Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 : Hi! How are you? I have been taking Trileptal for 5 yrs now and yes I do have blood levels checked about every 4-6 months, depending on how the control is doing. Trileptal is a version of Tegretol and that is why it is written down as the oxcarbazepine blood level check when sent to the lab. If the blood levels get to high for a long period of time then it can do liver damage. But the neurologists are usually careful to keep such a check on it. I wish the best of luck with it. Look for the same side affects as you do with the tegretol. I found it to make me unusally thristy and also nervous for the first 4 weeks. After that I was ok. I also take Keppra which makes me hyper. Take care and keep in touch. Happy New Year to you and your family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 : On our form for blood level it is not written as " oxcarbazepine " it is written as " carbamazepine " . That's why I'm asking... " ox " is Trileptal and the other is Tegretol. I do realize that the two drugs are close relatives. >From: 42122@... >Date: Sun, 5 Jan 2003 13:43:54 EST > >: > Hi! How are you? I have been taking Trileptal for 5 yrs now >and >yes I do have blood levels checked about every 4-6 months, depending on how >the control is doing. Trileptal is a version of Tegretol and that is why >it >is written down as the oxcarbazepine blood level check when sent to the >lab. > If the blood levels get to high for a long period of time then it can do >liver damage. But the neurologists are usually careful to keep such a >check >on it. > I wish the best of luck with it. Look for the same side affects as you >do >with the tegretol. I found it to make me unusally thristy and also nervous >for the first 4 weeks. After that I was ok. I also take Keppra which >makes >me hyper. > Take care and keep in touch. Happy New Year to you and your family. > > _________________________________________________________________ MSN 8: advanced junk mail protection and 2 months FREE*. http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 > Hi everyone: > I have a question for anyone who has been on Trileptal. Did your doctor > check periodically for drug level in your blood? If so, what drug did they > test for? My son has just started on Trileptal (oxcarbazepine) and the > doctor has asked for a check of carbemazepine (Tegretol) in his blood. The > doctor says that the liver converts it so that's what to check for, but I > just wanted to check with all you folks. > > Thanks. > > > > > > > > _________________________________________________________________ > STOP MORE SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Well, just after I told you how wonderful trileptal has been for Beth (it's not " heavy " for her, BTW), we run into a " challenge " because of it. As you all know, I was planning to put beth on birth control pills, but after checking with our psychiatrist, he said the low-cycle pills they were prescribing wouldn't be strong enough because of the trileptal. He said she'd need the 150 ones, and when I went back to the gynocologist, they refuse to prescribe the 150's because of the high estrogen level...and beth's young age (meaning she'd be on them for a long time probably). They both recommend the shot, which beth wants NOTHING to do with....so now beth is very angry and panicky...and wants me to call the psychiatrist IMMEDIATELY to make an appointment to get this worked out! Ah, it was so nice while it lasted...peace and quiet.... Ha... She's calmed down now...her 'mini rages' don't last anything like they used to and her eyes are not anything like they used to be (wild and scary looking). Yay trileptal and seroquel! But I will have to push on this and try to figure out what our options are, and pray that Beth will be rational and mature enough to listen and not scream at me as we're doing it. Meanwhile, it's PROM weekend...Saturday! We got acrylic nails on tonight; we have the dress, the shoes, the hair appointment is Saturday morning..... Maralee Hi Maralee, I'm glad Trileptal has worked well for your daughter. It has certainly helped Sasha to function without throwing hissy fits about everything under the sun. We noticed, in addition to helping to control the raging (which I would describe as prolonged and violent), that Trileptal helped dampen all the tantrums we'd been seeing. Sasha used to stamp his feet a lot and scream hurtful language and threaten to be a brat if we didn't do something for him -- a tactic that never worked with us, by the way. So it is a relief not to have to deal with that on an hourly basis. One thing I don't like about Trileptal is that it is " heavy. " Sasha describes it as a fog that settles down on him, somewhat buffering him from the world. He says it can make it harder for him to think. When I relayed this to his psychiatrist, Dr. C said, " Yep, that sounds about right. " For several months, something in me recoiled when I gave him this med. And I still struggle with this side effect. For this reason, we keep Sasha on the lowest possible dose. He does a bit better mood-wise on a bigger dose, but he was pretty foggy and had a hard time with some of his school work. The behavior we are seeing is mainly due to AS at this point. So I'm not sure I would recommend Risperdal and Trileptal for kids without mood problems (raging, hypersexual, expansive, less than truthful, giddy, depressed, nightmare-plagued, phobic, aggressive), because they don't seem to alleviate any of the autistic symptoms. Still, I'm told Risperdal can be helpful with taking the " edge " off some autistic children. It seems to work in part by alleviating anxiety -- or that sort of full-steam-build-up, pressured behavior that can result in blow-ups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Maralee, I would check out the patch as another alternative, if Beth is really against the shot. The patch has to be changed weekly, plus the stay on in water or any activity, RE: ( ) trileptal Well, just after I told you how wonderful trileptal has been for Beth (it's not " heavy " for her, BTW), we run into a " challenge " because of it. As you all know, I was planning to put beth on birth control pills, but after checking with our psychiatrist, he said the low-cycle pills they were prescribing wouldn't be strong enough because of the trileptal. He said she'd need the 150 ones, and when I went back to the gynocologist, they refuse to prescribe the 150's because of the high estrogen level...and beth's young age (meaning she'd be on them for a long time probably). They both recommend the shot, which beth wants NOTHING to do with....so now beth is very angry and panicky...and wants me to call the psychiatrist IMMEDIATELY to make an appointment to get this worked out! Ah, it was so nice while it lasted...peace and quiet.... Ha... She's calmed down now...her 'mini rages' don't last anything like they used to and her eyes are not anything like they used to be (wild and scary looking). Yay trileptal and seroquel! But I will have to push on this and try to figure out what our options are, and pray that Beth will be rational and mature enough to listen and not scream at me as we're doing it. Meanwhile, it's PROM weekend...Saturday! We got acrylic nails on tonight; we have the dress, the shoes, the hair appointment is Saturday morning..... Maralee Hi Maralee, I'm glad Trileptal has worked well for your daughter. It has certainly helped Sasha to function without throwing hissy fits about everything under the sun. We noticed, in addition to helping to control the raging (which I would describe as prolonged and violent), that Trileptal helped dampen all the tantrums we'd been seeing. Sasha used to stamp his feet a lot and scream hurtful language and threaten to be a brat if we didn't do something for him -- a tactic that never worked with us, by the way. So it is a relief not to have to deal with that on an hourly basis. One thing I don't like about Trileptal is that it is " heavy. " Sasha describes it as a fog that settles down on him, somewhat buffering him from the world. He says it can make it harder for him to think. When I relayed this to his psychiatrist, Dr. C said, " Yep, that sounds about right. " For several months, something in me recoiled when I gave him this med. And I still struggle with this side effect. For this reason, we keep Sasha on the lowest possible dose. He does a bit better mood-wise on a bigger dose, but he was pretty foggy and had a hard time with some of his school work. The behavior we are seeing is mainly due to AS at this point. So I'm not sure I would recommend Risperdal and Trileptal for kids without mood problems (raging, hypersexual, expansive, less than truthful, giddy, depressed, nightmare-plagued, phobic, aggressive), because they don't seem to alleviate any of the autistic symptoms. Still, I'm told Risperdal can be helpful with taking the " edge " off some autistic children. It seems to work in part by alleviating anxiety -- or that sort of full-steam-build-up, pressured behavior that can result in blow-ups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 They told me it would be the same problem with the patch; it would have to be so high in estrogen to work with the meds she's on. Darn it! Maralee....still researching.... Re: ( ) trileptal Maralee, I would check out the patch as another alternative, if Beth is really against the shot. The patch has to be changed weekly, plus the stay on in water or any activity, RE: ( ) trileptal Well, just after I told you how wonderful trileptal has been for Beth (it's not " heavy " for her, BTW), we run into a " challenge " because of it. As you all know, I was planning to put beth on birth control pills, but after checking with our psychiatrist, he said the low-cycle pills they were prescribing wouldn't be strong enough because of the trileptal. He said she'd need the 150 ones, and when I went back to the gynocologist, they refuse to prescribe the 150's because of the high estrogen level...and beth's young age (meaning she'd be on them for a long time probably). They both recommend the shot, which beth wants NOTHING to do with....so now beth is very angry and panicky...and wants me to call the psychiatrist IMMEDIATELY to make an appointment to get this worked out! Ah, it was so nice while it lasted...peace and quiet.... Ha... She's calmed down now...her 'mini rages' don't last anything like they used to and her eyes are not anything like they used to be (wild and scary looking). Yay trileptal and seroquel! But I will have to push on this and try to figure out what our options are, and pray that Beth will be rational and mature enough to listen and not scream at me as we're doing it. Meanwhile, it's PROM weekend...Saturday! We got acrylic nails on tonight; we have the dress, the shoes, the hair appointment is Saturday morning..... Maralee Hi Maralee, I'm glad Trileptal has worked well for your daughter. It has certainly helped Sasha to function without throwing hissy fits about everything under the sun. We noticed, in addition to helping to control the raging (which I would describe as prolonged and violent), that Trileptal helped dampen all the tantrums we'd been seeing. Sasha used to stamp his feet a lot and scream hurtful language and threaten to be a brat if we didn't do something for him -- a tactic that never worked with us, by the way. So it is a relief not to have to deal with that on an hourly basis. One thing I don't like about Trileptal is that it is " heavy. " Sasha describes it as a fog that settles down on him, somewhat buffering him from the world. He says it can make it harder for him to think. When I relayed this to his psychiatrist, Dr. C said, " Yep, that sounds about right. " For several months, something in me recoiled when I gave him this med. And I still struggle with this side effect. For this reason, we keep Sasha on the lowest possible dose. He does a bit better mood-wise on a bigger dose, but he was pretty foggy and had a hard time with some of his school work. The behavior we are seeing is mainly due to AS at this point. So I'm not sure I would recommend Risperdal and Trileptal for kids without mood problems (raging, hypersexual, expansive, less than truthful, giddy, depressed, nightmare-plagued, phobic, aggressive), because they don't seem to alleviate any of the autistic symptoms. Still, I'm told Risperdal can be helpful with taking the " edge " off some autistic children. It seems to work in part by alleviating anxiety -- or that sort of full-steam-build-up, pressured behavior that can result in blow-ups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 On Apr 26, 2005, at 3:15 AM, wrote: > Meanwhile, it's PROM weekend...Saturday! We got acrylic nails on > tonight; we > have the dress, the shoes, the hair appointment is Saturday > morning..... > > Maralee > **Wow, wow. I just love living through you, seeing what it will be like. Tomorrow, my first baby turns 11. She is almost a teenager. Where did the time go? I wouldn't put her on the shot, since they last 3 mos. once the hormones are delivered, they stay in your system! I know too many people who have had trouble with the shot. What about the patch? Is the hormone level ok on that one? Tina livin' in Alphabet Soup with: , 6, AS/HFA , anxiety Jordan 10, GAD, BP, OCD Jasmine as NT as it gets, for now dw to Jon- AS but fixated on computers= $$ " The three most important voices: the voice of your heart, the voice of your gut and the voice of your child. " -Heidi Lissauer -adult with autism who has autistic children, as well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Chuckle, chuckle. I'm glad you like living through " me! " It's fun to share it all with you. We ended up putting her on the strong birth control pills, as the doctors met and discussed her situation, and realized that the meds she is on 'uses up' some of the estrogen. That's what they were concerned about. So she's now taken pill #3 and we're on our way. She's also decided (argh) that she wants to be responsible for HER OWN PILLS now...she says she has to taken them by herself as an adult so there is no reason why she shouldn't start now. ARGHGHGH I agree...but...I LIKE THAT CONTROL. LOL I am " checking " to be sure, at least for a while... Good news: she has been working at a local library 3 hours a week through her school program. Icalled the library and asked if she could continue through the summer, and also if she could work more. They checked and got it approved, so she " gets " to work 3 hours Wednesday morning and 3 hours Friday morning! For pay! She is happy; I am very happy. She will have summer structure, work experience, AND $$$$$$! Wooohoooooo! Tada for now, maralee -- > Meanwhile, it's PROM weekend...Saturday! We got acrylic nails on > tonight; we > have the dress, the shoes, the hair appointment is Saturday > morning..... > > Maralee > **Wow, wow. I just love living through you, seeing what it will be like. Tomorrow, my first baby turns 11. She is almost a teenager. Where did the time go? I wouldn't put her on the shot, since they last 3 mos. once the hormones are delivered, they stay in your system! I know too many people who have had trouble with the shot. What about the patch? Is the hormone level ok on that one? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 - I appreciate you sharing your experiences. Sounds like you have done great. KateOn Wed, May 30, 2012 at 8:09 PM, Vivace <rachel_vivace@...> wrote: Benadryl is an OTC antihistamine. It is cheap (about $4 for 100 tabs of the generic at Walmart and Dollar General) It is pretty mild, can take up to every 4-6 hrs if need be. It works better on me than anything else to calm anxiety and reduce sensory difficulties; I have been taking it since I was about 15 for that (and I'm nearing 37 now, and it still works for me). It is actually also approved for use for moderate to severe allergic reactions as well if you don't have an epipen around, so it actually should be safe for most people who have problems with severe allergies. It has been around a fairly long time. If your child is sensitive to dyes, there is a dye-free version. I couldn't take Abilify either (made me incredibly anxious and irritable), but it has helped my boyfriend in the past. -- Kate MyersTravel Desk773.904.8267 V773.698.8184 F Quote Link to comment Share on other sites More sharing options...
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