Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 It's Depakote that should be avoided by mito people. It can be toxic to the liver, and can also lower carnitine levels. My carnitine levels have always been severely low so it was automatic that I had to be on high dose carnitine supplementation. I would think it would be important no matter how low the levels to be on some supplementation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Ok I know Depakene is not recommended in Mito, but what specifically shouldwe be looking for. Is it just the side effects listed to a greater degreeor is it something else? Valproate (valproic acid), which is the medication in both Depakote and Depakene, can itself cause a "mito-like syndrome" which mimics the symptoms of mitochondrial disease. I know that Dr. Korson, in Boston, is not seeing new patients who are already on valproate until they have been weaned off of it. At least a couple of his potential patients had their symptoms resolve once they had discontinued valproate. I am not saying that this would happen in your case, only that it's possible. My daughter was on Depakote for 5 years. It was started long before anyone suspected mito. Dr. Korson feels that it possibly contributed, along with several significant infections, to the downward spiral that led to her death last month. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My son has been on Depakene/Depakote for more than 9 years, since he turned 3 and started having seizures. He was started on the Depakene before anyone knew he had mito, and it turned out to be the only thing that kept his seizures under control. I have checked with multiple doctors every time there has been a UMDF conference (including Drs. Cohen and Shofner) and been told by all of them that as long as he has been on it this long without problems and as long as we monitor his liver function and blood, they think that it is OK to keep him on it (although obviously not ideal). I've also been told that when problems are going to arise, they usually arise early, so that a long history without problems may mean that it's safer. The main thing with my son is that the worst effects that he has from mito are when his seizures get out of control, and nothing but Depakene has ever helped. The e-mail about Dr. Korson (who was actually my son's doctor very briefly just before we moved away from Boston) was very troubling to me--I can't imagine what I'd do if a mito dr. refused to see my son because he's on Depakote; I'm sitting here stunned at the idea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My son has been on Depakene/Depakote for more than 9 years, since he turned 3 and started having seizures. He was started on the Depakene before anyone knew he had mito, and it turned out to be the only thing that kept his seizures under control. I have checked with multiple doctors every time there has been a UMDF conference (including Drs. Cohen and Shofner) and been told by all of them that as long as he has been on it this long without problems and as long as we monitor his liver function and blood, they think that it is OK to keep him on it (although obviously not ideal). I've also been told that when problems are going to arise, they usually arise early, so that a long history without problems may mean that it's safer. The main thing with my son is that the worst effects that he has from mito are when his seizures get out of control, and nothing but Depakene has ever helped. The e-mail about Dr. Korson (who was actually my son's doctor very briefly just before we moved away from Boston) was very troubling to me--I can't imagine what I'd do if a mito dr. refused to see my son because he's on Depakote; I'm sitting here stunned at the idea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My son has been on Depakene/Depakote for more than 9 years, since he turned 3 and started having seizures. He was started on the Depakene before anyone knew he had mito, and it turned out to be the only thing that kept his seizures under control. I have checked with multiple doctors every time there has been a UMDF conference (including Drs. Cohen and Shofner) and been told by all of them that as long as he has been on it this long without problems and as long as we monitor his liver function and blood, they think that it is OK to keep him on it (although obviously not ideal). I've also been told that when problems are going to arise, they usually arise early, so that a long history without problems may mean that it's safer. The main thing with my son is that the worst effects that he has from mito are when his seizures get out of control, and nothing but Depakene has ever helped. The e-mail about Dr. Korson (who was actually my son's doctor very briefly just before we moved away from Boston) was very troubling to me--I can't imagine what I'd do if a mito dr. refused to see my son because he's on Depakote; I'm sitting here stunned at the idea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 The e-mail about Dr. Korson (who was actually my son's doctor very briefly just before we moved away from Boston) was very troubling to me--I can't imagine what I'd do if a mito dr. refused to see my son because he's on Depakote; I'm sitting here stunned at the idea. Hi , I can't imagine that Dr. Korson is totally inflexible about this. Obviously, your son's history is unique. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My daughter andra died 10 years ago from depakote hepatoxicity. She was 4 years old and had been taking the drug for 9 weeks, with no previous indications of liver problems. Her liver failure was sudden and dramatic, much as Melody has described in , and though she underwent a liver transplant it did not save her. Her mito was undiagnosed at the time, but she was basically a high-functioning normally developed child with a mild seizure disorder. There are a lot of myths out there about depakote, including that the toxicity occurs only in the first weeks of therapy. In fact there have been several documented cases of patients succumbing to depakote toxicity after some years on the drug. I do understand the dilemma of parents who have no other choice for their child, but it is a complex drug and its use requires careful monitoring in the mito population. Our pediatric gastroenterologist told us after Ally’s death that while many drugs can be lethal in overdose, there aren’t many that can kill you outright within therapeutic doses and depakote is one of those. If I had to have a child on depakote today, I would insist on regular liver function tests – fortnightly, probably, and certainly any time there is a viral illness. The reaction in the liver is insidious, and will show up in blood tests sometimes weeks before there are clinical symptoms. Carnitine should always be taken in conjunction with depakote, as it has been shown to have some protective value. In fact high dose carnitine is one of the things they use to treat people in liver failure. Lynne (Mummy of and Angus, both in heaven) -----Original Message----- From: Melody Sent: Monday, 12 January 2004 11:54 AM To: Mito Subject: Re: Depakene After just 2 weeks on Depakene, my daughter went into full blown liver failure and almost died. Her abdomen swelled, she was very jaundiced (orange) and had generalized edema as well. Symptoms started with extreme lethargy, nausea and dehydration and progressed to near death overnight (literally). She was in intensive care for a month and was taken off Depakene immediately. Once she stabilized, a liver biopsy was performed and she was found to have cirrhosis. She had not had any abnormal liver functions, jaundice or any indication of liver disease prior to taking the Depakene. The liver specialist was unable to determine if the Depakene caused this condition or else exacerbated an already present liver condition that we were unaware of. Ironically, Depakene was the only thing that had controlled her seizures up to this point and she had been on EVERYTHING on the market. , passed away thi! s past Oct. 5, nine years later, from complications of liver and renal failure. Melody (mom to precious angel ~ 5/24/93-10/5/03~, and Matt -age 16) wrote: Ok I know Depakene is not recommended in Mito, but what specifically should we be looking for. Is it just the side effects listed to a greater degree or is it something else? How do you tell when a lot of the side effects are things we see every day? How bad is it to continue with an already low Carnitine level? We just got Will's back yesterday and it was listed as moderatley low. For those of you with low Carnitine levels when do your doctors start to worry about them? Thank you for any help you can give us. We have a Dr who knows nothing and is no help in any of this. Sarsh Please contact mito-owner with any problems or questions. Yahoo! Groups Links · To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My daughter andra died 10 years ago from depakote hepatoxicity. She was 4 years old and had been taking the drug for 9 weeks, with no previous indications of liver problems. Her liver failure was sudden and dramatic, much as Melody has described in , and though she underwent a liver transplant it did not save her. Her mito was undiagnosed at the time, but she was basically a high-functioning normally developed child with a mild seizure disorder. There are a lot of myths out there about depakote, including that the toxicity occurs only in the first weeks of therapy. In fact there have been several documented cases of patients succumbing to depakote toxicity after some years on the drug. I do understand the dilemma of parents who have no other choice for their child, but it is a complex drug and its use requires careful monitoring in the mito population. Our pediatric gastroenterologist told us after Ally’s death that while many drugs can be lethal in overdose, there aren’t many that can kill you outright within therapeutic doses and depakote is one of those. If I had to have a child on depakote today, I would insist on regular liver function tests – fortnightly, probably, and certainly any time there is a viral illness. The reaction in the liver is insidious, and will show up in blood tests sometimes weeks before there are clinical symptoms. Carnitine should always be taken in conjunction with depakote, as it has been shown to have some protective value. In fact high dose carnitine is one of the things they use to treat people in liver failure. Lynne (Mummy of and Angus, both in heaven) -----Original Message----- From: Melody Sent: Monday, 12 January 2004 11:54 AM To: Mito Subject: Re: Depakene After just 2 weeks on Depakene, my daughter went into full blown liver failure and almost died. Her abdomen swelled, she was very jaundiced (orange) and had generalized edema as well. Symptoms started with extreme lethargy, nausea and dehydration and progressed to near death overnight (literally). She was in intensive care for a month and was taken off Depakene immediately. Once she stabilized, a liver biopsy was performed and she was found to have cirrhosis. She had not had any abnormal liver functions, jaundice or any indication of liver disease prior to taking the Depakene. The liver specialist was unable to determine if the Depakene caused this condition or else exacerbated an already present liver condition that we were unaware of. Ironically, Depakene was the only thing that had controlled her seizures up to this point and she had been on EVERYTHING on the market. , passed away thi! s past Oct. 5, nine years later, from complications of liver and renal failure. Melody (mom to precious angel ~ 5/24/93-10/5/03~, and Matt -age 16) wrote: Ok I know Depakene is not recommended in Mito, but what specifically should we be looking for. Is it just the side effects listed to a greater degree or is it something else? How do you tell when a lot of the side effects are things we see every day? How bad is it to continue with an already low Carnitine level? We just got Will's back yesterday and it was listed as moderatley low. For those of you with low Carnitine levels when do your doctors start to worry about them? Thank you for any help you can give us. We have a Dr who knows nothing and is no help in any of this. Sarsh Please contact mito-owner with any problems or questions. Yahoo! Groups Links · To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 My daughter andra died 10 years ago from depakote hepatoxicity. She was 4 years old and had been taking the drug for 9 weeks, with no previous indications of liver problems. Her liver failure was sudden and dramatic, much as Melody has described in , and though she underwent a liver transplant it did not save her. Her mito was undiagnosed at the time, but she was basically a high-functioning normally developed child with a mild seizure disorder. There are a lot of myths out there about depakote, including that the toxicity occurs only in the first weeks of therapy. In fact there have been several documented cases of patients succumbing to depakote toxicity after some years on the drug. I do understand the dilemma of parents who have no other choice for their child, but it is a complex drug and its use requires careful monitoring in the mito population. Our pediatric gastroenterologist told us after Ally’s death that while many drugs can be lethal in overdose, there aren’t many that can kill you outright within therapeutic doses and depakote is one of those. If I had to have a child on depakote today, I would insist on regular liver function tests – fortnightly, probably, and certainly any time there is a viral illness. The reaction in the liver is insidious, and will show up in blood tests sometimes weeks before there are clinical symptoms. Carnitine should always be taken in conjunction with depakote, as it has been shown to have some protective value. In fact high dose carnitine is one of the things they use to treat people in liver failure. Lynne (Mummy of and Angus, both in heaven) -----Original Message----- From: Melody Sent: Monday, 12 January 2004 11:54 AM To: Mito Subject: Re: Depakene After just 2 weeks on Depakene, my daughter went into full blown liver failure and almost died. Her abdomen swelled, she was very jaundiced (orange) and had generalized edema as well. Symptoms started with extreme lethargy, nausea and dehydration and progressed to near death overnight (literally). She was in intensive care for a month and was taken off Depakene immediately. Once she stabilized, a liver biopsy was performed and she was found to have cirrhosis. She had not had any abnormal liver functions, jaundice or any indication of liver disease prior to taking the Depakene. The liver specialist was unable to determine if the Depakene caused this condition or else exacerbated an already present liver condition that we were unaware of. Ironically, Depakene was the only thing that had controlled her seizures up to this point and she had been on EVERYTHING on the market. , passed away thi! s past Oct. 5, nine years later, from complications of liver and renal failure. Melody (mom to precious angel ~ 5/24/93-10/5/03~, and Matt -age 16) wrote: Ok I know Depakene is not recommended in Mito, but what specifically should we be looking for. Is it just the side effects listed to a greater degree or is it something else? How do you tell when a lot of the side effects are things we see every day? How bad is it to continue with an already low Carnitine level? We just got Will's back yesterday and it was listed as moderatley low. For those of you with low Carnitine levels when do your doctors start to worry about them? Thank you for any help you can give us. We have a Dr who knows nothing and is no help in any of this. Sarsh Please contact mito-owner with any problems or questions. Yahoo! Groups Links · To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ · Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I just heard from the Neuro thatprescribed it and he told us to stop Hi , Pls keep us updated! Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Thank you all for your responses. I just heard from the Neuro that prescribed it and he told us to stop. He wants to see Will ASAP just waiting on referrals. Hopefully we'll hear something tomm. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Thank you all for your responses. I just heard from the Neuro that prescribed it and he told us to stop. He wants to see Will ASAP just waiting on referrals. Hopefully we'll hear something tomm. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 , Carnitine and Seizure meds require balance like a teeter-totter. Increasing carnitine can cause more seizures or a decrease in the therapeutic level of certain seizure drugs. In addition, Depakote and other seizure meds (not sure exactly which ones) can decrease a persons carnitine levels. I attended the UMDF conference in Cleveland where they presented a case in which a person with mito benefited with taking Depakote for I believe it was cardiac (heart failure?). So unfortunately what normally causes harm for some can be beneficial for others. I will see if I can find the article or website about it but I have changed computers and don't believe I still have that info. HTH, Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 , Carnitine and Seizure meds require balance like a teeter-totter. Increasing carnitine can cause more seizures or a decrease in the therapeutic level of certain seizure drugs. In addition, Depakote and other seizure meds (not sure exactly which ones) can decrease a persons carnitine levels. I attended the UMDF conference in Cleveland where they presented a case in which a person with mito benefited with taking Depakote for I believe it was cardiac (heart failure?). So unfortunately what normally causes harm for some can be beneficial for others. I will see if I can find the article or website about it but I have changed computers and don't believe I still have that info. HTH, Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 , Carnitine and Seizure meds require balance like a teeter-totter. Increasing carnitine can cause more seizures or a decrease in the therapeutic level of certain seizure drugs. In addition, Depakote and other seizure meds (not sure exactly which ones) can decrease a persons carnitine levels. I attended the UMDF conference in Cleveland where they presented a case in which a person with mito benefited with taking Depakote for I believe it was cardiac (heart failure?). So unfortunately what normally causes harm for some can be beneficial for others. I will see if I can find the article or website about it but I have changed computers and don't believe I still have that info. HTH, Loriann Quote Link to comment Share on other sites More sharing options...
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