that he

> does have about 2

> > seizures a day (she has noticed). Which is why he

> doesn't use the left

> > side of his body. They prescribed him Trileptal. I

> just looked on

> > thier

> > website and it states for children 4 years or

> older. Umm he is only 11

> > months. Do any of you know about this medicine?

> >

> > Oh by the way, she is changing the neuro. He

> didn't explain

> > anything to

> > her regarding a stroke or seizures. She is

> completely lost and scared.

> >

> > Thanks,

> >

> >

> >

> > ------------------------------------

> >

> > Autism_in_Girls-subscribe

> > ------------------------

> > Autism_in_Girls-unsubscribe@...!

> Groups Links

> >

> >

> >

>

> " The intuitive mind is a sacred gift and the

> rational mind is a

> faithful servant. We have created a society that

> honors the servant and

> has forgotten the gift. " - Albert Einstein

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Kassi,

I'm WAY sure you more more about this than I... I'm just repeating

what I've heard from a few trusted medical colleagues. Plus, I've

read warnings like this on several occasions:

" FDA pregnancy category D. This medication can cause harm to an

unborn baby. Trileptal should not be used during pregnancy, but

taking the medicine can make birth control pills less effective. Use

a non-hormone method of birth control (not birth control pills) to

prevent pregnancy while you are taking Trileptal. Tell your doctor if

you become pregnant during treatment. Trileptal can pass into breast

milk and may harm a nursing baby. Do not use Trileptal without

telling your doctor if you are breast-feeding a baby. Do not give

Trileptal to a child younger than 2 years old. "

> pssst , that's Tegretol *grin*. Trileptal is on

> the " ok if your other choice is seizures " list. I know

> someone who was IN that study and her baby is

> beautiful.

>

>

> --- cathylynn2 wrote:

>

>> ,

>>

>> This kind of thing really burns me up! You're not

>> supposed to take

>> Trileptal during pregnancy since it can cause

>> serious harm to an

>> unborn baby, and you are not supposed to breast feed

>> while taking it

>> for the same reason. So why is it ok to give it to a

>> BABY directly?

>> I'm very glad to hear she is changing doctors.

>>

>>

>>

>>

>>

>>> Hello all,

>>>

>>> I have a question.

>>>

>>> My best friends son is 11 months. He doesn't

>> crawl, sit, etc. He

>>> doesn't use the left side of his body. She finally

>> took him to a

>>> neuro.

>>> and they told her that he had a stroke and that he

>> does have about 2

>>> seizures a day (she has noticed). Which is why he

>> doesn't use the left

>>> side of his body. They prescribed him Trileptal. I

>> just looked on

>>> thier

>>> website and it states for children 4 years or

>> older. Umm he is only 11

>>> months. Do any of you know about this medicine?

>>>

>>> Oh by the way, she is changing the neuro. He

>> didn't explain

>>> anything to

>>> her regarding a stroke or seizures. She is

>> completely lost and scared.

>>>

>>> Thanks,

>>>

>>>

>>>

>>> ------------------------------------

>>>

>>> Autism_in_Girls-subscribe

>>> ------------------------

>>> Autism_in_Girls-unsubscribe@...!

>> Groups Links

>>>

>>>

>>>

>>

>> " The intuitive mind is a sacred gift and the

>> rational mind is a

>> faithful servant. We have created a society that

>> honors the servant and

>> has forgotten the gift. " - Albert Einstein

>>

>>

>>

>>

>>

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

>> removed]

>>

>>

>

>

>

>

> ______________________________________________________________________

> ______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now. http://

> mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

> ------------------------------------

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe@...! Groups Links

>

>

>

" The intuitive mind is a sacred gift and the rational mind is a

faithful servant. We have created a society that honors the servant and

has forgotten the gift. " - Albert Einstein

[Guest guest]

Oh, and that said, I would definitely have to agree that if you are

talking about a choice between meds and seizures, you are really

between a rock and a hard place.

> Hi Kassi,

>

> I'm WAY sure you more more about this than I... I'm just repeating

> what I've heard from a few trusted medical colleagues. Plus, I've

> read warnings like this on several occasions:

>

> " FDA pregnancy category D. This medication can cause harm to an

> unborn baby. Trileptal should not be used during pregnancy, but

> taking the medicine can make birth control pills less effective. Use

> a non-hormone method of birth control (not birth control pills) to

> prevent pregnancy while you are taking Trileptal. Tell your doctor if

> you become pregnant during treatment. Trileptal can pass into breast

> milk and may harm a nursing baby. Do not use Trileptal without

> telling your doctor if you are breast-feeding a baby. Do not give

> Trileptal to a child younger than 2 years old. "

>

>

>

>

>> pssst , that's Tegretol *grin*. Trileptal is on

>> the " ok if your other choice is seizures " list. I know

>> someone who was IN that study and her baby is

>> beautiful.

>>

>>

>> --- cathylynn2 wrote:

>>

>>> ,

>>>

>>> This kind of thing really burns me up! You're not

>>> supposed to take

>>> Trileptal during pregnancy since it can cause

>>> serious harm to an

>>> unborn baby, and you are not supposed to breast feed

>>> while taking it

>>> for the same reason. So why is it ok to give it to a

>>> BABY directly?

>>> I'm very glad to hear she is changing doctors.

>>>

>>>

>>>

>>>

>>>

>>>> Hello all,

>>>>

>>>> I have a question.

>>>>

>>>> My best friends son is 11 months. He doesn't

>>> crawl, sit, etc. He

>>>> doesn't use the left side of his body. She finally

>>> took him to a

>>>> neuro.

>>>> and they told her that he had a stroke and that he

>>> does have about 2

>>>> seizures a day (she has noticed). Which is why he

>>> doesn't use the left

>>>> side of his body. They prescribed him Trileptal. I

>>> just looked on

>>>> thier

>>>> website and it states for children 4 years or

>>> older. Umm he is only 11

>>>> months. Do any of you know about this medicine?

>>>>

>>>> Oh by the way, she is changing the neuro. He

>>> didn't explain

>>>> anything to

>>>> her regarding a stroke or seizures. She is

>>> completely lost and scared.

>>>>

>>>> Thanks,

>>>>

>>>>

>>>>

>>>> ------------------------------------

>>>>

>>>> Autism_in_Girls-subscribe

>>>> ------------------------

>>>> Autism_in_Girls-unsubscribe@...!

>>> Groups Links

>>>>

>>>>

>>>>

>>>

>>> " The intuitive mind is a sacred gift and the

>>> rational mind is a

>>> faithful servant. We have created a society that

>>> honors the servant and

>>> has forgotten the gift. " - Albert Einstein

>>>

>>>

>>>

>>>

>>>

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

>>> removed]

>>>

>>>

>>

>>

>>

>>

>> _____________________________________________________________________

>> _

>> ______________

>> Be a better friend, newshound, and

>> know-it-all with Yahoo! Mobile. Try it now. http://

>> mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>>

>> ------------------------------------

>>

>> Autism_in_Girls-subscribe

>> ------------------------

>> Autism_in_Girls-unsubscribe@...! Groups Links

>>

>>

>>

>

> " The intuitive mind is a sacred gift and the rational mind is a

> faithful servant. We have created a society that honors the servant

> and

> has forgotten the gift. " - Albert Einstein

>

>

>

>

>

>

[Guest guest]

Yeah, I would say please please please don't let them put a child on

phenobarbitol (sp?) (My own opinion) My daughter was put on that back when

she was an infant having unexplained seizures and after several months of

trying to control them unsuccessfully we switched Neurologists and found one

that is at least much more accessible and will answer questions etc. After

trying Dilantin to not much success either, we are currently using a

'cocktail' of Keppra (which DOES have THE nastiest tasting liquid I've ever

encountered however we were recommended to mix it directly with chocolate

syrup and that does the trick! tastes kinda like a tootsie roll then)

Lamictal and Clonopin (sp?) She has very few seizures now, but does still

have some. She also has Diastat for when she has a seizure that lasts more

than 3 minutes.

However we were informed very late that Phenobarbitol is associated with

causing cognitive development delays, and apparantly from what I'm told this

lasts for much longer than when you are actually taking the medication.

Theresa

's mom

> Oh, and that said, I would definitely have to agree that if you are

> talking about a choice between meds and seizures, you are really

> between a rock and a hard place.

>

>

>

>

>

>

> > Hi Kassi,

> >

> > I'm WAY sure you more more about this than I... I'm just repeating

> > what I've heard from a few trusted medical colleagues. Plus, I've

> > read warnings like this on several occasions:

> >

> > " FDA pregnancy category D. This medication can cause harm to an

> > unborn baby. Trileptal should not be used during pregnancy, but

> > taking the medicine can make birth control pills less effective. Use

> > a non-hormone method of birth control (not birth control pills) to

> > prevent pregnancy while you are taking Trileptal. Tell your doctor if

> > you become pregnant during treatment. Trileptal can pass into breast

> > milk and may harm a nursing baby. Do not use Trileptal without

> > telling your doctor if you are breast-feeding a baby. Do not give

> > Trileptal to a child younger than 2 years old. "

> >

> >

> >

> >

> >> pssst , that's Tegretol *grin*. Trileptal is on

> >> the " ok if your other choice is seizures " list. I know

> >> someone who was IN that study and her baby is

> >> beautiful.

> >>

> >>

> >> --- cathylynn2 <cathybuckley@... <cathybuckley%40mac.com>> wrote:

> >>

> >>> ,

> >>>

> >>> This kind of thing really burns me up! You're not

> >>> supposed to take

> >>> Trileptal during pregnancy since it can cause

> >>> serious harm to an

> >>> unborn baby, and you are not supposed to breast feed

> >>> while taking it

> >>> for the same reason. So why is it ok to give it to a

> >>> BABY directly?

> >>> I'm very glad to hear she is changing doctors.

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>> Hello all,

> >>>>

> >>>> I have a question.

> >>>>

> >>>> My best friends son is 11 months. He doesn't

> >>> crawl, sit, etc. He

> >>>> doesn't use the left side of his body. She finally

> >>> took him to a

> >>>> neuro.

> >>>> and they told her that he had a stroke and that he

> >>> does have about 2

> >>>> seizures a day (she has noticed). Which is why he

> >>> doesn't use the left

> >>>> side of his body. They prescribed him Trileptal. I

> >>> just looked on

> >>>> thier

> >>>> website and it states for children 4 years or

> >>> older. Umm he is only 11

> >>>> months. Do any of you know about this medicine?

> >>>>

> >>>> Oh by the way, she is changing the neuro. He

> >>> didn't explain

> >>>> anything to

> >>>> her regarding a stroke or seizures. She is

> >>> completely lost and scared.

> >>>>

> >>>> Thanks,

> >>>>

> >>>>

> >>>>

> >>>> ------------------------------------

> >>>>

> >>>>

Autism_in_Girls-subscribe <Autism_in_Girls-subscribe%40yahoogroup\

s.com>

> >>>> ------------------------

> >>>>

Autism_in_Girls-unsubscribe@...<Autism_in_Girls-unsubscribe%40y\

ahoogroups.comYahoo>

> !

> >>> Groups Links

> >>>>

> >>>>

> >>>>

> >>>

> >>> " The intuitive mind is a sacred gift and the

> >>> rational mind is a

> >>> faithful servant. We have created a society that

> >>> honors the servant and

> >>> has forgotten the gift. " - Albert Einstein

> >>>

> >>>

> >>>

> >>>

> >>>

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

> >>> removed]

> >>>

> >>>

> >>

> >>

> >>

> >>

> >> __________________________________________________________

> >> _

> >> ______________

> >> Be a better friend, newshound, and

> >> know-it-all with Yahoo! Mobile. Try it now. http://

> >> mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >>

> >> ------------------------------------

> >>

> >>

Autism_in_Girls-subscribe <Autism_in_Girls-subscribe%40yahoogroup\

s.com>

> >> ------------------------

> >>

Autism_in_Girls-unsubscribe@...<Autism_in_Girls-unsubscribe%40y\

ahoogroups.comYahoo>!

> Groups Links

> >>

> >>

> >>

> >

> > " The intuitive mind is a sacred gift and the rational mind is a

> > faithful servant. We have created a society that honors the servant

> > and

> > has forgotten the gift. " - Albert Einstein

> >

> >

> >

> >

> >

> >

[Guest guest]

No they don't know when he had it. They refered her to a seizure

specialist at Miami Childrens Hospital. I tell you the neuro. didn't

tell her much.

se

>

> > Hello all,

> >

> > I have a question.

> >

> > My best friends son is 11 months. He doesn't crawl,

> > sit, etc. He

> > doesn't use the left side of his body. She finally

> > took him to a neuro.

> > and they told her that he had a stroke and that he

> > does have about 2

> > seizures a day (she has noticed). Which is why he

> > doesn't use the left

> > side of his body. They prescribed him Trileptal. I

> > just looked on thier

> > website and it states for children 4 years or older.

> > Umm he is only 11

> > months. Do any of you know about this medicine?

> >

> > Oh by the way, she is changing the neuro. He didn't

> > explain anything to

> > her regarding a stroke or seizures. She is

> > completely lost and scared.

> >

> > Thanks,

> >

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

,

Does the mother Live IN Miami or is that just the closest Children's

Hospital?

I'm in Florida too, and our closest Children's Hospital is All Children's in

St. sberg, which isn't too far for us but the neuro was really rude and

honestly never saw my daughter unless she was actually IN the hospital!

Every time we went for a regular appointment we'd be stuck seeing a nurse

practictioner - not to knock the field in the least - but they could NEVER

answer any of our questions we had, we always had to hear them say they

weren't sure and they'd have to get back to us on that... well you obviously

don't go to a dr's appointment to always be told I'll have to get back to

you on that. And then to top it off when we found a Neuro Dr. that was

closer to us and was the ONLY one we'd see when going to an appointment (and

who had incidently just left that practice to go on his own) this dr. was so

mad that he basically refused to speak to us the next time my daughter was

hospitalized! He basically said that she was stable and since we had choosen

to go with another doctor we'd just have to wait untill we saw him before we

could have any information... I was so upset and so pissed I filed a formal

complaint with the hospital. But my new Neuro said he wasn't surprised at

the behavior, and I've heard quite a bit of the same thing from other

previous patients or those who have had the displeasure of having to deal

with him.

But my point is that she should defiantely check around until she finds one

who has a good raport and will explain things and encourage questions etc.

Theresa

> No they don't know when he had it. They refered her to a seizure

> specialist at Miami Childrens Hospital. I tell you the neuro. didn't

> tell her much.

>

>

> se

> >

> > > Hello all,

> > >

> > > I have a question.

> > >

> > > My best friends son is 11 months. He doesn't crawl,

> > > sit, etc. He

> > > doesn't use the left side of his body. She finally

> > > took him to a neuro.

> > > and they told her that he had a stroke and that he

> > > does have about 2

> > > seizures a day (she has noticed). Which is why he

> > > doesn't use the left

> > > side of his body. They prescribed him Trileptal. I

> > > just looked on thier

> > > website and it states for children 4 years or older.

> > > Umm he is only 11

> > > months. Do any of you know about this medicine?

> > >

> > > Oh by the way, she is changing the neuro. He didn't

> > > explain anything to

> > > her regarding a stroke or seizures. She is

> > > completely lost and scared.

> > >

> > > Thanks,

> > >

> > >

> > >

> >

> >

> >

> >

> __________________________________________________________

> ______________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

>

>

>

[Guest guest]

We don't live in the Miami area anymore, we were raised there. We

live in Port Saint Lucie, which is about 2 hours away. But Miami

Children's Hospital has there own section it's called the " Brain

Institute " they have the Dan Marino center for Autism and then they

have other sections. It is REALLY a good hospital and I have never

had any complaints, they are the ones the dx my daughter and I still

drive her down there every 6 months. Horrible that we all live in the

same state but can't get the same service.

I am sure they can REALLY let her know what's going on with her son.

Hopefully it won't be too late.

Thanks,

> > >

> > > > Hello all,

> > > >

> > > > I have a question.

> > > >

> > > > My best friends son is 11 months. He doesn't crawl,

> > > > sit, etc. He

> > > > doesn't use the left side of his body. She finally

> > > > took him to a neuro.

> > > > and they told her that he had a stroke and that he

> > > > does have about 2

> > > > seizures a day (she has noticed). Which is why he

> > > > doesn't use the left

> > > > side of his body. They prescribed him Trileptal. I

> > > > just looked on thier

> > > > website and it states for children 4 years or older.

> > > > Umm he is only 11

> > > > months. Do any of you know about this medicine?

> > > >

> > > > Oh by the way, she is changing the neuro. He didn't

> > > > explain anything to

> > > > her regarding a stroke or seizures. She is

> > > > completely lost and scared.

> > > >

> > > > Thanks,

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > __________________________________________________________

> > ______________

> > > Be a better friend, newshound, and

> > > know-it-all with Yahoo! Mobile. Try it now.

> > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> > >

> >

> >

> >

>

>

>

[Guest guest]

I haven't seen what anyone has posted, but my thought is to do what

ever it takes to get him somewhere like Kennedy-Krieger, someone like

Dr. Zimmerman. Now let me say I have at times been critical of Dr. Z's

dismissal of biomed, but this is the sort of thing he should be very,

very good at treating. From the School of Hard Knocks, if she pushes

to get him in to see the best in the nation right off the bat, he's

gonna have a much better prognosis & she's gonna feel far better than

chasing half-rate doctors that don't know what they're doing.

Also, the more I research mitochondrial/metabolic disorder, the more

when I read things like an 11 mo-old having repeated strokes/seizures,

I can't help but think his little body has more going on that a

misfiring of neurons. My op from my very limited knowledge, any infant

having strokes/seizures needs a full, complete lab workup, and that's

not the sort of thing an average neuro does. Dr. Z or one of his

colleagues probably will, though.

BTW, there was a study completed with an animal model finding

metformin can function similarly as the ketogenic diet, something that

can help people with difficult seizures.

http://www.cnsfoundation.org/site/News2?JServSessionIdr007=dxhegpjbz3.app13a & pag\

e=NewsArticle & id=7935 & security=1 & news_iv_ctrl=-1

Just my op, anyway.

Debi

[Guest guest]

this is of one( tegretol) I to be of allergic too as it builds it

becomes toxic in me.

I to also cant be to take lythium either for same reasons.

Sondra