Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Wow, I am so sorry to hear how rough it has been for your daughter. You must be emotionally drained as well. I m sure you must be quite worried. I wish I had information for you, but other than to say when you need the rest you either get it or you get worse, I can't offer more. Please know we will be praying for your daughter. Make sure you get rest too and feel free to vent as much as you want. We are here for you. Darla: mommy to Asenath ?'s about Baclofen Is Baclofen a medication that can be taken "as needed"? had a feeding tube placed on Nov 26th 2002,she broke it off on Dec 4th 2002.After her 2nd surgery, to retreve the broken part and replace the tube (she also had a abcess in her belly and had pnumonia) she started having really bad jerking/screaming spells.She was started on 40mg daily of Baclofen. This has since been increased to 80mg daily. My problem with all this is she sleeps ALL the time.I would say she is sleeping 23 hrs a day,every day.I wake her up to try to get her to eat,she does still eat some by mouth when she can stay awake,or give her meds. She is losing all her muscle tone,she doesn't move around any.She doesn't talk anymore,even if she tries answering yes or no she can't be understood, it's like she doesn't have enough air to get even simple sounds out.I think some of this may be due to the Baclofen,it does affect the respitatory system.I know she has needed O2 more often. also takes 1875mg Depakote,3mg Clonazapam,and 25mg Zoloft daily plus the usual cocktail of MCT oil,Carnitor,QGel,vit B1,B2,B12,Biotin and 2 multi vits.She also take 1 birth control pill daily (none of the sugar pills),this helps control hormones,stops her period, thus helps with seizures. I want her to be comfortable,but at the same time I would like for her to be able to enjoy a few things too. She used to love going out to eat and shoping,even if it was just for groceries.Now it's sleep,sleep and more sleep. As usual all suggestions are appreciated. You are all in my prayers. , Mom to Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Wow, I am so sorry to hear how rough it has been for your daughter. You must be emotionally drained as well. I m sure you must be quite worried. I wish I had information for you, but other than to say when you need the rest you either get it or you get worse, I can't offer more. Please know we will be praying for your daughter. Make sure you get rest too and feel free to vent as much as you want. We are here for you. Darla: mommy to Asenath ?'s about Baclofen Is Baclofen a medication that can be taken "as needed"? had a feeding tube placed on Nov 26th 2002,she broke it off on Dec 4th 2002.After her 2nd surgery, to retreve the broken part and replace the tube (she also had a abcess in her belly and had pnumonia) she started having really bad jerking/screaming spells.She was started on 40mg daily of Baclofen. This has since been increased to 80mg daily. My problem with all this is she sleeps ALL the time.I would say she is sleeping 23 hrs a day,every day.I wake her up to try to get her to eat,she does still eat some by mouth when she can stay awake,or give her meds. She is losing all her muscle tone,she doesn't move around any.She doesn't talk anymore,even if she tries answering yes or no she can't be understood, it's like she doesn't have enough air to get even simple sounds out.I think some of this may be due to the Baclofen,it does affect the respitatory system.I know she has needed O2 more often. also takes 1875mg Depakote,3mg Clonazapam,and 25mg Zoloft daily plus the usual cocktail of MCT oil,Carnitor,QGel,vit B1,B2,B12,Biotin and 2 multi vits.She also take 1 birth control pill daily (none of the sugar pills),this helps control hormones,stops her period, thus helps with seizures. I want her to be comfortable,but at the same time I would like for her to be able to enjoy a few things too. She used to love going out to eat and shoping,even if it was just for groceries.Now it's sleep,sleep and more sleep. As usual all suggestions are appreciated. You are all in my prayers. , Mom to Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Wow, I am so sorry to hear how rough it has been for your daughter. You must be emotionally drained as well. I m sure you must be quite worried. I wish I had information for you, but other than to say when you need the rest you either get it or you get worse, I can't offer more. Please know we will be praying for your daughter. Make sure you get rest too and feel free to vent as much as you want. We are here for you. Darla: mommy to Asenath ?'s about Baclofen Is Baclofen a medication that can be taken "as needed"? had a feeding tube placed on Nov 26th 2002,she broke it off on Dec 4th 2002.After her 2nd surgery, to retreve the broken part and replace the tube (she also had a abcess in her belly and had pnumonia) she started having really bad jerking/screaming spells.She was started on 40mg daily of Baclofen. This has since been increased to 80mg daily. My problem with all this is she sleeps ALL the time.I would say she is sleeping 23 hrs a day,every day.I wake her up to try to get her to eat,she does still eat some by mouth when she can stay awake,or give her meds. She is losing all her muscle tone,she doesn't move around any.She doesn't talk anymore,even if she tries answering yes or no she can't be understood, it's like she doesn't have enough air to get even simple sounds out.I think some of this may be due to the Baclofen,it does affect the respitatory system.I know she has needed O2 more often. also takes 1875mg Depakote,3mg Clonazapam,and 25mg Zoloft daily plus the usual cocktail of MCT oil,Carnitor,QGel,vit B1,B2,B12,Biotin and 2 multi vits.She also take 1 birth control pill daily (none of the sugar pills),this helps control hormones,stops her period, thus helps with seizures. I want her to be comfortable,but at the same time I would like for her to be able to enjoy a few things too. She used to love going out to eat and shoping,even if it was just for groceries.Now it's sleep,sleep and more sleep. As usual all suggestions are appreciated. You are all in my prayers. , Mom to Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 , All the muscle relaxants are going to cause drowsiness. However when I took Baclofen it was the best as far as not knocking me out. It might be the higher dose she is taking. I wouldn't reccomend you stop it cold turkey, but you could try slowly lowering the dose and see if she can tolerate the pain, etc and become more alert. It's a vicious cycle of needing to get relief but wanting to live a normal life too. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 , All the muscle relaxants are going to cause drowsiness. However when I took Baclofen it was the best as far as not knocking me out. It might be the higher dose she is taking. I wouldn't reccomend you stop it cold turkey, but you could try slowly lowering the dose and see if she can tolerate the pain, etc and become more alert. It's a vicious cycle of needing to get relief but wanting to live a normal life too. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 , All the muscle relaxants are going to cause drowsiness. However when I took Baclofen it was the best as far as not knocking me out. It might be the higher dose she is taking. I wouldn't reccomend you stop it cold turkey, but you could try slowly lowering the dose and see if she can tolerate the pain, etc and become more alert. It's a vicious cycle of needing to get relief but wanting to live a normal life too. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , >Is Baclofen a medication that can be taken " as needed " ? I sure wouldn't think so! We have been told it's dangerous to withdraw Baclofen suddenly; I can't imagine having the dose swing back and forth from day to day. Just to have a scheduled surgery, the girls had to gradually wean off of Baclofen for about a month so that on the day of surgery, when they couldn't take it, they wouldn't have withdrawl symptoms. All that work just because they would have to go 24 hours without it! When they went back on Baclofen after surgery, they had to work their way up to their pre-surgery dose over a period of weeks. > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec >4th 2002.After her 2nd surgery, to retreve the broken part and replace the >tube (she also had a abcess in her belly and had pnumonia) she started >having really bad jerking/screaming spells.She was started on 40mg daily >of Baclofen. Are they confident the jerking/screaming is from muscle spasms (I assume that's why they put her on it)? Are they sure this isn't something else, like seizure activity or pain from another source? If they are sure it's muscle spasms, you could talk to her doctor about alternatives to Baclofen--zanaflex and valium are used. I think neurontin can be used for this, too. These might all make her sleepy, as well, but it might be worth a try. We've switched Emilie from Baclofen to valium (after a long weaning process off the Baclofen), and she seems more mellow, but without being sleepy. >This has since been increased to 80mg daily. That seems like a pretty big dose. Kaitlin is about a 105 pounds and takes 60 mg a day. Perhaps you could talk to the doctor about decreasing the dose a little to see what happens. > Sorry is having such troubles. Hope your doctor can help you find a solution. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , >Is Baclofen a medication that can be taken " as needed " ? I sure wouldn't think so! We have been told it's dangerous to withdraw Baclofen suddenly; I can't imagine having the dose swing back and forth from day to day. Just to have a scheduled surgery, the girls had to gradually wean off of Baclofen for about a month so that on the day of surgery, when they couldn't take it, they wouldn't have withdrawl symptoms. All that work just because they would have to go 24 hours without it! When they went back on Baclofen after surgery, they had to work their way up to their pre-surgery dose over a period of weeks. > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec >4th 2002.After her 2nd surgery, to retreve the broken part and replace the >tube (she also had a abcess in her belly and had pnumonia) she started >having really bad jerking/screaming spells.She was started on 40mg daily >of Baclofen. Are they confident the jerking/screaming is from muscle spasms (I assume that's why they put her on it)? Are they sure this isn't something else, like seizure activity or pain from another source? If they are sure it's muscle spasms, you could talk to her doctor about alternatives to Baclofen--zanaflex and valium are used. I think neurontin can be used for this, too. These might all make her sleepy, as well, but it might be worth a try. We've switched Emilie from Baclofen to valium (after a long weaning process off the Baclofen), and she seems more mellow, but without being sleepy. >This has since been increased to 80mg daily. That seems like a pretty big dose. Kaitlin is about a 105 pounds and takes 60 mg a day. Perhaps you could talk to the doctor about decreasing the dose a little to see what happens. > Sorry is having such troubles. Hope your doctor can help you find a solution. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , >Is Baclofen a medication that can be taken " as needed " ? I sure wouldn't think so! We have been told it's dangerous to withdraw Baclofen suddenly; I can't imagine having the dose swing back and forth from day to day. Just to have a scheduled surgery, the girls had to gradually wean off of Baclofen for about a month so that on the day of surgery, when they couldn't take it, they wouldn't have withdrawl symptoms. All that work just because they would have to go 24 hours without it! When they went back on Baclofen after surgery, they had to work their way up to their pre-surgery dose over a period of weeks. > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec >4th 2002.After her 2nd surgery, to retreve the broken part and replace the >tube (she also had a abcess in her belly and had pnumonia) she started >having really bad jerking/screaming spells.She was started on 40mg daily >of Baclofen. Are they confident the jerking/screaming is from muscle spasms (I assume that's why they put her on it)? Are they sure this isn't something else, like seizure activity or pain from another source? If they are sure it's muscle spasms, you could talk to her doctor about alternatives to Baclofen--zanaflex and valium are used. I think neurontin can be used for this, too. These might all make her sleepy, as well, but it might be worth a try. We've switched Emilie from Baclofen to valium (after a long weaning process off the Baclofen), and she seems more mellow, but without being sleepy. >This has since been increased to 80mg daily. That seems like a pretty big dose. Kaitlin is about a 105 pounds and takes 60 mg a day. Perhaps you could talk to the doctor about decreasing the dose a little to see what happens. > Sorry is having such troubles. Hope your doctor can help you find a solution. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I could not tell if your daughter is a confirmed " mito " case or not, but you might want to do some research on mito patients and Depakote if she is. Some mito docs feel it's not a good combination. Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I could not tell if your daughter is a confirmed " mito " case or not, but you might want to do some research on mito patients and Depakote if she is. Some mito docs feel it's not a good combination. Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 stephine, my computer has been down but i got your message. are you saying some dr. dont think baclofen is good for patients with mito. just courious. thanks karen ----- Orisginal Message ----- From: PINE LAKE TOWNSHIP To: Mito Sent: Monday, January 05, 2004 2:59 PM Subject: Re: ?'s about Baclofen , I could not tell if your daughter is a confirmed "mito" case or not, butyou might want to do some research on mito patients and Depakote if sheis. Some mito docs feel it's not a good combination. LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 While at WalMart this afternoon I looked at a small paper back PDR.According to it the " less common " side effects of Baclofen are ALL the " problems " seems to be having..... depression,lathargy,confusion,change in taste,loss of appitite,sweating,stuffy nose,dry mouth,tremor,swelling of ankles, excitement,breathing difficulty,muscle weakness,loss of motion,rigidity I'm calling her doc tomorrow,I think it's time for another MRI. The last one she had done (at our local hospital) was nearly 2 years ago and showed some problems.None she had before (3x's in Louisville,1x in St Louis) ever showed any problems.Just something I think we need to check to rule out any more problems there. Thanks, ,Mom to > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 While at WalMart this afternoon I looked at a small paper back PDR.According to it the " less common " side effects of Baclofen are ALL the " problems " seems to be having..... depression,lathargy,confusion,change in taste,loss of appitite,sweating,stuffy nose,dry mouth,tremor,swelling of ankles, excitement,breathing difficulty,muscle weakness,loss of motion,rigidity I'm calling her doc tomorrow,I think it's time for another MRI. The last one she had done (at our local hospital) was nearly 2 years ago and showed some problems.None she had before (3x's in Louisville,1x in St Louis) ever showed any problems.Just something I think we need to check to rule out any more problems there. Thanks, ,Mom to > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 While at WalMart this afternoon I looked at a small paper back PDR.According to it the " less common " side effects of Baclofen are ALL the " problems " seems to be having..... depression,lathargy,confusion,change in taste,loss of appitite,sweating,stuffy nose,dry mouth,tremor,swelling of ankles, excitement,breathing difficulty,muscle weakness,loss of motion,rigidity I'm calling her doc tomorrow,I think it's time for another MRI. The last one she had done (at our local hospital) was nearly 2 years ago and showed some problems.None she had before (3x's in Louisville,1x in St Louis) ever showed any problems.Just something I think we need to check to rule out any more problems there. Thanks, ,Mom to > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , I would never stop any med suddenly OR without the approval of her doc. was STARTED on 40 mg after her surgery. When it was increased to 80mg it too was done all at once. From what I have read 80mg is the maximum dose of Baclofen. weights right at 200 lbs. The docs did think at first it was seizure activity but an EEG showed it wasn't. Her doc and I have discussed changing to valium,and that is looking like it may be the route to take. does not seem to be in any pain,except WHEN she is having a muscle spasm.Her left foot draws down and her right leg draws up. .. I'm glad to hear Emilie is doing well with the valium. Where do you live? For some reason I keep thinking you're in ville, if so,your only about 35 or 40 miles from us. Thanks , ,Mom to Re: ?'s about Baclofen > , > > >Is Baclofen a medication that can be taken " as needed " ? > > I sure wouldn't think so! We have been told it's dangerous to withdraw > Baclofen suddenly; I can't imagine having the dose swing back and forth > from day to day. Just to have a scheduled surgery, the girls had to > gradually wean off of Baclofen for about a month so that on the day of > surgery, when they couldn't take it, they wouldn't have withdrawl > symptoms. All that work just because they would have to go 24 hours > without it! When they went back on Baclofen after surgery, they had to > work their way up to their pre-surgery dose over a period of weeks. > > > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec > >4th 2002.After her 2nd surgery, to retreve the broken part and replace the > >tube (she also had a abcess in her belly and had pnumonia) she started > >having really bad jerking/screaming spells.She was started on 40mg daily > >of Baclofen. > > Are they confident the jerking/screaming is from muscle spasms (I assume > that's why they put her on it)? Are they sure this isn't something else, > like seizure activity or pain from another source? > > If they are sure it's muscle spasms, you could talk to her doctor about > alternatives to Baclofen--zanaflex and valium are used. I think > neurontin can be used for this, too. These might all make her sleepy, as > well, but it might be worth a try. We've switched Emilie from Baclofen > to valium (after a long weaning process off the Baclofen), and she seems > more mellow, but without being sleepy. > > >This has since been increased to 80mg daily. > > That seems like a pretty big dose. Kaitlin is about a 105 pounds and > takes 60 mg a day. Perhaps you could talk to the doctor about decreasing > the dose a little to see what happens. > > > Sorry is having such troubles. Hope your doctor can help you find > a solution. > > -- Mom to: > Emilie (17), mito--complex IV, cp, ld > Kaitlin (17), cp, asthma, a few autonomic symptoms > Ian (22) migraines > ...and wife to Tim, who has a heart of gold > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , I would never stop any med suddenly OR without the approval of her doc. was STARTED on 40 mg after her surgery. When it was increased to 80mg it too was done all at once. From what I have read 80mg is the maximum dose of Baclofen. weights right at 200 lbs. The docs did think at first it was seizure activity but an EEG showed it wasn't. Her doc and I have discussed changing to valium,and that is looking like it may be the route to take. does not seem to be in any pain,except WHEN she is having a muscle spasm.Her left foot draws down and her right leg draws up. .. I'm glad to hear Emilie is doing well with the valium. Where do you live? For some reason I keep thinking you're in ville, if so,your only about 35 or 40 miles from us. Thanks , ,Mom to Re: ?'s about Baclofen > , > > >Is Baclofen a medication that can be taken " as needed " ? > > I sure wouldn't think so! We have been told it's dangerous to withdraw > Baclofen suddenly; I can't imagine having the dose swing back and forth > from day to day. Just to have a scheduled surgery, the girls had to > gradually wean off of Baclofen for about a month so that on the day of > surgery, when they couldn't take it, they wouldn't have withdrawl > symptoms. All that work just because they would have to go 24 hours > without it! When they went back on Baclofen after surgery, they had to > work their way up to their pre-surgery dose over a period of weeks. > > > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec > >4th 2002.After her 2nd surgery, to retreve the broken part and replace the > >tube (she also had a abcess in her belly and had pnumonia) she started > >having really bad jerking/screaming spells.She was started on 40mg daily > >of Baclofen. > > Are they confident the jerking/screaming is from muscle spasms (I assume > that's why they put her on it)? Are they sure this isn't something else, > like seizure activity or pain from another source? > > If they are sure it's muscle spasms, you could talk to her doctor about > alternatives to Baclofen--zanaflex and valium are used. I think > neurontin can be used for this, too. These might all make her sleepy, as > well, but it might be worth a try. We've switched Emilie from Baclofen > to valium (after a long weaning process off the Baclofen), and she seems > more mellow, but without being sleepy. > > >This has since been increased to 80mg daily. > > That seems like a pretty big dose. Kaitlin is about a 105 pounds and > takes 60 mg a day. Perhaps you could talk to the doctor about decreasing > the dose a little to see what happens. > > > Sorry is having such troubles. Hope your doctor can help you find > a solution. > > -- Mom to: > Emilie (17), mito--complex IV, cp, ld > Kaitlin (17), cp, asthma, a few autonomic symptoms > Ian (22) migraines > ...and wife to Tim, who has a heart of gold > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , I would never stop any med suddenly OR without the approval of her doc. was STARTED on 40 mg after her surgery. When it was increased to 80mg it too was done all at once. From what I have read 80mg is the maximum dose of Baclofen. weights right at 200 lbs. The docs did think at first it was seizure activity but an EEG showed it wasn't. Her doc and I have discussed changing to valium,and that is looking like it may be the route to take. does not seem to be in any pain,except WHEN she is having a muscle spasm.Her left foot draws down and her right leg draws up. .. I'm glad to hear Emilie is doing well with the valium. Where do you live? For some reason I keep thinking you're in ville, if so,your only about 35 or 40 miles from us. Thanks , ,Mom to Re: ?'s about Baclofen > , > > >Is Baclofen a medication that can be taken " as needed " ? > > I sure wouldn't think so! We have been told it's dangerous to withdraw > Baclofen suddenly; I can't imagine having the dose swing back and forth > from day to day. Just to have a scheduled surgery, the girls had to > gradually wean off of Baclofen for about a month so that on the day of > surgery, when they couldn't take it, they wouldn't have withdrawl > symptoms. All that work just because they would have to go 24 hours > without it! When they went back on Baclofen after surgery, they had to > work their way up to their pre-surgery dose over a period of weeks. > > > had a feeding tube placed on Nov 26th 2002,she broke it off on Dec > >4th 2002.After her 2nd surgery, to retreve the broken part and replace the > >tube (she also had a abcess in her belly and had pnumonia) she started > >having really bad jerking/screaming spells.She was started on 40mg daily > >of Baclofen. > > Are they confident the jerking/screaming is from muscle spasms (I assume > that's why they put her on it)? Are they sure this isn't something else, > like seizure activity or pain from another source? > > If they are sure it's muscle spasms, you could talk to her doctor about > alternatives to Baclofen--zanaflex and valium are used. I think > neurontin can be used for this, too. These might all make her sleepy, as > well, but it might be worth a try. We've switched Emilie from Baclofen > to valium (after a long weaning process off the Baclofen), and she seems > more mellow, but without being sleepy. > > >This has since been increased to 80mg daily. > > That seems like a pretty big dose. Kaitlin is about a 105 pounds and > takes 60 mg a day. Perhaps you could talk to the doctor about decreasing > the dose a little to see what happens. > > > Sorry is having such troubles. Hope your doctor can help you find > a solution. > > -- Mom to: > Emilie (17), mito--complex IV, cp, ld > Kaitlin (17), cp, asthma, a few autonomic symptoms > Ian (22) migraines > ...and wife to Tim, who has a heart of gold > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , Some mito docs feel that Depakote is not good for mito patients. I thought you mentioned that your daughter was on Depakote also.( Hope I didn't reply to the wrong message, there are so many to sift through.) You should be able to do a search on google regarding depakote & mito, or try the UMDF site. If I remember correctly Depakote can contribute to Hyperammonemia (high ammonia) which can be a problem with mito kids anyways. I know that our Lily had very high ammonia levels which did come done (mostly) after finally being taken off Depakene(liquid depakote). If you want specific references to the mito toxicity let me know and I'll do some digging. Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , Some mito docs feel that Depakote is not good for mito patients. I thought you mentioned that your daughter was on Depakote also.( Hope I didn't reply to the wrong message, there are so many to sift through.) You should be able to do a search on google regarding depakote & mito, or try the UMDF site. If I remember correctly Depakote can contribute to Hyperammonemia (high ammonia) which can be a problem with mito kids anyways. I know that our Lily had very high ammonia levels which did come done (mostly) after finally being taken off Depakene(liquid depakote). If you want specific references to the mito toxicity let me know and I'll do some digging. Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , Some mito docs feel that Depakote is not good for mito patients. I thought you mentioned that your daughter was on Depakote also.( Hope I didn't reply to the wrong message, there are so many to sift through.) You should be able to do a search on google regarding depakote & mito, or try the UMDF site. If I remember correctly Depakote can contribute to Hyperammonemia (high ammonia) which can be a problem with mito kids anyways. I know that our Lily had very high ammonia levels which did come done (mostly) after finally being taken off Depakene(liquid depakote). If you want specific references to the mito toxicity let me know and I'll do some digging. Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , We were told by Dr. Shoffner to get our off of Depakote for this same reason. Just thought I would let you know. Blessings, Horsley Re: ?'s about Baclofen , Some mito docs feel that Depakote is not good for mito patients. Ithought you mentioned that your daughter was on Depakote also.( Hope Ididn't reply to the wrong message, there are so many to sift through.)You should be able to do a search on google regarding depakote & mito, ortry the UMDF site. If I remember correctly Depakote can contribute toHyperammonemia (high ammonia) which can be a problem with mito kidsanyways. I know that our Lily had very high ammonia levels which did comedone (mostly) after finally being taken off Depakene(liquid depakote). Ifyou want specific references to the mito toxicity let me know and I'll dosome digging. LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , We were told by Dr. Shoffner to get our off of Depakote for this same reason. Just thought I would let you know. Blessings, Horsley Re: ?'s about Baclofen , Some mito docs feel that Depakote is not good for mito patients. Ithought you mentioned that your daughter was on Depakote also.( Hope Ididn't reply to the wrong message, there are so many to sift through.)You should be able to do a search on google regarding depakote & mito, ortry the UMDF site. If I remember correctly Depakote can contribute toHyperammonemia (high ammonia) which can be a problem with mito kidsanyways. I know that our Lily had very high ammonia levels which did comedone (mostly) after finally being taken off Depakene(liquid depakote). Ifyou want specific references to the mito toxicity let me know and I'll dosome digging. LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , We were told by Dr. Shoffner to get our off of Depakote for this same reason. Just thought I would let you know. Blessings, Horsley Re: ?'s about Baclofen , Some mito docs feel that Depakote is not good for mito patients. Ithought you mentioned that your daughter was on Depakote also.( Hope Ididn't reply to the wrong message, there are so many to sift through.)You should be able to do a search on google regarding depakote & mito, ortry the UMDF site. If I remember correctly Depakote can contribute toHyperammonemia (high ammonia) which can be a problem with mito kidsanyways. I know that our Lily had very high ammonia levels which did comedone (mostly) after finally being taken off Depakene(liquid depakote). Ifyou want specific references to the mito toxicity let me know and I'll dosome digging. LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 , You didn't reply to the wrong message.It was me,talking about .She was put on Depakote before we knew about the mito.Her doc's tried probably 7 or 8 different meds trying to get her off the Depakote but none ever worked for her.They finally decided the seizures were more dangerous for her than the Depakote. Thanks, , Mom to Re: ?'s about Baclofen > , > > Some mito docs feel that Depakote is not good for mito patients. I > thought you mentioned that your daughter was on Depakote also.( Hope I > didn't reply to the wrong message, there are so many to sift through.) > You should be able to do a search on google regarding depakote & mito, or > try the UMDF site. If I remember correctly Depakote can contribute to > Hyperammonemia (high ammonia) which can be a problem with mito kids > anyways. I know that our Lily had very high ammonia levels which did come > done (mostly) after finally being taken off Depakene(liquid depakote). If > you want specific references to the mito toxicity let me know and I'll do > some digging. > > Lee > Mom to Red, Ada & Angel Lily > > > ________________________________________________________________ > The best thing to hit the internet in years - Juno SpeedBand! > Surf the web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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