Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 , Thank you for your very detailed responce. I appreciate it! Just curious, is your son on any other supplements, other then the enzymes, specifically EFA's? Dawn in NJ > > I have a recent personal experience to share regarding food and > behavior. has been doing so well in kindergarten and with > his NACD program, knows about 100 sight words, doesn't qualify for > speech or OT, and has had excellent behavior reports from school -- > until this week. His teacher has said more than once that he is a > typical (boy) student, and that she would never have known about his > previous issues if I had not brought them to her attention. He even > got a special certificate for excellence the first week back from > Christmas break, because he transitioned back to school BETTER than > most! > > Because we do not have lab tests confirming food allergies, my > husband has often thought that an infraction here and there is > harmless, especially since we use digestive enzymes. It is, however, > a slippery slope. First, it was dinner out for pizza once a month, > this month we went out every weekend. I also let him eat whatever he > wanted at the class Valentine's Day party. At the same time, Girl > Scout cookies and Valentine's Day candy entered the house in a big > way. (I am a Brownie leader.) Some have dairy, some don't, but all > have ARTIFICIALS. At first, we both thought we might be getting away > with something, then we received a note from his teacher. Here is an > excerpt: > > " I am writing to let you know that over the past few weeks I have > noticed a significant change in 's behavior. Normally, I > would hardly ever need to speak to , but lately, I need to > speak with him up to 10 times a day. Some of the behavior I am > observing includes being very active, not sitting in his chair, and a > lack of following instructions. He truly seems unable to control > himself at times. I have observed kicking and jumping on > things (nap mats & backpacks.) " > > As described by his teacher in this note and the follow-up > conversation, he has turned into ADHD kid practically overnight! In > addition to what she described, we have noticed the following at home: > > --He is having increased difficulty paying attention during program > work. (e.g. After doing his new set of sight words for a whole > week, I checked to see how many he knew. Normally, he knows about 75% > + after one week. He knew 0%!) > > --His handwriting has been inconsistently terrible. Occasionally, he > can write a single word neatly, but mostly it's sloppy. Drawing > skills have been less detailed. > > --Lots of crying over nothing. > > --Uncooperative across the board. > > --Spitting at his sister. > > --Sour mood, even when he should be happy. (e.g. no veggies at > dinner, playing with favorite toys, I said " yes " to something like > watching TV) > > --Softer BM's and also touching his private areas occasionally. (The > latter is totally new.) > > During this time period, he has not been sick, changed sleep habits, > added or subtracted any supplements, or had any major life changes of > any kind. > > Unfortunately, because of the nature of the infractions, the > detective work is a bit more complicated than normal. It could be > the dairy infraction (always a favorite target here), but I have two > other possibilities as well. His enzymes work on dairy, but they do > not work on artificals, so given the sharp turn in his behavior that > could be the real culprit. Other than the cookies, eats a > 100% artifical-free diet with almost no MSG or HFCS (except the > occasional restaurant meal, which may be tainted with any of those > things.) > > Another possibility is that it could be a yeast problem due to the > sugar in the cookies. While dairy can feed yeast, none of the > infractions were a full-blown milk item like straight milk or yogurt. > > It could also be a little of all three. > > Either way, my husband is now on board with the no dairy, no > artificials components, and we were already on a restaurant ban due > to the naughtiness on our last visit. (Tyler in particular.) > > This is just one personal experience and not generally applicable. > However, it does point to the effect diet can have on behavior and > also to the difficult in nailing down the culprit, even when there > haven't been other major changes going on. > > For anyone considering dietary changes to improve their children's > skills or behavior, eliminating artifical colors, flavors, sweetners, > and preservatives should absolutely be the first step. It is by far > the easiest dietary intervention, and you may see complete success > without eliminating any typically-allergenic foods. Check out the > Feingold program website for a lot more informationon this topic. > (We eliminated artificals back when he was in preschool, and it took > us far, but not the whole way. We still needed to get rid of the > dairy.) Eliminating MSG and HFCS (high fructose corn syrup) should > also be strongly considered. > > > in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Re: touching his private areas occasionally That sounds like yeast. Re: writing difficulties. A friend of mine has an ASD son who really can't handle sugar. When he gets it he loses his drawing ability which is horrible considering he is particularly skilled at drawing. The particular epsisode I am recalling involved red hots so perhaps a dye is an issue for that boy as well. One thing I will say about the dairy: for some reason, whene ver I tested cheese, while it caused discomfort in me and mine, it did not seem to stir up the issues outright milk and ice cream or even yogurt did. Seems to me not all infractions carry equal weight if that helps your detective work. > > > > > > > > Dawn, > > > > > > > > You have a very bright and wonderful child. I wish you great > > > success in > > > > finding whatever she needs to help the world see the smart and > > > ingenius > > > > little girl you have always known her to be. > > > > > > > > For what it is worth, a lot of my reading seems to point to > > > metabolic > > > > and allergy as a factor in spotty and inconsistent performance. > > If > > > you > > > > need help looking or the list of docs I am considering talking > to > > > in > > > > this area to rule things in or out for my guy please feel free > to > > > email > > > > me on or offlist. > > > > > > > > Best Wishes! > > > > Liz > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Right now in the AM: --1 EPA and 1 EFA --children's probiotic --2 carnitine* --gummy multivitamin In the PM: --1 EPA and 1 EFA --1 carnitine* --1 CoQ10 Additionally: --2 TriEnza enzymes with every meal and snack. --epsom salts baths 2-3x/week --used to take a calcium supplement, now drinks fortified hemp milk and fortified orange juice every day *I'm stopping the carnitine for now for two reasons. One, I saw no obvious benefit over the last two months. Two, it might possibly feed yeast, which might possibly be a problem right now. I will continue the CoQ10, which I introduced at the same time because it works synergistically with carnitine, because it seems like a good idea based on my research, and I haven't found anything that suggests it feeds yeast. I was also planning on re-starting vitamin E, but I'm going to lay off any further changes until the behavior settles back down. Also considering additional vitamin C and am wondering if I can talk his regular pediatrician into prescribed the mB12 shots. At one point, we went quite high with the fish oil and vitamin E. We saw benefits at slightly higher doses, but at the highest dose he was hyper and repeated everything three times before you even had a chance to hear him. At highest levels of vitamin E, he got weird bruising. We added K to counteract that, but ultimately I felt the dose was too high. Vitamin E was the one vitamin that took some getting used to. My memory is vague, but I think it made him hyper and uncooperative when he first started. Fish oils were a breeze to introduce and increase. It was all good 'til we went too high. > > > > I have a recent personal experience to share regarding food and > > behavior. has been doing so well in kindergarten and with > > his NACD program, knows about 100 sight words, doesn't qualify for > > speech or OT, and has had excellent behavior reports from school - - > > until this week. His teacher has said more than once that he is a > > typical (boy) student, and that she would never have known about > his > > previous issues if I had not brought them to her attention. He > even > > got a special certificate for excellence the first week back from > > Christmas break, because he transitioned back to school BETTER than > > most! > > > > Because we do not have lab tests confirming food allergies, my > > husband has often thought that an infraction here and there is > > harmless, especially since we use digestive enzymes. It is, > however, > > a slippery slope. First, it was dinner out for pizza once a month, > > this month we went out every weekend. I also let him eat whatever > he > > wanted at the class Valentine's Day party. At the same time, Girl > > Scout cookies and Valentine's Day candy entered the house in a big > > way. (I am a Brownie leader.) Some have dairy, some don't, but > all > > have ARTIFICIALS. At first, we both thought we might be getting > away > > with something, then we received a note from his teacher. Here is > an > > excerpt: > > > > " I am writing to let you know that over the past few weeks I have > > noticed a significant change in 's behavior. Normally, I > > would hardly ever need to speak to , but lately, I need to > > speak with him up to 10 times a day. Some of the behavior I am > > observing includes being very active, not sitting in his chair, and > a > > lack of following instructions. He truly seems unable to control > > himself at times. I have observed kicking and jumping on > > things (nap mats & backpacks.) " > > > > As described by his teacher in this note and the follow-up > > conversation, he has turned into ADHD kid practically overnight! > In > > addition to what she described, we have noticed the following at > home: > > > > --He is having increased difficulty paying attention during program > > work. (e.g. After doing his new set of sight words for a whole > > week, I checked to see how many he knew. Normally, he knows about > 75% > > + after one week. He knew 0%!) > > > > --His handwriting has been inconsistently terrible. Occasionally, > he > > can write a single word neatly, but mostly it's sloppy. Drawing > > skills have been less detailed. > > > > --Lots of crying over nothing. > > > > --Uncooperative across the board. > > > > --Spitting at his sister. > > > > --Sour mood, even when he should be happy. (e.g. no veggies at > > dinner, playing with favorite toys, I said " yes " to something like > > watching TV) > > > > --Softer BM's and also touching his private areas occasionally. > (The > > latter is totally new.) > > > > During this time period, he has not been sick, changed sleep > habits, > > added or subtracted any supplements, or had any major life changes > of > > any kind. > > > > Unfortunately, because of the nature of the infractions, the > > detective work is a bit more complicated than normal. It could be > > the dairy infraction (always a favorite target here), but I have > two > > other possibilities as well. His enzymes work on dairy, but they > do > > not work on artificals, so given the sharp turn in his behavior > that > > could be the real culprit. Other than the cookies, eats a > > 100% artifical-free diet with almost no MSG or HFCS (except the > > occasional restaurant meal, which may be tainted with any of those > > things.) > > > > Another possibility is that it could be a yeast problem due to the > > sugar in the cookies. While dairy can feed yeast, none of the > > infractions were a full-blown milk item like straight milk or > yogurt. > > > > It could also be a little of all three. > > > > Either way, my husband is now on board with the no dairy, no > > artificials components, and we were already on a restaurant ban due > > to the naughtiness on our last visit. (Tyler in particular.) > > > > This is just one personal experience and not generally applicable. > > However, it does point to the effect diet can have on behavior and > > also to the difficult in nailing down the culprit, even when there > > haven't been other major changes going on. > > > > For anyone considering dietary changes to improve their children's > > skills or behavior, eliminating artifical colors, flavors, > sweetners, > > and preservatives should absolutely be the first step. It is by > far > > the easiest dietary intervention, and you may see complete success > > without eliminating any typically-allergenic foods. Check out the > > Feingold program website for a lot more informationon this topic. > > (We eliminated artificals back when he was in preschool, and it > took > > us far, but not the whole way. We still needed to get rid of the > > dairy.) Eliminating MSG and HFCS (high fructose corn syrup) should > > also be strongly considered. > > > > > > in NJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Why would carnitine feed yeast? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Honestly, I have no idea. My sister reads the " Enzymes and Autism " board every day, where yeast is always a big deal, and Dana (of www.danasview.net) recently posted about that. Her posts are concise, so there was no detail given. I plan to try to research this more, but that Dana KNOWS yeast. (I used to read that board, too.) That said, if it was doing anything for us I would continue and just fight yeast more. Since it's neutral, I dumped it for now. In general, carnitine doesn't seem to have the big " wow " effect that fish oil, vitamin E, etc. have, but that doesn't mean its not useful for some. > > Why would carnitine feed yeast? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 L-carnitine helped my son's nasal congestion - I swithced to n-acetyl- carnitine and we some improvements in his language. > > > > Why would carnitine feed yeast? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 For those that didn't do the blood testing yet through their child's pediatrician -please do not supplement with carnotine at all until you do. If your child tests low in carnitine (not carnosine) then he or she will have to be on a prescription dosage the rest of his or her life. This is not to scare anyone but important information. The following email will explain more. (And note to Liz -again please post credible links when you make what called little comments like " carnotine feeds yeast " -if you can find any.) ~~~~~~~~~~~~~~~important info on carnotine archive Re: Carnitine??? Hi Trish, I hope I can help! Many people in this group (including me) supplemented their speech impaired child with either or both carn-aware ( http://www.carn-aware.com ) and/or carnosine. Carn-aware is a product name for a supplement that contains mainly carnosine with other ingredients - zinc and ('s gonna love this) " vitamin E " . Carn-aware did work for many of the children as far as us seeing some type of surge -and it was found successful in some clinical trials -here's is some history on it http://www.cherab.org/information/dietaryeffects/carnosine.html http://www.speechville.com/alternative-therapy/carnosine.html Some of us (including me) also used the carnosine because it's less expensive then the carn-aware because you can purchase it in pure powder form. I used to mix the carn-aware powder (from capsules) and carnosine powder together too. Tanner's no longer on either carnaware or carnosine -but it did appear to be one of the things that helped along the way as you can read in the links above. For carnotine you 'do' want to get the testing done first to see if there is a deficiency because: From a direct quote from pediatrician/parent member here Dr. from an email to me (not to scare anyone...but) " No harm in supplements (ie very safe - if you give to much one starts to smell fishy - ironically) and yes you could just start supplementing without any health concerns. But honestly - a carnitine deficiency is something you would want to identify first - before supplementing. The results from bloodwork will not be helpful otherwise once supplementing - since it could be normal. One doesn't just have a carnitine deficiency for no reason. This is something that should be worked up - aggressively, medically. So I would seriously consider getting him checked prior to supplements " and from the same email another clip: " The benefits of carnitine (like those on the heart) - may not be obvious (in speech and muscle tone -the sort of thing we are looking for) and you wouldn't know you were making a difference. The carnitine deficiency that ph had could have led to serious cardiac complications over the next few years if not picked up. " To repeat the points raised -a carnitine deficiency is something you want to know about because it could be serious...and once you start supplementing it may be hard to know if there was a carnitine deficiency prior. And...for a less serious reason -too much carnitine causes one to smell " fishy " So I'd say no to just supplementing this one prior to blood work! The name may sound almost the same as carnosine -but they are different. " L-Carnitine L-Carnitine is an amino acid manufactured in your liver from the amino acids lysine & methionine. It is found in muscle & organ meats in the human diet. Vegetarians are susceptible to deficiencies of all 3 of the above amino acids. L-Carnitine plays an important role in converting fat into energy. It transfers fatty acids in the cell to the mitochondria (the energy engine) which uses the fatty acids as fuel to generate energy. It assists in regulating fat metabolism in your heart & skeletal muscles. A lack of carnitine can result in buildup of fat & add to problems of obesity. The first sign of carnitine deficiency is hypoglycemia, which, if unchecked can lead to progressive muscular weakness, muscle disorders, heart tissue damage, increased triglycerides, a breakdown of muscle tissue & irregular muscle function. L-Carnitine can be helpful for: Ischemic heart disease. Congestive heart failure. Increased triglycerides. Liver disease. Those on dialysis. Blood sugar stabilization. Increasing energy. Muscle weakness & disorders. Endurance training. Body fat reduction. Vegetarianism. L-Carnosine is a product of the amino acid histidine & has free radical scavenging properties. L-Histidine L-histidine is an essential amino acid. Most of our histidine must come from our diets, but small amounts can be synthesized from glutamic acid & carnosine. Histidine has anti-inflammatory properties. It is the only amino acid found to be consistently low in the blood of those with rheumatoid arthritis. It is also low in the lubricating fluid in the joints. Whiskey significantly decreases histidine levels. Rheumatoid arthritis patients should avoid alcohol. Histidine can convert to histamine, which is a major neurotransmitter in your brain & throughout parts of your nervous system. However, histidine intake does not always increase brain histamine, Low brain histamine levels are associated with hyperactivity, mania, paranoia, hallucinations, & abnormal thoughts. Many brain functions of histamine are poorly understood but it is thought to participate in the secretion of 2 hormones, (prolactin & antidiuretic). It is thought to aid temperature regulation & be involved in the control of automatic nerve response in the central nervous system. Vitamin E deficiency will cause the depletion of histidine from muscles. Histidine is involved with the regulation of zinc levels in your body. If zinc is excessive it will lower histidine; if histidine is excessive it will decrease zinc levels. But appropriate levels of histidine enhance zinc levels. Histidine: Enhances wound healing, Is essential for tissue growth & repair. Is helpful with rheumatoid arthritis. Is important for red blood cell health. Deficiency will cause decreased hemoglobin & hematocrit, ultimately leading to anemia. Helps store glucose in your liver. " http://www.findhealer.com/glossary/L.php3 As far as who does the testing....I have a " normal " ped for my kids from Florida and all I did was supply him with documentation from Dr. and also shared her background. Some of you may not be aware that is a respected researcher: R. , MD Attending Physician Director of Fellowship Research Pediatric Emergency Medicine Department of Emergency Medicine Children's Hospital & Research Center at Oakland 747 52nd Street Oakland, CA 94609 " R. , MD, is a board certified pediatric emergency medicine physician and the director of fellowship research for the pediatric emergency medicine fellowship. Her research interests focus translational research in sickle cell disease, pulmonary hypertension and asthma. Dr. published the first investigation to evaluate a potential new therapy for the treatment of secondary pulmonary hypertension in sickle cell disease, a study that made the " Top ten publications list in pulmonary vascular disease " in Chest this year. Dr. has been a guest speaker nationally and internationally, with most recent presentations given at the European Respiratory Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary complications of hemoglobinopathies with a focus on sickle cell disease " ), and at the Nitric Oxide Gordon Research Conference in II Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and pulmonary hypertension " ). Dr. is particularly interested in the role of low arginine and nitric oxide bioavailability in sickle cell disease as well as asthma, and novel treatments for pulmonary hypertension that target this mechanism. " http://www.chori.org/Principal_Investigators/_/morris_overview.html Tanner's pediatrician found it all very interesting and was open to writing the prescription for the blood testing even without knowing anything about what we are seeing. It would be the most cost effective, easy way to get the process started. For me, if my ped did " laugh " at me or found this whole thing to be just nuts after reading 's suggestions, results with her own child, and background...I'd switch pediatricians. Who needs an MD that's so in the box they may miss any other new information as well. And as far as other professionals doing the testing -if you have the money to go the DAN route to start and make sure it's someone with a medical background in pediatric neurodevelopmental medicine or at least pediatric medicine (you can be a Dan " doc " and not even be an MD FYI) that's always an option. As it's been posted prior we are charting unknown territory and as far as I'm concerned the main people that know the most about any of this are already part of this group...and leading the way on how vitamin E may contribute to the fish oil with knowledge about carnitine and more... is one member here we are all fortunate to have -Dr. ! also suggested here and in an email to me that if a child does need to supplement with carnitine -that you don't just buy a health food brand because " Carnitine. You don't want to just buy it at the health food store. The forms they sell over the counter can actually be harmful due to additives and the way it is made. L- Carnitine that is definitely safe is only available in prescription form " and from an archive message from : " Its really because you never know what you are getting...while carnitor is regulated. Plus it gets covered by insurance...an added benefit, as all these supplements start to add up and are fairly costly. My research background is in arginine metabolism, and I am involved in several arginine clinical trials for diseases like sickle cell disease and thalassemia. I never tell people to buy off the shelf because you REALLY don't know what you are buying. None of the over the counter supplements are regulated. There are fillers etc that may have ingredients that are not necessily OK. So I buy my arginine supplements for trials through distributers that can demonstrated purity to > 99.99%. But it is really important to get a carnitine level prior to supplementing. Not that carnitine is harmful, even if you have normal levels...but if your child has a carnitine deficiency...it should be worked up further. - " You still may be confused -but you have to feel a bit more informed...right? ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 I was asking a question as I found no links stating that. > > For those that didn't do the blood testing yet through their child's > pediatrician -please do not supplement with carnotine at all until > you do. If your child tests low in carnitine (not carnosine) then he > or she will have to be on a prescription dosage the rest of his or > her life. This is not to scare anyone but important information. > The following email will explain more. > > (And note to Liz -again please post credible links when you make what > called little comments like " carnotine feeds yeast " -if you can > find any.) > > ~~~~~~~~~~~~~~~important info on carnotine archive > > Re: Carnitine??? > > > Hi Trish, I hope I can help! > > Many people in this group (including me) supplemented their speech > impaired child with either or both carn-aware ( http://www.carn- aware.com ) > and/or carnosine. Carn-aware is a product name for a > supplement that contains mainly carnosine with other ingredients - > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > work for many of the children as far as us seeing some type of > surge -and it was found successful in some clinical trials -here's > is some history on it > http://www.cherab.org/information/dietaryeffects/carnosine.html > http://www.speechville.com/alternative-therapy/carnosine.html > > Some of us (including me) also used the carnosine because it's less > expensive then the carn-aware because you can purchase it in pure > powder form. I used to mix the carn-aware powder (from capsules) and > carnosine > powder together too. Tanner's no longer on either carnaware or > carnosine -but it did appear to be one of the things that helped > along the way as you can read in the links above. > > For carnotine you 'do' want to get the testing done first to see if > there is a deficiency because: > From a direct quote from pediatrician/parent member here Dr. > from an email to me (not to scare anyone...but) > > " No harm in supplements (ie very safe - if you give to much one > starts to smell fishy - ironically) and yes you could just start > supplementing without any health concerns. But honestly - a > carnitine deficiency is something you would want to identify first - > before supplementing. The results from bloodwork will not be > helpful otherwise once supplementing - since it could be normal. > One doesn't just have a carnitine deficiency for no reason. This is > something that should be worked up - aggressively, medically. So I > would seriously consider getting him checked prior to supplements " > and from the same email another clip: > " The benefits of carnitine (like those on the heart) - may not be > obvious (in > speech and muscle tone -the sort of thing we are looking for) and you > wouldn't > know you were making a difference. The carnitine deficiency that > ph had > could have led to serious cardiac complications over the next few > years if not > picked up. " > > To repeat the points raised -a carnitine deficiency is > something you want to know about because it could be serious...and > once you start supplementing it may be hard to know if there was a > carnitine deficiency prior. And...for a less serious > reason -too much carnitine causes one to smell " fishy " So I'd say > no to just supplementing this one prior to blood work! > The name may sound almost the > same as carnosine -but they are different. > " L-Carnitine > L-Carnitine is an amino acid manufactured in your liver from the > amino acids > lysine & methionine. It is found in muscle & organ meats in the human > diet. > Vegetarians are susceptible to deficiencies of all 3 of the above > amino acids. > L-Carnitine plays an important role in converting fat into energy. It > transfers > fatty acids in the cell to the mitochondria (the energy engine) which > uses the > fatty acids as fuel to generate energy. It assists in regulating fat > metabolism > in your heart & skeletal muscles. > A lack of carnitine can result in buildup of fat & add to problems of > obesity. > > The first sign of carnitine deficiency is hypoglycemia, which, if > unchecked can > lead to progressive muscular weakness, muscle disorders, heart tissue > damage, > increased triglycerides, a breakdown of muscle tissue & irregular > muscle > function. > > L-Carnitine can be helpful for: > > Ischemic heart disease. > Congestive heart failure. > Increased triglycerides. > Liver disease. > Those on dialysis. > Blood sugar stabilization. > Increasing energy. > Muscle weakness & disorders. > Endurance training. > Body fat reduction. > Vegetarianism. > > L-Carnosine > is a product of the amino acid histidine & has free radical scavenging > properties. > > L-Histidine > L-histidine is an essential amino acid. Most of our histidine must > come from our > diets, but small amounts can be synthesized from glutamic acid & > carnosine. > Histidine has anti-inflammatory properties. It is the only amino acid > found to > be consistently low in the blood of those with rheumatoid arthritis. > It is also > low in the lubricating fluid in the joints. Whiskey significantly > decreases > histidine levels. Rheumatoid arthritis patients should avoid alcohol. > > Histidine can convert to histamine, which is a major neurotransmitter > in your > brain & throughout parts of your nervous system. However, histidine > intake does > not always increase brain histamine, Low brain histamine levels are > associated > with hyperactivity, mania, paranoia, hallucinations, & abnormal > thoughts. Many > brain functions of histamine are poorly understood but it is thought > to > participate in the secretion of 2 hormones, (prolactin & > antidiuretic). It is > thought to aid temperature regulation & be involved in the control of > automatic > nerve response in the central nervous system. > > Vitamin E deficiency will cause the depletion of histidine from > muscles. > Histidine is involved with the regulation of zinc levels in your > body. If zinc > is excessive it will lower histidine; if histidine is excessive it > will decrease > zinc levels. But appropriate levels of histidine enhance zinc levels. > > Histidine: > > Enhances wound healing, > Is essential for tissue growth & repair. > Is helpful with rheumatoid arthritis. > Is important for red blood cell health. Deficiency will cause > decreased > hemoglobin & hematocrit, ultimately leading to anemia. > Helps store glucose in your liver. " > http://www.findhealer.com/glossary/L.php3 > > As far as who does the testing....I have a " normal " ped for my kids > from Florida and all I did was supply him with documentation from > Dr. and also shared her background. > > Some of you may not be aware that is a respected researcher: > > R. , MD > Attending Physician > Director of Fellowship Research > Pediatric Emergency Medicine > Department of Emergency Medicine > Children's Hospital & Research Center at Oakland > 747 52nd Street > Oakland, CA 94609 > > " R. , MD, is a board certified pediatric emergency > medicine physician and the director of fellowship research for the > pediatric emergency medicine fellowship. Her research interests > focus translational research in sickle cell disease, pulmonary > hypertension and asthma. Dr. published the first > investigation to evaluate a potential new therapy for the treatment > of secondary pulmonary hypertension in sickle cell disease, a study > that made the " Top ten publications list in pulmonary vascular > disease " in Chest this year. > > Dr. has been a guest speaker nationally and internationally, > with most recent presentations given at the European Respiratory > Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary > complications of hemoglobinopathies with a focus on sickle cell > disease " ), and at the Nitric Oxide Gordon Research Conference in II > Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and > pulmonary hypertension " ). Dr. is particularly interested in > the role of low arginine and nitric oxide bioavailability in sickle > cell disease as well as asthma, and novel treatments for pulmonary > hypertension that target this mechanism. " > http://www.chori.org/Principal_Investigators/_/morris_ove rview.html > > Tanner's pediatrician found it all very interesting and was open to > writing the prescription for the blood testing even without knowing > anything about what we are seeing. It would be the most cost > effective, easy way to get the process started. For me, if my ped > did " laugh " at me or found this whole thing to be just nuts after > reading 's suggestions, results with her own child, and > background...I'd switch pediatricians. Who needs an MD that's so > in the box they may miss any other new information as well. And as > far as other professionals doing the testing -if you have the money > to go the DAN route to start and make sure it's someone with a > medical background in pediatric neurodevelopmental medicine or at > least pediatric medicine (you can be a Dan " doc " and not even be an > MD FYI) that's always an option. > > As it's been posted prior we are charting unknown territory and as > far as I'm concerned the main people that know the most about any of > this are already part of this group...and leading the way on how > vitamin E may contribute to the fish oil with knowledge about > carnitine and more... is one member here we are all fortunate to > have -Dr. ! > > also suggested here and in an email to me that if a child > does need to supplement with carnitine -that you don't just buy a > health food brand because " Carnitine. You don't want to just buy it > at the health food store. The forms they sell over the counter can > actually be harmful due to additives and the way it is made. L- > Carnitine that is definitely safe is only available in prescription > form " > > and from an archive message from : > > " Its really because you never know what you are getting...while > carnitor is regulated. Plus it gets covered by insurance...an added > benefit, as all these supplements start to add up and are fairly > costly. > > My research background is in arginine metabolism, and I am involved > in several arginine clinical trials for diseases like sickle cell > disease and thalassemia. I never tell people to buy off the shelf > because you REALLY don't know what you are buying. None of the over > the counter supplements are regulated. There are fillers etc that > may have ingredients that are not necessily OK. So I buy my > arginine supplements for trials through distributers that can > demonstrated purity to > 99.99%. > > But it is really important to get a carnitine level prior to > supplementing. Not that carnitine is harmful, even if you have > normal levels...but if your child has a carnitine deficiency...it > should be worked up further. - " > > You still may be confused -but you have to feel a bit more > informed...right? > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 We also feed Charlie 2.5 years, a diet much like yours. We do give him pizza occassionally, about 2x per month. On valentines day, he had school food and treats and pizza. Told me 1/2 hour after eating, that his tummy hurt. It is nice that he can tell me these things. It is amazing to see the difference in our kids with diet. I do the best I can, which is significantly better than most people could or would. I am proud of that. Thanks for sharing. Colleen Mother of Charlie 2.5 years [ ] WAS: yet another MR NOW: Food and behavior story (sorry -- long!) I have a recent personal experience to share regarding food and behavior. has been doing so well in kindergarten and with his NACD program, knows about 100 sight words, doesn't qualify for speech or OT, and has had excellent behavior reports from school -- until this week. His teacher has said more than once that he is a typical (boy) student, and that she would never have known about his previous issues if I had not brought them to her attention. He even got a special certificate for excellence the first week back from Christmas break, because he transitioned back to school BETTER than most! Because we do not have lab tests confirming food allergies, my husband has often thought that an infraction here and there is harmless, especially since we use digestive enzymes. It is, however, a slippery slope. First, it was dinner out for pizza once a month, this month we went out every weekend. I also let him eat whatever he wanted at the class Valentine's Day party. At the same time, Girl Scout cookies and Valentine's Day candy entered the house in a big way. (I am a Brownie leader.) Some have dairy, some don't, but all have ARTIFICIALS. At first, we both thought we might be getting away with something, then we received a note from his teacher. Here is an excerpt: " I am writing to let you know that over the past few weeks I have noticed a significant change in 's behavior. Normally, I would hardly ever need to speak to , but lately, I need to speak with him up to 10 times a day. Some of the behavior I am observing includes being very active, not sitting in his chair, and a lack of following instructions. He truly seems unable to control himself at times. I have observed kicking and jumping on things (nap mats & backpacks.) " As described by his teacher in this note and the follow-up conversation, he has turned into ADHD kid practically overnight! In addition to what she described, we have noticed the following at home: --He is having increased difficulty paying attention during program work. (e.g. After doing his new set of sight words for a whole week, I checked to see how many he knew. Normally, he knows about 75% + after one week. He knew 0%!) --His handwriting has been inconsistently terrible. Occasionally, he can write a single word neatly, but mostly it's sloppy. Drawing skills have been less detailed. --Lots of crying over nothing. --Uncooperative across the board. --Spitting at his sister. --Sour mood, even when he should be happy. (e.g. no veggies at dinner, playing with favorite toys, I said " yes " to something like watching TV) --Softer BM's and also touching his private areas occasionally. (The latter is totally new.) During this time period, he has not been sick, changed sleep habits, added or subtracted any supplements, or had any major life changes of any kind. Unfortunately, because of the nature of the infractions, the detective work is a bit more complicated than normal. It could be the dairy infraction (always a favorite target here), but I have two other possibilities as well. His enzymes work on dairy, but they do not work on artificals, so given the sharp turn in his behavior that could be the real culprit. Other than the cookies, eats a 100% artifical-free diet with almost no MSG or HFCS (except the occasional restaurant meal, which may be tainted with any of those things.) Another possibility is that it could be a yeast problem due to the sugar in the cookies. While dairy can feed yeast, none of the infractions were a full-blown milk item like straight milk or yogurt. It could also be a little of all three. Either way, my husband is now on board with the no dairy, no artificials components, and we were already on a restaurant ban due to the naughtiness on our last visit. (Tyler in particular.) This is just one personal experience and not generally applicable. However, it does point to the effect diet can have on behavior and also to the difficult in nailing down the culprit, even when there haven't been other major changes going on. For anyone considering dietary changes to improve their children's skills or behavior, eliminating artifical colors, flavors, sweetners, and preservatives should absolutely be the first step. It is by far the easiest dietary intervention, and you may see complete success without eliminating any typically-allergenic foods. Check out the Feingold program website for a lot more informationon this topic. (We eliminated artificals back when he was in preschool, and it took us far, but not the whole way. We still needed to get rid of the dairy.) Eliminating MSG and HFCS (high fructose corn syrup) should also be strongly considered. in NJ > > > > > > Dawn, > > > > > > You have a very bright and wonderful child. I wish you great > > success in > > > finding whatever she needs to help the world see the smart and > > ingenius > > > little girl you have always known her to be. > > > > > > For what it is worth, a lot of my reading seems to point to > > metabolic > > > and allergy as a factor in spotty and inconsistent performance. > If > > you > > > need help looking or the list of docs I am considering talking to > > in > > > this area to rule things in or out for my guy please feel free to > > email > > > me on or offlist. > > > > > > Best Wishes! > > > Liz > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Liz did not make that comment, and already provided sources for it. > > For those that didn't do the blood testing yet through their child's > pediatrician -please do not supplement with carnotine at all until > you do. If your child tests low in carnitine (not carnosine) then he > or she will have to be on a prescription dosage the rest of his or > her life. This is not to scare anyone but important information. > The following email will explain more. > > (And note to Liz -again please post credible links when you make what > called little comments like " carnotine feeds yeast " -if you can > find any.) > > ~~~~~~~~~~~~~~~important info on carnotine archive > > Re: Carnitine??? > > > Hi Trish, I hope I can help! > > Many people in this group (including me) supplemented their speech > impaired child with either or both carn-aware ( http://www.carn- aware.com ) > and/or carnosine. Carn-aware is a product name for a > supplement that contains mainly carnosine with other ingredients - > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > work for many of the children as far as us seeing some type of > surge -and it was found successful in some clinical trials -here's > is some history on it > http://www.cherab.org/information/dietaryeffects/carnosine.html > http://www.speechville.com/alternative-therapy/carnosine.html > > Some of us (including me) also used the carnosine because it's less > expensive then the carn-aware because you can purchase it in pure > powder form. I used to mix the carn-aware powder (from capsules) and > carnosine > powder together too. Tanner's no longer on either carnaware or > carnosine -but it did appear to be one of the things that helped > along the way as you can read in the links above. > > For carnotine you 'do' want to get the testing done first to see if > there is a deficiency because: > From a direct quote from pediatrician/parent member here Dr. > from an email to me (not to scare anyone...but) > > " No harm in supplements (ie very safe - if you give to much one > starts to smell fishy - ironically) and yes you could just start > supplementing without any health concerns. But honestly - a > carnitine deficiency is something you would want to identify first - > before supplementing. The results from bloodwork will not be > helpful otherwise once supplementing - since it could be normal. > One doesn't just have a carnitine deficiency for no reason. This is > something that should be worked up - aggressively, medically. So I > would seriously consider getting him checked prior to supplements " > and from the same email another clip: > " The benefits of carnitine (like those on the heart) - may not be > obvious (in > speech and muscle tone -the sort of thing we are looking for) and you > wouldn't > know you were making a difference. The carnitine deficiency that > ph had > could have led to serious cardiac complications over the next few > years if not > picked up. " > > To repeat the points raised -a carnitine deficiency is > something you want to know about because it could be serious...and > once you start supplementing it may be hard to know if there was a > carnitine deficiency prior. And...for a less serious > reason -too much carnitine causes one to smell " fishy " So I'd say > no to just supplementing this one prior to blood work! > The name may sound almost the > same as carnosine -but they are different. > " L-Carnitine > L-Carnitine is an amino acid manufactured in your liver from the > amino acids > lysine & methionine. It is found in muscle & organ meats in the human > diet. > Vegetarians are susceptible to deficiencies of all 3 of the above > amino acids. > L-Carnitine plays an important role in converting fat into energy. It > transfers > fatty acids in the cell to the mitochondria (the energy engine) which > uses the > fatty acids as fuel to generate energy. It assists in regulating fat > metabolism > in your heart & skeletal muscles. > A lack of carnitine can result in buildup of fat & add to problems of > obesity. > > The first sign of carnitine deficiency is hypoglycemia, which, if > unchecked can > lead to progressive muscular weakness, muscle disorders, heart tissue > damage, > increased triglycerides, a breakdown of muscle tissue & irregular > muscle > function. > > L-Carnitine can be helpful for: > > Ischemic heart disease. > Congestive heart failure. > Increased triglycerides. > Liver disease. > Those on dialysis. > Blood sugar stabilization. > Increasing energy. > Muscle weakness & disorders. > Endurance training. > Body fat reduction. > Vegetarianism. > > L-Carnosine > is a product of the amino acid histidine & has free radical scavenging > properties. > > L-Histidine > L-histidine is an essential amino acid. Most of our histidine must > come from our > diets, but small amounts can be synthesized from glutamic acid & > carnosine. > Histidine has anti-inflammatory properties. It is the only amino acid > found to > be consistently low in the blood of those with rheumatoid arthritis. > It is also > low in the lubricating fluid in the joints. Whiskey significantly > decreases > histidine levels. Rheumatoid arthritis patients should avoid alcohol. > > Histidine can convert to histamine, which is a major neurotransmitter > in your > brain & throughout parts of your nervous system. However, histidine > intake does > not always increase brain histamine, Low brain histamine levels are > associated > with hyperactivity, mania, paranoia, hallucinations, & abnormal > thoughts. Many > brain functions of histamine are poorly understood but it is thought > to > participate in the secretion of 2 hormones, (prolactin & > antidiuretic). It is > thought to aid temperature regulation & be involved in the control of > automatic > nerve response in the central nervous system. > > Vitamin E deficiency will cause the depletion of histidine from > muscles. > Histidine is involved with the regulation of zinc levels in your > body. If zinc > is excessive it will lower histidine; if histidine is excessive it > will decrease > zinc levels. But appropriate levels of histidine enhance zinc levels. > > Histidine: > > Enhances wound healing, > Is essential for tissue growth & repair. > Is helpful with rheumatoid arthritis. > Is important for red blood cell health. Deficiency will cause > decreased > hemoglobin & hematocrit, ultimately leading to anemia. > Helps store glucose in your liver. " > http://www.findhealer.com/glossary/L.php3 > > As far as who does the testing....I have a " normal " ped for my kids > from Florida and all I did was supply him with documentation from > Dr. and also shared her background. > > Some of you may not be aware that is a respected researcher: > > R. , MD > Attending Physician > Director of Fellowship Research > Pediatric Emergency Medicine > Department of Emergency Medicine > Children's Hospital & Research Center at Oakland > 747 52nd Street > Oakland, CA 94609 > > " R. , MD, is a board certified pediatric emergency > medicine physician and the director of fellowship research for the > pediatric emergency medicine fellowship. Her research interests > focus translational research in sickle cell disease, pulmonary > hypertension and asthma. Dr. published the first > investigation to evaluate a potential new therapy for the treatment > of secondary pulmonary hypertension in sickle cell disease, a study > that made the " Top ten publications list in pulmonary vascular > disease " in Chest this year. > > Dr. has been a guest speaker nationally and internationally, > with most recent presentations given at the European Respiratory > Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary > complications of hemoglobinopathies with a focus on sickle cell > disease " ), and at the Nitric Oxide Gordon Research Conference in II > Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and > pulmonary hypertension " ). Dr. is particularly interested in > the role of low arginine and nitric oxide bioavailability in sickle > cell disease as well as asthma, and novel treatments for pulmonary > hypertension that target this mechanism. " > http://www.chori.org/Principal_Investigators/_/morris_ov erview.html > > Tanner's pediatrician found it all very interesting and was open to > writing the prescription for the blood testing even without knowing > anything about what we are seeing. It would be the most cost > effective, easy way to get the process started. For me, if my ped > did " laugh " at me or found this whole thing to be just nuts after > reading 's suggestions, results with her own child, and > background...I'd switch pediatricians. Who needs an MD that's so > in the box they may miss any other new information as well. And as > far as other professionals doing the testing -if you have the money > to go the DAN route to start and make sure it's someone with a > medical background in pediatric neurodevelopmental medicine or at > least pediatric medicine (you can be a Dan " doc " and not even be an > MD FYI) that's always an option. > > As it's been posted prior we are charting unknown territory and as > far as I'm concerned the main people that know the most about any of > this are already part of this group...and leading the way on how > vitamin E may contribute to the fish oil with knowledge about > carnitine and more... is one member here we are all fortunate to > have -Dr. ! > > also suggested here and in an email to me that if a child > does need to supplement with carnitine -that you don't just buy a > health food brand because " Carnitine. You don't want to just buy it > at the health food store. The forms they sell over the counter can > actually be harmful due to additives and the way it is made. L- > Carnitine that is definitely safe is only available in prescription > form " > > and from an archive message from : > > " Its really because you never know what you are getting...while > carnitor is regulated. Plus it gets covered by insurance...an added > benefit, as all these supplements start to add up and are fairly > costly. > > My research background is in arginine metabolism, and I am involved > in several arginine clinical trials for diseases like sickle cell > disease and thalassemia. I never tell people to buy off the shelf > because you REALLY don't know what you are buying. None of the over > the counter supplements are regulated. There are fillers etc that > may have ingredients that are not necessily OK. So I buy my > arginine supplements for trials through distributers that can > demonstrated purity to > 99.99%. > > But it is really important to get a carnitine level prior to > supplementing. Not that carnitine is harmful, even if you have > normal levels...but if your child has a carnitine deficiency...it > should be worked up further. - " > > You still may be confused -but you have to feel a bit more > informed...right? > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 The Bock book recommends the one you are using now. Is it still over- the-counter or does it require a prescription? What dose do you use? And L-carnitine helped nasal congestion? That certainly can't be related to tone -- unless he has a very muscular nose. Any theory as to why? in NJ > > L-carnitine helped my son's nasal congestion - I swithced to n- acetyl- > carnitine and we some improvements in his language. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Give Liz a break -- she didn't post that, I did. Dana of www.danasview.net recently mentioned this on the Enzymes and Autism board. She did not cite a study, as she is usually speaking from her vast personal experience, but when I find an additional, more scientific source, I will post. That is the first and only time I have heard that. in NJ > > For those that didn't do the blood testing yet through their child's > pediatrician -please do not supplement with carnotine at all until > you do. If your child tests low in carnitine (not carnosine) then he > or she will have to be on a prescription dosage the rest of his or > her life. This is not to scare anyone but important information. > The following email will explain more. > > (And note to Liz -again please post credible links when you make what > called little comments like " carnotine feeds yeast " -if you can > find any.) > > ~~~~~~~~~~~~~~~important info on carnotine archive > > Re: Carnitine??? > > > Hi Trish, I hope I can help! > > Many people in this group (including me) supplemented their speech > impaired child with either or both carn-aware ( http://www.carn- aware.com ) > and/or carnosine. Carn-aware is a product name for a > supplement that contains mainly carnosine with other ingredients - > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > work for many of the children as far as us seeing some type of > surge -and it was found successful in some clinical trials -here's > is some history on it > http://www.cherab.org/information/dietaryeffects/carnosine.html > http://www.speechville.com/alternative-therapy/carnosine.html > > Some of us (including me) also used the carnosine because it's less > expensive then the carn-aware because you can purchase it in pure > powder form. I used to mix the carn-aware powder (from capsules) and > carnosine > powder together too. Tanner's no longer on either carnaware or > carnosine -but it did appear to be one of the things that helped > along the way as you can read in the links above. > > For carnotine you 'do' want to get the testing done first to see if > there is a deficiency because: > From a direct quote from pediatrician/parent member here Dr. > from an email to me (not to scare anyone...but) > > " No harm in supplements (ie very safe - if you give to much one > starts to smell fishy - ironically) and yes you could just start > supplementing without any health concerns. But honestly - a > carnitine deficiency is something you would want to identify first - > before supplementing. The results from bloodwork will not be > helpful otherwise once supplementing - since it could be normal. > One doesn't just have a carnitine deficiency for no reason. This is > something that should be worked up - aggressively, medically. So I > would seriously consider getting him checked prior to supplements " > and from the same email another clip: > " The benefits of carnitine (like those on the heart) - may not be > obvious (in > speech and muscle tone -the sort of thing we are looking for) and you > wouldn't > know you were making a difference. The carnitine deficiency that > ph had > could have led to serious cardiac complications over the next few > years if not > picked up. " > > To repeat the points raised -a carnitine deficiency is > something you want to know about because it could be serious...and > once you start supplementing it may be hard to know if there was a > carnitine deficiency prior. And...for a less serious > reason -too much carnitine causes one to smell " fishy " So I'd say > no to just supplementing this one prior to blood work! > The name may sound almost the > same as carnosine -but they are different. > " L-Carnitine > L-Carnitine is an amino acid manufactured in your liver from the > amino acids > lysine & methionine. It is found in muscle & organ meats in the human > diet. > Vegetarians are susceptible to deficiencies of all 3 of the above > amino acids. > L-Carnitine plays an important role in converting fat into energy. It > transfers > fatty acids in the cell to the mitochondria (the energy engine) which > uses the > fatty acids as fuel to generate energy. It assists in regulating fat > metabolism > in your heart & skeletal muscles. > A lack of carnitine can result in buildup of fat & add to problems of > obesity. > > The first sign of carnitine deficiency is hypoglycemia, which, if > unchecked can > lead to progressive muscular weakness, muscle disorders, heart tissue > damage, > increased triglycerides, a breakdown of muscle tissue & irregular > muscle > function. > > L-Carnitine can be helpful for: > > Ischemic heart disease. > Congestive heart failure. > Increased triglycerides. > Liver disease. > Those on dialysis. > Blood sugar stabilization. > Increasing energy. > Muscle weakness & disorders. > Endurance training. > Body fat reduction. > Vegetarianism. > > L-Carnosine > is a product of the amino acid histidine & has free radical scavenging > properties. > > L-Histidine > L-histidine is an essential amino acid. Most of our histidine must > come from our > diets, but small amounts can be synthesized from glutamic acid & > carnosine. > Histidine has anti-inflammatory properties. It is the only amino acid > found to > be consistently low in the blood of those with rheumatoid arthritis. > It is also > low in the lubricating fluid in the joints. Whiskey significantly > decreases > histidine levels. Rheumatoid arthritis patients should avoid alcohol. > > Histidine can convert to histamine, which is a major neurotransmitter > in your > brain & throughout parts of your nervous system. However, histidine > intake does > not always increase brain histamine, Low brain histamine levels are > associated > with hyperactivity, mania, paranoia, hallucinations, & abnormal > thoughts. Many > brain functions of histamine are poorly understood but it is thought > to > participate in the secretion of 2 hormones, (prolactin & > antidiuretic). It is > thought to aid temperature regulation & be involved in the control of > automatic > nerve response in the central nervous system. > > Vitamin E deficiency will cause the depletion of histidine from > muscles. > Histidine is involved with the regulation of zinc levels in your > body. If zinc > is excessive it will lower histidine; if histidine is excessive it > will decrease > zinc levels. But appropriate levels of histidine enhance zinc levels. > > Histidine: > > Enhances wound healing, > Is essential for tissue growth & repair. > Is helpful with rheumatoid arthritis. > Is important for red blood cell health. Deficiency will cause > decreased > hemoglobin & hematocrit, ultimately leading to anemia. > Helps store glucose in your liver. " > http://www.findhealer.com/glossary/L.php3 > > As far as who does the testing....I have a " normal " ped for my kids > from Florida and all I did was supply him with documentation from > Dr. and also shared her background. > > Some of you may not be aware that is a respected researcher: > > R. , MD > Attending Physician > Director of Fellowship Research > Pediatric Emergency Medicine > Department of Emergency Medicine > Children's Hospital & Research Center at Oakland > 747 52nd Street > Oakland, CA 94609 > > " R. , MD, is a board certified pediatric emergency > medicine physician and the director of fellowship research for the > pediatric emergency medicine fellowship. Her research interests > focus translational research in sickle cell disease, pulmonary > hypertension and asthma. Dr. published the first > investigation to evaluate a potential new therapy for the treatment > of secondary pulmonary hypertension in sickle cell disease, a study > that made the " Top ten publications list in pulmonary vascular > disease " in Chest this year. > > Dr. has been a guest speaker nationally and internationally, > with most recent presentations given at the European Respiratory > Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary > complications of hemoglobinopathies with a focus on sickle cell > disease " ), and at the Nitric Oxide Gordon Research Conference in II > Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and > pulmonary hypertension " ). Dr. is particularly interested in > the role of low arginine and nitric oxide bioavailability in sickle > cell disease as well as asthma, and novel treatments for pulmonary > hypertension that target this mechanism. " > http://www.chori.org/Principal_Investigators/_/morris_ove rview.html > > Tanner's pediatrician found it all very interesting and was open to > writing the prescription for the blood testing even without knowing > anything about what we are seeing. It would be the most cost > effective, easy way to get the process started. For me, if my ped > did " laugh " at me or found this whole thing to be just nuts after > reading 's suggestions, results with her own child, and > background...I'd switch pediatricians. Who needs an MD that's so > in the box they may miss any other new information as well. And as > far as other professionals doing the testing -if you have the money > to go the DAN route to start and make sure it's someone with a > medical background in pediatric neurodevelopmental medicine or at > least pediatric medicine (you can be a Dan " doc " and not even be an > MD FYI) that's always an option. > > As it's been posted prior we are charting unknown territory and as > far as I'm concerned the main people that know the most about any of > this are already part of this group...and leading the way on how > vitamin E may contribute to the fish oil with knowledge about > carnitine and more... is one member here we are all fortunate to > have -Dr. ! > > also suggested here and in an email to me that if a child > does need to supplement with carnitine -that you don't just buy a > health food brand because " Carnitine. You don't want to just buy it > at the health food store. The forms they sell over the counter can > actually be harmful due to additives and the way it is made. L- > Carnitine that is definitely safe is only available in prescription > form " > > and from an archive message from : > > " Its really because you never know what you are getting...while > carnitor is regulated. Plus it gets covered by insurance...an added > benefit, as all these supplements start to add up and are fairly > costly. > > My research background is in arginine metabolism, and I am involved > in several arginine clinical trials for diseases like sickle cell > disease and thalassemia. I never tell people to buy off the shelf > because you REALLY don't know what you are buying. None of the over > the counter supplements are regulated. There are fillers etc that > may have ingredients that are not necessily OK. So I buy my > arginine supplements for trials through distributers that can > demonstrated purity to > 99.99%. > > But it is really important to get a carnitine level prior to > supplementing. Not that carnitine is harmful, even if you have > normal levels...but if your child has a carnitine deficiency...it > should be worked up further. - " > > You still may be confused -but you have to feel a bit more > informed...right? > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 I believe my son has some sort of mitochondrial dysfuction. It has something to do with not metabolizing fats properly. Some of the more obscure symptoms people have described are constant nasal congestion and very waxy ears (his peds always commented in the amount of wax in his ears). My son was very low normal for carnitine (only 2 points above below normal range) when we got the blood test done. Of course, the ped. said don't worry - if it's in the normal range he's ok. I really doubted this and decided to use OTC after reading alot of DAN literature. It appears to be a very common problem in ASD. After combining into a " mito cocktail " , I noticed a definite improvement in the congestion. I have Dr. Bocks book and noticed that he recommended the N-acetyl- carnitine. I don't have the book right now so I can't quote exactly why, but it has something to do with mito problems. I belong to the group and Dana (very smart woman) mentioned these same things in one of her sons and that she addressed it by using a " mito cocktail " . (The cocktail is pretty much what has talked about in her posts on this group - you need more than just the l-carnitine). I don't think she ever mentioned that her son had congestion or waxy ears though. This is why I read all of the posts on all of the boards that I belong to. I have picked up little things that have helped my son that most people are not talking about. All it takes is one person that has a similar experience and it can help your child immensely. > > > > L-carnitine helped my son's nasal congestion - I swithced to n- > acetyl- > > carnitine and we some improvements in his language. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Hi Janice, I know there are a higher than usual number of children in this group that are testing low in carnotine -which is typically not common. This is yet another reason why whatever is going on with our children appears to be more of a syndrome -not just a speech impairment. The carnotine issue is what led me to take Tanner to test him for that and everything else recommended. I just shared her email with Tanner's ped. The reasons for not supplementing with carnotine prior to the testing is not fear of toxins -it's not skewing the test results because carnotine deficiency can be serious. Over time a carnotine deficiency can affect the muscles around the heart. Below I have an archive clip on this and include information on carnosine because even though it's also an amino acid and almost sounds the same -carnosine you can supplement without even getting tested to use it. If anyone needs the types of blood tests to share with the pediatrician let me know and I'll archvie that too. I know for us- and we did the testing about a year ago? It was covered by insurance...but have to tell you that it was a huge list of tests which took around 12 vials of blood or something crazy like that! It's good to know that your child is deficient because then you can address this now. As says below -it's not the type of change you would even notice ...but it's one that needs to be addressed over time. You mean your pediatrician didn't say Mark needed to be on the prescription carnotine for life? Maybe I got that wrong but that was my impression. ~~~~~~~~~~~ Many people in this group (including me) supplemented their speech impaired child with either or both carn-aware ( http://www.carn-aware.com ) and/or carnosine. Carn-aware is a product name for a supplement that contains mainly carnosine with other ingredients - zinc and ('s gonna love this) " vitamin E " . Carn-aware did work for many of the children as far as us seeing some type of surge -and it was found successful in some clinical trials -here's is some history on it http://www.cherab.org/information/dietaryeffects/carnosine.html http://www.speechville.com/alternative-therapy/carnosine.html Some of us (including me) also used the carnosine because it's less expensive then the carn-aware because you can purchase it in pure powder form. I used to mix the carn-aware powder (from capsules) and carnosine powder together too. Tanner's no longer on either carnaware or carnosine -but it did appear to be one of the things that helped along the way as you can read in the links above. For carnotine you 'do' want to get the testing done first to see if there is a deficiency because: From a direct quote from pediatrician/parent member here Dr. from an email to me (not to scare anyone...but) " No harm in supplements (ie very safe - if you give to much one starts to smell fishy - ironically) and yes you could just start supplementing without any health concerns. But honestly - a carnitine deficiency is something you would want to identify first - before supplementing. The results from bloodwork will not be helpful otherwise once supplementing - since it could be normal. One doesn't just have a carnitine deficiency for no reason. This is something that should be worked up - aggressively, medically. So I would seriously consider getting him checked prior to supplements " and from the same email another clip: " The benefits of carnitine (like those on the heart) - may not be obvious (in speech and muscle tone -the sort of thing we are looking for) and you wouldn't know you were making a difference. The carnitine deficiency that ph had could have led to serious cardiac complications over the next few years if not picked up. " ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it was ran again and it was 76 again normal range 25-70. The geneticist that specializes in metabolic disorders isn't concerned with his Carnitine level being high. He did run a lab to see if it is coming out in urine which is what would happen if it isn't being used up. And he did run Carnitine again in Feb so it probably will be higher than it was in Dec. We will probably have to adjust his dose. Landon could come off Carnitine right now, but I thought it was helping him some so the doctor said to continue. Regular blood test should be done to check levels so dosing can be changed either increased or lowered. Here is an article that discusses Carnitine and CoQ10. It is a good explanation, hope you all will take the time to read it from the top to the bottom. http://www.mdausa.org/publications/Quest/q61coq10.html HTH, Tina > > Hi Janice, > > I know there are a higher than usual number of children in this group > that are testing low in carnotine -which is typically not common. > This is yet another reason why whatever is going on with our children > appears to be more of a syndrome -not just a speech impairment. The > carnotine issue is what led me to take Tanner to test him for that > and everything else recommended. I just shared her email > with Tanner's ped. > > The reasons for not supplementing with carnotine prior to the testing > is not fear of toxins -it's not skewing the test results because > carnotine deficiency can be serious. Over time a carnotine > deficiency can affect the muscles around the heart. Below I have an > archive clip on this and include information on carnosine because > even though it's also an amino acid and almost sounds the same - carnosine > you can supplement without even getting tested to use it. If anyone > needs the types of blood tests to share with the pediatrician let me > know and I'll archvie that too. I know for us- and we did the > testing about a year ago? It was covered by insurance...but have to > tell you that it was a huge list of tests which took around 12 vials > of blood or something crazy like that! > > It's good to know that your child is deficient because then you can > address this now. As says below -it's not the type of change > you would even notice ...but it's one that needs to be addressed over > time. You mean your pediatrician didn't say Mark needed to be on the > prescription carnotine for life? Maybe I got that wrong but that was > my impression. > > ~~~~~~~~~~~ > > Many people in this group (including me) supplemented their speech > impaired child with either or both carn-aware ( http://www.carn- aware.com ) > and/or carnosine. Carn-aware is a product name for a > supplement that contains mainly carnosine with other ingredients - > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > work for many of the children as far as us seeing some type of > surge -and it was found successful in some clinical trials -here's > is some history on it > http://www.cherab.org/information/dietaryeffects/carnosine.html > http://www.speechville.com/alternative-therapy/carnosine.html > > Some of us (including me) also used the carnosine because it's less > expensive then the carn-aware because you can purchase it in pure > powder form. I used to mix the carn-aware powder (from capsules) and > carnosine > powder together too. Tanner's no longer on either carnaware or > carnosine -but it did appear to be one of the things that helped > along the way as you can read in the links above. > > For carnotine you 'do' want to get the testing done first to see if > there is a deficiency because: > From a direct quote from pediatrician/parent member here Dr. > from an email to me (not to scare anyone...but) > > " No harm in supplements (ie very safe - if you give to much one > starts to smell fishy - ironically) and yes you could just start > supplementing without any health concerns. But honestly - a > carnitine deficiency is something you would want to identify first - > before supplementing. The results from bloodwork will not be > helpful otherwise once supplementing - since it could be normal. > One doesn't just have a carnitine deficiency for no reason. This is > something that should be worked up - aggressively, medically. So I > would seriously consider getting him checked prior to supplements " > and from the same email another clip: > " The benefits of carnitine (like those on the heart) - may not be > obvious (in > speech and muscle tone -the sort of thing we are looking for) and you > wouldn't > know you were making a difference. The carnitine deficiency that > ph had > could have led to serious cardiac complications over the next few > years if not > picked up. " > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 , My son tested low in carnitine and we have him on it. My doctor has not mentioned that he will need to be on it for the rest of his life. But we are quite early in our work with all of Mark's issues and intend to retest all of his levels in the springtime to see where his metabolic profiles are at. Is this for certain that he will need to be on it for the rest of his life? Where can I read more about this information? This is the first that I have heard of this but.... I do understand that Mito cocktails and autoimmune issues are a life thing? I cringe since I am still waiting for test results to come back. I simply feel like my son cannot handle one more piece of bad news. I have never heard of any toxicity risk associated with supplementing L-carnitine or acetyl-l-carnitine. I would love to have more information about this if you have it handy. Research and reading is something I like to do since it enables me to understand which systems are breaking down in the body. I think that indicated that it would be good to get a baseline of Carnitine levels prior to supplementing but if you are already supplementing..... it is a good idea to have baselines, sure, but you can certainly supplement carnitine very safely (probably a lot safer then vitamin E). This is my understanding but perhaps I am wrong and there is research to suggest that Carnitine must be under doctors supervision. I have yet to encounter this however. It is good to have all supplementation be conducted under the watchful eyes of a doctor but for many, this is not feasible. As my son is low in carnitine and his body is not producing much of it, we are definitely trying very hard to get his systems up and running efficiently so that he can indeed produce it on his own. I was under the impression that the reason his essential fatty acid profile came back so low was because he is not metabolizing fats properly.... and the low carnitine could be a cause of this? Still learning on this one but again, I was under the impression the L-carnitine should be supplemented with fish oils and the EFA's in order to promote absorption. Perhaps, again, this is an individual issue. I suspect that it could be a common issue though especially amongst our low-toned kids. Could be that a lot of them really need the L-carnitine or the Acetyl-l-Carnitine to properly absorb the EFA's and get that low tone to diminish. ly, I have found that really the best way to improve low tone in the body is with a medicine ball or weights and do the lifting! We have been doing this for some time now. But, I am aware that L-carnitine does promote muscle tone. I certainly hope that my boy does not encounter heart issues down the road as it mentioned in the linked message below. It is hard to imagine him obese since he barely carries any weight on him at all! Of course, we will never know what puberty brings. My son definitely symbolizes the metabolic train wreck so often talked about in these circles! Janice > > For those that didn't do the blood testing yet through their child's > pediatrician -please do not supplement with carnotine at all until > you do. If your child tests low in carnitine (not carnosine) then he > or she will have to be on a prescription dosage the rest of his or > her life. This is not to scare anyone but important information. > The following email will explain more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Hey Janice: Going to a geneticist that specializes in metabolic disorders would be very helpful. My understanding from what I have read a biopsy helps confirm mito disorders. Lab work is first though. The link below might help you find more answers. http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/ United Mitochondrial Disease Foundation Meta-mito-autism/ This group is good and full of information. It is for autism though, but most on the group are very helpful for answering questions. The archives are full of good info too. I am a member and as long as I stay true to the guidelines they don't have a problem with it. They can also point you to a good doctor. Hope this helps...I am also sending something to your private email for you to look over. Tina > > > > Hi Janice, > > > > I know there are a higher than usual number of children in this > group > > that are testing low in carnotine -which is typically not common. > > This is yet another reason why whatever is going on with our > children > > appears to be more of a syndrome -not just a speech impairment. The > > carnotine issue is what led me to take Tanner to test him for that > > and everything else recommended. I just shared her email > > with Tanner's ped. > > > > The reasons for not supplementing with carnotine prior to the > testing > > is not fear of toxins -it's not skewing the test results because > > carnotine deficiency can be serious. Over time a carnotine > > deficiency can affect the muscles around the heart. Below I have an > > archive clip on this and include information on carnosine because > > even though it's also an amino acid and almost sounds the same - > carnosine > > you can supplement without even getting tested to use it. If anyone > > needs the types of blood tests to share with the pediatrician let me > > know and I'll archvie that too. I know for us- and we did the > > testing about a year ago? It was covered by insurance...but have to > > tell you that it was a huge list of tests which took around 12 vials > > of blood or something crazy like that! > > > > It's good to know that your child is deficient because then you can > > address this now. As says below -it's not the type of > change > > you would even notice ...but it's one that needs to be addressed > over > > time. You mean your pediatrician didn't say Mark needed to be on > the > > prescription carnotine for life? Maybe I got that wrong but that > was > > my impression. > > > > ~~~~~~~~~~~ > > > > Many people in this group (including me) supplemented their speech > > impaired child with either or both carn-aware ( http://www.carn- > aware.com ) > > and/or carnosine. Carn-aware is a product name for a > > supplement that contains mainly carnosine with other ingredients - > > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > > work for many of the children as far as us seeing some type of > > surge -and it was found successful in some clinical trials - here's > > is some history on it > > http://www.cherab.org/information/dietaryeffects/carnosine.html > > http://www.speechville.com/alternative-therapy/carnosine.html > > > > Some of us (including me) also used the carnosine because it's less > > expensive then the carn-aware because you can purchase it in pure > > powder form. I used to mix the carn-aware powder (from capsules) and > > carnosine > > powder together too. Tanner's no longer on either carnaware or > > carnosine -but it did appear to be one of the things that helped > > along the way as you can read in the links above. > > > > For carnotine you 'do' want to get the testing done first to see if > > there is a deficiency because: > > From a direct quote from pediatrician/parent member here Dr. > > from an email to me (not to scare anyone...but) > > > > " No harm in supplements (ie very safe - if you give to much one > > starts to smell fishy - ironically) and yes you could just start > > supplementing without any health concerns. But honestly - a > > carnitine deficiency is something you would want to identify first - > > before supplementing. The results from bloodwork will not be > > helpful otherwise once supplementing - since it could be normal. > > One doesn't just have a carnitine deficiency for no reason. This is > > something that should be worked up - aggressively, medically. So I > > would seriously consider getting him checked prior to supplements " > > and from the same email another clip: > > " The benefits of carnitine (like those on the heart) - may not be > > obvious (in > > speech and muscle tone -the sort of thing we are looking for) and > you > > wouldn't > > know you were making a difference. The carnitine deficiency that > > ph had > > could have led to serious cardiac complications over the next few > > years if not > > picked up. " > > > > ===== > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Janice - Tina - my son also has all the labs to support mirochondrial dysfuntion - we're doing the supplement " cocktail " . I know a muscle biopsy will offer difinitive proof - but i'm not going there. There's no need really - this is absolutely indicitive of heavy metal toxicity. He needs every individual item in " the cocktail " . If the treatment required a pharmaceutical - you better believe i'd " go there " but, we're just talking vitamin supplements he's deficient in. Sooooo.... is dyspraxia really rooted in mitochondrial dysfunction which is rooted in heavy metal toxicity??????? hmmmmmmmmmmm YES!!!!!!! in my opinion based on my experience with my kid! Dr. Rossignal and Dr. Stoller both have done recent studies on Mitochondrial dysfuntion and heavy metal toxicity .. google it. > > Tina, > > This is a REALLY good article! Thank you. Question.... If you have low carnitine and low COQ10, then do you need a muscle biopsy (which is really painful I hear) to confirm mitochondrial disease? Or is this a separate issue? > > Anybody know the answer to this? > > Thanks, > > Janice > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Janice, Which doctor suggested the carnitine? If it was your environmental doctor, perhaps he meant " low average " ? Testable, low levels of carnitine are not common. Also, Ellen at NACD said that a lot of their kids supplement with carnitine because on paper it looks like it should really help. Yet, they haven't seen any big " wow's " with it. That has been our experience, too. Have you noticed a good effect from it? in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Tina, This is a REALLY good article! Thank you. Question.... If you have low carnitine and low COQ10, then do you need a muscle biopsy (which is really painful I hear) to confirm mitochondrial disease? Or is this a separate issue? Anybody know the answer to this? Thanks, Janice [sPAM]Re:[ ] Re: WAS: yet another MR NOW: Food and behavior story (sorry -- long!) Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it was ran again and it was 76 again normal range 25-70. The geneticist that specializes in metabolic disorders isn't concerned with his Carnitine level being high. He did run a lab to see if it is coming out in urine which is what would happen if it isn't being used up. And he did run Carnitine again in Feb so it probably will be higher than it was in Dec. We will probably have to adjust his dose. Landon could come off Carnitine right now, but I thought it was helping him some so the doctor said to continue. Regular blood test should be done to check levels so dosing can be changed either increased or lowered. Here is an article that discusses Carnitine and CoQ10. It is a good explanation, hope you all will take the time to read it from the top to the bottom. http://www.mdausa.org/publications/Quest/q61coq10.html HTH, Tina > > Hi Janice, > > I know there are a higher than usual number of children in this group > that are testing low in carnotine -which is typically not common. > This is yet another reason why whatever is going on with our children > appears to be more of a syndrome -not just a speech impairment. The > carnotine issue is what led me to take Tanner to test him for that > and everything else recommended. I just shared her email > with Tanner's ped. > > The reasons for not supplementing with carnotine prior to the testing > is not fear of toxins -it's not skewing the test results because > carnotine deficiency can be serious. Over time a carnotine > deficiency can affect the muscles around the heart. Below I have an > archive clip on this and include information on carnosine because > even though it's also an amino acid and almost sounds the same - carnosine > you can supplement without even getting tested to use it. If anyone > needs the types of blood tests to share with the pediatrician let me > know and I'll archvie that too. I know for us- and we did the > testing about a year ago? It was covered by insurance...but have to > tell you that it was a huge list of tests which took around 12 vials > of blood or something crazy like that! > > It's good to know that your child is deficient because then you can > address this now. As says below -it's not the type of change > you would even notice ...but it's one that needs to be addressed over > time. You mean your pediatrician didn't say Mark needed to be on the > prescription carnotine for life? Maybe I got that wrong but that was > my impression. > > ~~~~~~~~~~~ > > Many people in this group (including me) supplemented their speech > impaired child with either or both carn-aware ( http://www.carn- aware.com ) > and/or carnosine. Carn-aware is a product name for a > supplement that contains mainly carnosine with other ingredients - > zinc and ('s gonna love this) " vitamin E " . Carn-aware did > work for many of the children as far as us seeing some type of > surge -and it was found successful in some clinical trials -here's > is some history on it > http://www.cherab.org/information/dietaryeffects/carnosine.html > http://www.speechville.com/alternative-therapy/carnosine.html > > Some of us (including me) also used the carnosine because it's less > expensive then the carn-aware because you can purchase it in pure > powder form. I used to mix the carn-aware powder (from capsules) and > carnosine > powder together too. Tanner's no longer on either carnaware or > carnosine -but it did appear to be one of the things that helped > along the way as you can read in the links above. > > For carnotine you 'do' want to get the testing done first to see if > there is a deficiency because: > From a direct quote from pediatrician/parent member here Dr. > from an email to me (not to scare anyone...but) > > " No harm in supplements (ie very safe - if you give to much one > starts to smell fishy - ironically) and yes you could just start > supplementing without any health concerns. But honestly - a > carnitine deficiency is something you would want to identify first - > before supplementing. The results from bloodwork will not be > helpful otherwise once supplementing - since it could be normal. > One doesn't just have a carnitine deficiency for no reason. This is > something that should be worked up - aggressively, medically. So I > would seriously consider getting him checked prior to supplements " > and from the same email another clip: > " The benefits of carnitine (like those on the heart) - may not be > obvious (in > speech and muscle tone -the sort of thing we are looking for) and you > wouldn't > know you were making a difference. The carnitine deficiency that > ph had > could have led to serious cardiac complications over the next few > years if not > picked up. " > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Mitochondrial Disease What are mitochondria? A mitochondrion (singular of mitochondria) is part of every cell in the body that contains genetic material. Mitochondria are responsible for processing oxygen and converting substances from the foods we eat into energy for essential cell functions. Mitochondria produce energy in the form of adenosine triphosphate (ATP), which is then transported to the cytoplasm of a cell for use in numerous cell functions. What are mitochondrial and metabolic diseases? Mitochondrial medicine is a new and rapidly developing medical subspecialty. Many specialists are involved in researching mitochondrial diseases, including doctors specializing in metabolic diseases, cell biologists, molecular geneticists, neurologists, biochemists, pathologists, immunologists, and embryologists. Much of what we know about these diseases has been discovered since 1940. In 1959, the first patient was diagnosed with a mitochondrial disorder. In 1963, researchers discovered that mitochondria have their own DNA or " blueprint " (mtDNA), which is different than the nuclear DNA (nDNA) found in the cells' nucleus. Mitochondrial and metabolic medical conditions are now referred to as mitochondrial cytopathies. Mitochondrial cytopathies actually include more than 40 different identified diseases that have different genetic features. The common factor among these diseases is that the mitochondria are unable to completely burn food and oxygen in order to generate energy. The process of converting food and oxygen (fuel) into energy requires hundreds of chemical reactions, and each chemical reaction must run almost perfectly in order to have a continuous supply of energy. When one or more components of these chemical reactions does not run perfectly, there is an energy crisis, and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body. This poison can stop other chemical reactions that are important for the cells to survive, making the energy crisis even worse. In addition, these poisons can act as free radicals (reactive substances that readily form harmful compounds with other molecules) that can damage the mitochondria over time, causing damage that cannot be reversed. Unlike nuclear DNA, mitochondrial DNA has very limited repair abilities and almost no protective capacity to shield the mitochondria from free radical damage. What are the symptoms of mitochondrial diseases? The types of mitochondrial diseases are categorized according to the organ systems affected and symptoms present. Mitochondrial diseases might affect the cells of the brain, nerves (including the nerves to the stomach and intestines), muscles, kidneys, heart, liver, eyes, ears, or pancreas. In some patients, only one organ is affected, while in other patients all the organs are involved. Depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal. Depending on which cells of the body are affected, symptoms might include: Poor growth Loss of muscle coordination, muscle weakness Visual and/or hearing problems Developmental delays, learning disabilities Mental retardation Heart, liver, or kidney disease Gastrointestinal disorders, severe constipation Respiratory disorders Diabetes Increased risk of infection Neurological problems, seizures Thyroid dysfunction Dementia (mental disorder characterized by confusion, disorientation, and memory loss) How common are mitochondrial diseases? About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease. In adults, many diseases of aging have been found to have defects of mitochondrial function. These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria. What causes mitochondrial disease? For many patients, mitochondrial disease is an inherited condition that runs in families (genetic). An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins. It is important to determine which type of mitochondrial disease inheritance is present, in order to predict the risk of recurrence for future children. The types of mitochondrial disease inheritance include: nDNA (DNA contained in the nucleus of the cell) inheritance. Also called autosomal inheritance. -- If this gene trait is recessive (one gene from each parent), often no other family members appear to be affected. There is a 25 percent chance of the trait occurring in other siblings. -- If this gene trait is dominant (a gene from either parent), the disease often occurs in other family members. There is a 50 percent chance of the trait occurring in other siblings. mtDNA (DNA contained in the mitochondria) inheritance. -- There is a 100 percent chance of the trait occurring in other siblings, since all mitochondria are inherited from the mother, although symptoms might be either more or less severe. Combination of mtDNA and nDNA defects: -- Relationship between nDNA and mtDNA and their correlation in mitochondrial formation is unknown Random occurrences Diseases specifically from deletions of large parts of the mitochondrial DNA molecule are usually sporadic without affecting other family member -- Medicines or other toxic substances can trigger mitochondrial disease How are mitochondrial diseases diagnosed? Diagnosis of mitochondrial disease can be invasive, expensive, time- consuming, and labor-intensive. Therefore, evaluation is not taken lightly. Doctors experienced in diagnosing and treating these diseases will take either a step-wise approach to diagnosis or, in some centers, the evaluation takes place over a few days. The evaluation includes a combination of clinical observations and laboratory tests. Under ideal circumstances, the evaluation will produce an answer. However, even after a complete evaluation, the doctor might not be able to confirm a specific diagnosis or put a name to the disorder. In many cases, however, the physician will be able to identify which patients do and don't have metabolic diseases. Mitochondrial disease is diagnosed by: Evaluating the patient's family history Performing a complete physical examination Performing a neurological examination Performing a metabolic examination that includes blood, urine, and optional cerebral spinal fluid tests Performing other tests, depending on the patient's specific condition and needs. These tests might include: -- Magnetic resonance imaging (MRI) or scan (MRS) if neurological symptoms are present -- Retinal exam or electroretinogram if vision symptoms are present -- Electrocardiogram (EKG) or echocardiogram if heart disease symptoms are present -- Audiogram or BAEP if hearing symptoms are present -- Blood test to detect thyroid dysfunction if thyroid problems are present -- Blood test to perform genetic DNA testing More invasive tests, such as a skin or muscle biopsy, might be performed as needed and recommended by your doctor. How are mitochondrial diseases treated? There are no cures for mitochondrial diseases, but treatment can help reduce symptoms, or delay or prevent the progression of the disease. Treatment is individualized for each patient, as doctors specializing in metabolic diseases have found that every child and adult is " biochemically different. " That means that no two people will respond to a particular treatment in a specific way, even if they have the same disease. Certain vitamin and enzyme therapies, along with occupational and physical therapy, might be helpful for some patients. Vitamins and supplements prescribed might include: - Coenzyme Q10 - B complex vitamins: thiamine (B1), riboflavin (B2), niacin (B3), B6, folate, B12, biotin, pantothenic acid - Vitamin E, lipoic acid, selinium, and other antioxidants - L-carnitine (Carnitor®) - Intercurrent illness supplement: vitamin C, biotin Diet therapy, as prescribed by your doctor along with a registered dietitian, might be recommended. Antioxidant treatments as protective substances are currently being investigated as another potential treatment method. Important: Specific treatments should always be guided by a metabolic specialist. Patients should not take any of these supplements or try any of the treatments unless prescribed by a doctor. Taking inappropriate supplements or treatments might lead to delays or failure in establishing an accurate diagnosis. What is the prognosis or outlook? Once a patient is diagnosed with a specific mitochondrial disease, the patient's medical problems have already been identified or can be identified with proper testing so treatment can be initiated to relieve symptoms and delay the progression of the disease. There is no way to predict the course of mitochondrial diseases. They might progress quickly or slowly, even over decades. The disease might also appear stable for years. For parents considering having other children, genetic counseling is available. Although complex, prenatal testing is only available for a few types of mitochondrial disorders. Please discuss your concerns with your doctor. ©Copyright 1995-2007 Cleveland Clinic. All rights reserved. Can't find the health information you're looking for? Ask a Health Educator, Live! Click here to go to the Medical Genetics Program Web site. Know someone who could use this information?....send them this link. -------------------------------- What causes mitochondrial disease? For many patients, mitochondrial disease is an inherited condition that runs in families (genetic). An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins. It is important to determine which type of mitochondrial disease inheritance is present, in order to predict the risk of recurrence for future children. --------------------------------- There is a difference of genetics and acquired mitochondrial dysfunction due to toxins. Because I am not a doctor, I am not going to pretend to know all there is to know about mito disorders. I do know that many people are faced with the diagnosis of suspected mito disorder. It is very complex and one should really visit a doctor that specializes in metabolic disorders if this is a possibility for their child. Tina > > > > Tina, > > > > This is a REALLY good article! Thank you. Question.... If you have > low carnitine and low COQ10, then do you need a muscle biopsy (which is > really painful I hear) to confirm mitochondrial disease? Or is this a > separate issue? > > > > Anybody know the answer to this? > > > > Thanks, > > > > Janice > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Feeling way better about my genetics appt. No way we have all this. > > > > > > Tina, > > > > > > This is a REALLY good article! Thank you. Question.... If you > have > > low carnitine and low COQ10, then do you need a muscle biopsy > (which is > > really painful I hear) to confirm mitochondrial disease? Or is > this a > > separate issue? > > > > > > Anybody know the answer to this? > > > > > > Thanks, > > > > > > Janice > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 So you think that is it? Based on nothing but lots of reading I have often wondered...just wondered...if the known mito disorders are exactly as they are defined and if some of the kids labeled " unknown mito " are metal kids. I'll read your reference. I am curious if the metal stuff they reference relates to known or unknown mito stuff. > > > > Tina, > > > > This is a REALLY good article! Thank you. Question.... If you have > low carnitine and low COQ10, then do you need a muscle biopsy (which is > really painful I hear) to confirm mitochondrial disease? Or is this a > separate issue? > > > > Anybody know the answer to this? > > > > Thanks, > > > > Janice > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Great article! Thanks for posting it, Tina. It does not mention one thing for which carnitine is sometimes touted, and that is the enhanced absorption of other nutrients. Did the geneticist address that at all? It is one of those ambiguous claims, but I am curious because carnitine (and CoQ10) are so frequently recommended. in NJ > > Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it > was ran again and it was 76 again normal range 25-70. The geneticist > that specializes in metabolic disorders isn't concerned with his > Carnitine level being high. He did run a lab to see if it is coming > out in urine which is what would happen if it isn't being used up. > And he did run Carnitine again in Feb so it probably will be higher > than it was in Dec. We will probably have to adjust his dose. > Landon could come off Carnitine right now, but I thought it was > helping him some so the doctor said to continue. Regular blood test > should be done to check levels so dosing can be changed either > increased or lowered. > Here is an article that discusses Carnitine and CoQ10. It is a good > explanation, hope you all will take the time to read it from the top > to the bottom. > http://www.mdausa.org/publications/Quest/q61coq10.html > HTH, > Tina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 : He didn't mention any side effects. I tried to find some information by searching and I came up empty. Tina > > Great article! Thanks for posting it, Tina. It does not mention one > thing for which carnitine is sometimes touted, and that is the > enhanced absorption of other nutrients. Did the geneticist address > that at all? It is one of those ambiguous claims, but I am curious > because carnitine (and CoQ10) are so frequently recommended. > > in NJ > Quote Link to comment Share on other sites More sharing options...
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