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“Healing Autism: No Finer a Cause on the Planet”

February 27, 2002        News Archive Search  www.feat.org/search/news.asp

RESEARCH

·        Anti-Inflammatory Pain Relievers May Fight ‘Autism Viruses’

·        A Look at the Viral Infection Theory of Autism

·        Researchers May Have Found Key To Fragile X Syndrome

·        Secretin: Will a New Controlled Study Put an End to the Hype?

 

EDUCATION

·        Scarey New School to Open for Asperger Children in Connecticut

·        Michigan’s Oakland County Center’s Services Shrinking

 

AWARENESS

·        Award-winning Girl Scout Project Inspired Creator To Reveal Autism

 

PUBLIC HEALTH

·        MP Mothers Clash Over MMR

·        Blair Should Tell About MMR - Labour MP

·        Parents Vote For Single Jabs

·        Reader’s Posts

 

 

Anti-Inflammatory Pain Relievers May Fight ‘Autism Viruses’

[This may be tangental to the “Viral Theory of Autism” see following article. From Reuters Health.]

http://story.news.yahoo.com/news?tmpl=story&cid=594&u=/nm/20020225/hl_nm/vir us_1  <- - address ends here.

Certain pain relievers, including aspirin, might actually be able to fight some viruses instead of just treating virus symptoms such as fever, researchers report.

In a laboratory study, investigators in New Jersey have found that the group of pain relievers that inhibit an enzyme known as COX-2 prevent reproduction of a virus called human cytomegalovirus (CMV). This squelching effect, which can be accomplished by aspirin and other drugs, might very well apply to other viruses, according to an independent expert.

Even if the results apply only to CMV, the findings will be important if they’re confirmed by clinical studies. CMV infects most adults, without causing illness, but it can be deadly in people with weak immune systems, such as AIDS patients. Also, CMV infection in pregnant women is a leading cause of birth defects, especially hearing impairments.

The effect of inhibition of COX-2 on CMV was first studied several years ago. A laboratory study showed that when muscle cells infected with CMV were treated with aspirin, the reproduction rate of the virus was cut in half.

The current study confirmed this result. When Dr. Thomas E. Shenk of Princeton University and colleagues infected skin cells with CMV, they found that inhibiting COX-2 reduced the virus reproduction rate more than 100-fold. The researchers used three experimental compounds in the study that specifically inhibit COX-2 alone. They also used another drug that is known to inhibit both COX-2 and COX-1, another type of enzyme. Traditional drugs such as aspirin and ibuprofen inhibit both enzymes, but a newer class of drugs, known as COX-2 inhibitors, are more targeted.

But the New Jersey team went further than the other researchers—they showed why inhibitors of COX-2 have this effect. They already knew that the drugs block the production of a naturally occurring chemical in the body called prostaglandin E2. This and other prostaglandins are responsible for the pain, fever and inflammation that develop in a wide range of disorders.

Shenk and his associates added to this knowledge by showing that prostaglandin E2 is vital to the reproduction of CMV. They added prostaglandin E2 to CMV-infected cells in which virus reproduction had been blocked by an inhibitor of COX-2. Prostaglandin E2 restored virus reproduction, the researchers report in the Proceedings of the National Academy of Sciences Early Edition, released online February 26.

There is evidence that prostaglandins play a role in the reproduction of other viruses, Dr. Edward Mocarski, Jr. of Stanford University suggests in a journal commentary. An example, he notes, is the herpes simplex virus.  One strain of this virus causes cold sores and another causes genital herpes infections.

If scientists confirm that prostaglandins are involved in herpes and other viral infections, drugs that suppress prostaglandins might be “an auxiliary means of controlling infection,” according to Mocarski.

SOURCE: Proceedings of the National Academy of Sciences Early Edition 2002;10.1073/pnas052713799.

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A Look at the Viral Infection Theory of Autism

[This material is contains technical language. By Lewis Mehl-Madrona,

M.D., Ph.D..]

http://www.healing-arts.org/children/autism-overview.htm#Viral

The viral theory of autism relies upon a relative immunosuppression, often thought to be in the intestinal tract, and a viral infection to produce the central nervous system symptoms of autism. Secretory immunoglobulin A (SIgA) is an important defense in the intestines against viral infections and is often postulated to be deficient in autism.

Viral encephalitis is known to give rise to autistic-like disorders, particularly when it occurs early in life.

Among the viruses that can invade the gastrointestinal tract is herpes simplex (HSV), which has been shown in the human enteric nervous system, from which it can migrate into the CNS, including into the central amygdala (RM Gesser at al, series of studies). Other studies have shown that HSV (i) tends to migrate towards the cerebellum and temporal lobe, (ii) is capable of affecting language, (iii) can migrate intra-neuronally without causing encephalitis, and (iv) once within the CNS can remain hidden from view for long periods of time (ie, no peripheral signs, no detectable CSF markers (Dr. Snyder; Myron Levin et al).

Some investigators speculate about an autism-spectrum subgroup wherein the infant or child’s gastrointestinal pathology provides the route by which herpes simplex virus migrates into the central nervous system to produce the autistic symptoms.

The major immunoglobulin (Ig) present in human secretions is a dimeric IgA covalently bound to an epithelial glycoprotein of about 80 kD, now called the secretory component (SC). IgA protects against viral infection from the gut. Secretory IgA and secretory IgM are the products of two cell types: plasma cells synthesise IgA dimers and IgM pentamers which, by non-covalent association, become complexed with the secretory component (SC) which is synthesized by serous-type glandular cells. The adsorption of the Ig polymers to the SC-expressing epithelial cells depends on J-chain-determined binding sites.

This fact gives biological significance to the striking J chain expression shown by mucosal immunocytes regardless of the Ig class they produce. The immunocytes populating the gut mucosa apparently belong to relatively early memory B cell clones. The obvious functional goal of J chain expression at this stage of clonal differentiation is local generation of SC-binding IgA and IgM polymers. In various gut diseases, altered immune regulation results in a disproportionately increased number of J chain-negative IgG-producing cells in the mucosa. Such altered immunological homeostasis may contribute to perpetuation of inflammatory bowel diseases.

Pentameric IgM is likewise actively enriched in most exocrine fluids (like gut excretions) and is associated with SC, although not in a covalently stabilized complex.

Three findings explain the selective translocation of polymeric Ig (pIg) into exocrine fluids: (1) preferential local production; (2) J-chain-expressing capacity of pIg-producing immunocytes; and (3)

SC-mediated epithelial transport.

The J chain of pIg and the epithelial SC represent the “lock and key” in the glandular transport of secretory IgA (SIgA) and SIgM.

It has recently been shown that SC is synthesized as a transmembrane protein of about 95 kD and constitutes the actual pIg surface receptor.  Complexing between ligand and receptor in the plasma membrane is followed by endocytosis. The completed SIgA and SIgM molecules are then translocated in cytoplasmic vesicles through the epithelial cell to the gland lumen along with an excess of free SC.

The main function of SIgA is to exert immune exclusion; that is, by intimate cooperation with innate nonspecific defense factors it decreases penetration of soluble antigens and inhibits epithelial colonization of bacteria and viruses. Especially in selective IgA deficiency, SIgM may exert a similar protective function since its synthesis is markedly increased in the intestinal mucosa, especially in selective IgA deficiency.

IgG should not be considered a secretory immunoglobulin because its external translocation depends on passive intercellular diffusion. By activating complement, antibodies of this isotype may cause increased mucosal permeability and tissue damage. By activating complement, IgG antibodies may at the same time be phlogistic and accelerate mucosal penetration of antigens. IgG may thus contribute to persistent immunopathology in mucosal disease. The same is true for IgE antibodies which, in atopic individuals, may be carried into the gut mucosa by mast cells and cause their degranulation with histamine release.

Leakage of IgG into exocrine fluids is enhanced by mucosal irritation.  Although IgG should not be considered as a SIg, it may contribute to immune exclusion. This is seen especially in the respiratory tract where IgG is less easily subjected to proteolytic degradation than in the intestinal juice.

Traces of IgD may likewise be found in the secretions but without obvious biologic significance. Regulation of secretory immunity takes place both in organized lymphoepithelial structures in the gut, such as the Peyer’s patches, and adjacent to the glands in the lamina propria of the gut.

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Researchers May Have Found Key To Fragile X Syndrome

[By Helen Branswell / The Canadian Press.] http://www.herald.ns.ca/cgi-bin/home/displaystory?2002/02/26+170.raw+Canada+ 20 <- - address ends here.

Toronto researchers have discovered a domino effect in the production of brain proteins that may play a key role in the development of Fragile X syndrome, the most common form of inherited mental impairment.

The researchers hope their findings will lead to a drug therapy which could, theoretically, allow children with the syndrome to begin learning normally.

“Now we have a good clue as to why the lack of this protein is causing this disease,” said lead author Dr. Peter Carlen, a neurologist and neuroscientist at Toronto Western Hospital.

In fact, an existing class of drugs, called ampakines - which are being tested in the United States as possible treatment for Alzheimer’s disease - might prove useful in the treatment of Fragile X.

“So actually we’ve now given a rationale for using that therapy in these kids,” Carlen said.

Currently there is no treatment for Fragile X, a little understood and often misdiagnosed syndrome which is caused by a defect on one of the genes on the X chromosome.

The syndrome is known to affect about one in 2,000 boys and one in 4,000 girls, but the true numbers might be higher.

The symptoms mimic other conditions such as autism, attention deficit, hyperactivity disorder and Tourette’s syndrome, and as a result Fragile X can be misdiagnosed.

In mild cases, a child with Fragile X may simply be classified as “not too smart,” Carlen said.

* * *

 

Secretin: Will a New Controlled Study Put an End to the Hype?

[From Brown University Child and Adolescent Psychopharmacology Update

http://www.medscape.com/viewpublication/427 .]

http://www.medscape.com/viewarticle/423203

A new controlled study has found that porcine secretin is no more effective than placebo in the treatment of autistic disorder. Secretin promotes release of digestive fluids from the pancreas, the production of bile from the liver and the production of pepsin from the stomach. Porcine secretin is a pig-derived endogenous gastrointestinal polypeptide used by gastroenterologists in diagnostic testing. Both animal-derived and synthetic forms of the hormone have failed to demonstrate superiority over placebo in other controlled trials investigating its efficacy in ameliorating the core symptoms of autism.

Interest in secretin for treatment of autistic disorder has been attributed to a few anecdotal reports and open-label trials that have found the hormone to be helpful in improving social and language skills in autistic children and to a case series that found dramatic improvement in autistic children who were given the drug for diagnostic gastrointestinal tests (Horvath et al., 1998).

Most notably, perhaps, is a 1999 “Dateline NBC” segment reporting favorable results in autistic children who were treated with secretin. In fact, interest in using secretin as a treatment for this condition became so widespread that reports of price gouging and other forms of profiteering began to surface. The frenzy ultimately prompted the American Academy of Child and Adolescent Psychiatry (AACAP) in 1999 to issue a policy statement cautioning physicians and parents about the risks of clinically unproven treatments. [For more information on secretin, see The Brown University Child and Adolescent Psychopharmacology Update, January 2000: “Secretin found ineffective for treating autism in children,” page 1; and July 2001 “News Update,” page 3.]

“Initial interest was sparked by the Horvath case series, which reported improvement in core symptoms of autism in three children after receiving secretin as a part of workups for gastrointestinal symptoms. After the case series came out, the subsequent media publicity further increased interest in the substance,” says Thomas Owley, M.D., assistant professor of child and adolescent psychiatry at the University of Chicago and principle investigator on the current study.

Owley and colleagues say the urgency in conducting their controlled investigation was inspired, in part, by the fact that many physicians and caretakers were prescribing secretin to autistic patients in the absence of research demonstrating its safety and efficacy (Sandler et al., 1999).

The intravenous administration of secretin is not without risks. There is a potential for allergic reaction that may be further increased by repeated exposure to the pig-derived product. Repeated administration has been part of some of the protocols for this investigational treatment of autism, but its repeated use is not typically done in diagnostic tests.

Secretin is currently approved by the Food and Drug Administration (FDA) for

use in diagnostic tests. It is listed in the back of the Physician’s Desk

Reference (PDR) under diagnostic product information.

“A physician can give secretin off-label. It is not at all unusual for physicians to give medication in this way, especially those treating children, since most of the medications are tested on and receive approval primarily for adults,” says Owley. “Some physicians are giving this substance to their patients, especially if they started receiving it some time ago and feel that it helped,” he adds.

“With the information we have now, if you are practicing empirically based medicine, I don’t think that you would start giving this to new patients, but not everyone practices that way.”

“My own feelings are that we have to practice medicine based on the literature, and we have to use the gold standard—double-blind, placebo-controlled testing—to make decisions. We can’t always do that, but we should strive for that,” says Owley.

·        Article Continues at :

http://www.medscape.com/viewarticle/423203

 

 

 

 

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Scarey New School to Open for Asperger Children in Connecticut

School May Avoid Oversight By State

[By Josh Kovner And Colin Poitras, the Courant.]

Leaders of the former Haddam Hills school for juvenile offenders [near Durham, Connecticut] - shut down last year after allegations of abuse - are quietly preparing to open a private school for an even more challenging population of children.

The new boarding school, called Franklin Academy, would accept children with Asperger’s syndrome, an affliction that is sometimes likened to autism and requires special treatment. The academy would open at the Haddam Hills site in September.

The owners intend to run the school without state oversight, worrying state officials who are only now learning of the plan.

Franklin Academy Inc. was formed in November, six months after the state Department of Children and Families revoked Haddam Hills’ license to operate. About 40 young offenders, from juvenile court and Long Lane reform school, had lived at Haddam Hills.

The new corporation, headed by former Haddam Hills corporate member Albert Brayson, has been busy.

Without the knowledge of state officials who are still investigating Haddam Hills’ business practices, Franklin Academy has hired a headmaster and a marketing director, begun renovations on the East Haddam campus, and even secured a spot on the April agenda of a national convention in California for Asperger-related disorders.

Brayson and his partners have done this while battling hefty problems remaining from Haddam Hills.

These include a state investigation into whether Haddam Hills inflated fees it charged the state to house juveniles; a jury award of $440,000 to a former Haddam Hills principal in a wrongful-termination case; and a second lawsuit by a former staff psychologist fired after tipping off state investigators to alleged abuses at the school.

John Claude Bahrenburg, Haddam Hills’ lawyer and one of Brayson’s partners in the new venture, is now appealing the license revocation. While he disputes DCF’s actions with respect to Haddam Hills, he stresses that Franklin Academy is a wholly separate venture and deserves a fresh start.

The former school’s track record “raises concerns, and makes it incumbent on the proponents of this new program not to repeat the errors,” said Sen. Donald E. Williams Jr., D-Killingly, chairman of the legislature’s Select Committee on Children.

The panel held hearings on Haddam Hills after The Courant disclosed that a pattern of abuses, including assaults by a “hit squad” of youths on campus, had been documented by state investigators. Despite the state’s own findings, daily rates paid to Haddam Hills were higher than those paid to any other residential school for juvenile offenders in Connecticut.

Now, state officials are trying to establish whether they have jurisdiction to regulate the planned new school.

Bahrenburg, of Simsbury, said the business partners intend to open Franklin Academy without seeking state approval. The school won’t need to submit to state oversight, Bahrenburg maintains, because, unlike Haddam Hills, it won’t seek public money or accept referrals for children from DCF or local school districts.

But DCF spokesman Gary Kleeblatt said that the agency has jurisdiction over residential treatment facilities and that Franklin Academy - the partners’ intentions not withstanding - would likely need a state license or some type of state oversight.

Another state official, who asked not to be identified, predicted that authorities, either from DCF or the departments of education or public health, would be watching the school’s progress closely, including “knocking on the door to see under what circumstances they’re opening.”

Franklin Academy would be one of the few residential programs for Asperger’s children in the country not under a state contract or affiliated with a hospital or medical school. Such affiliation is the norm because of the specialized care that is required, national experts said.

The children the school intends to serve can be extremely bright but are lost socially, don’t respond to nonverbal clues, such as tone of voice or gestures, and often have very poor motor skills - a predicament that can leave them angry and frustrated.

“I can’t imagine a residential program for these children without some state oversight - that would be scary. Who would ensure the safety of the children?” said Shirley Juels, administrator of Hillside Academy in Calabasas, Calif. The school has a contract with nine California school districts to provide day programs for children with Asperger’s syndrome.

Even for the best programs, Asperger kids are “a lot to handle - no question,” said Dr. Fred Volkmar of the Yale Child Study Center at Yale-New Haven Hospital and an expert on Asperger’s syndrome. “They are complex kids.  They have trouble dealing with frustration and change, and can be very challenging.”

Franklin Academy’s newly hired headmaster, A. Frederick Weissbach, said he comes from a traditional boarding school background and conceded he is faced with “a steep learning curve” with respect to Asperger’s children.

“But our education director will be an expert in the field,” said Weissbach, adding that he is conducting a national search for a program director. Weissbach, the Dartmouth-educated headmaster of an Episcopal school in Austin, Texas, said he would move to the East Haddam campus in June.

Weissbach said the school plans to open in September with 25 to 35 children in grades 6 through 10 and then add an 11th grade and 12th grade within the next two years. By then, the school could have 75 to 100 students, with most living on campus, said Weissbach.

That was news to East Haddam Town Planner James Ventres, who said the campus must pass fire, health and building inspections before the school can reopen.

Ventres questioned whether Franklin Academy could legally operate as a school without any kind of state approval or license.

“Without it, what we’re left with out there,” Ventres said, “essentially, is a camp.”

* * *

 

Michigan’s Oakland County Center’s Services Shrinking

http://www.freep.com/news/health/nmorc27_20020227.htm

Oakland County Community Mental Health Authority, MORC is one of the metro area’s biggest providers of services for people with developmental disabilities such as autism. It serves about 4,500 people. Now, MORC is coping with approximately $5 million in debt that the authority wants eliminated by Sept. 30, when...

* * *

 

Award-winning Girl Scout Project Inspired Creator To Reveal Her Autism

[By Angela Lo in the Seattle Times.]

http://seattletimes.nwsource.com/html/localnews/134411272_award26m.html

Katie Grimes is not your typical college student. The 20-year-old from Federal Way has autism, a disorder she did not openly reveal until three years ago when she started working on a Girl Scout project.

That project became the Federal Way Autism Support Group, the community’s first support group for parents of autistic children. Grimes organized monthly meetings, scheduled speakers, distributed fliers and designed an autism-information booklet. The group now provides support for more than 90 families in the area.

The project has earned Grimes, a sophomore at Washington State University, national recognition from the Girl Scouts.

She and nine other women from across the country will be honored in Washington, D.C., next month as this year’s Young Women of Distinction. The award recognizes 10 young women who have provided an exceptional service to their community and shown great dedication to achievement.

The honorees will meet several U.S. senators and Supreme Court Justice Sandra Day O’Connor, and participate in career-development training. Each will receive a $1,000 scholarship. They’ll also get to meet Elizabeth Dole, former president of the American Red Cross; Alma Powell, wife of Secretary of State Colin Powell; designer Vera Wang; and seven other women who have been named National Women of Distinction in honor of the Girl Scouts’ 90th anniversary.

More than 300 women were nominated by local councils as this year’s Young Women of Distinction.

To be eligible, nominees must earn the Girl Scout Gold Award, the organization’s highest honor. The gold-award project is crafted by the scout who works with an adult volunteer to implement it over one to two years.

“I was struck by (Katie’s) project because it was so inspiring,” said Colleen Ozolitis, manager for young-adult development services for the Girl Scouts’ local Totem Council, who nominated Grimes.

“She was filling a need for something that didn’t exist when she was younger. The fact that this was such a personal thing for her was one of the reasons it succeeded.”

Autism is a developmental disorder that encompasses a broad spectrum of behaviors and levels of severity. Most people with autism struggle to communicate. In Grimes, the disorder manifested itself in language-development delays and social awkwardness.

Grimes’ determination and drive were key factors in her success, said her mother, Lisa Grimes. “She just would never accept that she couldn’t do this, that or the other.”

The support-group experience not only helped her realize the extent of her abilities but pushed her to disclose her disorder as well.

“Early on in the project, I decided that I would let others know I have autism,” Grimes wrote in her project report. “This took courage; I had in the past felt ashamed of my disability. ... However, I knew that doing so would help my project and provide a chance for others to know something of who I really am.”

Copyright © 2002 The Seattle Times Company

* * *

 

MP Mothers Clash Over MMR http://news.bbc.co.uk/hi/english/uk_politics/newsid_1843000/1843184.stm “A health minister and a Tory MP - both mothers of young children - clash in parliament over the safety of the controversial MMR jab.”

Blair Should Tell About MMR - Labour MP http://news.bbc.co.uk/hi/english/uk_politics/newsid_1720000/1720957.stm “A Labour MP has urged government ministers to show leadership on MMR and reveal whether their children have had the triple vaccine.”

Parents Vote For Single Jabs http://news.bbc.co.uk/hi/english/health/newsid_1831000/1831057.stm “Three quarters of 1,000 parents questioned on the controversial MMR vaccine say the NHS should introduce three single jabs.”

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Reader’s Posts

Will be moving to the Phoenix, AZ area in May 2002. I am looking for work as a home program tutor in that area. I have worked for a family for the past three years as a home tutor and shadow aide in preschool and Kindergarten.

Starlla Duran Cmickei@aol.com.  916-339-0453

Help! Has anyone leaving in the Southern California area received any treatment or therapy related to  Autism from Kaiser?  If so, have you faced roadblocks? I would love to find out what Kaiser is offering under the new “Mental Parity Act Law” (AB88) for autistic children other then diagnosis and refer to the School Districts and Regional Centers and medication.

Please send reply to hamloian@hotmail.com

My ABA therapist/aide is leaving us after 4 years of wonderful service. We did find someone to fill the position who would have been trained within the next 2 weeks, unfortunately this person had a severe automobile accident and she is facing back surgery, so it looks like she wont be back.  We are in desperate need of someone before the end of this school year.  bubblylady@juno.com. located in dutchess county, new york.

Help! help! Any feat readers in the state of PA-Govenor Schwiker is debating

a bill to stop medicaid funding for wraparound serivices on Pa.  in families

who make over 100,000 dollars per year. They also report their are rumors of

removing all funding for autism in the future. Please e-mail this senator

and let us know how many of us are affected by this disease and what it

would do to stop funding our services. Even if you are educated and make

that income level, chances are you are doing the DAN protocol and spending

thousands yearly of your own money to help your child. Here is his E-mail

address

http://sites.state.pa.US/PAExec/Govenor/govmailhtml

Autistic Disorders: I have posted an on-line article entitled “Autistic Spectrum Disorders: Sorting It All Out.”  The article  explains the shared symptoms of the Autistic Spectrum Disorders, and then describe each syndrome along with its defining features. Address: www.pediatricneurology.com (Click on Autistic Spectrum Disorders/Asperger’s heading).

ADHD e-BOOK (free): As a pediatric neurologist deeply involved with ADHD, I have created a complete online book for my patients that I would like to make available to others as well. The book emphasizes current executive function research as the key to understanding and treatment. It empathically summarizes the best treatment advice; and includes chapter for parents, teachers, and the kids. The e-book can be easily found by going to www.PediatricNeurology.Com or directly to: www.pediatricneurology.com/adhd.htm.

I’m wondering whether anyone out there has experience with the oral chelation formula sold by Extreme Health USA.Com http://www.extremehealthusa.com/autism.html.  Please contact me at iamdistracted@hotmail.com with any positive or negative feedback.

 

 

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

“The Power of ONE! I.D.E.A.”

FREE and OPEN TO THE PUBLIC

www.unlockingautism.org

 

Lenny Schafer, Editor@feat.org    CALENDAR EVENTS@feat.org Michelle Guppy

Catherine Johnson PhD    Ron Sleith    Kay Stammers    Edward Decelie

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ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.