Guest guest Posted April 19, 1998 Report Share Posted April 19, 1998 Jeannine, I wish I could remember where I read this but I read once that sometimes children will be born dependent on nutrients that the mom had too high a level of during pregnancy OR was deprived of. I remember it because I thought maybe our B vitamin problems might be a result of some genetic mutation that happened when my ancestors left Missouri in the dead of winter and crossed the plains and of course were deprived of basic nutrients. This happened to be a family line where there appears to be a definite problem coming down thru. Perhaps your inborn problem (if that is what it is and it sounds like it must be) with too high a level of the carnitine has caused the kids to have an inborn dependency of it if this is possible.??? S. Re: medications > > >GOLYNIE@... wrote: > >> The people who produce " Carnitor " (if that is what you are taking) are >> excelent at answering any questions you might have about their product. > >Lynnie, > >I am NOT on carnitor of any type. I just had several metabolic labs done for mitochondrial evaluation and >the results of the acylcarnitine profile showed high serum levels of total carnitine, and low urine levels >of free carnitine, as well as high urine ratio of acylcarnitine to free carnitine. > >This is why I was so surprised. I have seen high serum levels in the girls when they were treated, but I >do not take carnitine. I was told that this is apparently seen in folks with Electron transport problems. > >But I find this really unusual considering that Caitlin is deficient and Genny runs very low normal. > >Jeannine > > > > >------------------------------------------------------------------------ >Have you visited the new ONElist home page lately? >http://www.ONElist.com >ONElist: The Leading e-mail list and community service on the Internet! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Lamictal is one of the drugs that have been suggested by two mito specialists as an appropriate and safe drug for my daughter. Just stay away from the depakote if you can. Barbara In a message dated 4/15/99 8:40 Eastern Daylight Time, jnrmodels@... writes: > Thanks Lynnie and everyone else for answering my question on > medication and mito patients. Do not know of Depakote here. has > just been put on Lamictal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Lamictal is one of the drugs that have been suggested by two mito specialists as an appropriate and safe drug for my daughter. Just stay away from the depakote if you can. Barbara In a message dated 4/15/99 8:40 Eastern Daylight Time, jnrmodels@... writes: > Thanks Lynnie and everyone else for answering my question on > medication and mito patients. Do not know of Depakote here. has > just been put on Lamictal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 In a message dated 99-04-15 21:55:10 EDT, you write: << Lynne, Isn't it also helpful while on that drug to also prescribe carnitine to help with the toxicity. Jeannine >> Jeannine: You are right, CArnitor should be given (so says all of Amy's docs...and she sure purked up with the addition of lg. amounts of Carnitor) Why wouldn't Carnitor help,though. It is one of at least two gate keepers for chemicals getting into the mitochondria. Without Carnitor and CoQ-10 the mitochondria would lock the chemicals from food out! Many of us who have what our children have should also be on Carnitor! Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Do you live in Australia? Depakote IS the same drug as Epilim. So it is great that you are already reducing it. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity - living in Brisbane, Australia) ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Do you live in Australia? Depakote IS the same drug as Epilim. So it is great that you are already reducing it. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity - living in Brisbane, Australia) ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Do you live in Australia? Depakote IS the same drug as Epilim. So it is great that you are already reducing it. Lynne (Mummy of Angus, 6, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity - living in Brisbane, Australia) ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Forgot to mention (just in case you don't know) that while is on Epilim she should be having regular liver function tests, at least monthly. Lynne ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Forgot to mention (just in case you don't know) that while is on Epilim she should be having regular liver function tests, at least monthly. Lynne ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Dear Aileen Forgot to mention (just in case you don't know) that while is on Epilim she should be having regular liver function tests, at least monthly. Lynne ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: " Flynn " at SMTPGateway Date: 16/4/1999 11:27 Thanks Lynnie and everyone else for answering my question on medication and mito patients. Do not know of Depakote here. has just been put on Lamictal and we are decreasing her Epilim gradually and then her Rivitril and hopefully there will be no hiccups on the way. BFN Aileen ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 In a message dated 99-04-15 23:19:38 EDT, you write: << Speaking of carnitine: I just got my acylcarnitine profile back and the serum carnitine was high, almost double what it should have been. I am NOT on carnitine. My urine carnitine was also low. This caused the ratio to be out of wack as well, but I've never heard of this type of thing. There were also several levels (acylcarnitines) that were high enough to be mentioned on the results. Has anyone else seen these kinds of results? We hear all the time about deficiency, but I thought that this was pretty strange. Jeannine >> Dear Jeannine: The people who produce " Carnitor " (if that is what you are taking) are excelent at answering any questions you might have about their product. They are BY FAR the most personal, and humain of all the corporate entaties I have ever worked with! I am sure they could answer, if not point you in the right direction! Their number for medical information is . My best to you & let me know what they say. Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Lynne, Isn't it also helpful while on that drug to also prescribe carnitine to help with the toxicity. Jeannine LynneSeear@... wrote: > Forgot to mention (just in case you don't know) that while is > on Epilim she should be having regular liver function tests, at least > monthly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Lynne, Isn't it also helpful while on that drug to also prescribe carnitine to help with the toxicity. Jeannine LynneSeear@... wrote: > Forgot to mention (just in case you don't know) that while is > on Epilim she should be having regular liver function tests, at least > monthly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Lynne, Isn't it also helpful while on that drug to also prescribe carnitine to help with the toxicity. Jeannine LynneSeear@... wrote: > Forgot to mention (just in case you don't know) that while is > on Epilim she should be having regular liver function tests, at least > monthly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Jeannine Yes you are right about the carnitine. Even though carnitine is now used regularly as part of the 'mito' cocktail, it is also used in liver rescue therapies for people in liver failure. So taking carnitine while on depakote/epilim certainly is a good idea. Lynne ______________________________ Reply Separator _________________________________ Subject: Re: medications Author: Jeannine Sawyer at SMTPGateway Date: 15/4/1999 20:55 Lynne, Isn't it also helpful while on that drug to also prescribe carnitine to help with the toxicity. Jeannine LynneSeear@... wrote: > Forgot to mention (just in case you don't know) that while is > on Epilim she should be having regular liver function tests, at least > monthly. ------------------------------------------------------------------------ Did you know that we add over 1,000 new e-mail communities every day? http://www.ONElist.com Explore a new hobby, discover a new friend, laugh at a new joke! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Speaking of carnitine: I just got my acylcarnitine profile back and the serum carnitine was high, almost double what it should have been. I am NOT on carnitine. My urine carnitine was also low. This caused the ratio to be out of wack as well, but I've never heard of this type of thing. There were also several levels (acylcarnitines) that were high enough to be mentioned on the results. Has anyone else seen these kinds of results? We hear all the time about deficiency, but I thought that this was pretty strange. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Jeannine, Yes, this is true. When Alison was first placed on Depakote her ammonia levels went very high, in the 100's. They put her on Carnitine to help reduce the ammonia levels (which I think are a result of liver function). I have some literature somewhere on this that I'll dig up and post more if I can find it!! Barbara > Isn't it also helpful while on that drug to also prescribe carnitine to help > with the toxicity. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 1999 Report Share Posted April 18, 1999 GOLYNIE@... wrote: > The people who produce " Carnitor " (if that is what you are taking) are > excelent at answering any questions you might have about their product. Lynnie, I am NOT on carnitor of any type. I just had several metabolic labs done for mitochondrial evaluation and the results of the acylcarnitine profile showed high serum levels of total carnitine, and low urine levels of free carnitine, as well as high urine ratio of acylcarnitine to free carnitine. This is why I was so surprised. I have seen high serum levels in the girls when they were treated, but I do not take carnitine. I was told that this is apparently seen in folks with Electron transport problems. But I find this really unusual considering that Caitlin is deficient and Genny runs very low normal. Jeannine Quote Link to comment Share on other sites More sharing options...
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