Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 I'm not , but my son's carnitine levels recently came back low and his ped prescribed Carnitor at 50mg twice per day (which comes out to 1 teaspoon twice per day). It is based on weight, and my son is 35 lbs. Actually, I give it to him as 1/2 teaspoon 4 times per day (always with food) since there is a risk of stomach upset/diarrhea. > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2006 Report Share Posted November 15, 2006 --- Hi Deborah My DAN doctor prescribed Carnitor for my son, he was low in it also. Carnitor has helped him with his energy levels, hipotonia and mainly with his constipation problems. It comes in liquid and pills. We use pills and we give it with his meals. But is a prescription, not something that you can buy over the counter. Your pediatrician should be able to prescribe it. Correia In , " deborah_baccan " <deborah_baccan@...> wrote: > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 I'm not , but my son's carnitine levels recently came back low and his ped prescribed Carnitor at 50mg twice per day (which comes out to 1 teaspoon twice per day). It is based on weight, and my son is 35 lbs. Actually, I give it to him as 1/2 teaspoon 4 times per day (always with food) since there is a risk of stomach upset/diarrhea. > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 --- Hi Deborah My DAN doctor prescribed Carnitor for my son, he was low in it also. Carnitor has helped him with his energy levels, hipotonia and mainly with his constipation problems. It comes in liquid and pills. We use pills and we give it with his meals. But is a prescription, not something that you can buy over the counter. Your pediatrician should be able to prescribe it. Correia In , " deborah_baccan " <deborah_baccan@...> wrote: > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 Thanks, How long have you been suplementing with Carnitor? Have you seen any results? I know that we may not see what it is doing, specially with such a deficiency, however I am really hoping that will help my son's muscle tone in his face. Deborah fkewatson <kwatsoneei@...> wrote: I'm not , but my son's carnitine levels recently came back low and his ped prescribed Carnitor at 50mg twice per day (which comes out to 1 teaspoon twice per day). It is based on weight, and my son is 35 lbs. Actually, I give it to him as 1/2 teaspoon 4 times per day (always with food) since there is a risk of stomach upset/diarrhea. > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 > Doses for Carnitor (of Levocarnitine) liquid (100 mg/cc) 25-50 mg/kg/day divided into 3 doses, taken with meals. If your child has a moderate/severe carnitine deficiecy consider starting closer to 35-40 mg/kg/day. If mild, start at 25 mg/kg/day. We started ph on 25mg/kg/day...recommendation of Stanford metabolic specialist...and after 6 weeks he still had not normalized. He is now closer to 50 mg/kg/day. Levels should be rechecked in 1-2 months to see if you have normalized or gone too high etc to adjust dose. No harm in going too high...its really safe stuff (and too much will make someone smell like fish). But why give more than needed etc, especially since the stomach upset is dose-dependent. - > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 > > > > Hi , > > My pediatritian just called and she told me that 's Carnitine's > > levels are below 1/2 ... what a surprise. I asked her to prescribe > it > > for me, but she is not very familiar with it. Did you say you use > > Carnitor? how much? she asked if it is a liquid, powder or pills? > I > > told her that I would contact you and then fax her and she is willing > > to prescribe what you are using. Thanks, I will post the results as > > soon as I get them. Deborah > > > > > > > > > --------------------------------- > Sponsored Link > > Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 Thanks, How long have you been suplementing with Carnitor? Have you seen any results? I know that we may not see what it is doing, specially with such a deficiency, however I am really hoping that will help my son's muscle tone in his face. Deborah fkewatson <kwatsoneei@...> wrote: I'm not , but my son's carnitine levels recently came back low and his ped prescribed Carnitor at 50mg twice per day (which comes out to 1 teaspoon twice per day). It is based on weight, and my son is 35 lbs. Actually, I give it to him as 1/2 teaspoon 4 times per day (always with food) since there is a risk of stomach upset/diarrhea. > > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 > Doses for Carnitor (of Levocarnitine) liquid (100 mg/cc) 25-50 mg/kg/day divided into 3 doses, taken with meals. If your child has a moderate/severe carnitine deficiecy consider starting closer to 35-40 mg/kg/day. If mild, start at 25 mg/kg/day. We started ph on 25mg/kg/day...recommendation of Stanford metabolic specialist...and after 6 weeks he still had not normalized. He is now closer to 50 mg/kg/day. Levels should be rechecked in 1-2 months to see if you have normalized or gone too high etc to adjust dose. No harm in going too high...its really safe stuff (and too much will make someone smell like fish). But why give more than needed etc, especially since the stomach upset is dose-dependent. - > Hi , > My pediatritian just called and she told me that 's Carnitine's > levels are below 1/2 ... what a surprise. I asked her to prescribe it > for me, but she is not very familiar with it. Did you say you use > Carnitor? how much? she asked if it is a liquid, powder or pills? I > told her that I would contact you and then fax her and she is willing > to prescribe what you are using. Thanks, I will post the results as > soon as I get them. Deborah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 > > > > Hi , > > My pediatritian just called and she told me that 's Carnitine's > > levels are below 1/2 ... what a surprise. I asked her to prescribe > it > > for me, but she is not very familiar with it. Did you say you use > > Carnitor? how much? she asked if it is a liquid, powder or pills? > I > > told her that I would contact you and then fax her and she is willing > > to prescribe what you are using. Thanks, I will post the results as > > soon as I get them. Deborah > > > > > > > > > --------------------------------- > Sponsored Link > > Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. Thanks, Kim K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. Thanks, Kim K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Carnitine is a test that can be done through any lab with a doc's perscription. In the end, the vitamin levels in plasma may not help guide treatment...although important for the underlying understanding of mechanism. Definitely if vit E is low, this is important to know. But it seems many levels are normal or high. I am also learning that the value itself really doesn't mean anything if it is not corrected to total serum lipid level...a high or low value could be totally normal or a normal value could be low...depending on the cholesterol and phospholipid level. In addition I learned today that vitamin K levels in blood are also totally unreliable and don't reflect a deficiency etc. So kids using higher doses of vit E should probably have periodic PT/PTT levels checked to monitor vitamin K. (This is a theoretical risk...but still the only risk known with vit E). I'm just opting to give extra vitamin K to avoid the problem altogether. Of course anyone on blood thinners or coumadin should probably not be taking vit E...but that probably isn't any of our kids. If you are going to push for bloodwork...getting carnitine and anti- gliadin antibodies (and going gluten-free if positive) is probably worth the fight. There are over 15 families who have reported low carnitine...carnitine deficiency is " rare " ...but doesn't seem to be rare in our kids. - > Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. > > Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. > > Thanks, Kim K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Carnitine is a test that can be done through any lab with a doc's perscription. In the end, the vitamin levels in plasma may not help guide treatment...although important for the underlying understanding of mechanism. Definitely if vit E is low, this is important to know. But it seems many levels are normal or high. I am also learning that the value itself really doesn't mean anything if it is not corrected to total serum lipid level...a high or low value could be totally normal or a normal value could be low...depending on the cholesterol and phospholipid level. In addition I learned today that vitamin K levels in blood are also totally unreliable and don't reflect a deficiency etc. So kids using higher doses of vit E should probably have periodic PT/PTT levels checked to monitor vitamin K. (This is a theoretical risk...but still the only risk known with vit E). I'm just opting to give extra vitamin K to avoid the problem altogether. Of course anyone on blood thinners or coumadin should probably not be taking vit E...but that probably isn't any of our kids. If you are going to push for bloodwork...getting carnitine and anti- gliadin antibodies (and going gluten-free if positive) is probably worth the fight. There are over 15 families who have reported low carnitine...carnitine deficiency is " rare " ...but doesn't seem to be rare in our kids. - > Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. > > Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. > > Thanks, Kim K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 I have read that low carnitine is often found in children with autism. I know many of the challenges our apraxic children face overlap those faced by autistic children. Here is an interesting read. Carnitine: Deficiency May Play a Causative Role: In a study of 100 children with autism, free and total carnitine (p < 0.001), and pyruvate (p = 0.006) were significantly reduced while ammonia and alanine levels were considerably elevated (p < 0.001). The relative carnitine deficiency in these patients, accompanied by slight elevations in lactate and significant elevations in alanine and ammonia levels, is suggestive of mild mitochondrial dysfunction. It is hypothesized that a mitochondrial defect may be the origin of the carnitine deficiency in these autistic children. Relative carnitine deficiency in autism. Filipek PA, et al. University of California, Irvine. J Autism Dev Disord. 2004 Dec;34(6):615-23 _____ From: [mailto: ] On Behalf Of claudia.morris Sent: Friday, November 17, 2006 8:01 PM Subject: [ ] Re: - Low Carnitine Carnitine is a test that can be done through any lab with a doc's perscription. In the end, the vitamin levels in plasma may not help guide treatment...although important for the underlying understanding of mechanism. Definitely if vit E is low, this is important to know. But it seems many levels are normal or high. I am also learning that the value itself really doesn't mean anything if it is not corrected to total serum lipid level...a high or low value could be totally normal or a normal value could be low...depending on the cholesterol and phospholipid level. In addition I learned today that vitamin K levels in blood are also totally unreliable and don't reflect a deficiency etc. So kids using higher doses of vit E should probably have periodic PT/PTT levels checked to monitor vitamin K. (This is a theoretical risk...but still the only risk known with vit E). I'm just opting to give extra vitamin K to avoid the problem altogether. Of course anyone on blood thinners or coumadin should probably not be taking vit E...but that probably isn't any of our kids. If you are going to push for bloodwork...getting carnitine and anti- gliadin antibodies (and going gluten-free if positive) is probably worth the fight. There are over 15 families who have reported low carnitine...carnitine deficiency is " rare " ...but doesn't seem to be rare in our kids. - > Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. > > Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. > > Thanks, Kim K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 I have read that low carnitine is often found in children with autism. I know many of the challenges our apraxic children face overlap those faced by autistic children. Here is an interesting read. Carnitine: Deficiency May Play a Causative Role: In a study of 100 children with autism, free and total carnitine (p < 0.001), and pyruvate (p = 0.006) were significantly reduced while ammonia and alanine levels were considerably elevated (p < 0.001). The relative carnitine deficiency in these patients, accompanied by slight elevations in lactate and significant elevations in alanine and ammonia levels, is suggestive of mild mitochondrial dysfunction. It is hypothesized that a mitochondrial defect may be the origin of the carnitine deficiency in these autistic children. Relative carnitine deficiency in autism. Filipek PA, et al. University of California, Irvine. J Autism Dev Disord. 2004 Dec;34(6):615-23 _____ From: [mailto: ] On Behalf Of claudia.morris Sent: Friday, November 17, 2006 8:01 PM Subject: [ ] Re: - Low Carnitine Carnitine is a test that can be done through any lab with a doc's perscription. In the end, the vitamin levels in plasma may not help guide treatment...although important for the underlying understanding of mechanism. Definitely if vit E is low, this is important to know. But it seems many levels are normal or high. I am also learning that the value itself really doesn't mean anything if it is not corrected to total serum lipid level...a high or low value could be totally normal or a normal value could be low...depending on the cholesterol and phospholipid level. In addition I learned today that vitamin K levels in blood are also totally unreliable and don't reflect a deficiency etc. So kids using higher doses of vit E should probably have periodic PT/PTT levels checked to monitor vitamin K. (This is a theoretical risk...but still the only risk known with vit E). I'm just opting to give extra vitamin K to avoid the problem altogether. Of course anyone on blood thinners or coumadin should probably not be taking vit E...but that probably isn't any of our kids. If you are going to push for bloodwork...getting carnitine and anti- gliadin antibodies (and going gluten-free if positive) is probably worth the fight. There are over 15 families who have reported low carnitine...carnitine deficiency is " rare " ...but doesn't seem to be rare in our kids. - > Caludia, who would test for the carnitine deficiency? I have a son with Prader-Willi Syndrome, who is on growth hormone. If you know anything about the syndrome, their muscle tone is weak, due to a poor production of gh. I have him on coq10, which seems to help him, and then the NNaturals cod liver oil. Although I did see improvement in his speech clarity when I put him on vitamin e, I am nervous to keep him on it due to his high body fat content. I can't get any of his current docs to test him or his brother ( " normal " ADD/gifted and does great on vitamin E) for any vitamin deficiencies. Maybe I will end up having to go to a naturopath, who doesn't take insurance of course, but I keep thinking that it would help to know all of this. I have just been diagnosed with fibromyalgia, and know that gluten free, mostly milk free helps my strength, as well as both the boys. > > Maybe this it too many questions all in one clump, but the more I understand, the better our life will be because we all feel better. > > Thanks, Kim K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 > > Carnitine is a test that can be done through any lab with a doc's > perscription. > > In the end, the vitamin levels in plasma may not help guide > treatment...although important for the underlying understanding of > mechanism. Definitely if vit E is low, this is important to know. > But it seems many levels are normal or high. I am also learning that > the value itself really doesn't mean anything if it is not corrected > to total serum lipid level...a high or low value could be totally > normal or a normal value could be low...depending on the cholesterol > and phospholipid level. In addition I learned today that vitamin K > levels in blood are also totally unreliable and don't reflect a > deficiency etc. So kids using higher doses of vit E should probably > have periodic PT/PTT levels checked to monitor vitamin K. (This is > a theoretical risk...but still the only risk known with vit E). I'm > just opting to give extra vitamin K to avoid the problem altogether. > Of course anyone on blood thinners or coumadin should probably not > be taking vit E...but that probably isn't any of our kids. > > If you are going to push for bloodwork...getting carnitine and anti- > gliadin antibodies (and going gluten-free if positive) is probably > worth the fight. There are over 15 families who have reported low > carnitine...carnitine deficiency is " rare " ...but doesn't seem to be > rare in our kids. - > > > Caludia, who would test for the carnitine deficiency? I have a > son with Prader-Willi Syndrome, who is on growth hormone. If you > know anything about the syndrome, their muscle tone is weak, due to > a poor production of gh. I have him on coq10, which seems to help > him, and then the NNaturals cod liver oil. Although I did see > improvement in his speech clarity when I put him on vitamin e, I am > nervous to keep him on it due to his high body fat content. I can't > get any of his current docs to test him or his brother ( " normal " > ADD/gifted and does great on vitamin E) for any vitamin > deficiencies. Maybe I will end up having to go to a naturopath, who > doesn't take insurance of course, but I keep thinking that it would > help to know all of this. I have just been diagnosed with > fibromyalgia, and know that gluten free, mostly milk free helps my > strength, as well as both the boys. > > > > Maybe this it too many questions all in one clump, but the more I > understand, the better our life will be because we all feel better. > > > > Thanks, Kim K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Hi , I wanted to write an update and ask a question about vit E and my son. We started vit E about a month ago at 800IU/day in two doses (am/pm) and he is doing great. I switched to straight alpha a couple of weeks ago, dropping out the gamma portion and it seems the gains are being maintained. My son is autistic and severely apraxic and we have seen nice improvements in both areas. He is much more connected with us and is generating a lot of eye contact and his mood has been very positive. His articulation is improved to a small but noticeable amount and he is babbling and doing more self- talk. I saw your post about vit K and PT/PTT testing. My son has a high Pro-time test several months ago which we repeated just before starting vit E. The repeat testing showed a normal PT and PTT levels. Are these tests related to vit K or is there a different PT/PTT test mentioned in your earlier post below? Thanks. Dave > > > Carnitine is a test that can be done through any lab with a doc's > perscription. > > In the end, the vitamin levels in plasma may not help guide > treatment...although important for the underlying understanding of > mechanism. Definitely if vit E is low, this is important to know. > But it seems many levels are normal or high. I am also learning that > the value itself really doesn't mean anything if it is not corrected > to total serum lipid level...a high or low value could be totally > normal or a normal value could be low...depending on the cholesterol > and phospholipid level. In addition I learned today that vitamin K > levels in blood are also totally unreliable and don't reflect a > deficiency etc. So kids using higher doses of vit E should probably > have periodic PT/PTT levels checked to monitor vitamin K. (This is > a theoretical risk...but still the only risk known with vit E). I'm > just opting to give extra vitamin K to avoid the problem altogether. > Of course anyone on blood thinners or coumadin should probably not > be taking vit E...but that probably isn't any of our kids. > > If you are going to push for bloodwork...getting carnitine and anti- > gliadin antibodies (and going gluten-free if positive) is probably > worth the fight. There are over 15 families who have reported low > carnitine...carnitine deficiency is " rare " ...but doesn't seem to be > rare in our kids. - > > > > Caludia, who would test for the carnitine deficiency? I have a > son with Prader-Willi Syndrome, who is on growth hormone. If you > know anything about the syndrome, their muscle tone is weak, due to > a poor production of gh. I have him on coq10, which seems to help > him, and then the NNaturals cod liver oil. Although I did see > improvement in his speech clarity when I put him on vitamin e, I am > nervous to keep him on it due to his high body fat content. I can't > get any of his current docs to test him or his brother ( " normal " > ADD/gifted and does great on vitamin E) for any vitamin > deficiencies. Maybe I will end up having to go to a naturopath, who > doesn't take insurance of course, but I keep thinking that it would > help to know all of this. I have just been diagnosed with > fibromyalgia, and know that gluten free, mostly milk free helps my > strength, as well as both the boys. > > > > Maybe this it too many questions all in one clump, but the more I > understand, the better our life will be because we all feel better. > > > > Thanks, Kim K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 > > Carnitine is a test that can be done through any lab with a doc's > perscription. > > In the end, the vitamin levels in plasma may not help guide > treatment...although important for the underlying understanding of > mechanism. Definitely if vit E is low, this is important to know. > But it seems many levels are normal or high. I am also learning that > the value itself really doesn't mean anything if it is not corrected > to total serum lipid level...a high or low value could be totally > normal or a normal value could be low...depending on the cholesterol > and phospholipid level. In addition I learned today that vitamin K > levels in blood are also totally unreliable and don't reflect a > deficiency etc. So kids using higher doses of vit E should probably > have periodic PT/PTT levels checked to monitor vitamin K. (This is > a theoretical risk...but still the only risk known with vit E). I'm > just opting to give extra vitamin K to avoid the problem altogether. > Of course anyone on blood thinners or coumadin should probably not > be taking vit E...but that probably isn't any of our kids. > > If you are going to push for bloodwork...getting carnitine and anti- > gliadin antibodies (and going gluten-free if positive) is probably > worth the fight. There are over 15 families who have reported low > carnitine...carnitine deficiency is " rare " ...but doesn't seem to be > rare in our kids. - > > > Caludia, who would test for the carnitine deficiency? I have a > son with Prader-Willi Syndrome, who is on growth hormone. If you > know anything about the syndrome, their muscle tone is weak, due to > a poor production of gh. I have him on coq10, which seems to help > him, and then the NNaturals cod liver oil. Although I did see > improvement in his speech clarity when I put him on vitamin e, I am > nervous to keep him on it due to his high body fat content. I can't > get any of his current docs to test him or his brother ( " normal " > ADD/gifted and does great on vitamin E) for any vitamin > deficiencies. Maybe I will end up having to go to a naturopath, who > doesn't take insurance of course, but I keep thinking that it would > help to know all of this. I have just been diagnosed with > fibromyalgia, and know that gluten free, mostly milk free helps my > strength, as well as both the boys. > > > > Maybe this it too many questions all in one clump, but the more I > understand, the better our life will be because we all feel better. > > > > Thanks, Kim K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Robin, that is interesting, I didn't know that carnitine and autism had a link, but I do know that a good many of our PWS (Prader-Willi Syndrome) kids have autistic characteristics, which iel does have some of, but they also have gut issues. First from low muscle tone, but I think also from reflux, and control of the hypothalamus and hormone levels in the gut, also characteristics of PWS. So, it makes sense what is saying about malabsorption issues, particularly considering what our family's health issues are shaping up to be. This links it all together. Thank you for the insights, there are carnitine deficient PWS kids, and I was realizing that it was a possible issue with my son as well. It is just that many of his docs aren't open to a lot of this, and with all of his other health issues, it hasn't been much of a priority. However, it is MY new priority that could help us out in the long run with all the other health problems he has going on. If I have a general idea of where to go, I can push in that direction instead of blindly trying to discover where to go:) Kim > > > > Carnitine is a test that can be done through any lab with a doc's > > perscription. > > > > In the end, the vitamin levels in plasma may not help guide > > treatment...although important for the underlying understanding of > > mechanism. Definitely if vit E is low, this is important to know. > > But it seems many levels are normal or high. I am also learning > that > > the value itself really doesn't mean anything if it is not > corrected > > to total serum lipid level...a high or low value could be totally > > normal or a normal value could be low...depending on the > cholesterol > > and phospholipid level. In addition I learned today that vitamin K > > levels in blood are also totally unreliable and don't reflect a > > deficiency etc. So kids using higher doses of vit E should > probably > > have periodic PT/PTT levels checked to monitor vitamin K. (This is > > a theoretical risk...but still the only risk known with vit E). > I'm > > just opting to give extra vitamin K to avoid the problem > altogether. > > Of course anyone on blood thinners or coumadin should probably not > > be taking vit E...but that probably isn't any of our kids. > > > > If you are going to push for bloodwork...getting carnitine and > anti- > > gliadin antibodies (and going gluten-free if positive) is probably > > worth the fight. There are over 15 families who have reported low > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > be > > rare in our kids. - > > > > > Caludia, who would test for the carnitine deficiency? I have a > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > know anything about the syndrome, their muscle tone is weak, due > to > > a poor production of gh. I have him on coq10, which seems to help > > him, and then the NNaturals cod liver oil. Although I did see > > improvement in his speech clarity when I put him on vitamin e, I > am > > nervous to keep him on it due to his high body fat content. I > can't > > get any of his current docs to test him or his brother ( " normal " > > ADD/gifted and does great on vitamin E) for any vitamin > > deficiencies. Maybe I will end up having to go to a naturopath, > who > > doesn't take insurance of course, but I keep thinking that it > would > > help to know all of this. I have just been diagnosed with > > fibromyalgia, and know that gluten free, mostly milk free helps my > > strength, as well as both the boys. > > > > > > Maybe this it too many questions all in one clump, but the more > I > > understand, the better our life will be because we all feel > better. > > > > > > Thanks, Kim K. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Hi , I wanted to write an update and ask a question about vit E and my son. We started vit E about a month ago at 800IU/day in two doses (am/pm) and he is doing great. I switched to straight alpha a couple of weeks ago, dropping out the gamma portion and it seems the gains are being maintained. My son is autistic and severely apraxic and we have seen nice improvements in both areas. He is much more connected with us and is generating a lot of eye contact and his mood has been very positive. His articulation is improved to a small but noticeable amount and he is babbling and doing more self- talk. I saw your post about vit K and PT/PTT testing. My son has a high Pro-time test several months ago which we repeated just before starting vit E. The repeat testing showed a normal PT and PTT levels. Are these tests related to vit K or is there a different PT/PTT test mentioned in your earlier post below? Thanks. Dave > > > Carnitine is a test that can be done through any lab with a doc's > perscription. > > In the end, the vitamin levels in plasma may not help guide > treatment...although important for the underlying understanding of > mechanism. Definitely if vit E is low, this is important to know. > But it seems many levels are normal or high. I am also learning that > the value itself really doesn't mean anything if it is not corrected > to total serum lipid level...a high or low value could be totally > normal or a normal value could be low...depending on the cholesterol > and phospholipid level. In addition I learned today that vitamin K > levels in blood are also totally unreliable and don't reflect a > deficiency etc. So kids using higher doses of vit E should probably > have periodic PT/PTT levels checked to monitor vitamin K. (This is > a theoretical risk...but still the only risk known with vit E). I'm > just opting to give extra vitamin K to avoid the problem altogether. > Of course anyone on blood thinners or coumadin should probably not > be taking vit E...but that probably isn't any of our kids. > > If you are going to push for bloodwork...getting carnitine and anti- > gliadin antibodies (and going gluten-free if positive) is probably > worth the fight. There are over 15 families who have reported low > carnitine...carnitine deficiency is " rare " ...but doesn't seem to be > rare in our kids. - > > > > Caludia, who would test for the carnitine deficiency? I have a > son with Prader-Willi Syndrome, who is on growth hormone. If you > know anything about the syndrome, their muscle tone is weak, due to > a poor production of gh. I have him on coq10, which seems to help > him, and then the NNaturals cod liver oil. Although I did see > improvement in his speech clarity when I put him on vitamin e, I am > nervous to keep him on it due to his high body fat content. I can't > get any of his current docs to test him or his brother ( " normal " > ADD/gifted and does great on vitamin E) for any vitamin > deficiencies. Maybe I will end up having to go to a naturopath, who > doesn't take insurance of course, but I keep thinking that it would > help to know all of this. I have just been diagnosed with > fibromyalgia, and know that gluten free, mostly milk free helps my > strength, as well as both the boys. > > > > Maybe this it too many questions all in one clump, but the more I > understand, the better our life will be because we all feel better. > > > > Thanks, Kim K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Robin, that is interesting, I didn't know that carnitine and autism had a link, but I do know that a good many of our PWS (Prader-Willi Syndrome) kids have autistic characteristics, which iel does have some of, but they also have gut issues. First from low muscle tone, but I think also from reflux, and control of the hypothalamus and hormone levels in the gut, also characteristics of PWS. So, it makes sense what is saying about malabsorption issues, particularly considering what our family's health issues are shaping up to be. This links it all together. Thank you for the insights, there are carnitine deficient PWS kids, and I was realizing that it was a possible issue with my son as well. It is just that many of his docs aren't open to a lot of this, and with all of his other health issues, it hasn't been much of a priority. However, it is MY new priority that could help us out in the long run with all the other health problems he has going on. If I have a general idea of where to go, I can push in that direction instead of blindly trying to discover where to go:) Kim > > > > Carnitine is a test that can be done through any lab with a doc's > > perscription. > > > > In the end, the vitamin levels in plasma may not help guide > > treatment...although important for the underlying understanding of > > mechanism. Definitely if vit E is low, this is important to know. > > But it seems many levels are normal or high. I am also learning > that > > the value itself really doesn't mean anything if it is not > corrected > > to total serum lipid level...a high or low value could be totally > > normal or a normal value could be low...depending on the > cholesterol > > and phospholipid level. In addition I learned today that vitamin K > > levels in blood are also totally unreliable and don't reflect a > > deficiency etc. So kids using higher doses of vit E should > probably > > have periodic PT/PTT levels checked to monitor vitamin K. (This is > > a theoretical risk...but still the only risk known with vit E). > I'm > > just opting to give extra vitamin K to avoid the problem > altogether. > > Of course anyone on blood thinners or coumadin should probably not > > be taking vit E...but that probably isn't any of our kids. > > > > If you are going to push for bloodwork...getting carnitine and > anti- > > gliadin antibodies (and going gluten-free if positive) is probably > > worth the fight. There are over 15 families who have reported low > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > be > > rare in our kids. - > > > > > Caludia, who would test for the carnitine deficiency? I have a > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > know anything about the syndrome, their muscle tone is weak, due > to > > a poor production of gh. I have him on coq10, which seems to help > > him, and then the NNaturals cod liver oil. Although I did see > > improvement in his speech clarity when I put him on vitamin e, I > am > > nervous to keep him on it due to his high body fat content. I > can't > > get any of his current docs to test him or his brother ( " normal " > > ADD/gifted and does great on vitamin E) for any vitamin > > deficiencies. Maybe I will end up having to go to a naturopath, > who > > doesn't take insurance of course, but I keep thinking that it > would > > help to know all of this. I have just been diagnosed with > > fibromyalgia, and know that gluten free, mostly milk free helps my > > strength, as well as both the boys. > > > > > > Maybe this it too many questions all in one clump, but the more > I > > understand, the better our life will be because we all feel > better. > > > > > > Thanks, Kim K. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > > > > > > Carnitine is a test that can be done through any lab with a > doc's > > > perscription. > > > > > > In the end, the vitamin levels in plasma may not help guide > > > treatment...although important for the underlying understanding > of > > > mechanism. Definitely if vit E is low, this is important to > know. > > > But it seems many levels are normal or high. I am also learning > > that > > > the value itself really doesn't mean anything if it is not > > corrected > > > to total serum lipid level...a high or low value could be > totally > > > normal or a normal value could be low...depending on the > > cholesterol > > > and phospholipid level. In addition I learned today that vitamin > K > > > levels in blood are also totally unreliable and don't reflect a > > > deficiency etc. So kids using higher doses of vit E should > > probably > > > have periodic PT/PTT levels checked to monitor vitamin K. (This > is > > > a theoretical risk...but still the only risk known with vit E). > > I'm > > > just opting to give extra vitamin K to avoid the problem > > altogether. > > > Of course anyone on blood thinners or coumadin should probably > not > > > be taking vit E...but that probably isn't any of our kids. > > > > > > If you are going to push for bloodwork...getting carnitine and > > anti- > > > gliadin antibodies (and going gluten-free if positive) is > probably > > > worth the fight. There are over 15 families who have reported > low > > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > > be > > > rare in our kids. - > > > > > > > Caludia, who would test for the carnitine deficiency? I have a > > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > > know anything about the syndrome, their muscle tone is weak, due > > to > > > a poor production of gh. I have him on coq10, which seems to > help > > > him, and then the NNaturals cod liver oil. Although I did see > > > improvement in his speech clarity when I put him on vitamin e, I > > am > > > nervous to keep him on it due to his high body fat content. I > > can't > > > get any of his current docs to test him or his brother ( " normal " > > > ADD/gifted and does great on vitamin E) for any vitamin > > > deficiencies. Maybe I will end up having to go to a naturopath, > > who > > > doesn't take insurance of course, but I keep thinking that it > > would > > > help to know all of this. I have just been diagnosed with > > > fibromyalgia, and know that gluten free, mostly milk free helps > my > > > strength, as well as both the boys. > > > > > > > > Maybe this it too many questions all in one clump, but the > more > > I > > > understand, the better our life will be because we all feel > > better. > > > > > > > > Thanks, Kim K. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > > > > > > Carnitine is a test that can be done through any lab with a doc's > > perscription. > > > > In the end, the vitamin levels in plasma may not help guide > > treatment...although important for the underlying understanding of > > mechanism. Definitely if vit E is low, this is important to know. > > But it seems many levels are normal or high. I am also learning > that > > the value itself really doesn't mean anything if it is not > corrected > > to total serum lipid level...a high or low value could be totally > > normal or a normal value could be low...depending on the > cholesterol > > and phospholipid level. In addition I learned today that vitamin K > > levels in blood are also totally unreliable and don't reflect a > > deficiency etc. So kids using higher doses of vit E should > probably > > have periodic PT/PTT levels checked to monitor vitamin K. (This > is > > a theoretical risk...but still the only risk known with vit E). > I'm > > just opting to give extra vitamin K to avoid the problem > altogether. > > Of course anyone on blood thinners or coumadin should probably not > > be taking vit E...but that probably isn't any of our kids. > > > > If you are going to push for bloodwork...getting carnitine and > anti- > > gliadin antibodies (and going gluten-free if positive) is probably > > worth the fight. There are over 15 families who have reported low > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > be > > rare in our kids. - > > > > > > > Caludia, who would test for the carnitine deficiency? I have a > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > know anything about the syndrome, their muscle tone is weak, due > to > > a poor production of gh. I have him on coq10, which seems to help > > him, and then the NNaturals cod liver oil. Although I did see > > improvement in his speech clarity when I put him on vitamin e, I > am > > nervous to keep him on it due to his high body fat content. I > can't > > get any of his current docs to test him or his brother ( " normal " > > ADD/gifted and does great on vitamin E) for any vitamin > > deficiencies. Maybe I will end up having to go to a naturopath, > who > > doesn't take insurance of course, but I keep thinking that it > would > > help to know all of this. I have just been diagnosed with > > fibromyalgia, and know that gluten free, mostly milk free helps my > > strength, as well as both the boys. > > > > > > Maybe this it too many questions all in one clump, but the more > I > > understand, the better our life will be because we all feel > better. > > > > > > Thanks, Kim K. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > > > > > > Carnitine is a test that can be done through any lab with a > doc's > > > perscription. > > > > > > In the end, the vitamin levels in plasma may not help guide > > > treatment...although important for the underlying understanding > of > > > mechanism. Definitely if vit E is low, this is important to > know. > > > But it seems many levels are normal or high. I am also learning > > that > > > the value itself really doesn't mean anything if it is not > > corrected > > > to total serum lipid level...a high or low value could be > totally > > > normal or a normal value could be low...depending on the > > cholesterol > > > and phospholipid level. In addition I learned today that vitamin > K > > > levels in blood are also totally unreliable and don't reflect a > > > deficiency etc. So kids using higher doses of vit E should > > probably > > > have periodic PT/PTT levels checked to monitor vitamin K. (This > is > > > a theoretical risk...but still the only risk known with vit E). > > I'm > > > just opting to give extra vitamin K to avoid the problem > > altogether. > > > Of course anyone on blood thinners or coumadin should probably > not > > > be taking vit E...but that probably isn't any of our kids. > > > > > > If you are going to push for bloodwork...getting carnitine and > > anti- > > > gliadin antibodies (and going gluten-free if positive) is > probably > > > worth the fight. There are over 15 families who have reported > low > > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > > be > > > rare in our kids. - > > > > > > > Caludia, who would test for the carnitine deficiency? I have a > > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > > know anything about the syndrome, their muscle tone is weak, due > > to > > > a poor production of gh. I have him on coq10, which seems to > help > > > him, and then the NNaturals cod liver oil. Although I did see > > > improvement in his speech clarity when I put him on vitamin e, I > > am > > > nervous to keep him on it due to his high body fat content. I > > can't > > > get any of his current docs to test him or his brother ( " normal " > > > ADD/gifted and does great on vitamin E) for any vitamin > > > deficiencies. Maybe I will end up having to go to a naturopath, > > who > > > doesn't take insurance of course, but I keep thinking that it > > would > > > help to know all of this. I have just been diagnosed with > > > fibromyalgia, and know that gluten free, mostly milk free helps > my > > > strength, as well as both the boys. > > > > > > > > Maybe this it too many questions all in one clump, but the > more > > I > > > understand, the better our life will be because we all feel > > better. > > > > > > > > Thanks, Kim K. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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