Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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, > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 , 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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 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 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.