Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi Dawn, How are you doing? Have you gotten Josh's bx results yet? Yhere are 2 forms of carnitine; Levo-Carnitine (or L-carnitine) is the form easily absorbed and used by muscle tissue. It does not pass the blood brain barrier. Acetyl-L-Carnitine does pass the blood brain barrier and is readily absorbed and used by the CNS. I believe this is the form associated more with seizures. Chelsea has been on Carnitore, which is L-Carnitine for 5 yrs, but I am not sure if it has caused or aggrevated seizures in her. There is a 3rd form of carnitine which is to be avoided, D-carnitine, I believe it is called. It can cause heart problems. HTH e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi Dawn, How are you doing? Have you gotten Josh's bx results yet? Yhere are 2 forms of carnitine; Levo-Carnitine (or L-carnitine) is the form easily absorbed and used by muscle tissue. It does not pass the blood brain barrier. Acetyl-L-Carnitine does pass the blood brain barrier and is readily absorbed and used by the CNS. I believe this is the form associated more with seizures. Chelsea has been on Carnitore, which is L-Carnitine for 5 yrs, but I am not sure if it has caused or aggrevated seizures in her. There is a 3rd form of carnitine which is to be avoided, D-carnitine, I believe it is called. It can cause heart problems. HTH e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 My son has seizures (before the carnitor). I didn't know about any warnings about seizures. Can you tell me what those warnings are? My only complaint was that he starting having diarrhea. I feel pretty positive it was from that as once we got stopped, the diarrhea stopped. It didn't seem to affect him one way or another, so I doubt it was doing any good. course my son is not diagnosed. thanks, Mama to Seamas, 9 and Liam, 4 - myoclonic seizures, global dev. delay, possible mito - no dx > > Hi all, > I was just wonder for those of you who have children who take > carnitor have you expirenced seizures with it? The Dr. put my son > Josh on it and my husband read the warnings about seizures. Also > can anyone give me helpful hints on how to teach Josh to swallow > pills? The dr said have him practice with m & ms, good idea but > wondering if there is other ways too. > Have a great day, > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 My son has seizures (before the carnitor). I didn't know about any warnings about seizures. Can you tell me what those warnings are? My only complaint was that he starting having diarrhea. I feel pretty positive it was from that as once we got stopped, the diarrhea stopped. It didn't seem to affect him one way or another, so I doubt it was doing any good. course my son is not diagnosed. thanks, Mama to Seamas, 9 and Liam, 4 - myoclonic seizures, global dev. delay, possible mito - no dx > > Hi all, > I was just wonder for those of you who have children who take > carnitor have you expirenced seizures with it? The Dr. put my son > Josh on it and my husband read the warnings about seizures. Also > can anyone give me helpful hints on how to teach Josh to swallow > pills? The dr said have him practice with m & ms, good idea but > wondering if there is other ways too. > Have a great day, > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 , The warning that came with the medicine, says to contact a dr if seziures occur, but above that it says that seizures may occur if you are on ESRD/dialysis and take it orally instead of the (IV) form. Thanks, Dawn jacobshoor wrote: My son has seizures (before the carnitor). I didn't know about any warnings about seizures. Can you tell me what those warnings are?My only complaint was that he starting having diarrhea. I feel pretty positive it was from that as once we got stopped, the diarrhea stopped. It didn't seem to affect him one way or another, so I doubt it was doing any good.course my son is not diagnosed.thanks,Mama to Seamas, 9 and Liam, 4 - myoclonic seizures, global dev. delay, possible mito - no dx> > Hi all,> I was just wonder for those of you who have children who take > carnitor have you expirenced seizures with it? The Dr. put my son > Josh on it and my husband read the warnings about seizures. Also > can anyone give me helpful hints on how to teach Josh to swallow > pills? The dr said have him practice with m & ms, good idea but > wondering if there is other ways too.> Have a great day,> DawnPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 , The warning that came with the medicine, says to contact a dr if seziures occur, but above that it says that seizures may occur if you are on ESRD/dialysis and take it orally instead of the (IV) form. Thanks, Dawn jacobshoor wrote: My son has seizures (before the carnitor). I didn't know about any warnings about seizures. Can you tell me what those warnings are?My only complaint was that he starting having diarrhea. I feel pretty positive it was from that as once we got stopped, the diarrhea stopped. It didn't seem to affect him one way or another, so I doubt it was doing any good.course my son is not diagnosed.thanks,Mama to Seamas, 9 and Liam, 4 - myoclonic seizures, global dev. delay, possible mito - no dx> > Hi all,> I was just wonder for those of you who have children who take > carnitor have you expirenced seizures with it? The Dr. put my son > Josh on it and my husband read the warnings about seizures. Also > can anyone give me helpful hints on how to teach Josh to swallow > pills? The dr said have him practice with m & ms, good idea but > wondering if there is other ways too.> Have a great day,> DawnPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 e, Hi, how are you? We are doing good here. Still have not gottten the results back from 's biopsy. Went to the dr on tuesday and she was furious that the lab here in Grand Rapids had not even sent the results back. She managed to get them faxed over, also some from Mayo, the only thing we found out so far is that there is no signs on dying tissue. She was making sure that the muscle was sent to several other places too and that we will porobably not here from them until after the first of the year. Josh is taking L-carnitine,he took his first on this morning. He takes it three times a day, do you know if it has to be every 8 hrs or can it be morning noon and night? How is Chelsea doing? I hope good. Talk to you later, Dawnjayvelde@... wrote: Hi Dawn, How are you doing? Have you gotten Josh's bx results yet? Yhere are 2 forms of carnitine; Levo-Carnitine (or L-carnitine) is the form easily absorbed and used by muscle tissue. It does not pass the blood brain barrier. Acetyl-L-Carnitine does pass the blood brain barrier and is readily absorbed and used by the CNS. I believe this is the form associated more with seizures. Chelsea has been on Carnitore, which is L-Carnitine for 5 yrs, but I am not sure if it has caused or aggrevated seizures in her. There is a 3rd form of carnitine which is to be avoided, D-carnitine, I believe it is called. It can cause heart problems. HTH e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 e, Hi, how are you? We are doing good here. Still have not gottten the results back from 's biopsy. Went to the dr on tuesday and she was furious that the lab here in Grand Rapids had not even sent the results back. She managed to get them faxed over, also some from Mayo, the only thing we found out so far is that there is no signs on dying tissue. She was making sure that the muscle was sent to several other places too and that we will porobably not here from them until after the first of the year. Josh is taking L-carnitine,he took his first on this morning. He takes it three times a day, do you know if it has to be every 8 hrs or can it be morning noon and night? How is Chelsea doing? I hope good. Talk to you later, Dawnjayvelde@... wrote: Hi Dawn, How are you doing? Have you gotten Josh's bx results yet? Yhere are 2 forms of carnitine; Levo-Carnitine (or L-carnitine) is the form easily absorbed and used by muscle tissue. It does not pass the blood brain barrier. Acetyl-L-Carnitine does pass the blood brain barrier and is readily absorbed and used by the CNS. I believe this is the form associated more with seizures. Chelsea has been on Carnitore, which is L-Carnitine for 5 yrs, but I am not sure if it has caused or aggrevated seizures in her. There is a 3rd form of carnitine which is to be avoided, D-carnitine, I believe it is called. It can cause heart problems. HTH e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 We had sort of a similar situation awhile ago with Grace. At the time she was on 12 to 14 different meds a day, some were twice a day some were three times a day, and they were often changed so I was getting confused. Being that Carnitor is the most important med in Gracies cocktail, I asked Dr. Cohen about a single dose. He said that you just can't do a single dose, because it does not stay in the system long enough. He did let us change it to twice a day dosing. You would need to ask the doctor about the dosing, because her daily amount did change with the bid dosing. I don't think there would be any withdrawl sypmtoms if he is not getting the correct dosing. But, if he is deficient he could be having faster progression of the disease. If your son is old enough ask him to remind his dad about taking the medicine. I'm usually pretty good at remembering everything, but before my coffee in the morning I can forget anything. My two older girls are very good about reminding me to give them there ADD medicine if I forget. They know and understand well that if they don't take it, they will have a hard day in school. I don't like to think about it, knowing my 7 year old is reminding me of stuff, but on the other hand we are all human. Best wishes Try the new Beta version of MSN Messenger - it's FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 The reasons its supposed to be broken up is because it tends to cause side effects (like the diarrhea nightmare weve been dealing with over here, but also more severe ones like siezures), and breaking it into smaller doses seems to reduce that... at least thats how my pharmacist explained it... it may also be important to keep a constant level in the body, but im just guessing on that one... Sorry your dealing with an uncooperative husband on the matter... thats gotta be rough... With we noticed that both times we reduced the dosage, and when we ultimately stopped it, s symptoms got worse temporarily, but they seemed to go away after a few days... > > Hi All, > I have a question about carnitor. Josh is supposed to be taking > his pill three times a day, unfortunatly my husband who sees nothing > physically wrong with him convenientaly forgets to give him the two > doses a day while I'm either sleeping or at work (3rd shift). Does it > have to be given three times a day or can it be given all at once? > Also if he has been taking it and has gotten some what use to it, will > he have " symptoms " occur? I'll explain... he has been worried saying > that his leg and arm is shakey like it was when he had encephilitis > two years ago. I'm not hearing any slurred speech or other problems > just his complaint about his leg and arm and only when he is playing > some type of sport. Hope this made sense, thanks ahead of time for > your replys. Have a great day. > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Hi Dawn, I take my carnitor once a day, at bedtime. It causes serious GI problems for me (ulcers, mostly) that I take one mega-dose and pray that sleep comes quickly. Since I have gastroparesis and delayed gastric emptying, it's like having a built in time-release mechanism. It works for me, but I don't recommend it for anyone else without checking with your doctor first. Theresa > > Hi All, > I have a question about carnitor. Josh is supposed to be taking > his pill three times a day, unfortunatly my husband who sees nothing > physically wrong with him convenientaly forgets to give him the two > doses a day while I'm either sleeping or at work (3rd shift). Does it > have to be given three times a day or can it be given all at once? > Also if he has been taking it and has gotten some what use to it, will > he have " symptoms " occur? I'll explain... he has been worried saying > that his leg and arm is shakey like it was when he had encephilitis > two years ago. I'm not hearing any slurred speech or other problems > just his complaint about his leg and arm and only when he is playing > some type of sport. Hope this made sense, thanks ahead of time for > your replys. Have a great day. > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi, it's been a long time but I'm back home! I have a lot to update but I eanted to get this message out quick. I'm looking for someone who has been prescribed carnitor but doesn't have insurance coverage for it. Please email me at mom2colemankidz3@... if you're in this situation. I came home to about 400 emails so I barely know where to start. I'll update all about my wild ride soon, but please keep the happy thoughts and prayers coming my way. Thanks, HeidiC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Heidi I am so glad you are finally home. You will be there in my thoughts and prayers. laurie > Hi, it's been a long time but I'm back home! I have a lot to update > but I eanted to get this message out quick. I'm looking for someone > who has been prescribed carnitor but doesn't have insurance coverage > for it. Please email me at mom2colemankidz3@... if you're in this > situation. I came home to about 400 emails so I barely know where to > start. I'll update all about my wild ride soon, but please keep the > happy thoughts and prayers coming my way. > Thanks, > HeidiC > > > > > > 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...
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