Welcome! Thank you for visiting the Chelation Therapy for Autism message board. This is a place for support, discussion and friendly debate. This board is designed for those who hold the belief that heavy metal toxicity and/or environmental exposures (ie: mercury/aluminum from vaccination) are the probable cause for regressive autism. This is the main topic of discussion but subject matter is not limited to chelation alone. This message board does not constitute medical advice. Consult your physician for medical advice.
What do you think of this?
by in limbo
Succimer Lowers Lead Levels in Children but Does Not Prevent Cognitive Impairment
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WESTPORT, CT (Reuters Health) May 09 - Succimer, an oral lead-chelating agent, lowers blood lead levels in exposed children but does not prevent or reduce the cognitive impairment that can occur, according to a report published in the May 10th issue of the New England Journal of Medicine.
Dr. Walter J. Rogan, from the National Institute of Environmental Health Sciences in Research Triangle Park, North Carolina, and colleagues randomized 780 children with blood lead levels of 20 µg/dL to 44 µg/dL to receive up to three 26-day courses of succimer or placebo. Subject age at enrollment ranged from 12 months to 33 months. Cognitive, motor, behavioral, and neuropsychological tests were given over 36 months.
The researchers found that the mean blood lead level of the succimer group was 4.5 µg/dL lower than that of the placebo group during the first 6 months of the trial. However, at 36-month followup, the succimer group had a mean IQ score that was 1 point lower than that of the placebo group and had slightly worse parent behavioral ratings.
The succimer group did score better than the placebo group on several of the neuropsychological tests, but the differences were not statistically significant, the authors point out.
"In 1990, the CDC said that every child should be screened for a blood lead level and they lowered the level of concern from 25 µg/dL to 15 µg/dL," Dr. Rogan told Reuters Health. "There was widespread belief that lead impaired cognitive development. However, there was not much enthusiasm for treating children in 1990 because the only drugs that were available were injectables."
"We don't think that children should be treated for high lead levels," Dr. Rogan said. "We think that they should never get exposed to that much lead in the first place."
N Engl J Med 2001;344:1421-1426.
I can't believe they could arrive at such a conclusion on their own...while they steadily inject children with mercury on a daily basis. GRRRR!!
will only send more mercury up into the brain...and they wonder why kids get worse behavior..duh?
I thought they were susposed to be the "educated" (I use this term loosely) ones.
I feel sorry for the kids and parents who are living thru this nightmare.
Why the hell do these idiots continue to play russian roulette with our childrens health?
I wish that each one of these people who set up the "rules" regarding vaccines were injected with just the amount of mercury from all the mandated vaccines (whcih they by chance get richer on .. and the rest of us live with the disorders these "safe" vaccines induce - not just autism, but asthma, parkinson's, seizures, allergies, ADD/HD, Chron's, Leukemia, death, fevers etc. ) Just put all the mercury, alunimum, formaldayde, chicken and monkey and cow and human diploid cells into one massive dose. They can forget about the diseases, just the additives.... and lets see what happens to each one of them...
Bad protocols are in the same boat as bad medicine!
International Autism Research Center
Tel (321) 953-0277 Fax (321) 953-3983
Jeff Bradstreet, MD, FAAFP
Jerry Kartzinel, MD
Stephanie Hoener, ND
Position Paper on Diagnosis and Treatment of Heavy Metal Toxicity in Autism Spectrum Disorders
DRAFT Version 1.6 3/2001
INTRODUCTION: Recent evidence collected by Sallie Bernard, Albert Enayati, Teresa Binstock, Heidi Roger, Lyn Redwood, RN, MSN, CRNP, Woody McGinnis, MD, and reproduced in several autism treatment and research facilities, indicates that toxic metals play an important role in the development of at least some autism- related symptoms. Mercury, cadmium, lead, aluminum, tin and antimony have all been observed at dangerous levels in Autism Spectrum Disorders (ASD). Much of the concern is focused on a mercury-containing preservative in vaccines - Thimerosal. This present treatment protocol is the result of extensive consultation with mercury and immunology experts. It is a compilation of these many sources and represents our efforts to present a balanced and scientifically sound approach to this very important issue. We recognize that experts in this field do not all agree on the issues related to mercury or its detoxification. Until a final consensus is reached by the DAN! Subcommittee on Mercury and Autism, this is the protocol that is being used in our clinic. This paper does not constitute medical advice, and we recommend that you consult your physician before following the guidelines stated herein. It is designed to help you, as parents, understand toxic metal issues and why we are suggesting this means of detoxification.
Introduction
It is well known that heavy metals have cumulative toxicities. This means that several metal toxins may combine together to have a more significant toxic effect, even if their individual levels are below the danger threshold. For example, if a child has mercury, lead and cadmium on testing, yet all are below toxic levels, the additive effects may actually be very toxic. But do mercury and other toxins cause autism? There are many reasons to suspect that they at least play a role in the process. Mercury exposure prevents zinc from playing its part in the formation of myelin basic protein (MBP) - part of the nerve insulation system. Mercury also leads to the formation of autoantibodies to MBP and other brain proteins. As reported by V.K. Singh, PhD during recent Congressional hearings, approximately 80% of children with autism have autoantibodies to MBP and/or Neuronal Filament Proteins. Mercury is well established as a trigger of antibodies to the brain.
Exposure to methyl mercury results in serum autoantibodies to neurotypic and gliotypic proteins
El-Fawal HA, Gong Z, Little AR, Evans HL
Nelson Institute of Environmental Medicine, New York University Medical Center, Tuxedo Park 10987, USA.
Neurotoxicology 1996 Spring;17(1):267-76
Abstract (partial): Environmental exposure to methyl mercury (MeHg) continues to pose a threat to humans, making early detection of neurotoxic effects a pressing concern. This study suggests that assay of autoantibodies against nervous system proteins may provide a means of assessing the early neurotoxic effects of environmental MeHg exposure.
Neuroimmunotoxicology: Humoral assessment of neurotoxicity and autoimmune mechanisms
Hassen, AN et al.
Environ Health Perspect Vol. 107. Sup. 5 Oct. 1999.
(Review article with 174 references)
This article discussed how mercury and lead induce the formation of autoantibodies to MBP, NFP and GAFP, increase blood-brain barrier permeability, interfere with myelination, and have direct neurotoxic effects.
Other means (e.g. measles viruses) have been proposed for the development of these autoantibodies as well, but mercury remains a serious toxin. Our concern is over both the prenatal exposure to maternal mercury (RhoGam with its Thimerosal preservative, fish, and amalgam fillings, to mention a few) as well as the additional contribution of Thimerosal, diet and amalgams in the children themselves. These concerns have been expressed within mainstream medical thought for some time now, as the following article from the University of Pittsburgh demonstrates.
Behavioral toxicology
Needleman HL
Department of Psychiatry, University of Pittsburgh, PA 15213-3411
Environ Health Perspect 1995 Sep; 103 Suppl 6():77-9
Abstract: The new fields of behavioral toxicology and behavioral teratology investigate the outcome of specific toxic exposures in humans and animals on learning, memory, and behavioral characteristics. Three important classes of behavioral neurotoxicants are metals, solvents, and pesticides. The clearest data on the deleterious effects of prenatal exposure to toxicants comes from the study of two metals, lead and mercury, and from epidemiological investigations of the effects of alcohol taken during pregnancy.
So, how is it that our children have so much heavy metal exposure? We are unsure how much of the mercury exposure occurs prenatally (before birth) or during the first few years of life (from the environment and from vaccine preservatives). The working understanding goes like this: When mercury, in the form of Thimerosal, is introduced at high levels through multiple vaccines (including maternal vaccination contributions) and/or Anti-Rh Gammaglobulin (RhoGam and others - except BayRho, which has no mercury preservative), it overloads the normal metal detoxifying system in susceptible children. This allows other environmental metals (such as lead in some calcium supplements and methyl mercury in fish) free access to the body. Many factors likely go into determining how much mercury a child can tolerate without side effects. In general, it is best to assume that no mercury exposure is safe. The same goes for cadmium and likely lead as well. But there is more to the picture than mere exposure to mercury. There are individual susceptibilities to heavy metals. The following abstract nicely illustrates this.
Individual susceptibility in occupational and environmental toxicology.
Grandjean P
Institute of Community Health, Odense University, Denmark.
Toxicol Lett 1995 May;77(1-3):105-8
Abstract: By prudent interpretation of toxicological and epidemiological evidence, susceptibility could become a very useful notion, both in a scientific sense and for prevention of adverse effects. Based on presumed aetiology, susceptibility can often be separated into genetic, constitutional, and environmental categories, although some overlapping between these groups will be apparent. Inherited factors seem to be involved in determining many toxic effects of environmental chemicals, including carcinogenic responses, although some of the evidence is equivocal. Among constitutional factors, sex, age and pregnancy are major determinants of individual susceptibility. An individual's resistance toward chemical toxicity may also be affected by other environmental exposures, including those associated with diet and lifestyle. The mechanisms involved are only partially known but are likely to include both toxicokinetic and toxicodynamic interactions. Three major types can be recognized: (1) factors that increase the concentration of the biologically active substance at the active site; (2) factors that augment the reaction of the chemical substance with target molecules in the body, thereby initiating the response; and (3) factors that promote the sequence of events between the initial reaction and the final manifestation of an adverse health effect. Specifically, a decrease in the body's reserve capacity may not be readily observable and may only reveal itself as a weakening of the defense mechanisms. The causes of hypersusceptibility and its effects on toxic responses are little known and deserve to be explored systematically.
So, as you can see, many things impact the ability of an individual to deal with a toxin like mercury. Glutathione and cysteine are critical sulfur-containing molecules (thiols) that help protect the body from mercury, and it is likely that these and metallothionein (the body's natural metal defender) are deficient in children affected by toxic metals. Drs. Bill Walsh and Jon Pangborn emphasized this at the 2000 PreDan! Think Tank Meeting as well. Selenium and Vitamins C and E are also part of the body’s defense against heavy metal toxicity. It is therefore important to ensure that all of these nutrients are well supplemented.
Removing Toxic Metals by Chelation
Chelation refers to a process of providing the body with a special chemical that binds the toxic metals and removes them from the system. In the right environment, sulfur thiols such as Chemet (DMSA) are extremely effective and safe at removing heavy metals from the body. However, these chemicals require the presence of high amounts of Vitamin C and sulfur-donor molecules (glutathione and similar amino acids) to work properly.
We use oral challenges of the FDA-approved chelator DMSA to pull metals out into the urine and feces. {Availability: Chemet®, the prescription form of DMSA, is available from Sanofi Pharmaceuticals. Thorne Research (available only from doctors) offers a DMSA supplement called Captomer. Kirkman Labs also makes an excellent DMSA product known as DiSulfhydryl. It is available in 100mg, 50mg and 25mg strengths and comes in flavored or hypoallergenic (unflavored) varieties. Kirkman’s DMSA is available without a prescription but requires a doctor’s authorization to order.} One of the problems with administering DMSA is that it has a very strong sulfur odor that most children find highly objectionable. An effective way to minimize this odor is to keep the DMSA capsules in the freezer and only take them out immediately prior to dosing. Amazingly, Kirkman has succeeded in covering up this normally strong sulfur smell by adding small amounts of menthol to its flavored variety of DMSA.
There are well-established norms used by toxicologists worldwide for the amount of metal excreted during a challenge. We'll explain the details of challenges and chelation later, but recently some physicians who treat autism have advocated not performing heavy metal challenges in children with ASD. After careful investigation, we believe that DMSA oral challenges, when done properly, are quite safe and helpful in our understanding of a child’s symptoms. Because the symptoms of mercury toxicity overlap with the symptoms of many other nervous system disorders, including post-viral encephalitis, it is difficult to know exactly which culprit is involved in the various symptoms we call autism.
We prefer to perform metal challenge tests on all children with neurological or behavioral symptoms. Mercury is by no means the only metal toxin we find in children. Lead is known to contaminate water supplies and also some calcium supplements. Not knowing about the lead in a child's situation would only allow continued exposure to it.
Safety of DMSA
When we looked for the best way to remove mercury and other heavy metals, DMSA appeared as one of the best-tested and potent mercury chelators. It is approved by the FDA for lead removal from children, and physicians have years of experience using it in both children and adults. It is known to be very effective in mercury as well as lead. Its safety in children is well documented. The following two article abstracts help put this into perspective.
Safety and efficacy of meso-2, 3-dimercapto-succinic acid (DMSA) in children with elevated blood lead concentrations.
Chisolm JJ Jr
Lead Poisoning Program, The Kennedy Krieger Institute, Baltimore, Maryland 21205, USA.
J Toxicol Clin Toxicol 2000;38(4):365-75
Abstract: OBJECTIVE: To evaluate the safety and efficacy of meso-2, 3-dimercaptosuccinic acid in the treatment of children with lead toxicity. DESIGN: This was an open-label study in 59 children 12-65 months old, with pretreatment whole-blood lead levels of 25-66 microg/dL, who received 116, 26-28 day courses of oral dimercaptosuccinic acid while residing either in the Pediatric Clinical Research Unit of the Johns Hopkins Hospital or in lead-safe housing during the outpatient portion of the study. RESULTS: All who completed the study showed sharp decreases in blood lead concentration during therapy, but 2-3 weeks following completion of drug therapy, blood lead concentration rebounded to an average of 58% (23 microg Pb/dL of whole blood) of their average pretreatment blood lead concentration (40 microg Pb/dL of whole blood). There were no adverse reactions attributable to dimercaptosuccinic acid. (This is much longer treatment than presently being used in autism).
A report of pediatric SUCCIMER overdose
Sigg T; Burda A; Leikin JB; Gossman W; Umanos J
Illinois Poison Center, Chicago 60661, USA.
Vet Hum Toxicol, 1998 Apr, 40:2, 90-1
A 3-year-old child ingested SUCCIMER capsules to receive a dose of 185 mg dimercaptosuccinic acid per kg body weight. No adverse effects occurred. (A 35-pound child would have taken 2775 mgs of Chemet.)
Mercury and lead are cationic, meaning they have a positive charge. When we remove a significant positively charged molecule from within a wounded brain cell, we run the risk of destabilizing the membrane of that nerve cell. This could cause temporary dysfunction or even seizures. We know that children with autism are prone to seizures and recent evidence collected by Jeff Lewine, PhD, et al. (1999) suggests that over 80% of children with regressive autism have an underlying seizure problem. For this reason, we have developed a special go-slow approach for children felt to be at risk from their history or poor nutritional status. Children with autism symptoms have been observed to have both magnesium and taurine deficiencies. These should be looked for and corrected prior to chelation, since deficiencies in either could increase the risk of seizures.
Enhancing the Safety and Efficacy of DMSA Chelation
To summarize the issues so far, several things greatly improve both the safety and efficacy of DMSA in binding and removing toxic metals. These are:
1) Melatonin, the substance normally produced in the brain's pineal gland to induce sleep and regulate circadian rhythm, also protects against mercury even in the toxic Thimerosal form. Ideally, we want to use this three days before chelation, during the three days on DMSA, and for a few days thereafter. This roughly equates to 8 days on and 6 days off. If your child already requires melatonin to sleep, just continue it on a regular basis.
2) Glutathione is an important antioxidant that assists in the chelation process. It supports Phase II liver detoxification and prevents DMSA from being inactivated in the body. Oral glutathione is somewhat poorly absorbed, but levels of intracellular glutathione may also be increased through supplementation with NAC. Recently, we have started giving intravenous glutathione to many of our patients, in many cases with promising results (increased attention, improved sleep, greater focus, decreased hyperactivity, and other positive changes). IV glutathione may prove to be a very important component of autism treatment in the future.
3) N-acetyl cysteine (NAC) increases intracellular glutathione, again to protect DMSA from inactivation so that it is better able to bind to mercury. But cysteine to DMSA ratios need to be kept fairly low so there is always more DMSA than cysteine available to bind heavy metals. Cysteine binds very tightly to DMSA, and if excessively high amounts of cysteine are supplemented there will not be enough DMSA available to bind the toxic metals. In addition, most DMSA is excreted in the urine bound to cysteine. This creates two concerns: 1) Cysteine needs to be replaced, and 2) Cysteine should not be taken at the same time as DMSA. For this reason, the consensus at the last DAN! Subcommittee meeting on mercury was to give NAC only on the off-DMSA days (i.e. days 4-14 of each 14-day cycle).
4) Alpha lipoic acid is remarkable for its ability to simultaneously improve liver detoxification and carry DMSA into the cells where it can more rapidly detoxify heavy metals. It increases the removal of metal mercury (as in amalgams). Limited information indicates it may decrease the biliary removal of mercury in the methyl mercury form. It may not influence the renal excretion, based on other studies. This has not been studied where glutathione was also supplemented, or where Thimerosal (ethyl mercury) is the main mercury form. We see large urinary mercury excretion when lipoic acid, glutathione and NAC are combined, so the theoretical issue is apparently nominal. Lipoic acid should only be given in small doses relative to DMSA. The most effective ratio is unknown, but current observations suggest a ratio of approximately 6 parts DMSA to 1 part lipoic acid as safe and effective. Please note that while past protocols have recommended that lipoic acid only be given on days 1-3 along with DMSA, we now recommend that it be given throughout the entire chelation cycle (days 1-14) due to its beneficial effects in removing heavy metals even on days when DMSA is not given.
5) Zinc is generally deficient to start with in autism and should be supplemented while a child is chelating. We like to document adequate zinc levels in the child prior to starting DMSA, and we generally recommend taking 20 to 60 mg daily of supplemental zinc during the chelation process. In past versions of this and other protocols, it was recommended that minerals only be given during days 4-11 (off-DMSA days) because of the speculation that DMSA’s strong affinity for binding zinc might make it unavailable to bind to heavy metals in the body. However, according to the chelation experts who were present at the recent DAN! Mercury Meeting in Dallas, there is strong evidence that giving zinc at the same time as DMSA may actually be the best way to get zinc into the body, and that this practice does not interfere with the ability of DMSA to bind onto and chelate heavy metals. The reason behind this is that DMSA has a significantly lower binding affinity for zinc (and other minerals) than it does for heavy metals. Therefore, DMSA can bind onto any zinc that is being supplemented and carry it into the tissues of the body. However, as soon as DMSA encounters a heavy metal, for which it has a much higher affinity than minerals, it releases the zinc and binds onto the heavy metal, thereby initiating the chelation process. Based on this evidence, we now recommend supplementing with zinc and all other minerals throughout the entire chelation cycle (days 1-14), to include those days when the child is also taking DMSA.
6) Vitamin C, in addition to being a potent antioxidant, is also important for chelation because it increases the conversion of organic mercury to less toxic inorganic mercury. Metal mercury also exits the body more easily than the organic forms. Generally, we like neutral (buffered) Vitamin C in the esterified form (Ester-C). Give 1,000 to 3,000 mg per day during the entire chelation cycle.
7) Selenium is another important antioxidant that plays an essential role in the detoxification of mercury. It assists in the conversion of mercury to less toxic forms through the formation of inactive mercury-selenium compounds. Animal studies have shown that the kidney deposition of mercury in the offspring of methyl mercury-exposed pregnant rats was significantly reduced by the presence of selenomethionine [Transplacental passage and fetal deposition of mercury after low-level exposure to methyl mercury. Nielson JB, Anderson O. J Trace Elem Electrolytes Health Dis 1992;6(4):227-32]. We suggest a dose of 50-200 mcg daily throughout the entire chelation process (days 1-14).
8) Taurine also plays an important role in the chelation process through a variety of protective mechanisms. As stated above, there is significant taurine deficiency in many children with autism, and this should be corrected due to increased risk of seizures. In addition, taurine may help prevent the adverse reactions that some children appear to experience from supplementation with N-acetyl cysteine, so this nutrient should ideally be in place before NAC is introduced.
Based on a recent extensive discussion of mercury toxicology with Dr. Haley from the University of Kentucky, we believe that all these supplements should be in place prior to chelation. The reasons are very clear and well supported by extensive biochemistry research in this arena. DMSA is a very reactive compound that actually likes to self-bind, forming DMSA-DMSA linkages, unless high levels of other sulfur-donor molecules (e.g. glutathione) are present to prevent that. Further, mercury is largely inside the cells of the body, and getting it out requires a pulsing mechanism to move mercury from inside the cell to the extracellular fluid, where it can more readily bind DMSA. Once bound to DMSA, it will rapidly find its way to the kidney and bile for excretion.
When DMSA binds to mercury, the resulting DMSA-mercury complex is extremely stable, and the mercury has been rendered harmless. DMSA does not give up the mercury to which it is bound. The reason that the half-life of DMSA is short is related to both its rapid binding of mercury or lead and its ready excretion from the body. There is more than abundant information to be comfortable that DMSA does not drag mercury into the brain, and that any DMSA that does find its way into the brain will beneficially bind mercury. Further, lipoic acid does not drag mercury into the brain unless the mercury is being given at the same time as the lipoic acid (i.e. high fish consumption, amalgam removal). It is actually considered beneficial to give DMSA and alpha lipoic acid at the same time, since lipoic acid can carry DMSA to areas of the cell it wouldn't normally have access to. This allows for more complete removal of mercury. The paper referred to in numerous internet discussions about lipoic acid and brain effects is actually often misrepresented. The research by Gregus and colleagues published in Toxicol Appl Pharmacol 1992 May;114(1):88-96, does not deal with chelation but the co-administration of mercury (as a toxic load) and lipoic acid. It would be like what might happen if you gave a Thimerosal-containing vaccine with lipoic acid. This is the opposite of what happens with chelation, where we administer lipoic acid with DMSA (a powerful chelator) to carry that chelator to all potential mercury binding sites.
Further adding to the safety of chelation is melatonin, which effectively protects the body from mercury. Although a very technical paper, the following reference supports the use of melatonin in mercury exposure cases.
Mercury induces cell cytotoxicity and oxidative stress and increases beta-amyloid secretion and tau phosphorylation in SHSY5Y neuroblastoma cells.
Olivieri G, Brack C, Muller-Spahn F, Stahelin HB, Herrmann M, Renard P, Brockhaus M, Hock C
Neurobiology Laboratory, Psychiatric University Hospital, Basel, Switzerland. Olivieri@ubaclu.unibas.ch
J Neurochem 2000 Jan;74(1):231-6
Abstract: Preincubation of cells with melatonin resulted in an attenuation of Abeta 1-40 and Abeta 1-42 release. Tau phosphorylation was significantly increased in the presence of mercury (n = 9, p<0.001), whereas melatonin preincubation reduced the phosphorylation to control values. These results indicate that mercury may play a role in pathophysiological mechanisms of Alzheimer's Disease. (And, as we believe, autism.)
N-acetyl cysteine also has many important roles to play in the chelation process and there is a great deal of research to support its safety and efficacy in removing heavy metals from the body. Here are just a few of the references on NAC that are found in the scientific literature:
Differential effect of N-acetyl cysteine on excretion of
the metals Hg, Cd, Pb, and Au.
Ottenwalder H, Simon P
Institut für Arbeitsphysiologie, Universität Dortmund, Germany.
Arch Toxicol 1987 Jul;60(5):401-2
The protective effects of N-acetyl-L-cysteine against
methyl mercury embryotoxicity in mice.
Ornaghi F, Ferrini S, Prati M, Giavini E
Research and Development Division, Zambon Research S.p.a., Bresso,
Milan, Italy.
Fundam Appl Toxicol 1993 May;20(4):437-45
Effects of N-acetyl cysteine in protecting against
mercuric chloride-induced nephrotoxicity.
Girardi G, Elias MM
Farmacologia, Facultad de Ciencias Bioquimicas y Farmaceuticas,
Universidad Nacional de Rosario, Argentina.
Toxicology 1991 Apr 8;67(2):155-64
Cytotoxicity of heavy metals in the human small
intestinal epithelial cell line I-407: the role of
glutathione.
Keogh JP, Steffen B, Siegers CP
Institute for Toxicology, Medical University of Lübeck, Germany.
J Toxicol Environ Health 1994 Nov;43(3):351-9
Chelation and Challenge Protocol
As stated, we use quantitative testing to determine the extent of heavy metal toxicity and removal. We are getting very high mercury excretion in children with pretreatment using sulfur compounds and concurrent lipoic acid, as mentioned above. The process of testing for mercury and other heavy metals (original challenge) is identical to the ongoing chelation process. For chelation we recommend a series of 14-day cycles, with 3 days on DMSA followed by 11 days off DMSA. This should be continued for as long as it takes to reach a stable - below toxicity - urinary metals test. The rationale in using a 3 days on/11 days off cycle is that it allows a Friday - Sunday chelation where parents are more available to administer and observe the process. Three-times-a-day dosing is now accepted as adequate, safe and effective. It allows the parents and children to sleep at night as well (obvious advantage). This differs from previous recommendations, but we agree that the biochemistry of DMSA as presented by Dr. Haley represents no need for steady-state dosing.
Reactions to Chelation
Several reactions have been observed in autistic children undergoing chelation that are generally not observed in children with straightforward heavy metal intoxication. These include the so-called “mercury rash”. This is usually an acne-like rash that may occur anywhere on the body. Sometimes is presents as a flat, itchy, reddish mark similar to the early eruption of ringworm.
We have observed several children who will start talking while on DMSA and then abruptly stop once the cycle switches off. This is under intense investigation. We think that DMSA may be removing an interfering substance to normal metabolism and that these children will give us great insight into the mechanism of language regression in autism.
Some children seem to regress on chelation for a period of days to weeks. This is obviously concerning. Sometimes very low-dose DMSA given between more intense three-day cycles is helpful. We may also consider lowering the overall dose of DMSA and supporting supplements. Some children react adversely to Chemet® (the prescription form of DMSA) because it contains a number of additives, including corn. With other children, it is necessary to first clean up the gut and ensure a healthy intestinal environment before beginning the chelation process. This is because the sulfur thiols in DMSA break down into ester groups in the GI tract, and these ester groups can in turn feed any pathogenic intestinal bacteria that may be present.
Many children are reported by parents and therapists to demonstrate significant language and social gains with DMSA. This has not yet undergone rigorous scientific investigation, but the results of this early responder group have encouraged CAN to request proposals for funding detailed investigations into the role of mercury and DMSA in autism.
Supporting Supplementation
One of the ways we have tried to make this process easier is to ask Kirkman Laboratories to make good-tasting, protocol-specific supplements for supporting successful chelation. These are now available. Chelation Aid Pro Support is a Phase II liver detoxifier that contains glutathione, taurine, glycine, and Vitamin C, all of which are needed to help support the chelation and detoxification process. NAC (N-acetyl cysteine), which has been taken out of the Chelation Aid Pro Support, is now available as a separate supplement. In addition to DMSA, Kirkman has also created other protocol-specific supplements for chelation, including Alpha lipoic acid, Melatonin, Taurine, Zinc, and the supporting supplements Multiple Vitamin Pro Support and Multiple Mineral Complex Pro Support.
Schedule of Supplements
(Note the differences in alpha lipoic acid, N-acetyl cysteine, and zinc)
PRELOAD* PRELOAD PRELOAD PRELOAD PRELOAD
In Lbs., or low dose for sensitive kids Dose 3 times per day, only on days 1-3 of each 14-day cycle Dose 2 times per day during the entire 14-day cycle Give at bedtime, for 3 days prior to chelation, during chelation, and for a few days after chelation Dose 2 times per day during the entire 14-day cycle Dose 2 times per day, only on days 4-14 of each cycle (i.e. not on DMSA days) Dose once per day during the entire 14-day cycle
Low Dose 25-50 mg 25 mg 1 mg 10 mg 25 mg 20 mg
* Preloading refers to the process of giving the supplement for a period of time prior to the chelation process. The idea is to get the body prepared to react to the chelating substance safely and effectively. The table above assumes that other efforts are ongoing to support the child, such as Vitamin C, magnesium, selenium, taurine, essential fatty acids, and other basic vitamins and minerals. Dosages vary depending on the child’s age and weight, so work with your physician on determining the correct protocol for your child. Here are some very general dosing guidelines (all supplements should be given in divided doses for maximum efficacy):
Vitamin C: 1,000-3,000 mg/day of buffered Vitamin C in the esterified form (Ester-C)
Selenium: 50-200 mcg/day
Taurine: 500-2,000 mg/day
Magnesium: 200-600 mg/day
Essential fatty acids: 1,000-2,000 mg/day
Basic Multi Vitamin & Mineral supplement: Variable dosing
Collecting a Post-Provocation Urine
Give the 3 days of DMSA and other supplements as directed in the table above (or as recommended by your doctor), and on the morning of the 3rd or 4th day collect the first available morning urine (spot urine). Other doctors prefer 6-hour or 24-hour urine collections. From a practical perspective, the single or spot urine is the easiest and does give very good results based on the observation of several physicians.
If you need to use a collection bag to get a urine sample, please check with the lab performing the test to see if it is free of contamination from metals. To collect a specimen, use only the container provided by the lab. Do not touch the inside of the container. Use the large container and then transfer only as much as will fit in the smaller transport container.
Check the urine metal levels after the first challenge and after about every 3 rounds of chelation. It may take as many as 12 to 24 cycles before all the mercury and lead have been removed. This would be particularly true if we have to start at low doses for your child. It is impossible to know what percentage of total body mercury is being removed at any given time. That is why we need to check the trends over time until we reach a stable and minimal amount of toxic metals in the urine. It is also reasonable to look at fecal levels, since much of the DMSA is eliminated that way. The research on comparing urine to fecal DMSA-mercury levels is still ongoing.
FYI: Aluminum is not well chelated by this protocol. It requires other means to be removed and we are still researching the best means of chelating aluminum in children with ASD. It appears that intravenous EDTA/Vitamin C with oral malic acid may be very helpful. The protocols for IV chelation in children with autism are still being reviewed and we hope to have future editions addressing these IV treatments.
Please Note: ANY SUPPLEMENT OR DRUG MAY CAUSE SIDE EFFECTS IN ANY GIVEN CHILD. PLEASE REPORT ANY ADVERSE EVENTS TO YOUR TREATING PHYSICIAN.
We hope this helps, but if you have questions please contact your physician.
My son regresses for 7-10 days after chelation- anyone seeing this?
by karen
No bad behaviors but gets very spacey and loses verbalization. He is non-verbal but was starting to say a couple of words. Now, after 4th cycle of DMSA he is much more quiet and cant get him to say words, just a little babble. I dont know if we should wait longer between cycles(we do 3 days on, 11 off) or cut dose. Any ideas?
This is common. I have my son on the 3 day on 4 day off, the regression is still there, but not quite as bad as the other protocol.
One thing you could try is Epsom salts baths or MSM. They both seem to help my son during the off cycles. Another thing that has helped him recently is Cranial Sacral therapy weekly and some that we do at home.
My son has a very rapid heartrate, hugely dialated pupils and slightly higer body temp while chelating. And the therapy helps to bring all these down.
Daniel gets very low doses. 12.5 mg dmsa and 12.5 mg of ala. he weighs 60lbs. I give him this dose every 4 hours beginning friday evening thru monday morning.
I think this way does not tax his body as the higher doses would. I continue giving the same suppliments thru-out off and on days. Except I give more vitamin c on on days.
He gets SNT, iron, magnesieum, zinc, pro-biotic, vit c, milk thistle, flax seed oil and vitamin A (clo).
On off days, we do cranial sacral with his therapist and I continue to do some thru out the week. He gets smalls amounts of msm and a couple of epsom salts baths per week.
My current cycle has been 3 weeks (three days on & 4 off), then 1 week off. (Just for a break) I run a urnine cycle on the third week.
Even with these low doses, we get metals out every round. They are NOT in elevated amounts, but are coming out. We are seeing improvements with every round.
Latest improvement this weekend is HIS EYES ARE GREEN AGAIN!!!! They have been a grey, green brown for years!!!
lab tests thru my GP, other than that, I check with Andy on the Autism/Mercury site with any questions I may have.
I started Daniel on the dmsa/ala combination when we began. We started on the low doses and maintained that. Regression was incredibly bad the first day, his attention span was about 5 seconds long. But ever since then it has been progressive each round.
CA, every 3 hours child diagnosed with autism-email Oprah May 1st
by Shirley
Hi. I'm trying to circulate this request.
Hey guys:
As many of you know, I am parent to a wonderful boy
with autism. I also hold several voluntary positions
with local committees dedicated to raising autism
awareness.
Autism is something that, if it doesn't effect you in
some way now (i.e. directly knowing an individual with
autism), it will within 5 years. The rate of autism
in California is such that a child is being diagnosed
EVERY THREE HOURS!
For this reason alone, we need to spread awareness.
It is our goal to have Oprah feature this topic.
On May 1st, 2001, we are asking that everyone to email
the Oprah show asking her to do this. Additionally, we
would like to suggest an autism book for her to
feature in her book club. We have nominated the book
"A Slant of Sun" by Beth Kephart. A review can be
found here:
The plan is for everyone to email Oprah on May 1st.
The reason for this is due to the great volumes of
mail she receives daily. If we all mail her on that
day, we are bound to make more of an impact.
Why that book? It is beautifully written, but it makes it sound like all you have to do is find the right play group. If I hadn't tried ABA or the diet because "they didn't feel right", my child would be far worse than he is today. Fine, that was her experience. But if we want to educate the world about autism, they need to know we need research and it takes a lot more than finding the right preschool. Most people need to try anything and everything that won't hurt their child. Our child had no signs of a milk problem (no ear infections) but antibodies of over 12,000 convinced us that the diet was right and it has been. Feelings may have worked for her child's program, but it won't for most.The diet might not work for some, ABA won't for some -- but let's not tell the world as a group that play therapy is the answer. It was for her - but that is going to be rare. Wrong book.
What is the 'right" dose and schedule of DMSA and ALA?
by
I am very confused about the right dose and schedule for DMSA and ALA I have the DAN protocol from December 2000, and I have not seen any update. Is there a better dosing regimen than that suggested by the DAN protocol? What is ther proper dose of DMSA and ALA? What is the protper ratio of DMSA to ALA? Also, should you start ALA right up front with DMSA or after some time? And what about N-acetyl cysteine? The DAN protocol receommends it, but I have heard otherwise. Does anyone have a handle on this? Thanks!
The schedule for DMSA is every three to four hour recommended by Andy Cutler. The schedule for ALA is every three hours. The schedule for both DMSA and ALA is every three hour. It is generally recommended that you start with DMSA. I believe that for DMSA it is recommended that you start at 1/4mg to 1/2mg per lb. So if your child weighs 40lb then you can start from 10mg to 20mg. I would go with the lower amount because each child has a different tolerance level. With ALA, it can be tricky. I would start with 1/4 to 1/8 mg per lb. My son weighs 40lb and I will start with 5mg. I am playing it safe. If I see that he reacts well then I will up it to 8 mg and continue until I reach 10mg because I don't want to go higher than ten. That's what I choose to do for my child. You will have to form your own strategy. Andy recommends that you start with DMSA and continue until you see no more progress. You then add in ALA. The one concern about DMSA is that it can lower neutrophil count. We need neutrophils because it is what the body uses to stop bacterial infections. It is uncommon but a possibility. Dr.Amy (I can't recall where I read it) said that she has yet to have someone tested for extremely low neutrophil count. The thing to do is watch your child carefully and if things don't look right stop giving the DMSA. ALA should not be given if you have high copper levels because it increases copper level and the child can become copper toxic and sick as a result. NAC is given if plasma cysteine is low. If plasma cysteine is high then it is highly advisable to stay away from high sulfur foods (NAC,garlic, onion, cabbage, etc..). I have seen people doing 2:1 (DMSA:ALA), 4:1, and usually a higher amount of DMSA to ALA. Some people just use ALA. You can read a lot more on the autism-mercury website or order Andy Cutler's book on chelation. It is very helpful and so is Andy. Hope this helps. Vicky
Thanks for your helpful reply. Hope you could answer some more questions. My son who is 30 pounds has recieved 5 rounds of chelation, with both DMSA and ALA right from the start (basically following the DAM protocol). He was started on 50 mg DMSA every 8 hours (150 mg/day) and 12.5 mg DMSA every 12 hours (25 mg/day). On cycle 3 of chelation I changed his DMSA dose to 25 mg DMSA every 4 hours, and kept the lipoic acid the same. My son has never been checked for cysteine levels and he was getting NAC with chelation.
My question is, knowing what you know now from your readings of Any Cutler's work, what would you do now with the dosing? Should I still be giving ALA? And if so, what about the dose? The smallest size I saw it in from Kirkmans is 50 mg. Would the proper dose of DMSA for my son? SHould I stop the NAC until we check his cysteine levels? Thanks for your help with htis!
I think that going slow is more important than anything. It takes the body awhile to heal and going slow will promote better healing. This is just my opinion but the final decision maker is you. I am going to tell you what I would do for my son. He weighs 35- 38 lbs.. I will start out giving him 15mg of DMSA every three hours (at night I will give every four hour). Andy says it is time to add in ALA when you don't see any progress from DMSA alone. I will not give my son more than 20 or 25 mg every three hour. That is my max. (BTW, kirkman's does have lower dosage you have to ask for it-I think they have 20 or 25? you will have to ask them). When I am ready to add in ALA I will start at 5 mg every three hour (along with DMSA) and gradual increase up to a max of 10mg per three hour. The mercury is coming out, it is just slowly. You can supplement NAC if your child has low plasma cysteine. If you have not noticed any negative reactions giving NAC it is probably safe. You should know if your child has high copper level because ALA drives copper level up. To treat high copper level you supplement with zinc. I give my son 40mg of zinc every night from kirkman's. He does not have high copper level, he is just low in zinc. To find out more about your child's toxicity you can have a hair test done at Doctor' Data. I am very glad you change your dosing schedule because from what I have been reading it's not safe and can cause more harm. Also if you want liquid ALA you can get it from www.brainchildsnutritional.com. One teaspoon equals 16mg. Hope this helps. Vicky
This past weekend beginning Friday after school, I chelated Daniel
with Kirkman's low dose DMSA/ALA. On Saturday, Daniel played with his
younger sister for over 2 hours in the sand box and playhouse.
Last night, I always go in his after he asleep and re-adjust his
covers. Well, he started to have a seizure like episode which lasted
about 3 seconds. He always shakes is he is disturbed in his sleep,
but this was really intense.
His school is reporting no more "intention tremors". We had sleep
deprived and 24 hours EEG's done (last one about a year ago) and
everything "was within normal ranges".
Anyway, could this be due to a large amount of mercury being dumped
into the blood stream?
It happened Sunday night about mid-night. It was no longer than his "ususal" seizure type episode just much stronger. He's fine - normal type regression between the rounds. I'm just gonna watch for a while.
He's getting up well. Eating well. Playing well. Asking incredible questions about things, sleeping well, no toileting troubles.
Stacie, I was just reaing a post on the autism-mercury website about some kids experiencing seizures while chelating. It doesn't seem to be too uncommon. I would go there and look up past posts about seizures and what the parents thought about it. Just do a search on seizures and the engine will pull up all discussions with seizures in the headings. There is a lot of information there to read that I think will help. You did not mention what kind of dosage you are doing, you might want to reduce it and see what happens. Vicky
Stacie, have you considered lowering the ALA dosage? You see, DMSA picks up the loose mercury in the body and ALA pulls the mercury from the brain, kidneys, liver and other parts of the body that has mercury in the cell. There might be a lot that is coming from the ALA? I don't know, I am just guessing. I have seen this recommendation before. If the child is experiencing problems then try lowering the dosages. The DMSA is very low. Maybe you should try 15mg of DMSA and 5mg of ALA. You can get liquid ALA from www.brainchildsnutritional.com. One teaspoon equals 16mg so you should be able to get 5mg. If you don't want to do this, you might up the DMSA to 15 or 20mg. How much does your child weigh? I would be more concerned about ALA than DMSA because from the thousand posts I have read I always see problems with too much ALA. Too much varies from child to child. One lady was giving her kid only 3mg per 3 hr. Her child just reacted strongly to ALA. Mercury causes seizure activity so if too much is coming out then that might be it. This is just a trial but could be well woth it. Hope this helps. This sometimes is just a trial and error process. Vicky
This is the first time he ever experienced anything like that. I think I'm just going to wait and see what if anything happens. I really feel like we got a good pull of mercury. He is fine. He has always done that at night, just not usually so strongly.
Daniel is 7 and weighs close to 60 lbs and has been taking both of these since November. I would of suspected if he had an ala problem long before this.
Thanks so much for your advise. I will strongly consider it, if it continues.
I think you should go there because they have a lot of people doing different things. You will get a more varied response instead of one person's opinion. The more responses you get the better a decision you will make. I might change my mind one month from now because of something that I read. Information changes, and sometimes it stays the same. So that's my last piece of advice, for now:). Vicky
(between you and me, Vicky's advice was right on target and cut through all the mounds of advice from the other group. She doesn't give herself enough credit)
lol--but I do frequent the other group and there ARE mounds of advice and information. Sometimes too much, because many people's views conflict. At first it was over there. I had to find one person who I trusted very much to help me, "cut to the chaste". And then I was able to use everybody else's ideas around that concept. I think Vicky gave you an excellent starting point.
today and she noticed that his heart rate was really fast and that he was slightly warm and that his pupils were huge! (all signs of mercury in the blood)...
Well after 20 minutes all these had deminished. His heart rate slowed and his body temp dropped and his pupils decreased in size. ...and he just laid there and never asked for a break. He loves it. And feels so good afterword.
This woman is incredible. I saw her degrees today. She is a homeopath md, crania sacral therapist by Uplengder (sp?), massage therapist, something else to do with breathing and was working with Daniel on different breathing techniques to do at home. One of them he had been doing on his own for years. (I have always felt these kids know what they need when the stim - I classified what he was doing as a stim)And going to some retreat in a few weeks - for Budism. (kinda wild). Anyway, I really, really like Janet and Daniel adores her!
She asked me went on this weekend. And I told her. She told me that she had worked with acute mercury tox people (hospital accident several years ago) and they presented the same sort of signs. It is really neat to find someone familiar with mercury tox....
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"
______________________________________________________
April 29, 2001 Search www.feat.org/search/news.asp
On the Burton Hearings. . .
* Autism Alarm Sounded In D.C.
* MMR Shots Under Fire at Autism Hearing
* Recall of MMR Vaccine Urged Citing Autism Risk
The US House of Representatives Committee on Government Reform held two days of hearings during which concerns about autism and related neuro-developmental disorders were addressed. This hearing, titled "Autism: Why the Increased Rates? One Year Later, an Update" took place on Wednesday, April 25, and Thursday, April 26, with Chairman Dan Burton as well as others of the Committee hearing testimony on the potential dangers of vaccines and their connection to the increase in neurodevelopmental disorders noted over the last decade.
Among those speaking at the hearing was Andrew Wakefield, MD from the Royal Free & University College Medical School in London, England; Karen Mithune, Director of the Center for Biologics Evaluation Research of the US Food and Drug Administration; Walter Spitzer, MD, MPH, Professor Emeritus of Epidemiology and Biostatistics at McGill University in Montreal, Canada; David Amaral, PhD, Professor of Psychiatry, Beneto Foundation Professor, and Research Director of the M.I.N.D. Institute at the University of California Davis; Coleen Boyle, Ph.D., Chief of the Developmental Disabilities Branch in the Division of Birth Defects, Child Development, and Disabilities and Health at the Centers for Disease Control in Atlanta, Congressman Michael F. Doyle of Pennsylvania and other distinguished experts and guests.
The text of some of the presentations will be posted in the FEAT Daily Newsletter over the next week. Below are some of the media accounts reporting on the hearings.
Phoenix physician Cindy Schneider told a congressional committee Wednesday about the help she and her husband received six years ago, when their two young children were diagnosed with autism.
"We were left with a diagnosis and no more: no treatment, no plan of action, no hope," said Schneider, who gave up her medical practice to work
on autism, a developmental disorder that repeatedly was described as an epidemic during a hearing of the House Committee on Government Reform.
Committee Chairman Dan Burton, R-Ind., who has an autistic grandchild, sounded an alarm about the disorder, which can wreak havoc not only on the personality and behavior of a previously normal child but also disrupt the life of an entire family.
"Autism rates have skyrocketed,"said Burton, noting that even according to conservative estimates 1 in 500 U.S. children is autistic.
Rep. Christopher Smith, R-N.J., said the number of children diagnosed as autistic in New Jersey schools jumped to 2,354 in 1999, from 241 in 1991.
He expressed dismay at the federal response to the problem, which some believe is the result of environmental and genetic factors.
"I was amazed, shocked, dismayed and saddened at how little the Centers for Disease Control and other organizations knew about autism," said Smith, co-founder of a 114-member congressional caucus formed to support work on the disorder.
Caroline Champlin, a spokeswoman for the Arizona Department of Economic Security, said the number of people classified as eligible for autism services has risen in four years to 977, from 614.
While many experts say the numbers of autism cases speak for themselves, others caution that they also may indicate that a growing awareness of the disorder has led to more frequent diagnoses.
Several witnesses - most of whom are conducting autism research - spoke disapprovingly of media accounts of this week's report by a committee
of the U.S. Institute of Medicine on the possibility of a link between autism and a childhood vaccine for measles, mumps and rubella, or MMR. The Institute is considered to be the Supreme Court of medical disputes.
The committee found that "the evidence favors rejection of a causal relationship." It also recommended that there be no changes in current
vaccination procedures intended to immunize children during early childhood.
Schneider said in an interview that she thinks parents should be allowed to chose whether to have their children vaccinated for measles, mumps and rubella.
Agreeing with several of Wednesday's witnesses, she said some children apparently have a genetic predisposition to immune system disorders that
cause autism by attacking the brain and digestive system. *
MMR Shots Under Fire at Autism Hearing
Lawmakers Dispute Accuracy and Fairness of New Vaccine Report
Washington -- A report that virtually cleared the measles-mumps-rubella vaccine as a possible cause of autism came under withering attack on Capitol Hill Wednesday, with legislators questioning the document's accuracy and integrity. Chairman Dan Burton (R-Ind.) of the House Committee on Government Reform said the analysis was a "disservice to the American people."
The study, which was published Monday, said that the universally used preventive shot apparently doesn't cause the incurable brain disorder.
Still, the panel of experts assembled by the National Academy of Sciences' Institute of Medicine (IOM) couldn't completely rule out the link between the disease and the vaccine in a small number of children. The ambiguity of the findings infuriated Burton, who is holding two days of hearings this week on the skyrocketing rate of autism in the United States.
"You put out a report to the people of this country, saying the [MMR vaccine] doesn't cause autism ... and then you've got an out in the back of
the thing, and you can't tell me, the committee chairman, under oath, that there's no causal link, because you just don't know, do you?" Burton asked
Marie McCormick, MD, ScD, of the Harvard School of Public Health and IOM panel chairwoman.
"I don't know," responded McCormick after saying earlier that the door was still open and that the theory had not been disproved. Her brother, coincidentally, has two autistic children.
It's estimated that the number of children affected by this condition has grown from 4 per 10,000 five years ago to one in 500 children today. The
symptoms range from violent behavior to total withdrawal.
Burton's grandson Christian reportedly developed the disease after receiving vaccines that are routinely recommended by federal health officials. And the public figure has adopted the vaccine safety issue as a political and personal crusade.
The congressman was also angered that two of the report's reviewers are believed to have had financial ties to the pharmaceutical industry. The IOM's committee on immunization safety was created as an independent body without conflicts of interests.
Susanne Stoiber, the IOM's executive officer, said the reviewers only offered suggestions. They didn't change the report's basic conclusion. "To
the best of our knowledge, aside from the fact that [the reviewers] may own mutual funds that hold pharmaceutical stocks, there is no reason to believe
that there are any financial ties," she said.
Nonetheless, Burton insisted on seeing the financial records of the vaccine committee members, as well as the reviewers. He vowed to use his subpoena power if necessary.
Andrew Wakefield, MD, also testified at the hearing. The English scientist has his own theory about the relationship between the shot and autism. His studies of a small number of children suggest that a double-dose of the vaccine could lead to a low-level measles infection. He believes the measles virus could cause a leak from the bowel into the general system and ultimately the brain, causing a toxic reaction, in susceptible children, that could lead to autism.
Wakefield says the IOM panel requested information on his observations in a closed session, but it didn't wind up in the final report. At the time,
his latest studies were still being reviewed for scientific publication, so he couldn't present them in public. When asked at the hearing if the MMR vaccine is as safe as it can get, he responded, "No, absolutely, not." But Wakefield was contradicted by another English scientist, Elizabeth Miller, MD, head of that country's Public Health Laboratory Service. Her
studies show there has not been an increase of such problems in the U.K. since the vaccine was introduced there.
"I don't think it would be profitable to hijack the research agenda to concentrate on answering [Wakefield's] question, which is derived basically
from speculation ... and ... unpublished evidence," she says.
Burton raised additional concerns that some of the information clearing the vaccine in the IOM report came from Merck, the product's manufacturer.
During the hearing, several physicians whose children have autism told the committee about their ordeal. One of them is Sharon Humiston, MD. A former immunization scientist for the U.S. government, she says she doesn't believe that the MMR vaccine was responsible for her son Quinn's disease. But she's desperately looking for answers, particularly to one heartbreaking question.
"What is going to happen to Quinn after [my husband and I] die? What are we going to do now to help?" she asked tearfully.
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Reuters Health - The chair of the House Government Reform Committee Thursday blasted federal science and health officials for not recalling the
combination measles, mumps, and rubella (MMR) vaccine that he says may be causing autism.
An Institute of Medicine (IOM) panel earlier this week issued a report concluding that there is no causal connection between the vaccine and an increased risk of autism in children (see Reuters Health report, April 23).Still, Rep. Dan Burton (R-Ind.) confronted officials from the Food and Drug Administration, the Centers for Disease Control and Prevention, and the National Institutes of Health over the vaccine. The vaccine contains thimerosal, a preservative in which mercury is an active ingredient.
The FDA has said that future lots of MMR vaccine will contain no thimerosal, or only trace amounts, as a precaution geared toward reducing overall mercury exposure in children. The NIH has just begun a 2-year,
10-center trial looking at blood and urine mercury levels in children who receive the vaccine.
But Burton expressed outrage that the agency is
allowing two lots of thimerosal-containing vaccine--thousands of doses--to go to market before mercury-free vaccine is produced. "If there's any doubt whatsoever...and you're taking mercury out as a precautionary measure, then why in the heck don't you get that stuff off the market?" he asked.
Dr. Karen Midthun, who directs the FDA's office of vaccine research and review, told the committee that the agency lacks the authority to force a recall of vaccines unless it can verify that the product represents a clear and imminent threat to public safety.
"The preponderance of the evidence finds no causal relationship between vaccines and autism," she said. The FDA contends that the premarket testing required of all vaccines before sale to the public showed no increased risk of autism in children who received the MMR vaccine.
Dr. Midthun and others told the committee that the benefits of the MMR vaccine and other childhood vaccines in preventing infectious diseases far outweighs the chance that the immunizations increase the risk of autism. They said that pulling available MMR doses from the market would cause shortages of available vaccine and would also increase public concern about the safety of immunizations.
Burton called attention to his grandson, who he says developed autism shortly after receiving recommended vaccination shots.
"If you [at the federal health agencies] think this issue is going to go away, you guys are blowing smoke. If the health agencies don't deal with this and deal with it quickly, you're going to have a big problem over there," he said.
_______________________________________________________
Lenny Schafer, Editor Catherine Johnson PhD Ron Sleith Kay Stammers
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"Healing Autism: No Finer a Cause on the Planet"
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April 29, 2001 Search www.feat.org/search/news.asp
Significant Medical Findings
Also: NGF Proteins Present At Birth Linked To Later Autism
Autism Gene Discovered
Gene Links Autism To Bipolar Disorder And Schizophrenia, Offers Hope For Treatment
In a surprise finding from an international research team led by researchers at the Campus BioMedico University in Rome, Italy, Drs. Flavio Keller and Antonio Persico announced the discoveiy of a gene that may increase the risk of a child's developing autism three-fold. The gene, which produces the protein reelin, has recently been associated with bipolar
disorder and schizophrenia. The reelin gene is known to be involved in per "lamination"-or layering-of brain cells in utero. But unlike many developmental genes, the reelin gene continues to be expressed throughout life, potentially giving the phannaceutical industry its first "target" for an autism medication. If reelin proves to be important in autism, pharmacologists can attempt to create medications that
manipulate reelin activity in the brain.
Researchers do not know what function the protein performs in the postnatal brain. Some believe it is critical to neural plasticity and learning.
The finding surprised observers because the Italian team was not studying reelin. As part of a larger study of autism and serotonin, they were attempting to replicate work by Karl Reichelt of Norway finding an abnormal presence of peptides-small pieces of proteins-in the urine of autistic children~ But Keller and Persico could not find Reichelt's peptides in their subjects. When Dr. Reichelt supplied his original samples for re-testing, two laboratories were unable to identify the peptides in Reichelt's samples, either.
For most researchers the study would have ended there. But it didn't. While waiting for the third and final set of lab results, Keller and Persico-convinced the peptides had to be present-hit upon the idea of checking them against the vast library of known human proteins. When they found that the only protein containing both peptides was reelin, a protein involved in neurodevelopment, they knew they had struck gold. Because the gene for reelin is known, they could examine it in people with autism. Twenty percent of their autistic population, they discovered, carried extra-long versions of the gene. The long variant would be expected to result in a reduction of reelin in the brain.
The findings, published in the March issue of Molecular Psychiatry, represent the second autism gene to be reported in a fOur-month period. "This is an unprecedented rate of progress for a complex disorder," said Dr. Eric London, Director of Medical Affairs for the National Alliance for Autism Research, which funded the research. "Geneticists estimate as many as 15 different genes may put children at risk of developing autism. To have two strong gene studies published in four months is nothing short of miraculous."
The National Alliance for Autism Research was founded in 1994 to fund biomedical research into the causes, prevention, treatmfnt and cure of autism and related disorders. Since 1997, NAAR has committed more than $3 million in grants to 50 scientists in the United States, Canada, Italy, Spain and Russia. This year alone, NAAR committed more than $1.5 million in
research grants to 20 scientists in the United States and Europe. For more information about NAAR and autism, please log onto NAAR's website at www.naar.org. *
Reelin Gene Alleles And Haplotypes As A Factor Predisposing To Autistic Disorder (Abstract)
AM Persico, L D'Agruma, N Maiorano, A Totaro, R Militerni, C Bravaccio, TH Wassink for the CLSA, C Schneider, R Melmed, S Trillo, F Montecchi, M Palermo, T Pascucci, S Puglisi-Allegra~ KL Reichelt, M Conciatori, R Marino, A Baldi, L Zelante, P Gasparini and F Keller
Molecular Psychiatry
Autism is viewed as a complex neurodevelopmental disorder. Reelin is critically involved in the development of many brain regions displaying alterations in autistic patients. The authors have identified a repeated GGC sequence in the gene encoding Reelin that might affect gene expression. This GGC stretch is "polymorphic", meaning it differs in length among different individuals. Approximately 90% of the general population carries either 8 or 10 GGC repeats. Interestingly, longer variants encompassing 11-23 GGC repeats are found in as many as 20% of autistic patients, and inheriting a "long" allele leads to a three-fold increase in risk of developing autism.
This finding represents the first genetic factor consistently predisposing to autism in several distinct patient sam ples, and links autism to a plausible neurodevelopmental mechanism. Although "long" reelin gene alleles characterizes only 20% of their patients, this result fits exactly with expected single gene contributions to a complex disorder, such as autism.
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*
Reelin: What It May Mean For Autism
1. The reelin gene is both a housekeeping gene and a developmental gene. Developmental genes operate in the womb. A developmental gene directs the development of some aspect of the body or brain, and then turns off.
Developmental genes do not operate in the child or adult (although "reactivated" developmental genes may be involved in cancer in adult life-) Housekeeping genes operate in the here-and-now. Housekeeping genes are the body's "operating system": everything we do, think, feel or say is carried out by housekeeping genes. Because housekeeping genes operate in the present, they may be easier to treat. Defects in developmental genes often result in structural defects, or differences, in the body or brain. Patty Rodier's work on the HoxA gene, which is involved in very early development of the brain stem, implies that autistic children aie born with a structural difference or defect in the cerebellum. Structural defects or differences can be treated chemically. Parkinson's disease, in which dopamine-producing cells in the sub stantia nigra progressively die off, can be treated in the early stages with the medication levodopa, or L-dopa, which the brain uses to make dopamine. Put very simply, structural differences naturally result in biochemical differences. Pharmacologists develop medications to treat the biochemical difference.
And, of course, stem cell researchers hope one day soon to be able to replace missing or damaged cells with new and healthy cells.
Nevertheless, many or perhaps most autism researchers hope to discover that autism results largely from differences or defects in housekeeping genes. A defect or difference in a housekeeping gene creates a biochemical difference, such as low levels of synaptic serotonin in clinical depression, for instance. Pharmaceutical companies know a tremendous amount about how to create medications that "up-regulate" or "down-regulate" chemicals and their functions in the brain and body.
If the association between Keller's reelin "allele" and autism is replicated-and if researchers find evidence that the reelin allele causes autistic symptoms-pharmaceutical companies can develop a medication to manipulate reelin function in the brain.
2. Dr. Keller reports that the reelin protein in autism should be normal. The problem should simply be reduced levels: too little reelin.
3. Some researchers believe that reelin is important to learning and memory. If true this would obviously be highly relevant to the treatment of autism. (Reelin research is so new that a parent who did a Medline search found that every abstract on reelin had been published within the past 6 months. It wasn't until recently that researchers knew the reelin gene continued to function throughout life.)
4. In post mortem studies of autistic brains, researchers at the University of Minnesota (Fatemi, et al) found a 43% reduction in reelin levels in the Purkinje cells of the cerebellum compared to non-autistic brains. Because researchers suspect that many or most people with autism have reduced numbers of Purkinje cells, Fatemi's finding may raise the possibility that a reelin medication could benefit many people with autism, whether or not they have the particular reelin gene variant Keller has identified.
5. The reelin receptor, or part of it, is also the receptor for low density lipids (or "bad" cholesterol.) Clarence Schutt, Ph.D., chairman of NAAR's board of trustees, Director of the Graduate Program in Molecular Biophysics at Princeton University, interprets this to mean that autism could prove to be a cholesterol disorder. It's possible.
6. Keller's reelin "allele," or "variant," is a normal version of a normal gene. Ed Cook, M.D., of the University of Chicago, conservatively estimates that at least 50% of the population carries autism genes. (See http://www-psy.bsd.uchicago.edu/--student/ldn.html) In a recent lecture Ian Lipkin, M.D., an authority on chronic nervous system disorders and their links to infections agents such as viruses or bacteria, told audience members that 100% of the population could logically carry one or more autism susceptibility genes.
7. A team at the University of Illinois has found reduced levels of reelin in schizophrenia and bipolar disorder. This is intriguing in light of the strong association of bipolar disorder and autism in population studies. Robert DeLong, M.D., of Duke University, has advanced the hypothesis that autism is a "phenotype" of the genes for bipolar disorder when they are expressed in infancy. In other words, when the genes for bipolar disorder become active at birth the individual becomes autistic. When the genes are not expressed until late adolescence the individual becomes bipolar. Both autism and bipolar disorder are phenotypes of these genes.
See also: http://www.uic.edu/depts/paff/opa/releases/2000/schizo_release.html *
NGF Proteins Present At Birth Linked To Later Autism
A new study shows that elevated concentrations of proteins present at birth in the blood may be associated with the development of autism and mental retardation later in childhood.
The identification of a biological marker early in life and before the onset of symptoms could lead to earlier and more definitive diagnoses, better clinical definitions, and the discovery of interventional therapies for the disorders.
Investigators at the National Institute of Neurological Disorders and Stroke (NINDS), the March of Dimes/California Birth Defects Monitoring Program and the MIND Institute at the University of California, Davis, collaborated on the study, which will appear in the May 2001 issue of the Annals of Neurology.
The investigators examined and compared archived neonatal blood samples from children born in four northern California counties from 1983 to 1985 who later developed autism, mental retardation, cerebral palsy or developed normally.
The investigators measured concentrations of several neural growth factors and found that the growth factors were significantly elevated in the neonatal blood of children who later developed autism or mental retardation, but not in the blood from children who developed cerebral palsy or blood
from the normal controls.
"Finding that major regulators of brain development were different in children with autism from normal controls in the first days of life opens an exciting new avenue of research," says Karin B. Nelson, M.D., Senior Investigator in the Neuroepidemiology Branch of the NINDS. "We think this work will be a step to better understanding the biologic basis of autism and hope it will lead to better ways to treat and perhaps prevent autism."
"We have these promising new results because the California Department of Health Services had the foresight many years ago to save specimens from the newborn screening program," added study co-author Judith K. Grether, Ph.D., of the California Department of Health Services. "This archive of newborn blood specimens is an incredible treasure, providing a tremendously valuable resource for scientific study of a wide range of developmental disabilities and birth defects."
Neural growth factors are important to the formation of the central nervous system during embryonic development. Previous research shows that many of these growth factors play a vital role in the production of new brain cells and the organization of those cells into distinct networks.
The investigators hypothesize that an abnormal abundance of these proteins may disrupt the normal process of cell migration, differentiation and programmed death during early nervous system development. Animal studies have shown that an early shortage of one of these proteins leads to microcephaly and other developmental problems.
The investigators speculate that a breakdown in the regulation of factors that influence early brain development is important in autism and mental retardation.
Since these disorders cannot be clinically diagnosed until later in childhood, the identification of molecular markers could be helpful in the early diagnosis of the disorders and in the design of future clinical studies to test therapies.
The researchers plan to continue their work to further elucidate the biological and genetic mechanisms that underlie the development of autism and other developmental disorders.
Autism is a pervasive developmental disorder that affects approximately 10 to 20 people in every 10,000 and affects males about four times more frequently than females. Symptoms of autism may surface in children around the age of 2. People with classical autism show three types of symptoms: impaired social interaction, problems with verbal and nonverbal communication, and unusual or severely limited activities and interests. People with autism may also show abnormal responses to sensory stimuli, such as touch, sounds and sights. Twin studies suggest that autism has a strong genetic component.
Mental retardation is a term that is applied to people who show significantly delayed or impaired mental, intellectual, and social development. People with mental retardation generally score below 70 points on an intelligence quotient (IQ) test and have trouble adapting to complex social situations.
Cerebral palsy is a term used to describe a group of chronic disorders caused by faulty early development of or damage to motor areas in the brain. Symptoms of cerebral palsy include difficulties with control of limb movement. Some people with cerebral palsy may also have mental impairment.
(Reference: Nelson, K. B.; Grether, J. K.; Croen, L. A.; Dambrosia, J. M.; Dickens, B. F.; Jelliffe, L. L.; Hansen, R. L.; Phillips, T. M. "Neuropeptides and Neurotrophins in Neonatal Blood of Children with Autism or Mental Retardation." Annals of Neurology, May 2001, Vol. 49[5], 597-606.) NINDS is part of the National Institutes of Health in Bethesda, Maryland.
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Dan Burton did his usual exceptional job of bring to light that the female doctor from England (forgot her name...short term memory again) who had a part in the IOM study, did have (she said some) of her research funded by the Pharmaceutical companies. Are we surprised? He did point out to Waxman how much Mercury (Thimerasol) the children were getting in accumulated vaccines administered in one office visit.
I was also grateful to be able to attend the first "Congressional Autism Caucus" There were many speakers but it sounds like Chris Smith Representative from NJ, along with Diane Zager, Ph.D and Nancy Wiseman along with others who are determined to educate the Pediatricians by sending out screening kits which will include. An Educational Video A developmental milestone chart Validated screening tools for developmental and autism screening Guidelines to assist physicians and their staff with the screening process And an Early Intervention referral guide.
This is Good...so that Doctors don't ask parents when they have concerns as I did "Is he eating his vegetables"
There is so much more that they want to do and are immediately implementing it in NJ first. PLEASE, if your Congressman has not joined the Autism Caucus please go to him now respectfully or write/fax and ask him to join so that we can get this implemented all over the U.S. and maybe internationally someday.
I could not help but think of Andy many times when in D. C. because he is always telling us that that's where the changes can be made. And he is soooo right.
Unlocking Autism did a great job with the conference and they all worked so hard. It was great to meet so many I have known only by their type. My only disappointment was in that I didn't meet any from this list. Too many home chelating(smile)
I'm exhausted now and on kid patrol. I'll try and post more later during the week.
Hello friends of the autism community. Please, if you get an opportunity, read the article and what Carol says that we can do to help this family. They are from another culture, and I think the system is really railroading them. Circulate this to others that you think will help. This could be our child next. My son does many of the things that this little girl got taken out of her home for.
I spoke to Lyda Astrove, the attorney for the Chang family last night. She said the best way we can help is to all write letters to Montgomery County Department of Health and Human Services, Chuck
Short, director, 401 Hungerford Drive, Rockville, MD 20850, and urge that in-home wraparound services be made available to families of children like Jessica.
She also said: "We will also be looking for any either education professionals, psychologists, or people who could serve as expert witnesses who could donate their time....these people aren't rich by any means...." Perhaps some of you fit this description, or know someone who could help.
How about it? Can we get a letter-writing campaign going?
Carol
-------------------------------------------------------
Autistic Girl Unsafe At Home, Judge Says Md. 11-Year-Old Ordered To Group Home in Fight With School District By Manuel Perez-RivasWashington Post Staff WriterFriday, April 27, 2001; Page B01
A Montgomery County family yesterday lost its bid to keep an 11-year-old autistic daughter at home after county social workers convinced a judge that the girl would be safer, at least temporarily, in a group home.
The case involved no allegations of child abuse or neglect. Rather, it grew out of a years-long struggle between the county school district and Caleb and Ann Chang over the best treatment for their severely disabled child.
Social workers said Jessica Chang could injure herself at home and should go, instead, to the live-in facility that the school district wants her to attend.
But an attorney for the Changs said the school district and the county were overstepping their bounds and infringing on the parents' rights.
"Does the county have the right to remove her from the home simply because she's severely autistic?" Lyda Astrove asked outside the courtroom. "Are they making a value judgment that she's so autistic that the parents can't possibly take care of her?"
Ultimately, Montgomery County District Judge Stanley Klavan said he had to make the "safe choice" and ordered that the girl be temporarily placed at Community Services for Autistic Adults and Children, a residential facility in Rockville. A full hearing has been scheduled for June.
"I find that this young girl is very, very ill. I find that she, in a split second, could do something that is irreversible," Klavan said. "My sympathies go out to this family. They are nice people. They've done nothing wrong. Nobody's accusing them of doing anything wrong."
Jessica Chang was taken from the courthouse by social workers as tears welled in her mother's eyes. Klavan allowed the parents liberal visitation.
Jessica, diagnosed with autism and mental retardation at age 3, lives in a constant whirl of motion. She knows few words of English, communicating better in Mandarin, and has little appreciation for danger.
A county social worker testified that Jessica has shown multiple signs of self-injurious behavior in previous contacts with county officials, including eating inedible objects, throwing things randomly, climbing onto window sills, and touching herself inappropriately. Claudia Segal, the social worker, said the Changs' North Potomac home -- where the girl has lived most of her life with her parents and three siblings -- did not provide a stable, secure environment to ensure her safety.
The Changs, both Taiwanese immigrants, acknowledged that Jessica has been hurt at home -- including once when she fell out of a second-floorwindow at age 4, and was hospitalized with minor injuries -- but they said she is better off with them than in a residential program.
Twice they have tried group homes. They say she was poorly cared for in them.
In addition, they said, she reacted badly -- injuring herself by rubbing the skin on her face raw, scratching her hands, and tearing her underwear and shoes -- during a recent eight-month stay at the Kennedy Krieger Institute in Baltimore, which runs a hospital for children with neurological problems.
In court, Segal said Caleb Chang had agreed to place the girl at the Rockville center for the autistic when she was admitted to Kennedy Krieger. When the family did not take her there Monday, child welfare officials stepped in and issued an authorization for emergency shelter care, which led to yesterday's hearing.
Caleb Chang said he did not agree to placing his daughter in the 24-hour residential program. In court, he said, years of bad experiences have led him to not trust the county bureaucracy in making good decisions about his daughter.
"They want to keep their family together," Astrove told the court.
The Changs would like Jessica to attend a private or public school for the disabled and be able to stay home with her family. Ideally, they would like the county to provide her with in-home caretakers.
Before the hearing, Astrove said the county stands to save money by placing Jessica in the residential facility, rather than paying for a private day school and aides at her home. School officials said the live-in facility was more expensive than the day school, but did not include the cost of at-home aides, which the county provided the Changs for years.
Officials said the girl did not show progress with the at-home services and continued to show signs of injurious behavior. The aides were dropped in 1999, and school officials said Jessica's developmental needs would best be met in a residential program so she could receive constant treatment.
Agnes Leshner, the manager of Montgomery County's Child Welfare Services, declined to comment on the case. But, generally, she said, the agency bases its decisions on whether to pursue out-of-home placements on safety. "Is the child going to be safe in that home? That's the guiding principle," Leshner said.
Tom Urban, founder of the Fairfax-based Parents for Autistic Children's Education, said yesterday that such removals are unusual and need to be weighed carefully.
"The problem is professionals don't give parents enough credit in knowing what their child needs," said Urban, who has a 7-year-old autistic son. "Too often, judges give way too much deference to professionals and don't really listen enough to parents."
Staff writer Michael E. Ruane contributed to this report.
Hi,
I have started my son Ty, 2.9, on the GFCF diet almost 2 weeks ago...Everything I've read said to gradually eliminate these foods. In a couple of days we will be totally on the diet. I located a DAN doc and was able to get in with him very quick. Today we went and he automatically says we need to detox of the mercury due to all of my dental history....gave us NDF Plus drops to use twice a day for 5 weeks. Also a kidney and liver aid to help with flushing out his system. Also gave me DMG with Folic. I DID NOT EXPECT THIS....I thought procedure was to follow the diet for awhile, then have some peptide testing, yeast, etc. Like I said I've only been doing the diet 2 weeks.... I'm scared to death. Do doc's just start you off with mercury detox this quick???? What's your opinion??
Wow. all that at once. No way would I even consider beginning that many things on my child at one time. Personally, I would run!
First things first. You have started on a gf/cf diet. Good for you. Your child's body will begin the healing the process.
You really NEED to begin treatments one at a time. Because if something doesn't work, you will know immediately what it is.
Next, study what chelation is. That doctors protocol does NOT sound safe. It is NOT even close to the DAN or Amy Holmes or Andy Cutler's protocols.
A hair analysis needs to be done -You really should know what your child is toxic in and what his essential elements are like and apply them to Andy's "counting rules". vitamin and minerals suppliments need to be administered at least several weeks before beginning.
There are other tests that could be run, if needed. Please, please read about chelation berore beginning. don't just "jump in". and never start more than one treatment at a time. It is not safe.
Andy's site is the Autism/Mercury board on e-groups. Andy is absolutely wonderful about helping. URL is down below in one of Fatima's letters.
Best wishes, whatever you need we are here to help. And welcome to the board.
I really appreciate your response...I knew in my gut this was not right and one day later and $650.00 later, I am definitely not going to start this (He did not even recommend a hair sample) I can't beleive he operates this way. He is 1 out of 2 DAN docs here in Houston. Now I really don't know where to turn! I expected to get suggestions on vitamins and minerals. The only thing he gave me was DMG, which to my understanding I should begin with SNT first before anything. Any suggestions? I guess I could try the other DAN doc and hope he's not a quack!
Sheri
I started with lots of research on various things. Mostly vitamins. I began Daniel on Vitamin A (clo), this did wonders for his gut. Within a week, he was telling me that his belly was feeling better. Within 2 weeks, he completely potty trained himself.
by the way, Daniel is now 7.
Within three weeks, he was sleeping all night!!! I kept him on this for a month before putting him on SNT. With his gutt somewhat healed, he would be better able to absorb the vitamins.
By august I had my GP convinced that vitamins can and do help. He was totally amazed at Daniel's behavior, his skin color looked better. We decided then to go for a hair anaylsys.
When the hair anaylsys came back, I told my doc what I was going to do. Chelete with Kirkmans's low dose dmsa and ala mixed. I first began supplimenting with Milk Thistle - helps the liver. I added a little extra iron and vitamin c for 2 weeks before beginning.
Daniel is slowly improving in some areas, but speach has made a remarkaable increase!!!
We chelate on weekends only. Fri-day evening thru Monday morning. When I run urine test it is Sunday. We go three weeks on and a one week break.
Hi Sherri,
It's best if you spend a few months reading up on chelation and all the necessary preparations. If you goto to the autism-mercury website you will find a wealth of information and people who are more than willing to help you start. I also recommend getting the Andy Cutler's book on chelation. It will be hard to find a doctor who is knowledgeable on this stuff. The only one I can think of is Dr.Holmes in Baton Rouge so the more you know the better your child will benefit. It is alot at first but you will gain a lot of information that will help. Hope this helps. Vicky
I wanted to add that I had a DAN doctor that wouldn't consider chelating last fall. He never wanted to do things that matched what other parents and doctors were doing either.
We switched our insurance to an HMO around the same time so everything has to be referred to by our main pediatrician. She is very very mainstream and won't consider chelation.
So we are stuck until next Jan. when we can change our insurance again.
So, I did research and I'm chelating based on what Dr. Cutler's recommendations are on the other board. I also strongly consider Dr. Holmes protocol. It took some trial and error, but I feel that we are on the right track right now.
The DMSA can be ordered without an RX at www.vrp.com and the tests can be ordered at http://healthchoice.net (they don't required a doctor's signature there, they have doctors that will sign for it and interpret it, if you need it)
I think that sometimes the parent has to make an informed choice and take over their child's case. (within safety limits, naturally)
To Stacie (or others interested in cranial sacrial therapy)
by Shirley
Hi Stacie! Hope all is well!
Today we took Troy to get cranial sacral therapy. I'm not sure if it was the "real thing". The therapist at the place I went to was wonderful. She told me that he had a headache when she was working on him. And it was a bad one. She explained how she could tell. He surprisingly sat very still for her. Not at first, but more and more. Then she moved onto his feet and did reflexology, which, I believe is more her thing. She was able to tell us where his digestive problems were the most. His ankles needed adjusted because he walks on his toes and she did them. He was very relaxed while she did his feet. She also told me that he was extremely tired. (which he does tend to be either lethargic or hyperactive...2 gears only)
The cranial sacral therapy looked more like an intense head massage. What did yours look like?
Afterwards we took him to a playland and he was very happy. She said that while dextoxing (chelating) he will have alot of headaches. I've told everyone that I've thought he's had headaches for awhile, so I don't doubt her. He seems so much more relaxed and happy. And NO signs of a headache. He has been very affectionate and has good eye contact. (but those are his strengths anyway, considering his autism)
I copied a post about how to measure the proper amount of ALA....
by Vicky
Thought you would like to know this also. I saved this for me for future reference. One tsp equals 16 mg ALA. (According to a standard conversion
chart one 8 oz bottle contains
48 teaspoons. At 16 mg per teaspoon, that's 768 mg in the whole bottle). So if you want to give 8mg then you give half a teaspoon. Hope this helps. Vicky:)
I should recieve it by Mon for next week's cycle...
by dlo
My daughter is about 56 lbs so I will be giving the 16mg. Too bad the bottle isn't a bit larger.*G*
I would have ordered two but I want to see how my little girl likes it first. She has what I call hyper taste buds. My little boy doesn't have a problem with the capsules in applesauce or cereal but there is no way my girl is gonna take it, so I hope this will work.
We are going to try this route but I was told not to let him eat for 1 hour before and 2 hours after DMSA so it is not absorbed by food. How do you have time to eat on this schedule?
I mix the dmsa/ala with juice and I don't worry about the food. But to be honest with you I would rather him have food in him than on an empty stomach.
I've been hearing a lot about melatonin and seizures. My son has never had any but I am nervous about continuing with melatonin. We've been giving it to him during chelation. He has been sleeping terribly during this cycle of DMSA. Is it safe to stop the melatonin during chelation or do they need it to help pull the metals out?
karen
Did your child fit into the counting rules before chelation start?
by fatima
Did your children meet one or more of the counting rules criteria? was it a decisive element in your decision? Did any of you start to chelate with no mercury in hair or outside counting rules criteria? My boy meets one of the criteria. What do you think about it?
Fatima
Fatima, if memory serves me right, you just need to match one of the rules. I will double check and if I am wrong then I will repost a correction for you. Vicky
had a very low amount of mercury showing on hair test even though it had been over 3 years since exposure via vaccine. I am guessing that the vitamin A (clo) was pulling it from his gut or the Ease cd may have pulled a little from his brain. What-ever it was, it did rear it's evil head on the test. Lead was high, so was arsenic, alinimum, antimony, tin, and several others were in elevated amounts.
Most of his "essential elements" were extremely high while several were so low they were off the charts.
His doc put "lead toxicity" as official diagnosis to get insurance to help pay for some of the lab work, etc.
My decision to chelate was based on the fact that he has so many elevated metals. The essential elemants can be dealt with via suppliments, but it was good nowing what he is low in, and adjusting his diet to help with some of the ones that are high.
I found this about DMSA in page 3 of the archives ...
by dlo
This is great because according to this DMSA does remove mercury from the brain.
Chelation of Mercury from the Brain
In rats following intravenous administration of methyl mercury DMSA was found to be the "most efficient chelator for brain mercury."51
In another animal study DMSA was given four days after methyl mercury injection in mice and continued for eight days. DMSA removed two-thirds of the brain mercury deposits NAP removed approximately one-half while DMPS did not remove significant amounts of mercury from the brain.44
DMSA has also been used effectively in arsenic and cadmium poisoning.2 3 53
Vicky, I loved your apple analogy--I hope you don't mind if I ever have to borrow it.
DLO--I was hoping that you would post and let us know how the chelation was going. I'm so sorry this weekend flopped. My first weekend did too for the same reason. Only I was using DMSA only at first.
About this clip on DMSA--it says following intravenous administration of methyl mercury DMSA--which is IV. And we don't use methyl, Ours is sulpher.
I'm glad you are going to order the DMSA. The DMSA makes my son very happy and fun. The ALA just stirs things up and makes him crabby and out of sorts. I keep lowering the dose to find one suitable for him. I was planning on chelating this weekend, but his eyes have been dialated and driving him nuts. (too many apples at one time) So, I'm keeping my fingers crossed for next weekend. I don't want to overload him anymore than he already is.
Well as you read I flopped, but I will get it going next weekend. I found out I can mix ala with applesauce and you can't even taste it. My little girl despises applesauce but I used salad dressing with hers and she ate it. That was at a much smaller dose however.
A little o.t. I read over at the autism mercury board that melatonin can cause seizures, so I am not giving that until I find out more.
And I read the same thing about DMSA but that was from a website for DMPS.
I read the same article and it turns out they are talking about methyl DMSA and we are using meso DMSA. They are not the same. Meso DMSA does not cross the blood brain barrier. This is a quote from Andy Cutler. Vicky
Hi. I give Daniel 1/2 mg at night. I bought from Kirkman's. Melatonin does help with sleep but also helps the liver. I'm not sure exactly what it does but according to Andy Cutler, it does help the liver.
I got this from Kirkman's site:
Melatonin is used by many as a sleep aid as it regulates circadian rhythm and induces sleep. It also protects against mercury even in the toxic thimerosal form. Therefore many doctors are using it just prior to chelation and during the DMSA "on" days and 1/2 the "off" days. The routine can vary depending on whether it is also being used for sleep. Check with your physician to be sure.
Kirkman is now offering Melatonin tablets in a sublingual/chewable form. Dissolve under the tongue or chew depending on personal preference. The tablets are offered in one or three milligram strengths and are sugar-free, sweetened with sorbitol.
Both potencies are in 100 count bottles priced at:
Today is the day I am starting with the ALA...This is how we are going to do it...
by DLO
I will be giving ALA every 8 hours for both my kids. I read something about this schedule in the archives and I can't find it for anything now but I think this will work fine for us.
I will continue the 3 days on 11 days off for a year and then I will order the urine test at that time to see if it is free of the metals.
I'll keep you posted on the side effects good or bad.
Thanks everyone for being so helpful.:o))
Andy Cutler recommends the 3 hr protocol when you are using ALA, more..
by Vicky V.
it has to do with how ALA works in the most optimal way without causing harm. He also said that you shouldn't go past 4 hr if you forgot to do it on time. I hope I am being too pushy but he also said that you can do more harm than having the metals in your if you don't do it right and considering our sweet kids aready being in this situation. This is just what I have read about ALA. I have his book on chelation. Hope things go well for you.:) Vicky
Thank you, there are other recomendations other than the 3 hr protocol..more
by DLO
I have done much research(these are my sweet kids afterall) and have read all I can find on ALA, DMSA and even cilantro. There is no reason that I can find which would explain why the 8 hr protocol would not work. The ALA does what it is going to do regardless. I would think there would be more harm when we stop the chelation for the off days and thus allowing the mercury to resettle and on the 'on' days stirring up the 'same' mercury.(just wondering) ALA is greatly beneficial to the body anyway and with no bad side effects.
One source has the dosage as 200 mg three times a day of DMSA for a 30 to 60 pound kid, then supplementing with 50mg of ALA. That there are so many differing dosage recomendations tells me there just isn't enough information or maybe there is too much.
No offense taken and I hope I haven't offended you either. The 8 hr protocol is a legitimate one.
I should I apologize. I did not mean that you are not a great mother because I am sure you are. You have to be in order to be where you are right now. So I am truly sorry for that. I do however believe that the ALA 8 hr. protocol is dangerous. I am following Andy Cutler's recommendations and I will be following his protocol. He is probably one the most knowledgeable person out there with respect to chelation and DMSA and ALA. Dr. Holmes used to be on the autism-mercury website and she follows mostly Andy's work with some adjustments. I am not questioning you as a mom, Lord knows you don't need that given all the stress and ups and downs of life right now. This strictly a discussion on the ALA administration. Vicky
I'm new to this site. My son has been going through chelation since March. At the risk of sounding stupid, Who is Andy Cutler??? What is his background and what is the name of his book? I can only assume that he is not a member of DAN since he did not participate in the Mercury Detoxification Consensus Paper which involved numerous physicians. My son is following the DAN protocol with some adjustments.
I have an example that will help you (I think ) to understand. Suppose you have a bucket of apples in front of you and someone asked you to throw them the apples. You could throw the whole bucket at one time or you could throw one at a time to ensure that the person gets it all. Well if you use too high a dosage, then a lot of mercury comes out at one time and your body may not be able to dispose of it or it might try to and not succeed. If it tries to get rid of all the mercury it could hurt the kidneys or some other organs in the body that works with detoxification. The reason our kids are toxic is because too much was given to them at one time, they are not able to get rid of so much at one time. That is why the three hour protocol is suggested with small amounts. The current recommendations is 1/8 to 1/4 mg per lb per 3 hour. You could post this question at the autism-mercury website and you will get responses. I am just trying to help. I could have just mind my business (and I prefer to do that) but I felt an obligation to "speak" up. I will no longer make any more suggestions to you regarding the ALA protocol. My son is 3 1/2 and I will give him 5mg every three hour to start and the most I will give him is 10mg every three hour. I truly wish you the best and your little sweethearts. Vicky
I am glad you 'spoke' up.*G*
I did not know the specifics as to why such small dosages and I do thank you for the apple comparison.:o)
Of course I feel like a hard head. Which in fact I am!LOL
I have had such a terrible time this weekend even getting the kids to take the ALA..so this weekend was almost an entire flop. At first it was easy but then I couldn't disquise the taste.(I have flavored ala and it isn't too bad)but I guess it tastes terrible to the kids.
I have to be successful at this and I do REALLY appreciate your advice and help. I understand now why the small doses. Maybe that would even make it easier to get the kids to swallow it. I honestly doubt I can get my little girl to wake up which is the main reason I went for the 8 hr protocol.
You have no idea how much I've tried to see if I could use the 8 hr or five hr or even four hour I would accept. But the more I read the more I realize that it wasn't going to happen unless I risk doing harm. I too wish so much it wouldn't be every 3 hr. That is so hard to do for three days! The only chelator I found that doen't have such a rough schedule is DMPS but I don't know much about it. Wishing you the best. Vicky
It was supportive of the dmps and against the dmsa naturally.*G*
On page 3 in the archives here there is alot of information on dosages so that is where I've been most of this morning. I have not been able to find a liquid ALA but I think I am going to order the DMSA as soon as possible.
I have liquid ALA. I bought it from brainchildnutritionals.com. You have to call them because I don't think they changed their website as of yet. Vicky
www.directlabc.com (I think that is it). They have all the lab test that mds order(including blood test and mercury urine tests) and you can order them without an md. They will send directions to the nearest lab with the lab slips and they send the results direct to you. Good luck. -Dena
Mercury linked to Alzheimer's Disease - New Study!
by Stacie
OUR-KIDS Digest - 10 Apr 2001 to 11 Apr 2001 (#2001-114)SCIENTISTS CONNECT
ALZHEIMER'S DISEASE TO MERCURY
International Academy of Oral Medicine and Toxicology
P.O. Box 608531
Orlando
FL 32860-8531
Phone: 407-298-2450
Fax: 407-298-3075
Email: mziff@i... *
Internet: http://www.iaomt.org
NEW RESEARCH CONNECTS MERCURY TO ALZHEIMER'S DISEASE!
Research conducted at the University of Calgary Faculty of Medicine has
demonstrated that trace amounts of mercury can cause the type of damage
to nerves that is characteristic of the damage found in Alzheimer's
Disease.
The level of mercury exposure is consistent with those levels found in
humans with mercury/silver amalgam dental fillings.
The exposure to mercury caused the formation of "neurofibrillar
tangles,"
which are one of the two diagnostic markers for Alzheimer's Disease.
The scientists found that other metals, including aluminum, did not
cause
the damage.
Previous research has shown that mercury can cause the formation of the
other Alzheimer's Disease diagnostic marker, "amyloid plaques."
The research, published in a peer-reviewed medical journal, is
accompanied
by a video visual presentation of the effect.
Utilizing digital time-lapse photography, this video shows rapid damage
to
the nerve cells after introduction of minute amounts of mercury.
Funding for this video was provided by the International Academy of
Oral Medicine and Toxicology (IAOMT).
SPECIAL NOTE: The University of Calgary has placed a copy of the video on
their site at:
BIOPROBE COMMENT: This study should remove all doubt regarding the role
that dental mercury from amalgam fillings plays in the development of
Alzheimer's Disease (AD).
Although the American Dental Association would like to have you
believe otherwise, science has clearly demonstrated that there is a
positive correlation between brain mercury levels and the number and
surfaces of "mercury/silver"
amalgam dental fillings.
The mercury levels that caused the devastating damage to nerve cells in
the above referenced study were 100 to 1000 times below those found in the
brains of people with "mercury/silver" amalgam dental fillings.
In 1997, researchers at the University of Calgary Medical School and
the
College of Pharmacy at the University of Kentucky clearly demonstrated
that exposing rats to the same levels of mercury vapor that can be released
from "mercury/silver" amalgam dental fillings caused the mercury to interact
with brain tubulin and disassemble microtubles that maintain neurite
structure.
The identical neurochemical lesion of similar or greater magnitude is
evident in Alzheimer brain homogenates from approximately 80% of
patients, when compared to human age-matched neurological controls.
(Neurotoxicology 1997;18(2):315-324)
In 2000, researchers at the Neurobiology Laboratory, Psychiatric
University Hospital in Basel, Switzerland using neuroblastoma cells exposed
to
mercury demonstrated an increase in production of amyloid protein that makes
up
the amyloid plaques as well as significantly increasing the phophorylation
of Tau protein. (J Neurochem 2000 Jan;74(1):231- 236)
Studies demonstrating a correlation between amalgam dental fillings and
brain mercury levels:
Lakartidningen 1986 Feb 12;83(7):519-522
Swedish Dental Journal 1987;11(5):179-187
Sci Total Environ 1987 Oct;66:263-268
J Prosthet Dent 1987 Dec:58(6):704-707
FASEB J 1989 Dec;3(14):2651-2646
Sci Total Environ 1990 Dec 1;99(1-2):1-22
Sci Total Environ 1993 Sep 30;138(1-3):101-115
J Trace Elem Med Biol 1995 Jul;9(2):82-87
Zentralbl Hyg U:mweltmed 1996 Feb;198(3):275-291
FASEB J 1998 Aug;12(11):971-980
Biometals 1999 Sep;12(3):227-231
There is plenty to read on all of the above subjects. You could take
a look at www.amalgam.org OR www.bioprobe.com OR
www.talkinternational.com -- or try a search engine. Among other
things, you could look for American Academy of Biological Dentistry,
Internation Academy of Oral Medicine and Toxicity, and Foundation for Toxic
Free Dentistry. Generally the topic of what materials are
best seems complex.
