SchaferAutismReport: Wall St. Journal on Chelation and Autism

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SCHAFER AUTISM REPORT "Healing Autism:No Finer a Cause on the Planet"________________________________________________________________Tuesday, February 15, 2005 Vol. 9 No. 26>> PROMOTE YOUR 2005 EVENT NOW - FREE <<Deadline March Autism Calendar:February 25!Submit listing here:http://www.sarnet.org/frm/cal-frm.htmTREATMENT* Wall St. Journal on Chelation and Autism* For The Autistic Child, Time Matters* Neuroscience Program at Kansas Univ. Med Opens Doors For Facility, PatientsPUBLIC HEALTH* Vaccine-Bill Backers Hopeful of Chances in Missouri* After Lengthy Wait, Acting Head of F.D.A. Is Picked to Be LeaderEVENTS* Dodgers Give These Kids Their Walking PapersEDUCATION* Japan Education Ministry Widening Scope of Special Needs to Include

Asperger’sCARE* Jail for Mother Who Lied Over Benefit For Her Autistic SonTREATMENTWall St. Journal on Chelation and Autism[by Amy Dockser Marcus for The Wall Street Journal. Thanks to BethNoland. Not available online without a subscription.]One of the most frustrating struggles in children's medicine has beenthe long-running, and often controversial, effort to treat autism.Now, some parents and physicians are touting an approach that could bethe most controversial yet: using drugs that strip the body of metals.The treatment, called chelation therapy, has been used for decades todetoxify people contaminated with metals through industrial accidents orenvironmental exposure. The drugs have potentially serious side effects --including bone-marrow and liver problems -- because they also stripnecessary minerals such as iron and zinc from the body.But advocates of the technique say the drugs can

significantly reduceautism's devastating symptoms such as lack of emotion and repetitivebehaviors. Some go so far as to say that autistic children treated withchelation can return to normal health.Chelation Agents The practice grew out of the belief among many autism experts thatheavy metals -- especially mercury-based preservatives in childhood vaccines-- are to blame for autism. An Institute of Medicine report in May 2004found no link between autism and vaccines. But the theory got a boost lastyear after a toxicologist who treated his own son with a chelatingmedication testified before a congressional subcommittee chaired byCongressman Dan Burton of Indiana. Rashid A.Buttar told the committee that 19 of the 31 patients in his NorthCarolina clinic using the medication, called TD-DMPS, for more than a yearhad a complete loss of their autistic symptoms. The results haven't beenpublished, though Dr. Buttar says he is

working toward that.The practice of chelation as a treatment for autism has been greetedwith anger by many in the mainstream medical establishment, who decry thepotential side effects and note that there are no published clinical trialsdemonstrating that it works. Some contend that children who seem to improveafter therapy were likely misdiagnosed as autistic to begin with, or simplyhave a milder form of autism.Many autistic children who have been treated with chelation wereundergoing numerous other treatments as well, including in Dr. Buttar'sresearch. That makes it “difficult to tease out the effect of chelation,”says Marie McCormick, professor of maternal and children's health at theHarvard School of Public Health. Only clinical trials are likely to resolvethe debate, adds Dr. McCormick, chairwoman of the committee that wrote lastyear's IOM report on vaccines.The traditional approach to treating autism has focused on

intensivebehavioral therapy, special education and speech training. Autism, whichaffects as many as one of every 166 U.S. children, according to the Centersfor Disease Control and Prevention, is a developmental disorder that affectsa child's communication, creative play and social interaction.There is no way to know how many autistic children are undergoingchelation. The CDC reported last year that 60,000 Americans use some form ofchelation therapy. But it isn't known how many are being treated for leadpoisoning or other diagnoses. Representatives for the CDC and the federalFood and Drug Administration said they had no comment on the use ofchelation therapy for autism.Word-of-Mouth Thus parents embarking on chelation are relying primarily on anecdotalreports through the Internet and other word-of-mouth avenues. The story ofLenny Hoover, 6 years old, from Royal Palm Beach, Fla., is one thatadvocates of chelation therapy

often cite.Lenny Hoover's parents say chelation helped reverse his autism. He nowattends regular kindergarten. Hoover, Lenny's father, says his son was diagnosed with mildto moderate autism at the age of 2. The Hoovers first put Lenny on a wheat-and dairy-free diet, in the hope this would reduce his gastrointestinalproblems, which are a common issue for autistic patients. They started himon intensive behavioral therapy. When he was 28 months, they also beganchelating him after tests showed Lenny had elevated tin, nickel and arsenicin his urine. They mixed a medicine called DMSA into his juice, which he hadto drink every eight hours for three days, with 11 days off. He did 38rounds of chelation following this schedule.“We had a heck of a time getting him to drink it,” said Mr. Hoover.“It smells like sulfur and is horrendous.”But Lenny started making such rapid gains that they eventually stoppedbehavioral therapy. By

the time Lenny was 5, the local school determinedthat he had no developmental delays. He started a regular kindergarten lastfall. Says Mr. Hoover, “We lost our son, then we got him back.”A number of Web sites and autism support groups offer information toparents on chelation. A Yahoo chat group about chelation and otherbiomedical treatments for autism, Chelatingkids2, has more than 1,800subscribers, according to co-founder Ann Brasher. The Autism ResearchInstitute, an advocacy group in San Diego that supports the idea thatvaccines are the primary source of mercury poisoning in autistic kids, saysthat in its most recent parent survey, 73% of the 187 parents who said theyuse chelation therapy reported that it was helpful. Today, the institute,which says it is funded mainly by individual contributions, is set torelease a report recommending chelation as “one of the most beneficialtreatments for autism and related

disorders.”Question of Diagnosis Some critics argue that patients such as Lenny Hoover may have beenmisdiagnosed -- that such children were actually at the high- functioningend of the spectrum of autistic disorders or were never even autistic. Mr.Hoover says that Lenny demonstrated typical autistic behavior. Lenny hadlost his speech ability, slept only a few hours at night, and in home videoshe is seen spinning around in a circle, over and over again.Mr. Hoover acknowledges that it is difficult to say conclusively whichof the therapies used on Lenny was helpful. He says that the diet,behavioral therapy and chelation all helped his son, but that he believeschelation was a key. At this point, Lenny eats a regular diet and hasn'tdone any chelation since July 2003, when his parents decided he wasn'tmaking further gains from the therapy.Off-Label Use There are many medications used for chelation. Some, such as DMSA --

achemical compound made by a variety of manufacturers including Epochem Co.in Shanghai -- are FDA-approved for other treatments including leadpoisoning. Doctors who prescribe these to treat autism are using themoff-label, which is allowed for already-approved medications. Others aren'tFDA-approved. But pharmacists can compound them for individual use at aphysician's request. The drugs can be given in several ways, as creams,pills or via shots or intravenous infusions. Regimens vary in frequency,dosage and length of treatment.Before starting chelation, patients undergo testing to measure theirexposure to heavy metals. Doctors disagree on the best way of testing metalexposure. Options include hair, urine and blood tests. Critics say thesetests can have high false-positive rates. The Autism Research Institutesupports the use of a so-called provocation test, which involves giving achelating agent followed by urine or stool

collection to see whether heavymetals were excreted.Chelation therapy isn't cheap, with medications running $100 to $200 amonth. Testing also can be expensive, costing $1,000 to $2,000 to getstarted, and $1,200 to $2,400 a year in monitoring. Insurers don't coverchelation therapy for autism or other off-label uses.New Studies The metal-cleansing treatment also is gaining ground as a treatmentfor a range of conditions besides autism, including Alzheimer's and heartdisease. A preliminary study published in Archives of Neurology in December2003 found that removing metals accumulating in the brain of Alzheimer'sdisease patients using the chelating drug, clioquinol, appeared to slow theprogress of the disease. Two institutes of the National Institutes of Healthlast year opened a clinical trial that so far has enrolled more than 500patients to test whether chelation therapy benefits patients with heartdisease.Later this

year, investigators at Arizona State University in Tempe,Ariz., will launch a clinical trial involving 80 autistic children ages 3 to9. Half of the children will receive DMSA, the treatment approved by the FDAfor lead poisoning. The other half will receive a placebo. The trial aims todemonstrate whether chelation therapy can improve the symptoms of autism.* * Chelation Agents Some pros and cons in three of the most commonly used chelating agents inautistic children: DMSA Sodium 2,3 dimercaptopropane- 1 sulfate In the oral form,approved by the FDA for treating lead poisoning in children as young as 1.It can remove a wide range of metals, including lead and mercury. Long- termuse can potentially cause bonemarrow suppression or liver damage. It stripszinc, a beneficial mineral, and supplements may be needed. It can causegastrointestinal problems to worsen.DMPS 2,3 dimercaptosuccinic acid It causes fewer

gastrointestinalproblems than other agents and may be more effective at eliminating mercurythan DMSA. It now comes in a cream form, which is easier to use. DMPS is notFDA-approved although physicians can have it individually compounded forpatients. It has potentially serious side effects and blood and urine needto be regularly monitored.TTFD Thiamine tetrahydrofurfuryl disulfide In studies, it had a goodsafety record. In a small study of 10 children on the autism spectrum, mostimproved clinically. It comes in cream form. It is not approved by the FDA,although physicians can have it individually compounded for patients. It hasa strong odor described as “skunklike” even in cream form, and has a badtaste in powdered form making it difficult to give to children who cannotswallow a capsule.Source: Autism Research Institute's Defeat Autism Now Project See:“Treatment Options for Mercury/Metal Toxicity in Autism and

RelatedDevelopmental Disabilities: Consensus Position Paper”http://www.autismwebsite.com/ari/ * * *For The Autistic Child, Time MattersA diagnosis at age 2 -- or even earlier -- could make a difference.[by Shari Roan for the L.A. Times.]http://www.latimes.com/features/health/la-he-autism14feb14,1,5044147.story?coll=la-headlines-healthDr. ine Filipek sizes up her tiny patient in her toy-strewn clinicin Orange. As the 22-month-old boy enters the room, he doesn't look atFilipek or anyone else. He plows into a pile of toys on the floor, sometimeswalking or crawling over them, but doesn't speak.He could easily pass as a good-natured child who needs littleattention. But Filipek, a neurologist, sees something else, behaviors “thatmake the hair on the back of my neck stand up.” Most toddlers will carry atoy in only one hand — this child clutched a toy in each fist when enteringthe room. And children this age

typically will scope out a room full ofstrangers warily, sticking close to Mom or Dad for reassurance.The scene is familiar to Filipek. At the end of a 90-minute exam shetells the child's parents that their son has autism. Filipek pulls her chairclose to the couple, first-time parents in their 30s, and leans toward thembefore she continues. “The fact that you're here with him, this young, iswonderful.”It is balm intended to soothe the harsh news. And Filipek'sencouragement is sincere. She is among a growing number of child developmentexperts who say that autism often can be identified much younger than istypically done today, and that early treatment can alter, sometimesdramatically, the course of the brain disease that affects about one in 500U.S. children.Geraldine Dawson, director of the Autism Center at the University ofWashington's Center on Human Development and Disability, says doctors nowcan reliably diagnose autism

by age 2 and researchers are developingscreening tools to identify kids as young as 18 months. “The long-rangegoal,” she says, “is to be able to detect autism at birth or in very earlyinfancy.”Cases On The Rise Early recognition is one of the most hopeful developments in thesobering world of autism, a neurological disorder in which people havedifficulty communicating and interacting socially with others. Autisticchildren often speak little, ignore others and display repetitive behavior,such as spinning in circles or focusing on one object for hours. They mayexcel at something in detail, such as spelling or playing a musicalinstrument, but become overwhelmed when trying to navigate the world atlarge. The disorder is also known as “autism spectrum disorder,” reflectingthe wide range in severity of cases and the various subtypes of autism, suchas Asperger's disorder and pervasive developmental disorder.In California, an

estimated one in 322 children has been diagnosedwith autism, according to the state Department of Development Services.According to its 2002 report, autism cases increased 273% from 1987 to 1998.Between 600 and 800 children with autism are added to the DDS's servicerolls every three months. No one knows what causes autism or why morechildren are developing it.Many doctors see the effort to diagnose autism earlier as asignificant development that could yield clues to what causes autism and howbest to treat it.But the trend in early diagnosis has also created a backlog of parentswho are demanding diagnostic evaluations earlier — often for babies. Doctorsand insurers frequently deny these services for several reasons: Evaluationsare costly, there is a lack of trained therapists and some healthcareproviders say that autism can't reliably be identified before age 3 or 4.“It's like there are two camps. You have some doctors — the few

— whoare comfortable diagnosing children at the age of 1,” says Landa,director of the Center for Autism and Related Disorders at the KennedyKrieger Institute in Baltimore. “And you have others who feel strongly thatyou can't diagnose before age 3. They won't even talk about it. Research onearly diagnosis is coming off the press as we speak; it's that recent.People are just starting to list what the red flags are in infants andtoddlers.”Those lists are beginning to make their way into the hands of parentsand pediatricians. Later this month, the national Centers for DiseaseControl and Prevention will launch a campaign to promote earlier diagnosisof autism. A lack of nonverbal communication could be one of the first signsthat a child isn't developing normally, experts say.At about 8 months, Dawson says, babies should babble and pay attentionwhen their names are called. By 12 to 14 months, they should point,

wave,gesture, imitate others and play peekaboo.“This is the age when the child points at something and looks at themother to see if she sees it,” she says. “They show things to their parents.Even before kids are using formal words, they are using their bodies forpointing and showing. This is important because with a child with autismboth the verbal and nonverbal systems are affected.”+ Full story here: http://www.latimes.com/features/health/la-he-autism14feb14,1,5044147.story?coll=la-headlines-health* * *-- > DO SOMETHING ABOUT AUTISM NOW < --SUBSCRIBE. . . !. . .Read, then Forward the Schafer Autism Report.To Subscribe http://www.SARnet.org/Or mailto:subs@... No Cost!_______________________________________________________Breathing for Your Brain[Note: Some clinics offer this as a treatment for autism. However,this is considered very experimental,

if not “off-label” for treating thespectrum of disorders labeled autism.]http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=10570Ivanhoe Broadcast News - Radiation is often used to treat patientswith brain tumors. But many times, the radiation treatments leave behinddamaged brain tissue. Now, researchers may have found a way to stop and evenreverse that problem.Dave doesn't need a video store. He catches a movie everyweekday at the hospital. spends five days a week, 130 minutes a day,in a hyperbaric oxygen chamber to treat brain injury after radiation. He'shad two brain tumors removed in the last four years.Laurie Beth Gesell, M.D., a hyperbaric medicine expert at UniversityHospital in Cincinnati, says the damaged brain tissue leads to a variety ofproblems. “They might have numbness. They might have thinking problems. Theymight have speaking problems. They might have things as generalized as

justsevere headaches,” she tells Ivanhoe.Typically steroids are used to treat tissue damage. Dr. Gesell hopesbreathing in a hyperbaric oxygen chamber will be a better option.The MRI on the left shows a pattern of brain tissue damage surroundedby swelling. The MIR on the right shows the difference after several monthsof hyperbaric oxygen therapy.“For the most part, hyperbarics is an incredibly safe type oftreatment,” Dr. Gesell says. “All it is, is that we have a person breatheoxygen, and we pressurize that oxygen.”MRIs show the treatment improves nearly 80 percent of patients. is one of them. And he says the movies are a bonus.Dr. Gesell says 90 percent of the patients in the study also showimprovement during physical examinations.This article was reported by Ivanhoe.com, who offers Medical Alerts bye-mail every day of the week. To subscribe, go to:http://www.ivanhoe.com/newsalert/.* * *Neuroscience

Program at Kansas Univ. Med Opens Doors For Facility, Patients[by Lola Butcher.]http://kansascity.bizjournals.com/kansascity/stories/2005/02/14/story2.htmlIn the nine years since Spencer McCulloch was diagnosed with autism,his parents have experimented to find a combination of medications,occupational therapy and other strategies that seem most helpful.Spencer is a bright, high-functioning 15-year-old, but, as his dadputs it: “If there was something that would help him more easily use theintelligence he has, that would be a thrill.”Although doctors can't yet peer into patients' brains to see whichtreatments work best, researchers at the University of Kansas Medical Schoolare working toward that day.“ny and Bobby don't respond the same way, so we need to get eachkid to the right therapy,” said Lewine, a researcher and one of many=== message truncated

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