Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 What awesome news! Congrats, . I'm gonna try the vitamin E! > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 , How absolutely amazing that you found another big key to curing your son! I'm so happy for you, and thank you for sharing with the rest of us. Coincidentally, I just started learning about the great benefits of Vit E supplementation for adults, and started taking about 800 IU per day. I will most definitely start Meg on 400 IU, and I'll be sure to post if I see big results. I learned that the RDA for Vitamin E is intended only for prevention of deficiency, and not as a recommendation for general health. And I was always so concerned about getting too much! I often wondered if Vitamin E was part of the reason that fish oils and Carnaware are so effective. Hopefully we'll get some more parents trying it and reporting results soon. Kerri > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 ,, and everyone. That is VERY interesting, and VERY inspiring to hear about ph. It makes me want to try Vit. E supplement with my daughter. I too did a little reading about the signs/symptoms related to vit e deficiency. It turns out (according to Merck) Abby has had most of them too. (including ophthalmoplegia) If you recall I once posted how her eyes made very fast jerky movements. She did this 2x in the hospital as a newborn, then again shortly after coming home. When I told her pediatrician, he claimed to examine her, and I quote " there doesn't seem to be anything wrong " While reading the signs/symptoms, I continued to look up the Vitamin E information. One of the pages I read was from the Hopkins Medicine webpage. /post?act=reply & messageN\ um=50746 They claim to have done a study on vitamin E supplentation. And their conclusion is high doses, (Over 400 IU) may have a higher overall risk of dying. They go on to say most of the people in their study are over age 60, and not all were in perfect health. I only bring this up, because it does concern me, that in effort to help, we " might " inadvertantly hurt our children. With your medical expertise, maybe you can shed some light on this issue/study. Please do not take my questions the wrong way. I am certainly not trying to disprove your claim, nor am I trying to persuade anyone from NOT trying a new option to help our children. I just want reassurance. Thank you.. Dawn in NJ In , " kiddietalk " <kiddietalk@...> wrote: > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > > > Thank you for sharing -ironically, words can't express my > > pride and happiness for ph and all those like him! Three > cheers > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > From: " " <claudiamorris@> A > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Some interesting comments on the Hopkins study you are asking about are attached below. Some studies can be very misleading, especially depending upon how the statistics are run. But this is the sort of story that makes headlines. My crazy experience with the media...I published an asthma study in 2004 that demonstrated that arginine levels (an amino acid in nuts and peanutbutter) are low in acute asthma. The newspapers tried to get me to say that peanutbutter would treat asthma...that WAS NOT my conclusion, nor would I say that (although I would love it if SKIPPY wants to fund my studies - but again, what makes news is often far from the truth). The newsclip intro to the local TV news broadcast was that " Oakland researcher finds a cure for asthma " , while showing pictures of the local grocery store peanutbutter isle. OK, I wanted to hide, but had to follow that intro and try to redirect them. My kids thought it was cool regardless. Also, ONLY one vitamin E study showed statistically increased risk of death (as opposed to the other 13 studies demonstrating benefits). It was a meta-analysis, or a statistical sum of all the studies, so misleading. In addition, the methods and doses used in each individual study was different - as were the type of patients involved in each of the 14 studies. Many patients were on other vitamin supplements, so impossible to tell what effect was from what, and most of the patients were using synthetic vs. natural vitamin E. There is a difference between synthetic and natural, and the synthetic E may deplete or impact natural vit E effects. Also if our apraxic kids end up having an increased consumption/utilization of vitamin E, decreased absorption or abnormal metabolism of vitamin E...any mechanism that may increase the body's need for vitamin E - these kids would be in a different catagory than the normal person on the street without a deficiency. Give a bolus of insulin to a non-diabetic, and you may kill them. However insulin is life saving for those whose body can't make it. Not to say vitamin E is like insulin, but in a way...I did tell my pediatrician after one of ph's regressions off fish oil, that I felt like it was in fact his " insulin " , and without it...his brain just fell apart. See below for a commentary written about the Hopkins report. It may clarify things. Regardless, a dose of 400 IU a day is benign for a child...but it should be NATURAL, not synthetic. The label should read " alpha-d-tocophorol " and NOT alpha-dl-tocophorol. Its the " dl " that tells you its synthetic, but easy to miss this small differentiation. In addition, gamma tocophorol should be used...and it comes in 200-300 mg gel caps. One alpha and one gamma a day is a good safe dose...until we know more. But this is why it may make sense to check vitamin E plasma levels first, since a documented vitamin E deficiency may suggest the need for even higher doses. To give you an idea, the recommended dose for vitamin E deficiency related neuropathy, or nerve/brain damage (???which some of our apraxic kids may just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high dose, and is indicated for Vit E deficiency syndromes, and something that should be monitored closely by an MD or nutritionalist. But this dose is indicated for certain disease states of deficiency, and essential to these particular patients in order to treat their condition. For apraxia - we don't know if there is a deficiency that can be identified by a blood test, or if patients need higher than normal levels to fix neurological symptoms for some other reason. All I know is that omega 3 worked wonders in helping my son progress with aggressive ST and OT. Yet Vitamin E is causing/has caused a resolution of ALL symptoms of global apraxia/hypotonia and SID. My son also has been identified recently with a severe carnitine deficiency. This is not routinely checked in apraxia. Maybe is should be. This may be uncommon - however to have this undiagnosed and untreated can lead to sudden death. Scary. We are getting all my kids checked for low carnitine, in case it is some genetic red herring totally unrelated to apraxia. However since it is commonly reported in children with autism, I suspect this may not be that rare. One never knows until one really looks. Although Vitamin E is an unlikely culprit, sometimes the most complicated problems still have a simple answer. Unfortunately the sensationalism of headline news may scare people away from potentially good treatments. Just like the fear of fish oil. I think it is good to ask questions though, and not take the " unknown " at face value. So I don't take your question the wrong way. It is actually an excellent question, since it is so hard to sift through the literature and figure out what is and isn't valid. It is also possible that what we are experiencing with my boy is a fluke from some weird genetics specific to my son. But since he sounds like the posterchild for global apraxia, I don't think this will be an isolated observation, particularly in kids who respond to omega supplements. Without my own relentless " why " - my son would still be severely impaired. - ---------------------------------------------------------------------------- ---------------------------------- The real facts about the vitamin E death warning... Print Report | Add to Favorites Do you ever feel fed up with all the conflicting health information in newspapers and magazines? This week, you'll see a story about the benefits of taking a certain supplement. A week later, you'll read or hear a report about the dangers of the very same substance, with warnings by an expert to stay away from it. A good example comes from the latest " death warning " about vitamin E. According to recent headlines, people could be " risking their lives " if they take even moderately high doses of vitamin E [1]. To add to the confusion, researchers from Israel now tell us that some patients with diabetes can reduce their risk of dying from heart disease by taking — you guessed it — high doses of vitamin E [2]. This kind of conflicting evidence prompts many frustrated people to throw up their arms in frustration at the fact that " even the experts can't agree. " It's easy to become so frustrated and confused that you simply ignore it all. Don't throw your vitamin E supplements in the bin just yet. There are several important aspects of the s Hopkins study that didn't get much coverage in the news. Here's a closer look at what they actually did. The researchers looked at a number of studies carried out between 1993 and 2004. All compared vitamin use against a dummy supplement (placebo). They found that the risk of death did not differ significantly between people given vitamin E and those assigned to placebo. However, the effect of vitamin E differed according to how much was used. In the low-dose studies, vitamin E was linked with a small reduction in the death rate. In the high-dose studies, those who took vitamin E had a 4% increase in the risk of death. Though this increase was small, it was statistically significant. It was this discovery that generated the headlines. One problem is that the review included studies where vitamin E was taken with other vitamins and minerals. The increased risk of death found in some of the studies could have been linked with these other nutrients. It may have had nothing to do with vitamin E. What's more, many of the study groups were people with pre-existing chronic diseases such as cancer, heart disease, Alzheimer's, Parkinson's and kidney failure. Even the editors of the ls of Internal Medicine (the journal where the study was published) write that the findings may not apply to healthy adults. Dr. Alan Gaby, an expert in nutritional therapies, also points out that some of the results were complicated by the fact that the vitamin E and placebo groups were not comparable. " In one high-dose vitamin E study (Cambridge Heart Antioxidant Study), the vitamin E group had higher cholesterol levels and significantly greater percentages of participants with high blood pressure, diabetes, cigarette smoking, and severe coronary artery disease, compared with the placebo group, " says Dr. Gaby. " Thus, the people taking vitamin E were sicker than those taking the placebo, a fact that could account for the slight increase in mortality seen in the vitamin E group. " Facts about vitamin E There are also several different forms of vitamin E. Read the label on a vitamin E supplement, and it will probably say alpha-tocopherol (pronounced al-fa tocko-ferol). Most of the studies reviewed in the s Hopkins research were done using the synthetic (dl-alpha-tocopherol) rather than the natural (d-alpha-tocopherol) form of alpha-tocopherol. Natural vitamin E has roughly twice the availability of synthetic vitamin E. Because of this, you have to take about twice as much of it to get the same effect [4]. If there is a small negative effect of high-dose vitamin E, it might be due in part to the use of dl-alpha-tocopherol. Vitamin E is actually a collective term for eight naturally occurring compounds, four tocopherols (alpha-, beta-, gamma- and delta-) and four tocotrienols (alpha-, beta-, gamma- and delta-). Concentrations of alpha-tocopherol are higher in wheat germ oil, almond and sunflower oil; gamma-tocopherol is the major form of vitamin E in corn oil and soybean oil; levels of tocotrienols are high in rice bran, barley, oats and palm oil. Although most research has focused on the potential health effects of alpha-tocopherol, the three other tocopherols and four tocotrienols are also important. In fact, supplementing with alpha-tocopherol has been shown to reduce blood levels of gamma- and delta-tocopherol [3]. Although they're usually more expensive than alpha-tocopherol, mixed tocopherols are the preferable form of vitamin E, in terms of both safety and effectiveness. If you do use a high-dose vitamin E supplement, look for one that contains mixed tocopherols. Some manufacturers use this term to mean the synthetic dl-alpha-tocopherol, so you need to read the label closely. Of course, the fact that some forms of vitamin E are natural doesn't mean it can be consumed safely in unlimited amounts. Many supplements, including vitamin C, iron, CLA and CoQ10 — under certain conditions — can have negative side effects. Even plain water has the potential to be harmful [6]! Based on its blood-thinning effects, there are concerns that vitamin E could cause problems if combined with medications that also thin the blood, such as aspirin. In theory, the blood could thin too much, causing bleeding problems. Vitamin E may also enhance the body's sensitivity to its own insulin in people with type II diabetes [5]. This could lead to a risk of blood sugar levels falling too low. If you're taking medication, it would be a good idea to talk with your physician before using a high-dose vitamin E supplement. The bottom line One of the main goals of a newspaper or magazine is to sell more copies. They'll achieve this with a sensational headline that reads something like " vitamin E death warning " rather than one that accurately reflects the findings of a study. Personally, I use a multi-vitamin and mineral supplement that contains 150 IU of vitamin E (d-alpha-tocopherol succinate). Most days, I also use a meal replacement supplement containing 30 IU of vitamin E. That gives me at least 180 IU of vitamin E each day, plus what I get from my diet. This new research has not convinced me to use less vitamin E. One study is not really news. Think of it as a single piece of a jigsaw puzzle. It's only when you put the pieces together by comparing many studies in a given field that you get an accurate picture of what's really going on. Do you need help burning the fat from your belly or packing muscle on your chest, shoulders and arms? This site contains everything you need to know. It will teach you the best ways to get the lean, strong, healthy body you deserve. Get more FREE fat-burning and muscle-building tips here » References 1. , E.R. 3rd, Pastor-Barriuso, R., Dalal, D., Riemersma, R.A., Appel, L.J., & Guallar, E. (2004). Meta-Analysis: High-Dosage Vitamin E Supplementation May Increase All-Cause Mortality. ls of Internal Medicine, 142 2. Levy, A.P., Gerstein, H.C., -Lotan, R., Ratner, R., McQueen, M., Lonn, E., & Pogue, J. (2004). The effect of vitamin E supplementation on cardiovascular risk in diabetic individuals with different haptoglobin phenotypes. Diabetes Care, 27, 2767 3. Huang, H.Y., & Appel, LJ. (2003). Supplementation of diets with alpha-tocopherol reduces serum concentrations of gamma- and delta-tocopherol in humans. Journal of Nutrition, 133, 3137-3140 4. Burton, G.W., Traber, M.G., Acuff, R.V., Walters, D.N., Kayden, H., , L., & Ingold, K.U. (1998). Human plasma and tissue alpha-tocopherol concentrations in response to supplementation with deuterated natural and synthetic vitamin E. American Journal of Clinical Nutrition, 67, 669-684 5. Manning, P.J., Sutherland, W.H., , R.J., , S.M., De Jong, S.A., Ryalls, A.R., & Berry, E.A. (2004). Effect of high-dose vitamin E on insulin resistance and associated parameters in overweight subjects. Diabetes Care, 27, 2166-2171 6. Noakes, T.D. (2003). Overconsumption of fluids by athletes. British Medical Journal, 327, 113-114 [ ] Re: Important message you all want to read...and share ,, and everyone. That is VERY interesting, and VERY inspiring to hear about ph. It makes me want to try Vit. E supplement with my daughter. I too did a little reading about the signs/symptoms related to vit e deficiency. It turns out (according to Merck) Abby has had most of them too. (including ophthalmoplegia) If you recall I once posted how her eyes made very fast jerky movements. She did this 2x in the hospital as a newborn, then again shortly after coming home. When I told her pediatrician, he claimed to examine her, and I quote " there doesn't seem to be anything wrong " While reading the signs/symptoms, I continued to look up the Vitamin E information. One of the pages I read was from the Hopkins Medicine webpage. /post?act=reply & mess ageNum=50746 They claim to have done a study on vitamin E supplentation. And their conclusion is high doses, (Over 400 IU) may have a higher overall risk of dying. They go on to say most of the people in their study are over age 60, and not all were in perfect health. I only bring this up, because it does concern me, that in effort to help, we " might " inadvertantly hurt our children. With your medical expertise, maybe you can shed some light on this issue/study. Please do not take my questions the wrong way. I am certainly not trying to disprove your claim, nor am I trying to persuade anyone from NOT trying a new option to help our children. I just want reassurance. Thank you.. Dawn in NJ In , " kiddietalk " <kiddietalk@...> wrote: > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 This is excellent. Thanks for sending. We are actually getting ADEK checked with the next blood draw. I am worried about vit K since I suspect we will find a low level and it is the one potential adverse effect of high dose vit E - lower K and bleeding. I didn't know Vit K had any effects outside of bleeding, so this really is good stuff. - [ ] Re: Important message you all want to read...and share , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > > > Thank you for sharing -ironically, words can't express my > > pride and happiness for ph and all those like him! Three > cheers > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > From: " " <claudiamorris@> A > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 I don't think anyone should be increasing a dose past this without close supervision of an MD or nutritionalist, and following levels...until we have more information. " Do no harm " is key. I get the alpha " d " tocophorol and gamma from the general health food store. There is also an on-line soy free " Dr. Ron's ultra pure vitamin E " . I have to look into this product as it combines alpha and gamma, and is soy free (but expensiver - more so that the health food store which may be just as good). I think its a capsule though - which may be more difficult to get the kids to take. There is also a water soluable vitamin E preparation that the cystic fibrosis kids take. So still a lot more to learn. Honestly I am no expert on this - I literally just started reading up on vitamin E, symptoms of deficiency and types of supplements early July. If I had given my nutritional courses more attention in med school, maybe I would have recognized that all the signs of vitamin E deficiency sound like apraxia and SID. Better late than never. Re: [ ] Important message you all want to read...and share <<<<<We have just been supplementing with alpha and gamma. Gamma comes typically in a 300 mg gel-cap. One alpha and one gamma a day is a good start. We saw immediate OMG results within 48 hours. The surge lasted about 3 weeks, then leveled off. I did go to a higher dose after the 4th week...and we got another surge which has brought us to where we are now...>>> , Ok, answered part of my previous question when I read your post again. So my question is, what is Alpha and Gamma (where do you get it from?) and how much did you increase the dose after the 3 weeks when it leveled off? Thank you.. Jill Jill <jills2daughters@...> wrote: Hello , I was very interested in what you've been doing with Vitamin E with your son. Especially so as my 's diagnosis is very simular (Global Dyspraxia, Hyptonia, sensory issues, etc.). currently takes 4 Nordic Natural Omega-3.6.9 Junior capsules as well as a multi vitamin. That would be 30 IU of Vit. E in the fish oil and another 30 IU in the multi-vitamin for 60 IU total. What brand and quantity of Vit. E have you been giving your son? is 6 and will be 7 years old on Dec. 1st. Thanks, Jill kiddietalk <kiddietalk@...> wrote: I am posting this for Dr. who is an amazing member of this group, who has news to share of her own son's rapid recovery from apraxia. As Marina just stated the following methods -as incredible as they are -are combined with appropriate and traditional speech and occupational therapies. As a wise neuroMD once told us as the first apraxia conference " the brain responds to multiple stimuli " http://www.cherab.org/news/scientific.html Please read the following and share with your child's pediatrician...this is cutting edge information to help your child now. Nobody knows where these previously rare multifaceted conditions like apraxia are coming from in alarming rising numbers -but perhaps as a group we can learn how to help our children today. Or you can wait for the studies that are planned. You'll be able to read about them here too.... in years. I know that " " doesn't always share who she is -we just know her here as , but she is not 'just' , and not 'just' a Mom, is also a highly respected pediatrician and researcher - (as well as being a parent of a child with apraxia) You may see this message more than once - posted it too...but I wanted to send this out as a special announcement to make sure all receive this information. Nobody here will be able to say " why didn't you tell me?!! " Please share this with others who may need to know too. And please share here what you find -like . Thank you for sharing -ironically, words can't express my pride and happiness for ph and all those like him! Three cheers for you too Dr. -you put the " Dr. Mom " in Dr. Mom! From: " " <claudiamorris@...> A " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Why were you looking at ADEK in the first place? Why did your son have fat-soluble vitamin deficiencies? Any history of food allergies? What doses of ADEK were you giving? And are you still supplementing? Did your son also have low carnitine and are/were you supplementing that? Thanks for the info! - [ ] Re: Important message you all want to read...and share , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 What awesome news! Congrats, . I'm gonna try the vitamin E! > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , How absolutely amazing that you found another big key to curing your son! I'm so happy for you, and thank you for sharing with the rest of us. Coincidentally, I just started learning about the great benefits of Vit E supplementation for adults, and started taking about 800 IU per day. I will most definitely start Meg on 400 IU, and I'll be sure to post if I see big results. I learned that the RDA for Vitamin E is intended only for prevention of deficiency, and not as a recommendation for general health. And I was always so concerned about getting too much! I often wondered if Vitamin E was part of the reason that fish oils and Carnaware are so effective. Hopefully we'll get some more parents trying it and reporting results soon. Kerri > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > > > Thank you for sharing -ironically, words can't express my > > pride and happiness for ph and all those like him! Three > cheers > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > From: " " <claudiamorris@> A > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 ,, and everyone. That is VERY interesting, and VERY inspiring to hear about ph. It makes me want to try Vit. E supplement with my daughter. I too did a little reading about the signs/symptoms related to vit e deficiency. It turns out (according to Merck) Abby has had most of them too. (including ophthalmoplegia) If you recall I once posted how her eyes made very fast jerky movements. She did this 2x in the hospital as a newborn, then again shortly after coming home. When I told her pediatrician, he claimed to examine her, and I quote " there doesn't seem to be anything wrong " While reading the signs/symptoms, I continued to look up the Vitamin E information. One of the pages I read was from the Hopkins Medicine webpage. /post?act=reply & messageN\ um=50746 They claim to have done a study on vitamin E supplentation. And their conclusion is high doses, (Over 400 IU) may have a higher overall risk of dying. They go on to say most of the people in their study are over age 60, and not all were in perfect health. I only bring this up, because it does concern me, that in effort to help, we " might " inadvertantly hurt our children. With your medical expertise, maybe you can shed some light on this issue/study. Please do not take my questions the wrong way. I am certainly not trying to disprove your claim, nor am I trying to persuade anyone from NOT trying a new option to help our children. I just want reassurance. Thank you.. Dawn in NJ In , " kiddietalk " <kiddietalk@...> wrote: > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Some interesting comments on the Hopkins study you are asking about are attached below. Some studies can be very misleading, especially depending upon how the statistics are run. But this is the sort of story that makes headlines. My crazy experience with the media...I published an asthma study in 2004 that demonstrated that arginine levels (an amino acid in nuts and peanutbutter) are low in acute asthma. The newspapers tried to get me to say that peanutbutter would treat asthma...that WAS NOT my conclusion, nor would I say that (although I would love it if SKIPPY wants to fund my studies - but again, what makes news is often far from the truth). The newsclip intro to the local TV news broadcast was that " Oakland researcher finds a cure for asthma " , while showing pictures of the local grocery store peanutbutter isle. OK, I wanted to hide, but had to follow that intro and try to redirect them. My kids thought it was cool regardless. Also, ONLY one vitamin E study showed statistically increased risk of death (as opposed to the other 13 studies demonstrating benefits). It was a meta-analysis, or a statistical sum of all the studies, so misleading. In addition, the methods and doses used in each individual study was different - as were the type of patients involved in each of the 14 studies. Many patients were on other vitamin supplements, so impossible to tell what effect was from what, and most of the patients were using synthetic vs. natural vitamin E. There is a difference between synthetic and natural, and the synthetic E may deplete or impact natural vit E effects. Also if our apraxic kids end up having an increased consumption/utilization of vitamin E, decreased absorption or abnormal metabolism of vitamin E...any mechanism that may increase the body's need for vitamin E - these kids would be in a different catagory than the normal person on the street without a deficiency. Give a bolus of insulin to a non-diabetic, and you may kill them. However insulin is life saving for those whose body can't make it. Not to say vitamin E is like insulin, but in a way...I did tell my pediatrician after one of ph's regressions off fish oil, that I felt like it was in fact his " insulin " , and without it...his brain just fell apart. See below for a commentary written about the Hopkins report. It may clarify things. Regardless, a dose of 400 IU a day is benign for a child...but it should be NATURAL, not synthetic. The label should read " alpha-d-tocophorol " and NOT alpha-dl-tocophorol. Its the " dl " that tells you its synthetic, but easy to miss this small differentiation. In addition, gamma tocophorol should be used...and it comes in 200-300 mg gel caps. One alpha and one gamma a day is a good safe dose...until we know more. But this is why it may make sense to check vitamin E plasma levels first, since a documented vitamin E deficiency may suggest the need for even higher doses. To give you an idea, the recommended dose for vitamin E deficiency related neuropathy, or nerve/brain damage (???which some of our apraxic kids may just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high dose, and is indicated for Vit E deficiency syndromes, and something that should be monitored closely by an MD or nutritionalist. But this dose is indicated for certain disease states of deficiency, and essential to these particular patients in order to treat their condition. For apraxia - we don't know if there is a deficiency that can be identified by a blood test, or if patients need higher than normal levels to fix neurological symptoms for some other reason. All I know is that omega 3 worked wonders in helping my son progress with aggressive ST and OT. Yet Vitamin E is causing/has caused a resolution of ALL symptoms of global apraxia/hypotonia and SID. My son also has been identified recently with a severe carnitine deficiency. This is not routinely checked in apraxia. Maybe is should be. This may be uncommon - however to have this undiagnosed and untreated can lead to sudden death. Scary. We are getting all my kids checked for low carnitine, in case it is some genetic red herring totally unrelated to apraxia. However since it is commonly reported in children with autism, I suspect this may not be that rare. One never knows until one really looks. Although Vitamin E is an unlikely culprit, sometimes the most complicated problems still have a simple answer. Unfortunately the sensationalism of headline news may scare people away from potentially good treatments. Just like the fear of fish oil. I think it is good to ask questions though, and not take the " unknown " at face value. So I don't take your question the wrong way. It is actually an excellent question, since it is so hard to sift through the literature and figure out what is and isn't valid. It is also possible that what we are experiencing with my boy is a fluke from some weird genetics specific to my son. But since he sounds like the posterchild for global apraxia, I don't think this will be an isolated observation, particularly in kids who respond to omega supplements. Without my own relentless " why " - my son would still be severely impaired. - ---------------------------------------------------------------------------- ---------------------------------- The real facts about the vitamin E death warning... Print Report | Add to Favorites Do you ever feel fed up with all the conflicting health information in newspapers and magazines? This week, you'll see a story about the benefits of taking a certain supplement. A week later, you'll read or hear a report about the dangers of the very same substance, with warnings by an expert to stay away from it. A good example comes from the latest " death warning " about vitamin E. According to recent headlines, people could be " risking their lives " if they take even moderately high doses of vitamin E [1]. To add to the confusion, researchers from Israel now tell us that some patients with diabetes can reduce their risk of dying from heart disease by taking — you guessed it — high doses of vitamin E [2]. This kind of conflicting evidence prompts many frustrated people to throw up their arms in frustration at the fact that " even the experts can't agree. " It's easy to become so frustrated and confused that you simply ignore it all. Don't throw your vitamin E supplements in the bin just yet. There are several important aspects of the s Hopkins study that didn't get much coverage in the news. Here's a closer look at what they actually did. The researchers looked at a number of studies carried out between 1993 and 2004. All compared vitamin use against a dummy supplement (placebo). They found that the risk of death did not differ significantly between people given vitamin E and those assigned to placebo. However, the effect of vitamin E differed according to how much was used. In the low-dose studies, vitamin E was linked with a small reduction in the death rate. In the high-dose studies, those who took vitamin E had a 4% increase in the risk of death. Though this increase was small, it was statistically significant. It was this discovery that generated the headlines. One problem is that the review included studies where vitamin E was taken with other vitamins and minerals. The increased risk of death found in some of the studies could have been linked with these other nutrients. It may have had nothing to do with vitamin E. What's more, many of the study groups were people with pre-existing chronic diseases such as cancer, heart disease, Alzheimer's, Parkinson's and kidney failure. Even the editors of the ls of Internal Medicine (the journal where the study was published) write that the findings may not apply to healthy adults. Dr. Alan Gaby, an expert in nutritional therapies, also points out that some of the results were complicated by the fact that the vitamin E and placebo groups were not comparable. " In one high-dose vitamin E study (Cambridge Heart Antioxidant Study), the vitamin E group had higher cholesterol levels and significantly greater percentages of participants with high blood pressure, diabetes, cigarette smoking, and severe coronary artery disease, compared with the placebo group, " says Dr. Gaby. " Thus, the people taking vitamin E were sicker than those taking the placebo, a fact that could account for the slight increase in mortality seen in the vitamin E group. " Facts about vitamin E There are also several different forms of vitamin E. Read the label on a vitamin E supplement, and it will probably say alpha-tocopherol (pronounced al-fa tocko-ferol). Most of the studies reviewed in the s Hopkins research were done using the synthetic (dl-alpha-tocopherol) rather than the natural (d-alpha-tocopherol) form of alpha-tocopherol. Natural vitamin E has roughly twice the availability of synthetic vitamin E. Because of this, you have to take about twice as much of it to get the same effect [4]. If there is a small negative effect of high-dose vitamin E, it might be due in part to the use of dl-alpha-tocopherol. Vitamin E is actually a collective term for eight naturally occurring compounds, four tocopherols (alpha-, beta-, gamma- and delta-) and four tocotrienols (alpha-, beta-, gamma- and delta-). Concentrations of alpha-tocopherol are higher in wheat germ oil, almond and sunflower oil; gamma-tocopherol is the major form of vitamin E in corn oil and soybean oil; levels of tocotrienols are high in rice bran, barley, oats and palm oil. Although most research has focused on the potential health effects of alpha-tocopherol, the three other tocopherols and four tocotrienols are also important. In fact, supplementing with alpha-tocopherol has been shown to reduce blood levels of gamma- and delta-tocopherol [3]. Although they're usually more expensive than alpha-tocopherol, mixed tocopherols are the preferable form of vitamin E, in terms of both safety and effectiveness. If you do use a high-dose vitamin E supplement, look for one that contains mixed tocopherols. Some manufacturers use this term to mean the synthetic dl-alpha-tocopherol, so you need to read the label closely. Of course, the fact that some forms of vitamin E are natural doesn't mean it can be consumed safely in unlimited amounts. Many supplements, including vitamin C, iron, CLA and CoQ10 — under certain conditions — can have negative side effects. Even plain water has the potential to be harmful [6]! Based on its blood-thinning effects, there are concerns that vitamin E could cause problems if combined with medications that also thin the blood, such as aspirin. In theory, the blood could thin too much, causing bleeding problems. Vitamin E may also enhance the body's sensitivity to its own insulin in people with type II diabetes [5]. This could lead to a risk of blood sugar levels falling too low. If you're taking medication, it would be a good idea to talk with your physician before using a high-dose vitamin E supplement. The bottom line One of the main goals of a newspaper or magazine is to sell more copies. They'll achieve this with a sensational headline that reads something like " vitamin E death warning " rather than one that accurately reflects the findings of a study. Personally, I use a multi-vitamin and mineral supplement that contains 150 IU of vitamin E (d-alpha-tocopherol succinate). Most days, I also use a meal replacement supplement containing 30 IU of vitamin E. That gives me at least 180 IU of vitamin E each day, plus what I get from my diet. This new research has not convinced me to use less vitamin E. One study is not really news. Think of it as a single piece of a jigsaw puzzle. It's only when you put the pieces together by comparing many studies in a given field that you get an accurate picture of what's really going on. Do you need help burning the fat from your belly or packing muscle on your chest, shoulders and arms? This site contains everything you need to know. It will teach you the best ways to get the lean, strong, healthy body you deserve. Get more FREE fat-burning and muscle-building tips here » References 1. , E.R. 3rd, Pastor-Barriuso, R., Dalal, D., Riemersma, R.A., Appel, L.J., & Guallar, E. (2004). Meta-Analysis: High-Dosage Vitamin E Supplementation May Increase All-Cause Mortality. ls of Internal Medicine, 142 2. Levy, A.P., Gerstein, H.C., -Lotan, R., Ratner, R., McQueen, M., Lonn, E., & Pogue, J. (2004). The effect of vitamin E supplementation on cardiovascular risk in diabetic individuals with different haptoglobin phenotypes. Diabetes Care, 27, 2767 3. Huang, H.Y., & Appel, LJ. (2003). Supplementation of diets with alpha-tocopherol reduces serum concentrations of gamma- and delta-tocopherol in humans. Journal of Nutrition, 133, 3137-3140 4. Burton, G.W., Traber, M.G., Acuff, R.V., Walters, D.N., Kayden, H., , L., & Ingold, K.U. (1998). Human plasma and tissue alpha-tocopherol concentrations in response to supplementation with deuterated natural and synthetic vitamin E. American Journal of Clinical Nutrition, 67, 669-684 5. Manning, P.J., Sutherland, W.H., , R.J., , S.M., De Jong, S.A., Ryalls, A.R., & Berry, E.A. (2004). Effect of high-dose vitamin E on insulin resistance and associated parameters in overweight subjects. Diabetes Care, 27, 2166-2171 6. Noakes, T.D. (2003). Overconsumption of fluids by athletes. British Medical Journal, 327, 113-114 [ ] Re: Important message you all want to read...and share ,, and everyone. That is VERY interesting, and VERY inspiring to hear about ph. It makes me want to try Vit. E supplement with my daughter. I too did a little reading about the signs/symptoms related to vit e deficiency. It turns out (according to Merck) Abby has had most of them too. (including ophthalmoplegia) If you recall I once posted how her eyes made very fast jerky movements. She did this 2x in the hospital as a newborn, then again shortly after coming home. When I told her pediatrician, he claimed to examine her, and I quote " there doesn't seem to be anything wrong " While reading the signs/symptoms, I continued to look up the Vitamin E information. One of the pages I read was from the Hopkins Medicine webpage. /post?act=reply & mess ageNum=50746 They claim to have done a study on vitamin E supplentation. And their conclusion is high doses, (Over 400 IU) may have a higher overall risk of dying. They go on to say most of the people in their study are over age 60, and not all were in perfect health. I only bring this up, because it does concern me, that in effort to help, we " might " inadvertantly hurt our children. With your medical expertise, maybe you can shed some light on this issue/study. Please do not take my questions the wrong way. I am certainly not trying to disprove your claim, nor am I trying to persuade anyone from NOT trying a new option to help our children. I just want reassurance. Thank you.. Dawn in NJ In , " kiddietalk " <kiddietalk@...> wrote: > > I am posting this for Dr. who is an amazing member of > this group, who has news to share of her own son's rapid recovery > from apraxia. As Marina just stated the following methods -as > incredible as they are -are combined with appropriate and > traditional speech and occupational therapies. As a wise neuroMD > once told us as the first apraxia conference > " the brain responds to multiple stimuli " > http://www.cherab.org/news/scientific.html > > Please read the following and share with your child's > pediatrician...this is cutting edge information to help your child > now. Nobody knows where these previously rare multifaceted conditions like > apraxia are coming from in alarming rising numbers -but perhaps as a group we > can learn how to help our children today. Or you can wait for the > studies that are planned. You'll be able to read about them here > too.... in years. > > I know that " " doesn't always share who she is -we just know > her here as , but she is not 'just' , and not 'just' a > Mom, is also a highly respected pediatrician and researcher - > (as well as being a parent of a child with apraxia) > > You may see this message more than once - posted it too...but > I wanted to send this out as a special announcement to make sure all > receive this information. Nobody here will be able to say " why > didn't you tell me?!! " Please share this with others who may need > to know too. And please share here what you find -like . > > Thank you for sharing -ironically, words can't express my > pride and happiness for ph and all those like him! Three cheers > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > From: " " <claudiamorris@...> A > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , Thank you, Thank you, Thank you. This is exactly what I need to hear or read rather. We all have fallen victim to conflicting reports from the media about medical studies,findings, and their reports. And to make light on your peanut butter study.. I know my son would be THRILLED to be told peanut butter " could " cure his excersized induced asthma. He loves pb so much, he melts a few tablespoons in a small dish, then pours it over his vanilla icecream! (Actually, its very yummy.) Again thank you for clarifing for me. And thank you for your understanding my position of wanting further info regarding the hopkins study. Dawn in NJ > > Some interesting comments on the Hopkins study you are asking about are > attached below. Some studies can be very misleading, especially depending > upon how the statistics are run. But this is the sort of story that makes > headlines. My crazy experience with the media...I published an asthma study > in 2004 that demonstrated that arginine levels (an amino acid in nuts and > peanutbutter) are low in acute asthma. The newspapers tried to get me to say > that peanutbutter would treat asthma...that WAS NOT my conclusion, nor would > I say that (although I would love it if SKIPPY wants to fund my studies - > but again, what makes news is often far from the truth). The newsclip intro > to the local TV news broadcast was that " Oakland researcher finds a cure for > asthma " , while showing pictures of the local grocery store peanutbutter > isle. OK, I wanted to hide, but had to follow that intro and try to redirect > them. My kids thought it was cool regardless. > > Also, ONLY one vitamin E study showed statistically increased risk of death > (as opposed to the other 13 studies demonstrating benefits). It was a > meta-analysis, or a statistical sum of all the studies, so misleading. In > addition, the methods and doses used in each individual study was > different - as were the type of patients involved in each of the 14 studies. > Many patients were on other vitamin supplements, so impossible to tell what > effect was from what, and most of the patients were using synthetic vs. > natural vitamin E. There is a difference between synthetic and natural, and > the synthetic E may deplete or impact natural vit E effects. Also if our > apraxic kids end up having an increased consumption/utilization of vitamin > E, decreased absorption or abnormal metabolism of vitamin E...any mechanism > that may increase the body's need for vitamin E - these kids would be in a > different catagory than the normal person on the street without a > deficiency. Give a bolus of insulin to a non-diabetic, and you may kill > them. However insulin is life saving for those whose body can't make it. > Not to say vitamin E is like insulin, but in a way...I did tell my > pediatrician after one of ph's regressions off fish oil, that I felt > like it was in fact his " insulin " , and without it...his brain just fell > apart. > > See below for a commentary written about the Hopkins report. It may clarify > things. Regardless, a dose of 400 IU a day is benign for a child...but it > should be NATURAL, not synthetic. The label should read " alpha-d- tocophorol " > and NOT alpha-dl-tocophorol. Its the " dl " that tells you its synthetic, but > easy to miss this small differentiation. In addition, gamma tocophorol > should be used...and it comes in 200-300 mg gel caps. One alpha and one > gamma a day is a good safe dose...until we know more. But this is why it may > make sense to check vitamin E plasma levels first, since a documented > vitamin E deficiency may suggest the need for even higher doses. To give > you an idea, the recommended dose for vitamin E deficiency related > neuropathy, or nerve/brain damage (???which some of our apraxic kids may > just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high dose, > and is indicated for Vit E deficiency syndromes, and something that should > be monitored closely by an MD or nutritionalist. But this dose is indicated > for certain disease states of deficiency, and essential to these particular > patients in order to treat their condition. For apraxia - we don't know if > there is a deficiency that can be identified by a blood test, or if patients > need higher than normal levels to fix neurological symptoms for some other > reason. All I know is that omega 3 worked wonders in helping my son > progress with aggressive ST and OT. Yet Vitamin E is causing/has caused a > resolution of ALL symptoms of global apraxia/hypotonia and SID. My son also > has been identified recently with a severe carnitine deficiency. This is not > routinely checked in apraxia. Maybe is should be. This may be uncommon - > however to have this undiagnosed and untreated can lead to sudden death. > Scary. We are getting all my kids checked for low carnitine, in case it is > some genetic red herring totally unrelated to apraxia. However since it is > commonly reported in children with autism, I suspect this may not be that > rare. One never knows until one really looks. Although Vitamin E is an > unlikely culprit, sometimes the most complicated problems still have a > simple answer. > > Unfortunately the sensationalism of headline news may scare people away from > potentially good treatments. Just like the fear of fish oil. I think it is > good to ask questions though, and not take the " unknown " at face value. So I > don't take your question the wrong way. It is actually an excellent > question, since it is so hard to sift through the literature and figure out > what is and isn't valid. It is also possible that what we are experiencing > with my boy is a fluke from some weird genetics specific to my son. But > since he sounds like the posterchild for global apraxia, I don't think this > will be an isolated observation, particularly in kids who respond to omega > supplements. Without my own relentless " why " - my son would still be > severely impaired. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 This is excellent. Thanks for sending. We are actually getting ADEK checked with the next blood draw. I am worried about vit K since I suspect we will find a low level and it is the one potential adverse effect of high dose vit E - lower K and bleeding. I didn't know Vit K had any effects outside of bleeding, so this really is good stuff. - [ ] Re: Important message you all want to read...and share , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > > > Thank you for sharing -ironically, words can't express my > > pride and happiness for ph and all those like him! Three > cheers > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > From: " " <claudiamorris@> A > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , There are alot of moms I know that have kids with various neuro type symptoms, that also have the same results with K supplementation. We use Life Extension brand one every other day. The cognitve cobweb clearing was huge. I never realized amount of change K would bring, it balanced out my sons mood, he would get very frustrated right before meals, sort of resembling a mild hypoglycemia, but never tested out. But it was exactly what he would be like as a toddler, more of an issue when he was between 2-3 if too much time went between meals. When further researching Vit K there is a very big connection between Vitamin K and pancreatic function, although my sons pancreatic function is fine, I did find the studies out there in regards to insulin/glucose loading and vitamin K status. Honestly this puts a whole new spin on chronic illness such a s diabetes and vitamin response. Relationship between acute insulin response and vitamin K intake in healthy young male volunteers.Sakamoto N, Nishiike T, Iguchi H, Sakamoto K. Department of Hygiene, Hyogo College of Medicine, Nisinomiya, Japan. naomasas@... To evaluate the effects of vitamin K (VK) on pancreatic function, especially on acute insulin response, 25 healthy young male volunteers were given an oral load of 75 g of glucose, and their mean daily VK intake was estimated by a one-week food check list. After excluding low (<20) and high (> or =25) body mass index (BMI) subjects, the remaining 16 participants were divided into three semi- equal groups according to VK intake. Blood VK status of the low VK intake group tended to be poorer than that of the high intake group (median of 5 samples: prothrombin time; 12.5 vs 12.2s and protein- induced VK absence-factor-II; 23 vs 15 mAU/ml), but fasting plasma glucose status was not markedly different between both groups: [plasma glucose (PG); 87 vs 86 mg/dl, immunoreactive insulin (IRI); 6.7 vs 5.3 microU/ml, HbA1c; 4.8 vs 4.9%]. However, at 30 min after glucose loading, PG of the low VK intake group tended to be higher than those of the high intake group (160 vs 145 mg/dl) and IRI was lower (36.1 vs 52.3 microU/ml). Insulinogenic index (incremental IRI/incremental PG, 0-30 min) of the low VK intake group was significantly lower than that of the high intake group (0.4 vs 0.9). These results suggested that VK may play an important role on the acute insulin response in glucose tolerance > > This is excellent. Thanks for sending. We are actually getting ADEK checked > with the next blood draw. I am worried about vit K since I suspect we will > find a low level and it is the one potential adverse effect of high dose vit > E - lower K and bleeding. I didn't know Vit K had any effects outside of > bleeding, so this really is good stuff. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 I don't think anyone should be increasing a dose past this without close supervision of an MD or nutritionalist, and following levels...until we have more information. " Do no harm " is key. I get the alpha " d " tocophorol and gamma from the general health food store. There is also an on-line soy free " Dr. Ron's ultra pure vitamin E " . I have to look into this product as it combines alpha and gamma, and is soy free (but expensiver - more so that the health food store which may be just as good). I think its a capsule though - which may be more difficult to get the kids to take. There is also a water soluable vitamin E preparation that the cystic fibrosis kids take. So still a lot more to learn. Honestly I am no expert on this - I literally just started reading up on vitamin E, symptoms of deficiency and types of supplements early July. If I had given my nutritional courses more attention in med school, maybe I would have recognized that all the signs of vitamin E deficiency sound like apraxia and SID. Better late than never. Re: [ ] Important message you all want to read...and share <<<<<We have just been supplementing with alpha and gamma. Gamma comes typically in a 300 mg gel-cap. One alpha and one gamma a day is a good start. We saw immediate OMG results within 48 hours. The surge lasted about 3 weeks, then leveled off. I did go to a higher dose after the 4th week...and we got another surge which has brought us to where we are now...>>> , Ok, answered part of my previous question when I read your post again. So my question is, what is Alpha and Gamma (where do you get it from?) and how much did you increase the dose after the 3 weeks when it leveled off? Thank you.. Jill Jill <jills2daughters@...> wrote: Hello , I was very interested in what you've been doing with Vitamin E with your son. Especially so as my 's diagnosis is very simular (Global Dyspraxia, Hyptonia, sensory issues, etc.). currently takes 4 Nordic Natural Omega-3.6.9 Junior capsules as well as a multi vitamin. That would be 30 IU of Vit. E in the fish oil and another 30 IU in the multi-vitamin for 60 IU total. What brand and quantity of Vit. E have you been giving your son? is 6 and will be 7 years old on Dec. 1st. Thanks, Jill kiddietalk <kiddietalk@...> wrote: I am posting this for Dr. who is an amazing member of this group, who has news to share of her own son's rapid recovery from apraxia. As Marina just stated the following methods -as incredible as they are -are combined with appropriate and traditional speech and occupational therapies. As a wise neuroMD once told us as the first apraxia conference " the brain responds to multiple stimuli " http://www.cherab.org/news/scientific.html Please read the following and share with your child's pediatrician...this is cutting edge information to help your child now. Nobody knows where these previously rare multifaceted conditions like apraxia are coming from in alarming rising numbers -but perhaps as a group we can learn how to help our children today. Or you can wait for the studies that are planned. You'll be able to read about them here too.... in years. I know that " " doesn't always share who she is -we just know her here as , but she is not 'just' , and not 'just' a Mom, is also a highly respected pediatrician and researcher - (as well as being a parent of a child with apraxia) You may see this message more than once - posted it too...but I wanted to send this out as a special announcement to make sure all receive this information. Nobody here will be able to say " why didn't you tell me?!! " Please share this with others who may need to know too. And please share here what you find -like . Thank you for sharing -ironically, words can't express my pride and happiness for ph and all those like him! Three cheers for you too Dr. -you put the " Dr. Mom " in Dr. Mom! From: " " <claudiamorris@...> A " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Why were you looking at ADEK in the first place? Why did your son have fat-soluble vitamin deficiencies? Any history of food allergies? What doses of ADEK were you giving? And are you still supplementing? Did your son also have low carnitine and are/were you supplementing that? Thanks for the info! - [ ] Re: Important message you all want to read...and share , Wonderful news on your detective work. We also had the same here, ADEK were all in the low normal, when we supplemented those, we also lost the apraxia/hypotonia/SID within about a months time, although the levels did not reflect the huge improvements we obtained, you are fortunate you discovered this at such an early age. We found it at the age of 5,(my son is now 8, our story is in the archieves) and we had for who knows how long, fat soluble vitamin deficiencies that bone growth was affected, mild ricketts/osteoporosis that is now resolved. You might want to get his D and K levels checked. Although, levels test low norm, not much attention is ever given to it. When we supplemented vitamin K, we sustained huge surges cognitively. Here is an article on Vitamin K and oxidative stress in developing neurons if you have not seen it yet. L-Carnitine is used extensively in children with autism and should be with apraxia as well if the testing justifies it. In my practice nearly all the kids are on A,D,E,K, carnitine etc. When we supplemented my son appropriately, his allergies were eliminated completely, same goes for most of the kids we work with. J Neurosci. 2003 Jul 2;23(13):5816-26. Links Novel role of vitamin k in preventing oxidative injury to developing oligodendrocytes and neurons. Li J, Lin JC, Wang H, JW, Furie BC, Furie B, Booth SL, Volpe JJ, Rosenberg PA. Department of Neurology, Division of Neuroscience, Children's Hospital, Boston, MA 02115, USA. Oxidative stress is believed to be the cause of cell death in multiple disorders of the brain, including perinatal hypoxia/ischemia. Glutamate, cystine deprivation, homocysteic acid, and the glutathione synthesis inhibitor buthionine sulfoximine all cause oxidative injury to immature neurons and oligodendrocytes by depleting intracellular glutathione. Although vitamin K is not a classical antioxidant, we report here the novel finding that vitamin K1 and K2 (menaquinone-4) potently inhibit glutathione depletion- mediated oxidative cell death in primary cultures of oligodendrocyte precursors and immature fetal cortical neurons with EC50 values of 30 nm and 2 nm, respectively. The mechanism by which vitamin K blocks oxidative injury is independent of its only known biological function as a cofactor for gamma-glutamylcarboxylase, an enzyme responsible for posttranslational modification of specific proteins. Neither oligodendrocytes nor neurons possess significant vitamin K- dependent carboxylase or epoxidase activity. Furthermore, the vitamin K antagonists warfarin and dicoumarol and the direct carboxylase inhibitor 2-chloro-vitamin K1 have no effect on the protective function of vitamin K against oxidative injury. Vitamin K does not prevent the depletion of intracellular glutathione caused by cystine deprivation but completely blocks free radical accumulation and cell death. The protective and potent efficacy of this naturally occurring vitamin, with no established clinical side effects, suggests a potential therapeutic application in preventing oxidative damage to undifferentiated oligodendrocytes in perinatal hypoxic/ischemic brain injury. PMID: 12843286 [PubMed - indexed for MEDLINE > > > > I am posting this for Dr. who is an amazing member > of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' > a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it > too...but > > I wanted to send this out as a special announcement to make sure > all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 This is fascinating giving the genetic & clinical association of celiac and diabetes...given that patients with celiac disease likely have issues around ALL the fat soluable vitamins because of malabsorption. - [ ] Re: Important message you all want to read...and share , There are alot of moms I know that have kids with various neuro type symptoms, that also have the same results with K supplementation. We use Life Extension brand one every other day. The cognitve cobweb clearing was huge. I never realized amount of change K would bring, it balanced out my sons mood, he would get very frustrated right before meals, sort of resembling a mild hypoglycemia, but never tested out. But it was exactly what he would be like as a toddler, more of an issue when he was between 2-3 if too much time went between meals. When further researching Vit K there is a very big connection between Vitamin K and pancreatic function, although my sons pancreatic function is fine, I did find the studies out there in regards to insulin/glucose loading and vitamin K status. Honestly this puts a whole new spin on chronic illness such a s diabetes and vitamin response. Relationship between acute insulin response and vitamin K intake in healthy young male volunteers.Sakamoto N, Nishiike T, Iguchi H, Sakamoto K. Department of Hygiene, Hyogo College of Medicine, Nisinomiya, Japan. naomasas@... To evaluate the effects of vitamin K (VK) on pancreatic function, especially on acute insulin response, 25 healthy young male volunteers were given an oral load of 75 g of glucose, and their mean daily VK intake was estimated by a one-week food check list. After excluding low (<20) and high (> or =25) body mass index (BMI) subjects, the remaining 16 participants were divided into three semi- equal groups according to VK intake. Blood VK status of the low VK intake group tended to be poorer than that of the high intake group (median of 5 samples: prothrombin time; 12.5 vs 12.2s and protein- induced VK absence-factor-II; 23 vs 15 mAU/ml), but fasting plasma glucose status was not markedly different between both groups: [plasma glucose (PG); 87 vs 86 mg/dl, immunoreactive insulin (IRI); 6.7 vs 5.3 microU/ml, HbA1c; 4.8 vs 4.9%]. However, at 30 min after glucose loading, PG of the low VK intake group tended to be higher than those of the high intake group (160 vs 145 mg/dl) and IRI was lower (36.1 vs 52.3 microU/ml). Insulinogenic index (incremental IRI/incremental PG, 0-30 min) of the low VK intake group was significantly lower than that of the high intake group (0.4 vs 0.9). These results suggested that VK may play an important role on the acute insulin response in glucose tolerance > > This is excellent. Thanks for sending. We are actually getting ADEK checked > with the next blood draw. I am worried about vit K since I suspect we will > find a low level and it is the one potential adverse effect of high dose vit > E - lower K and bleeding. I didn't know Vit K had any effects outside of > bleeding, so this really is good stuff. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Peanuts and peanutbutter (organic without all the sugar and salt) ARE actually very healthy (unless you are nut allergic). There was a study a few years back that showed that peanuts improved diabetic control - and I was like - yes...its the ARGININE. In fact foods high in arginine may in fact turn out to be good for asthma...but that was not what my particular study was investigating. (But the media often does not let the truth get in the way of a good headline). The number of calls I got after that broadcast...people hunting me down...wanting to go off all their appropriate asthma inhalers...ugh. I have really avoided the media since. But brings us back the the concept of healthy, natural and unprocessed foods are good for us, and there is definitely more to nutrition and good health than it is given credit for. (An apple a day...) [ ] Re: Important message you all want to read...and share , Thank you, Thank you, Thank you. This is exactly what I need to hear or read rather. We all have fallen victim to conflicting reports from the media about medical studies,findings, and their reports. And to make light on your peanut butter study.. I know my son would be THRILLED to be told peanut butter " could " cure his excersized induced asthma. He loves pb so much, he melts a few tablespoons in a small dish, then pours it over his vanilla icecream! (Actually, its very yummy.) Again thank you for clarifing for me. And thank you for your understanding my position of wanting further info regarding the hopkins study. Dawn in NJ > > Some interesting comments on the Hopkins study you are asking about are > attached below. Some studies can be very misleading, especially depending > upon how the statistics are run. But this is the sort of story that makes > headlines. My crazy experience with the media...I published an asthma study > in 2004 that demonstrated that arginine levels (an amino acid in nuts and > peanutbutter) are low in acute asthma. The newspapers tried to get me to say > that peanutbutter would treat asthma...that WAS NOT my conclusion, nor would > I say that (although I would love it if SKIPPY wants to fund my studies - > but again, what makes news is often far from the truth). The newsclip intro > to the local TV news broadcast was that " Oakland researcher finds a cure for > asthma " , while showing pictures of the local grocery store peanutbutter > isle. OK, I wanted to hide, but had to follow that intro and try to redirect > them. My kids thought it was cool regardless. > > Also, ONLY one vitamin E study showed statistically increased risk of death > (as opposed to the other 13 studies demonstrating benefits). It was a > meta-analysis, or a statistical sum of all the studies, so misleading. In > addition, the methods and doses used in each individual study was > different - as were the type of patients involved in each of the 14 studies. > Many patients were on other vitamin supplements, so impossible to tell what > effect was from what, and most of the patients were using synthetic vs. > natural vitamin E. There is a difference between synthetic and natural, and > the synthetic E may deplete or impact natural vit E effects. Also if our > apraxic kids end up having an increased consumption/utilization of vitamin > E, decreased absorption or abnormal metabolism of vitamin E...any mechanism > that may increase the body's need for vitamin E - these kids would be in a > different catagory than the normal person on the street without a > deficiency. Give a bolus of insulin to a non-diabetic, and you may kill > them. However insulin is life saving for those whose body can't make it. > Not to say vitamin E is like insulin, but in a way...I did tell my > pediatrician after one of ph's regressions off fish oil, that I felt > like it was in fact his " insulin " , and without it...his brain just fell > apart. > > See below for a commentary written about the Hopkins report. It may clarify > things. Regardless, a dose of 400 IU a day is benign for a child...but it > should be NATURAL, not synthetic. The label should read " alpha-d- tocophorol " > and NOT alpha-dl-tocophorol. Its the " dl " that tells you its synthetic, but > easy to miss this small differentiation. In addition, gamma tocophorol > should be used...and it comes in 200-300 mg gel caps. One alpha and one > gamma a day is a good safe dose...until we know more. But this is why it may > make sense to check vitamin E plasma levels first, since a documented > vitamin E deficiency may suggest the need for even higher doses. To give > you an idea, the recommended dose for vitamin E deficiency related > neuropathy, or nerve/brain damage (???which some of our apraxic kids may > just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high dose, > and is indicated for Vit E deficiency syndromes, and something that should > be monitored closely by an MD or nutritionalist. But this dose is indicated > for certain disease states of deficiency, and essential to these particular > patients in order to treat their condition. For apraxia - we don't know if > there is a deficiency that can be identified by a blood test, or if patients > need higher than normal levels to fix neurological symptoms for some other > reason. All I know is that omega 3 worked wonders in helping my son > progress with aggressive ST and OT. Yet Vitamin E is causing/has caused a > resolution of ALL symptoms of global apraxia/hypotonia and SID. My son also > has been identified recently with a severe carnitine deficiency. This is not > routinely checked in apraxia. Maybe is should be. This may be uncommon - > however to have this undiagnosed and untreated can lead to sudden death. > Scary. We are getting all my kids checked for low carnitine, in case it is > some genetic red herring totally unrelated to apraxia. However since it is > commonly reported in children with autism, I suspect this may not be that > rare. One never knows until one really looks. Although Vitamin E is an > unlikely culprit, sometimes the most complicated problems still have a > simple answer. > > Unfortunately the sensationalism of headline news may scare people away from > potentially good treatments. Just like the fear of fish oil. I think it is > good to ask questions though, and not take the " unknown " at face value. So I > don't take your question the wrong way. It is actually an excellent > question, since it is so hard to sift through the literature and figure out > what is and isn't valid. It is also possible that what we are experiencing > with my boy is a fluke from some weird genetics specific to my son. But > since he sounds like the posterchild for global apraxia, I don't think this > will be an isolated observation, particularly in kids who respond to omega > supplements. Without my own relentless " why " - my son would still be > severely impaired. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , Thank you for posting about the Vit. E and thank you also for you wonderful comments about media hype and research reports. I do have one question for clarification. In the Pro EFA and Pro EPA gel caps there are 30 i.u. of Vit. E per gel cap. I am doing the high does fish oils with my daughter so she is getting 9 gel caps per day (thus also getting 270 I.U. of Vit. E). Are you giving your son 400 I.U. in addition to the Vit E in his Nordic Naturals or are you just adding enough Vit. E to get his total daily intake up to 400 I.U.? Thank you so much for your post and your inquisitive mind. I am eternally grateful. Thank you, Thank you, Thank you! Kris On Aug 23, 2006, at 10:00 PM, wrote: > Some interesting comments on the Hopkins study you are asking about are > attached below. Some studies can be very misleading, especially > depending > upon how the statistics are run. But this is the sort of story that > makes > headlines. My crazy experience with the media...I published an asthma > study > in 2004 that demonstrated that arginine levels (an amino acid in nuts > and > peanutbutter) are low in acute asthma. The newspapers tried to get me > to say > that peanutbutter would treat asthma...that WAS NOT my conclusion, > nor would > I say that (although I would love it if SKIPPY wants to fund my > studies - > but again, what makes news is often far from the truth). The newsclip > intro > to the local TV news broadcast was that " Oakland researcher finds a > cure for > asthma " , while showing pictures of the local grocery store > peanutbutter > isle. OK, I wanted to hide, but had to follow that intro and try to > redirect > them. My kids thought it was cool regardless. > > Also, ONLY one vitamin E study showed statistically increased risk of > death > (as opposed to the other 13 studies demonstrating benefits). It was a > meta-analysis, or a statistical sum of all the studies, so > misleading. In > addition, the methods and doses used in each individual study was > different - as were the type of patients involved in each of the 14 > studies. > Many patients were on other vitamin supplements, so impossible to > tell what > effect was from what, and most of the patients were using synthetic > vs. > natural vitamin E. There is a difference between synthetic and > natural, and > the synthetic E may deplete or impact natural vit E effects. Also if > our > apraxic kids end up having an increased consumption/utilization of > vitamin > E, decreased absorption or abnormal metabolism of vitamin E...any > mechanism > that may increase the body's need for vitamin E - these kids would be > in a > different catagory than the normal person on the street without a > deficiency. Give a bolus of insulin to a non-diabetic, and you may > kill > them. However insulin is life saving for those whose body can't make > it. > Not to say vitamin E is like insulin, but in a way...I did tell my > pediatrician after one of ph's regressions off fish oil, that I > felt > like it was in fact his " insulin " , and without it...his brain just > fell > apart. > > See below for a commentary written about the Hopkins report. It may > clarify > things. Regardless, a dose of 400 IU a day is benign for a > child...but it > should be NATURAL, not synthetic. The label should read > " alpha-d-tocophorol " > and NOT alpha-dl-tocophorol. Its the " dl " that tells you its > synthetic, but > easy to miss this small differentiation. In addition, gamma tocophorol > should be used...and it comes in 200-300 mg gel caps. One alpha and > one > gamma a day is a good safe dose...until we know more. But this is why > it may > make sense to check vitamin E plasma levels first, since a documented > vitamin E deficiency may suggest the need for even higher doses. To > give > you an idea, the recommended dose for vitamin E deficiency related > neuropathy, or nerve/brain damage (???which some of our apraxic kids > may > just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high > dose, > and is indicated for Vit E deficiency syndromes, and something that > should > be monitored closely by an MD or nutritionalist. But this dose is > indicated > for certain disease states of deficiency, and essential to these > particular > patients in order to treat their condition. For apraxia - we don't > know if > there is a deficiency that can be identified by a blood test, or if > patients > need higher than normal levels to fix neurological symptoms for some > other > reason. All I know is that omega 3 worked wonders in helping my son > progress with aggressive ST and OT. Yet Vitamin E is causing/has > caused a > resolution of ALL symptoms of global apraxia/hypotonia and SID. My > son also > has been identified recently with a severe carnitine deficiency. This > is not > routinely checked in apraxia. Maybe is should be. This may be > uncommon - > however to have this undiagnosed and untreated can lead to sudden > death. > Scary. We are getting all my kids checked for low carnitine, in case > it is > some genetic red herring totally unrelated to apraxia. However since > it is > commonly reported in children with autism, I suspect this may not be > that > rare. One never knows until one really looks. Although Vitamin E is an > unlikely culprit, sometimes the most complicated problems still have a > simple answer. > > Unfortunately the sensationalism of headline news may scare people > away from > potentially good treatments. Just like the fear of fish oil. I think > it is > good to ask questions though, and not take the " unknown " at face > value. So I > don't take your question the wrong way. It is actually an excellent > question, since it is so hard to sift through the literature and > figure out > what is and isn't valid. It is also possible that what we are > experiencing > with my boy is a fluke from some weird genetics specific to my son. > But > since he sounds like the posterchild for global apraxia, I don't > think this > will be an isolated observation, particularly in kids who respond to > omega > supplements. Without my own relentless " why " - my son would still be > severely impaired. - > > ---------------------------------------------------------- > ---------------------------------- > > The real facts about the vitamin E death warning... > Print Report | Add to Favorites > > Do you ever feel fed up with all the conflicting health information in > newspapers and magazines? > > This week, you'll see a story about the benefits of taking a certain > supplement. A week later, you'll read or hear a report about the > dangers of > the very same substance, with warnings by an expert to stay away from > it. > > A good example comes from the latest " death warning " about vitamin E. > According to recent headlines, people could be " risking their lives " > if they > take even moderately high doses of vitamin E [1]. > > To add to the confusion, researchers from Israel now tell us that some > patients with diabetes can reduce their risk of dying from heart > disease by > taking — you guessed it — high doses of vitamin E [2]. > > This kind of conflicting evidence prompts many frustrated people to > throw up > their arms in frustration at the fact that " even the experts can't > agree. " > It's easy to become so frustrated and confused that you simply ignore > it > all. > > Don't throw your vitamin E supplements in the bin just yet. There are > several important aspects of the s Hopkins study that didn't get > much > coverage in the news. > > Here's a closer look at what they actually did. > > The researchers looked at a number of studies carried out between > 1993 and > 2004. All compared vitamin use against a dummy supplement (placebo). > > They found that the risk of death did not differ significantly between > people given vitamin E and those assigned to placebo. > > However, the effect of vitamin E differed according to how much was > used. In > the low-dose studies, vitamin E was linked with a small reduction in > the > death rate. > > In the high-dose studies, those who took vitamin E had a 4% increase > in the > risk of death. Though this increase was small, it was statistically > significant. > > It was this discovery that generated the headlines. > > One problem is that the review included studies where vitamin E was > taken > with other vitamins and minerals. The increased risk of death found > in some > of the studies could have been linked with these other nutrients. It > may > have had nothing to do with vitamin E. > > What's more, many of the study groups were people with pre-existing > chronic > diseases such as cancer, heart disease, Alzheimer's, Parkinson's and > kidney > failure. > > Even the editors of the ls of Internal Medicine (the journal > where the > study was published) write that the findings may not apply to healthy > adults. > > Dr. Alan Gaby, an expert in nutritional therapies, also points out > that some > of the results were complicated by the fact that the vitamin E and > placebo > groups were not comparable. > > " In one high-dose vitamin E study (Cambridge Heart Antioxidant > Study), the > vitamin E group had higher cholesterol levels and significantly > greater > percentages of participants with high blood pressure, diabetes, > cigarette > smoking, and severe coronary artery disease, compared with the placebo > group, " says Dr. Gaby. > > " Thus, the people taking vitamin E were sicker than those taking the > placebo, a fact that could account for the slight increase in > mortality seen > in the vitamin E group. " > > Facts about vitamin E > There are also several different forms of vitamin E. Read the label > on a > vitamin E supplement, and it will probably say alpha-tocopherol > (pronounced > al-fa tocko-ferol). > > Most of the studies reviewed in the s Hopkins research were done > using > the synthetic (dl-alpha-tocopherol) rather than the natural > (d-alpha-tocopherol) form of alpha-tocopherol. > > Natural vitamin E has roughly twice the availability of synthetic > vitamin E. > Because of this, you have to take about twice as much of it to get > the same > effect [4]. > > If there is a small negative effect of high-dose vitamin E, it might > be due > in part to the use of dl-alpha-tocopherol. > > Vitamin E is actually a collective term for eight naturally occurring > compounds, four tocopherols (alpha-, beta-, gamma- and delta-) and > four > tocotrienols (alpha-, beta-, gamma- and delta-). > > Concentrations of alpha-tocopherol are higher in wheat germ oil, > almond and > sunflower oil; gamma-tocopherol is the major form of vitamin E in > corn oil > and soybean oil; levels of tocotrienols are high in rice bran, > barley, oats > and palm oil. > > Although most research has focused on the potential health effects of > alpha-tocopherol, the three other tocopherols and four tocotrienols > are also > important. > > In fact, supplementing with alpha-tocopherol has been shown to reduce > blood > levels of gamma- and delta-tocopherol [3]. > > Although they're usually more expensive than alpha-tocopherol, mixed > tocopherols are the preferable form of vitamin E, in terms of both > safety > and effectiveness. > > If you do use a high-dose vitamin E supplement, look for one that > contains > mixed tocopherols. Some manufacturers use this term to mean the > synthetic > dl-alpha-tocopherol, so you need to read the label closely. > > Of course, the fact that some forms of vitamin E are natural doesn't > mean it > can be consumed safely in unlimited amounts. Many supplements, > including > vitamin C, iron, CLA and CoQ10 — under certain conditions — can have > negative side effects. > > Even plain water has the potential to be harmful [6]! > > Based on its blood-thinning effects, there are concerns that vitamin > E could > cause problems if combined with medications that also thin the blood, > such > as aspirin. In theory, the blood could thin too much, causing bleeding > problems. > > Vitamin E may also enhance the body's sensitivity to its own insulin > in > people with type II diabetes [5]. This could lead to a risk of blood > sugar > levels falling too low. > > If you're taking medication, it would be a good idea to talk with your > physician before using a high-dose vitamin E supplement. > > The bottom line > One of the main goals of a newspaper or magazine is to sell more > copies. > They'll achieve this with a sensational headline that reads something > like > " vitamin E death warning " rather than one that accurately reflects the > findings of a study. > > Personally, I use a multi-vitamin and mineral supplement that > contains 150 > IU of vitamin E (d-alpha-tocopherol succinate). Most days, I also use > a meal > replacement supplement containing 30 IU of vitamin E. That gives me > at least > 180 IU of vitamin E each day, plus what I get from my diet. > > This new research has not convinced me to use less vitamin E. > > One study is not really news. Think of it as a single piece of a > jigsaw > puzzle. It's only when you put the pieces together by comparing many > studies > in a given field that you get an accurate picture of what's really > going on. > > Do you need help burning the fat from your belly or packing muscle on > your > chest, shoulders and arms? This site contains everything you need to > know. > It will teach you the best ways to get the lean, strong, healthy body > you > deserve. Get more FREE fat-burning and muscle-building tips here » > > References > 1. , E.R. 3rd, Pastor-Barriuso, R., Dalal, D., Riemersma, R.A., > Appel, > L.J., & Guallar, E. (2004). Meta-Analysis: High-Dosage Vitamin E > Supplementation May Increase All-Cause Mortality. ls of Internal > Medicine, 142 > 2. Levy, A.P., Gerstein, H.C., -Lotan, R., Ratner, R., McQueen, > M., > Lonn, E., & Pogue, J. (2004). The effect of vitamin E supplementation > on > cardiovascular risk in diabetic individuals with different haptoglobin > phenotypes. Diabetes Care, 27, 2767 > 3. Huang, H.Y., & Appel, LJ. (2003). Supplementation of diets with > alpha-tocopherol reduces serum concentrations of gamma- and > delta-tocopherol > in humans. Journal of Nutrition, 133, 3137-3140 > 4. Burton, G.W., Traber, M.G., Acuff, R.V., Walters, D.N., Kayden, H., > , L., & Ingold, K.U. (1998). Human plasma and tissue > alpha-tocopherol > concentrations in response to supplementation with deuterated natural > and > synthetic vitamin E. American Journal of Clinical Nutrition, 67, > 669-684 > 5. Manning, P.J., Sutherland, W.H., , R.J., , S.M., De > Jong, > S.A., Ryalls, A.R., & Berry, E.A. (2004). Effect of high-dose vitamin > E on > insulin resistance and associated parameters in overweight subjects. > Diabetes Care, 27, 2166-2171 > 6. Noakes, T.D. (2003). Overconsumption of fluids by athletes. British > Medical Journal, 327, 113-114 > > [ ] Re: Important message you all want to > read...and share > > ,, and everyone. > That is VERY interesting, and VERY inspiring to hear about ph. > It makes me want to try Vit. E supplement with my daughter. > > I too did a little reading about the signs/symptoms related to vit e > deficiency. It turns out (according to Merck) Abby has had most of > them too. (including ophthalmoplegia) If you recall I once posted how > her eyes made very fast jerky movements. She did this 2x in the > hospital as a newborn, then again shortly after coming home. When I > told her pediatrician, he claimed to examine her, and I quote " there > doesn't seem to be anything wrong " > > While reading the signs/symptoms, I continued to look up the Vitamin > E information. One of the pages I read was from the Hopkins > Medicine webpage. > /post? > act=reply & mess > ageNum=50746 > > They claim to have done a study on vitamin E supplentation. And their > conclusion is high doses, (Over 400 IU) may have a higher overall > risk of dying. They go on to say most of the people in their study > are over age 60, and not all were in perfect health. > > I only bring this up, because it does concern me, that in effort to > help, we " might " inadvertantly hurt our children. With your medical > expertise, maybe you can shed some light on this issue/study. > > Please do not take my questions the wrong way. I am certainly not > trying to disprove your claim, nor am I trying to persuade anyone > from NOT trying a new option to help our children. I just want > reassurance. > > Thank you.. > Dawn in NJ > > In , " kiddietalk " > <kiddietalk@...> wrote: > > > > I am posting this for Dr. who is an amazing member of > > this group, who has news to share of her own son's rapid recovery > > from apraxia. As Marina just stated the following methods -as > > incredible as they are -are combined with appropriate and > > traditional speech and occupational therapies. As a wise neuroMD > > once told us as the first apraxia conference > > " the brain responds to multiple stimuli " > > http://www.cherab.org/news/scientific.html > > > > Please read the following and share with your child's > > pediatrician...this is cutting edge information to help your child > > now. Nobody knows where these previously rare multifaceted > conditions like > > apraxia are coming from in alarming rising numbers -but perhaps as > a group we > > can learn how to help our children today. Or you can wait for the > > studies that are planned. You'll be able to read about them here > > too.... in years. > > > > I know that " " doesn't always share who she is -we just know > > her here as , but she is not 'just' , and not 'just' a > > Mom, is also a highly respected pediatrician and > researcher - > > (as well as being a parent of a child with apraxia) > > > > You may see this message more than once - posted it too...but > > I wanted to send this out as a special announcement to make sure all > > receive this information. Nobody here will be able to say " why > > didn't you tell me?!! " Please share this with others who may need > > to know too. And please share here what you find -like . > > > > Thank you for sharing -ironically, words can't express my > > pride and happiness for ph and all those like him! Three cheers > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > From: " " <claudiamorris@...> A > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Ok, you lost me a bit. Do you test for vitamins A, E, D and K through a standard lab like CPL or Quest? Or is this through a specialized lab? How much vit E and vit K are you giving? Where do you get Vitamin K - I've never seen it at Whole Foods or any of my online vitamin stores. I would love to hear more about this. My kids have both been on carnitine for long periods of time, and it alone has never helped their hypotonia. Wow, I would be amazed if that small bit if vit E in carnaware played a major part in my daughter's recovery from apraxia! Please point me to more info about vitamin K and learning disorders. Thanks! > > > > > > I am posting this for Dr. who is an amazing member > > of > > > this group, who has news to share of her own son's rapid recovery > > > from apraxia. As Marina just stated the following methods -as > > > incredible as they are -are combined with appropriate and > > > traditional speech and occupational therapies. As a wise neuroMD > > > once told us as the first apraxia conference > > > " the brain responds to multiple stimuli " > > > http://www.cherab.org/news/scientific.html > > > > > > Please read the following and share with your child's > > > pediatrician...this is cutting edge information to help your child > > > now. Nobody knows where these previously rare multifaceted > > conditions like > > > apraxia are coming from in alarming rising numbers -but perhaps > as > > a group we > > > can learn how to help our children today. Or you can wait for the > > > studies that are planned. You'll be able to read about them here > > > too.... in years. > > > > > > I know that " " doesn't always share who she is -we just > know > > > her here as , but she is not 'just' , and > not 'just' > > a > > > Mom, is also a highly respected pediatrician and > > researcher - > > > (as well as being a parent of a child with apraxia) > > > > > > You may see this message more than once - posted it > > too...but > > > I wanted to send this out as a special announcement to make sure > > all > > > receive this information. Nobody here will be able to say " why > > > didn't you tell me?!! " Please share this with others who may need > > > to know too. And please share here what you find -like . > > > > > > Thank you for sharing -ironically, words can't express my > > > pride and happiness for ph and all those like him! Three > > cheers > > > for you too Dr. -you put the " Dr. Mom " in Dr. Mom! > > > > > > From: " " <claudiamorris@> A > > > " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , Took me awhile to write this up as it has been an evolvement of sorts to where we are right now, my son has just turned 8, so we have been at this for best part of 3.5-4 years, so it didn't happen overnight. Where he is now, is not even what he was at when we started supplementation specifically for him in 2004. He is starting regular 3rd grade now, no academic/speech issues at all, and in todays educational environment for boys especially he is way beyond the other kids in class, even the girls. The past year his physical ability has finally caught up to his potential. Like I said you catching this early is so very important, less deficits to make up. Why were we looking at ADEK? Good question. If I remember correctly it was about end of 2003, my son was on Proefa and had the typical positive response most kids get from use. With my background, (thats the benefit of nursing school/NP over medical school, more emphasis is on nutritional side of health and nutritioanl deficiencies are shoved down your throat ALL THE TIME. With his response to oil supplementation,not unlike you, piqued my interest as to the why, what was behind it as their had to be a cause that one pill, could change so much. We got the speech improvements but not the physical strength, we had left side weakness, my son is left handed, at the time, no true dominance was there because of the deficit. He had no diagnosed syndrome, nothing beyond speechissue/SID/hypotonia/low energy. We did a complete workup, checked for guanidinoacetate methyltransferase deficiency and various aminoacidurias, full metabolic workup and part of that workup was vitamin levels. Vitamin A was low 20's reference range of 20-43. Vitamin D levels were also low norm, but further testing was done when we saw abnormalitiies on a hand x ray for growth, he was low grotwh since the age of 3, to see if it was a parathyroid issue which it wasn't. Vit E levels were a bit better than A but not a whole lot, K was also low normal. So that was the start of it. Although celiacs was ruled out, the doctor still he said although celiacs negative, those substances cause alot of inflammation even in non allergic people, so to lower overall inflammation suggested GF/CF soy free,Feingold type diet for him along with the vitamin replacements, he was reactive to sulfites ((corn syrup/high fructose corn syrup more than any other food products) going GF/CF etc., cleared the playing field so to speak, clean diet we had changes within days. He had environmental allergies to trees/pollen/dust mites/mold, he did not have " typical " allerigc response, his response to these substances were more neurological symptoms/ inflammation. WE did serial end point sensitization which eliminated that within 2 pollen seasons. I think it is in the archieves, but my son who was low tone/low energy literally I think it was the first full week of the supplementation(at the time he was in 3 x a week PT,OT/ST) wheelbarrow walked from one end of the center to the other about 30 feet. The week before, he would go about 5-10 feet and collapse on his forearms did not have any strength. I was speechless as was the therapists working with him, as he had been going to them for 5 solid months and working on just this skill alone. A few days later, he ran the high school track w/o stopping (1/4 a mile, before this, he would run down our path 100 feet and that was it totally zapped, no energy at all. As to why, we still do not know why, he had flavorings of a whole host of childhood syndromes, but nothing clear cut, for instance lactate/pyruvate ratio was off, not in the range of mito, but, the ratio was still not smack normal either. He had what a celiac child would have as far as diagnostic criteria/differential, but did not have celiacs. So as of this moment it was classified as malabsorption so, guess that is a new normal for these kids, as they all have malabsorption IMO. We tested immune function, that too, not grossly abnormal, yet not normal either, low NK cells, low activity, but still within range.He had a T2 shift to his immune system. He did also have mild metabolic acidosis on initial testing, to me it was, again,not right in the middle normal(negative for RTA).(I tend to overalnalyze lab values, but it has gotten us this far, and I haven't been too far off or wrong. What I used as far as supplementation goes for the ADEK at that time and since up till several months ago: Dr. Rons Blue Ice CLO for A and D 1/2 teaspoon daily X factor Gold butter oil(used this to balance the 3/6/9)about a 1/4 teaspoon Vitamin E I have used different products Life extension Vitamin E succinate when succinate levels were low, no longer low, so I don't use that form now. I have used this brand like all their products http://www.yasoo.com/index.htm http://www.yasoo.com/aqua-e.htm My sons levels are fine now, and no need to do extra, beyond a particular brand multi vitamin I use that is specifically based on his needs right now. Vit E is RDA amount right now Vitamin D I use now 1000 IU of D3 in the winter, less in the summer months, due to outdoor sun exposure. Still use this and vitamin K separartely due to the past bone issuess We also had low carnitine, thiamine levels, we did supplement those, Alongside the carnitine at that time we used CoQ10/NADH/Idebenone gave about 1/2 dose of each rotating a different one everyday.I still give these at lower doses. http://www.smart-drugs.net/info-idebenone.htm (niacin/nicotinamide levels were low too) we used NADH as niacin is tricky to get righ, and NADH helps reduce glutathione oxidation.So a mini mito cocktail, as mito cocktail supplementation is WAY higher, so like I said earlier, he was a sprinkling of different things. That is how I attacked this, one piece at a time, because it was pieces of a whole that was not working right. I want to make sure anyone reading this understand this was particular to my child, his deficiencies, and would not suggest anyone just start supplementing things without doing the follow up with a nutritionist/or md that specializes in these types of things. You supplement one thing, and you can very easily throw off something else. As long as you understand ADEK are synsergistic vitamins, and really need to be in a balance. Too much A long term can be dangerous and detrimental to bone development, and as mentioned too much E can impede Vitamin K and blood clotting. As long as you keep in mind what RDA amounts are, and you do not go to far above and beyond that. More isn't alwasys better as far as this is concerned. Right now we are at point of further growth, I found another piece of information in regards to his methylation pathways that has garnered us further positive aspects of overall growth. He has physically shot up from a mere 5% height and weight at the age of 3-7.5, to the 50% range, this was about the last hurdle we had to get over, as from birth to 3 he was @ 75% in height and weight, took a slow decline around months 18-36, whatever occured then. He has grown 2.5 inches since March of this year. That is whole years growth in 5 months time, so I know things are finally in order. I do depend more on foods as his source of vitamins like more antioxidants, He has done so well with what we did, and honestly it was mostly on our own, with alot of detective work. I attended many conferences/alternative medicine/just to broaden my views and help me forge a plan of attack, believe me a TON of fluff/misinformation out there, so it wasn't easy. Now, I view health/illness in a totally different view than how I was trained. Sorry to have gotten SO long winded, but that's the story. Perhaps you can gain some info from our journey. Colleen > > > > > > I am posting this for Dr. who is an amazing member > > of > > > this group, who has news to share of her own son's rapid recovery > > > from apraxia. As Marina just stated the following methods -as > > > incredible as they are -are combined with appropriate and > > > traditional speech and occupational therapies. As a wise neuroMD > > > once told us as the first apraxia conference > > > " the brain responds to multiple stimuli " > > > http://www.cherab.org/news/scientific.html > > > > > > Please read the following and share with your child's > > > pediatrician...this is cutting edge information to help your child > > > now. Nobody knows where these previously rare multifaceted > > conditions like > > > apraxia are coming from in alarming rising numbers -but perhaps > as > > a group we > > > can learn how to help our children today. Or you can wait for the > > > studies that are planned. You'll be able to read about them here > > > too.... in years. > > > > > > I know that " " doesn't always share who she is -we just > know > > > her here as , but she is not 'just' , and > not 'just' > > a > > > Mom, is also a highly respected pediatrician and > > researcher - > > > (as well as being a parent of a child with apraxia) > > > > > > You may see this message more than once - posted it > > too...but > > > I wanted to send this out as a special announcement to make sure > > all > > > receive this information. Nobody here will be able to say " why > > > didn't you tell me?!! " Please share this with others who may need > > > to know too. And please share here what you find -like . > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , Thank you, Thank you, Thank you. This is exactly what I need to hear or read rather. We all have fallen victim to conflicting reports from the media about medical studies,findings, and their reports. And to make light on your peanut butter study.. I know my son would be THRILLED to be told peanut butter " could " cure his excersized induced asthma. He loves pb so much, he melts a few tablespoons in a small dish, then pours it over his vanilla icecream! (Actually, its very yummy.) Again thank you for clarifing for me. And thank you for your understanding my position of wanting further info regarding the hopkins study. Dawn in NJ > > Some interesting comments on the Hopkins study you are asking about are > attached below. Some studies can be very misleading, especially depending > upon how the statistics are run. But this is the sort of story that makes > headlines. My crazy experience with the media...I published an asthma study > in 2004 that demonstrated that arginine levels (an amino acid in nuts and > peanutbutter) are low in acute asthma. The newspapers tried to get me to say > that peanutbutter would treat asthma...that WAS NOT my conclusion, nor would > I say that (although I would love it if SKIPPY wants to fund my studies - > but again, what makes news is often far from the truth). The newsclip intro > to the local TV news broadcast was that " Oakland researcher finds a cure for > asthma " , while showing pictures of the local grocery store peanutbutter > isle. OK, I wanted to hide, but had to follow that intro and try to redirect > them. My kids thought it was cool regardless. > > Also, ONLY one vitamin E study showed statistically increased risk of death > (as opposed to the other 13 studies demonstrating benefits). It was a > meta-analysis, or a statistical sum of all the studies, so misleading. In > addition, the methods and doses used in each individual study was > different - as were the type of patients involved in each of the 14 studies. > Many patients were on other vitamin supplements, so impossible to tell what > effect was from what, and most of the patients were using synthetic vs. > natural vitamin E. There is a difference between synthetic and natural, and > the synthetic E may deplete or impact natural vit E effects. Also if our > apraxic kids end up having an increased consumption/utilization of vitamin > E, decreased absorption or abnormal metabolism of vitamin E...any mechanism > that may increase the body's need for vitamin E - these kids would be in a > different catagory than the normal person on the street without a > deficiency. Give a bolus of insulin to a non-diabetic, and you may kill > them. However insulin is life saving for those whose body can't make it. > Not to say vitamin E is like insulin, but in a way...I did tell my > pediatrician after one of ph's regressions off fish oil, that I felt > like it was in fact his " insulin " , and without it...his brain just fell > apart. > > See below for a commentary written about the Hopkins report. It may clarify > things. Regardless, a dose of 400 IU a day is benign for a child...but it > should be NATURAL, not synthetic. The label should read " alpha-d- tocophorol " > and NOT alpha-dl-tocophorol. Its the " dl " that tells you its synthetic, but > easy to miss this small differentiation. In addition, gamma tocophorol > should be used...and it comes in 200-300 mg gel caps. One alpha and one > gamma a day is a good safe dose...until we know more. But this is why it may > make sense to check vitamin E plasma levels first, since a documented > vitamin E deficiency may suggest the need for even higher doses. To give > you an idea, the recommended dose for vitamin E deficiency related > neuropathy, or nerve/brain damage (???which some of our apraxic kids may > just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY high dose, > and is indicated for Vit E deficiency syndromes, and something that should > be monitored closely by an MD or nutritionalist. But this dose is indicated > for certain disease states of deficiency, and essential to these particular > patients in order to treat their condition. For apraxia - we don't know if > there is a deficiency that can be identified by a blood test, or if patients > need higher than normal levels to fix neurological symptoms for some other > reason. All I know is that omega 3 worked wonders in helping my son > progress with aggressive ST and OT. Yet Vitamin E is causing/has caused a > resolution of ALL symptoms of global apraxia/hypotonia and SID. My son also > has been identified recently with a severe carnitine deficiency. This is not > routinely checked in apraxia. Maybe is should be. This may be uncommon - > however to have this undiagnosed and untreated can lead to sudden death. > Scary. We are getting all my kids checked for low carnitine, in case it is > some genetic red herring totally unrelated to apraxia. However since it is > commonly reported in children with autism, I suspect this may not be that > rare. One never knows until one really looks. Although Vitamin E is an > unlikely culprit, sometimes the most complicated problems still have a > simple answer. > > Unfortunately the sensationalism of headline news may scare people away from > potentially good treatments. Just like the fear of fish oil. I think it is > good to ask questions though, and not take the " unknown " at face value. So I > don't take your question the wrong way. It is actually an excellent > question, since it is so hard to sift through the literature and figure out > what is and isn't valid. It is also possible that what we are experiencing > with my boy is a fluke from some weird genetics specific to my son. But > since he sounds like the posterchild for global apraxia, I don't think this > will be an isolated observation, particularly in kids who respond to omega > supplements. Without my own relentless " why " - my son would still be > severely impaired. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 , There are alot of moms I know that have kids with various neuro type symptoms, that also have the same results with K supplementation. We use Life Extension brand one every other day. The cognitve cobweb clearing was huge. I never realized amount of change K would bring, it balanced out my sons mood, he would get very frustrated right before meals, sort of resembling a mild hypoglycemia, but never tested out. But it was exactly what he would be like as a toddler, more of an issue when he was between 2-3 if too much time went between meals. When further researching Vit K there is a very big connection between Vitamin K and pancreatic function, although my sons pancreatic function is fine, I did find the studies out there in regards to insulin/glucose loading and vitamin K status. Honestly this puts a whole new spin on chronic illness such a s diabetes and vitamin response. Relationship between acute insulin response and vitamin K intake in healthy young male volunteers.Sakamoto N, Nishiike T, Iguchi H, Sakamoto K. Department of Hygiene, Hyogo College of Medicine, Nisinomiya, Japan. naomasas@... To evaluate the effects of vitamin K (VK) on pancreatic function, especially on acute insulin response, 25 healthy young male volunteers were given an oral load of 75 g of glucose, and their mean daily VK intake was estimated by a one-week food check list. After excluding low (<20) and high (> or =25) body mass index (BMI) subjects, the remaining 16 participants were divided into three semi- equal groups according to VK intake. Blood VK status of the low VK intake group tended to be poorer than that of the high intake group (median of 5 samples: prothrombin time; 12.5 vs 12.2s and protein- induced VK absence-factor-II; 23 vs 15 mAU/ml), but fasting plasma glucose status was not markedly different between both groups: [plasma glucose (PG); 87 vs 86 mg/dl, immunoreactive insulin (IRI); 6.7 vs 5.3 microU/ml, HbA1c; 4.8 vs 4.9%]. However, at 30 min after glucose loading, PG of the low VK intake group tended to be higher than those of the high intake group (160 vs 145 mg/dl) and IRI was lower (36.1 vs 52.3 microU/ml). Insulinogenic index (incremental IRI/incremental PG, 0-30 min) of the low VK intake group was significantly lower than that of the high intake group (0.4 vs 0.9). These results suggested that VK may play an important role on the acute insulin response in glucose tolerance > > This is excellent. Thanks for sending. We are actually getting ADEK checked > with the next blood draw. I am worried about vit K since I suspect we will > find a low level and it is the one potential adverse effect of high dose vit > E - lower K and bleeding. I didn't know Vit K had any effects outside of > bleeding, so this really is good stuff. - Quote Link to comment Share on other sites More sharing options...
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