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Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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TACA E-Newsletter

May 2010 #2

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

1. Find a TACA Meeting

Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

2. Join Us for Coffee Talk!

Come and receive some extra support or to
chat all topics related to autism and meet
other TACA families at these informal,
monthly get-togethers.

  

3. Autism Journey Seminars

Orange County, CA

Saturday, June 26, 2010, 8:30 a.m.-4:30 p.m.

Saturday, September 25, 2010, 8:30 a.m.-4:30 p.m.

After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day Autism Journey Seminar is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Who should attend?
Our one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 18 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Register Online

4. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

5. Coalition for Vaccine Safety (CVS) Calls on FDA Commissioner to Immediately Suspend All Contaminated Rotavirus Vaccines

FDA Expert Advisory Panel Fails to Follow Safety First Agenda for Childhood Vaccines Containing DNA from Pig Viruses

WASHINGTON, May 10 /PRNewswire-USNewswire/ -- On Friday, the Food and Drug Administration (FDA) convened a panel of experts to review recent findings that rotavirus vaccines given to infants in the U.S., Rotateq, produced by Merck Pharmaceuticals and Rotarix produced by GlaxoSmithKline, are contaminated with DNA from pig viruses PCV1 and PCV2.  On March 22nd  the FDA Commissioner asked doctors to suspend use of the Rotarix vaccine due to the contamination.  Upon additional testing, Rotateq was also found to be contaminated.

At the meeting, the experts acknowledged that the PCV2 virus is known to cause a wasting disease in pigs, similar in type to the AIDS virus in humans. While acknowledging that the entire short and long term risks from the porcine circoviruses PCV1 and PCV2 are as yet unknown, the advisory panel decided that 'the benefits of the vaccine trump its risks.' By contrast, health authorities in Hong Kong ordered an immediate recall of Merck Rotateq despite the U.S. panel's recommendation to keep the vaccine on the market.

Shocked at the advisory panel's recommendations for the health and safety of American children, the Coalition for Vaccine Safety (CVS) calls on FDA Commissioner Hamburg to re-assess the panel's hastily-considered risk-benefit analysis and suspend the use of both rotavirus vaccines.  Steering Committee member Mary Holland said, "How can you say the benefits outweigh the risks when you don't know what the risks are?" A safety first agenda demands suspension of the vaccines immediately while the short and long term risks are studied, especially since rotavirus is a relatively benign and treatable gastrointestinal disease that is rarely fatal in the United States.

The risks from PCV1 and PCV2 are real and potentially testable by analyzing lymphoid tissues, which is where the human immunodeficiency virus hides during its latency period.  Immediate independent analysis should be done on children and primates who have received these vaccines before another child receives the rotavirus vaccine.  According to CVS member Lyn Redwood, RN, "It is impossible for parents to give free and informed consent to a vaccine containing pig virus DNA when their risks are unknown.  To continue to administer these vaccines given the impossibility of informed consent is unethical."

The FDA expert panel's failure to urge suspension of contaminated vaccines underscores the need for immediate Congressional hearings on vaccine safety.  The apparent conflicts of interest in the U.S. vaccine program are illustrated by the fact that the Director of the Centers for Disease Control and Prevention (CDC) until January 2009, Dr. Julie Gerberding, is now the President of Merck Vaccines. In 2007, under her stewardship, 97% of CDC outside experts failed to complete their conflict of interest disclosure forms as required by law. The lack of direct corporate accountability for vaccine products, codified by the 1986 Childhood Vaccine Injury Compensation Act, further complicates conflicts of interests in the national vaccine program.

CVS is an alliance of organizations dedicated to vaccine safety representing over 75,000 families.  In recent letters to the Chairmen and Ranking Members of House and Senate Committees charged with oversight of the Department of Health and Human Services (HHS), the Coalition called for hearings to investigate HHS, CDC and other government agencies.  These federal agencies have failed to comply with the terms of the 1986 Vaccine Injury Compensation Act (VICA) by not providing critical vaccine safety science.

For more information on vaccine safety, visit www.coalitionforvaccinesafety.org.

6. Turns out Autism IS associated with GI disorders

... who knew?

Adventures in Autism

And oddest thing of all, this was "discovered" by Autism Speaks and The Autism Treatment Network, which is Kennedy Krieger, which is Johns Hopkins, not exactly friendly factions to biomed really.

So you think that they will pick up the phone and call ARI and apologize for dissing them for a decade or so, and then say sorry to the children who have been suffering while they conferenced and committied and scoffed and vacationed?

www.abstracts2view.com/pas/view.php?nu=PAS10L1_1926&terms

[2320.7] GI Symptoms in Autism Spectrum Disorders (ASD): An Autism Treatment Network Study

Kent Williams, George J. Fuchs, Glenn Furuta, Margaret Marcon, Daniel L. Coury, Autism Treatment Network GI Committee. Vanderbilt University, Nashville, TN; University of Arkansas for Medical Sciences, Little Rock, AK; University of Colorado at Denver, Denver, CO; Hospital for Sick Children, Toronto, Canada; Nationwide Children's Hospital, Columbus, OH.

BACKGROUND: The prevalence of GI symptoms in children and adolescents with ASD is uncertain, with studies reporting conflicting results.

OBJECTIVE: To determine the frequency of GI symptoms as reported by parents in a large ASD registry, and to identify factors associated with GI symptoms in children with ASD.

DESIGN/METHODS: Autism Treatment Network Registry enrolled 1420 children, age 2-18 years, with an ADOS-confirmed ASD diagnosis (autism, Asperger disorder, or PDD-NOS) at 15 sites in the US and Canada. Parents completed a GI symptom inventory tailored to the needs of nonverbal children, as well as Child Behavior Checklist (CBCL), Child Sleep Health Questionnaire (CSHQ) and Pediatric Quality of Life (PedsQL) at time of enrollment.

RESULTS: GI symptom data were available for 1185 children. Overall 45% of children were reported to have GI symptoms at time of enrollment. Of GI complaints that occurred within the 3 months prior to enrollment, abdominal pain was most common (59%) followed by constipation (51%), diarrhea (43%), other (40%), nausea (31%) and bloating (26%). Reports of GI symptoms increased with age, ranging from 39% in those under 5 years to 51% in those 7 years and older (p<0.0001). Children ages 1 to 5 years with GI symptoms had higher CBCL t-scores for total problems and for the emotionally reactive, anxious/depressed, somatic complaints, sleep problems, internalizing problems, affective problems, and anxiety problems subscales, all p<0.05. Children ages 6 to 18 years with GI symptoms had higher CBCL t-scores for total problems and for all subscales (p<0.01). Sleep problems occurred more frequently in children with than those without GI symptoms (70% versus 30%, p<0.0001). Children with GI symptoms had lower PedsQL scores (overall score and all five subscales, p<0.01) compared to children without GI problems. Presence of GI problems did not differ by gender, ASD subtype, race, or IQ.

CONCLUSIONS: Parents of children with ASD report a high prevalence of GI symptoms in their children. This prevalence increases with age. GI complaints are significantly associated with behavioral abnormalities in all age groups. GI symptoms are also significantly associated with sleep disturbances and decreased health-related quality of life. Further definition is needed on the role and potential impact of treatment of GI disorders on behavior, sleep disturbance, and quality of life in children with ASD.

And don't forget to tune into NBC to see Dr. Nancy apologize and BBC America to see the British Medical Establishment express their profound regret to Wakefield et. al and the families they have sabotaged as their children languished in GI distress that they claimed didn't exist.

Brian Deer must feel really awful right now. I can't imagine his guilt.

7. GI problems common in children with autism

UPI.com

VANCOUVER, British Columbia, May 3 (UPI) -- Gastrointestinal symptoms occur in almost 50 percent of children with autism spectrum disorders, U.S. researchers found.

The study, conducted by Autism Speaks' Autism Treatment Network, also found GI symptoms such as abdominal pain, constipation and diarrhea increased as children get older.

Dr. Daniel Coury, medical director of the ATN and of Ohio State University, and colleagues examined data from 1,185 children and found 45 percent had GI symptoms at the time of enrollment. Previous research resulted in conflicting results, Coury said.

Thirty-nine percent of children under the age of 5 reported symptoms, while 51 percent of children age 7 and older reported GI symptoms.

"These findings suggest that better evaluation of GI symptoms and subsequent treatment may have benefits for these patients," Coury said in a statement.

"Primary care physicians and specialists should ask families about these symptoms and address these as part of the overall management plan for the child or adolescent with autism spectrum disorders."

The findings were presented at the Pediatric Academic Societies annual meeting in Vancouver.

8. Parents of Autistic Children Turning to Alternative Treatments

Little research supports most options, but families driven by need to help, experts say

By Jenifer Goodwin
HealthDay Reporter, BusinessWeek.com

SUNDAY, May 2 (HealthDay News) -- About one in five children with autism uses alternative treatments to help with the neurodevelopmental disorder, most often a special diet, a new study finds.

Of 1,212 children with an autism spectrum disorder included in the study, about 17 percent were on special diets. More than half of those were on a gluten-free, casein-free diet, which eliminates wheat and dairy products. Other common dietary changes included avoiding processed sugars and taking probiotics, microorganisms found in foods such as yogurt and supplements that may help maintain gut bacterial flora.

"People turn to complementary and alternative treatments anytime they perceive conventional medical treatments as either not doing the job or being too expensive, or that the complementary and alternative treatments are more natural," said Dr. Daniel Coury, medical director of the Autism Treatment Network and a professor of pediatrics and psychiatry at Ohio State University. "We see the same sorts of reasons among children on the spectrum."

The study was to be presented Sunday at the Pediatric Academic Societies' annual meeting in Vancouver, British Columbia, Canada.

Other alternative treatments parents reported trying for their kids ran the gamut from hyperbaric oxygen, which involves pressurized chambers with oxygen-rich air that usually are used to treat divers with the bends, to chelation therapy, a treatment that removes heavy metals from the body. That treatment stemmed from fears that mercury causes autism, Coury said.

Despite significant publicity about the methods, less than 1 percent of parents had tried them, the study found. And that's a good thing, Coury said, because there's no evidence that either works and some evidence that they might be dangerous.

Parents might be turning to special diets because of reports that autistic children are more prone to gastrointestinal (GI) problems. Though earlier studies have had mixed results about the prevalence of GI issues, a second study also slated for presentation at the meeting found that parents reported GI symptoms in nearly half of the children.

For that study, families of 1,185 children enrolled in the Autism Treatment Network filled out questionnaires about GI symptoms, behavior, sleep and quality of life.

About 45 percent reported their children had GI symptoms, such as abdominal pain, constipation and diarrhea. The problems were more common as children got older, affecting about 9 percent of children younger than 5 and 51 percent of children 7 and older.

Their symptoms were bad enough to affect the quality of their lives, with about 70 percent of children with GI symptoms having sleep problems, compared with 30 percent who didn't have GI issues, the study found.

Kids with GI issues also have more behavioral issues, possibly because of their lack of sleep, suggests a third study from the meeting, which included 1,056 children in the Autism Treatment Network. It found an association between sleep problems and behavioral issues that included emotional problems and anxiety.

Autism is a complex disorder, and parents are driven by the desire to help their children, said Dr. Paul Law, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore. He said he's seen hundreds of alternative treatments tried by parents: supplements and vitamins, acupuncture, acupressure, bathing in distilled water and various types of animal therapy, among them. One mother, Law said, had tried 68 different methods.

Though it's not hard to find testimonials about the effectiveness of one treatment or another, medical evidence that they work is scanty, and the placebo effect can be powerful, Law said.

"There is an adage in medicine that the more you don't know about how to treat something, the more treatments there are," Law said, noting that medications can treat some of the symptoms of autism, but no medication treats the autism itself.

Coury agreed. "For the majority of these treatments, there is no good research to support their effectiveness," he said.

Treatments that have been shown to work include behavioral interventions and medications that can help curb aggressive and other behavioral issues, Law said.

About 27 percent of children with an autism spectrum disorder are taking at least one medication to manage their behavior, according to a fourth study from the meeting. It found that the most common reasons for medication use were hyperactivity, repetitive behaviors, irritability and problems with attention.

Of the children taking medications, nearly half were taking two or more medications.

Medication use became more common as children got older, the study found. About 60 percent of children aged 11 and older took medication, compared with 44 percent of children aged 6 to 10, 11 percent of children aged 3 to 5 and 4 percent of kids younger than 3.

The most common medications were stimulants to treat attention-deficit/hyperactivity disorder (ADHD) and risperidone (Risperdal), approved by the U.S. Food and Drug Administration to treat irritability, aggression, temper tantrums and self-injurious behavior.

About one in 110 U.S. children has autism, which is characterized by difficulties with social, language and communications skills and restricted or repetitive behaviors or interests.

The Autism Treatment Network, run by Autism Speaks, a New York-based research and advocacy organization, includes 14 treatment and research centers in the United States and Canada for children with autism who are 2 to 18 years old.

9. Study: More Parents Refuse or Delay Vaccinations for Kids

Dr. Besser Weighs in on Study Showing Sharp Increase in Refused, Delayed Vaccinations

By LARA NAAMAN, ABC News
May 5, 2010—

The percentage of parents who refused or delayed vaccinations for their children rose sharply in the past decade, a study presented at a medical conference today showed.

Thirty-nine percent of parents refused or delayed vaccinations for their kids in 2008, up from 22 percent in 2003, according to the study by the Centers for Disease Control and Prevention, the University of Rochester and the National Opinion Research Center.

Parents refused or delayed vaccinations for various reasons, including the health of the child, the belief that recommended vaccines were excessive, questions about their effectiveness and concerns about possible side effects such as autism -- although there's no scientific link.

Such concerns created delays that worried ABC News senior health and medical editor Dr. Richard Besser.

"The issue with hesitance or delaying vaccinations is that the period that you are at risk increases," he said. "If you are in a community where a lot of parents are refusing vaccination, delaying vaccination may pose a risk."

Dr. Mark Sawyer, a pediatrician at Rady Children's Hospital in San Diego, agreed, saying in March that "the risk from the diseases vaccines prevent is what parents should be concerned about."

Click here to read Besser's expert column for more on balancing vaccinations and risk.

Besser also said the increased number of vaccines available by 2008 should be taken into consideration.

"While the percentage of parents delaying and refusing vaccines has gone up, we offered more vaccines in 2008 than in 2003," he said. "So there were more opportunities to delay or refuse getting them in 2008 than there were in 2003. It's important to note that vaccine coverage overall has increased during the study period."

Based on the study, which was presented at the 2010 Pediatric Academic Societies' Annual Meeting in Vancouver, Canada, Besser said 0.6 percent of children between ages 19 months and 35 months remain unvaccinated.

"While some children are not vaccinated by the recommended age, most of them do end up getting all of their vaccines," he said.

Although the percentage of parents refusing or delaying vaccinations rose, CDC data indicated that vaccination completion of the primary vaccines by age 2 increased overall between 2003 and 2008, the year for which the most recent data is available.

Today's study may indicate that more parents are spacing out vaccines and possibly refusing newer vaccines, Besser said.

Playing With Unvaccinated Children

The risk of letting a child play with an unvaccinated child is small but real, Besser said.

"Not all vaccines are 100 percent effective," he said. "Unvaccinated playmates may put you at risk if your vaccine did not provide complete protection. ... It depends on the infection you are talking about and how it is transmitted.

"Just realize that as the number of vaccine refusers rises, there is risk."

When he was a practicing pediatrician, Besser said, he often told mothers who refused vaccinations to find another pediatrician.

"I regret that now," he said. "Now, I try to develop an open relationship and provide parents with information so that they can make an informed decision. In the end, it's the parent's decision.

"I know of nothing we do in pediatrics that has as much proven value as vaccinations -- not all parents agree," he said.

PBS's "Frontline" recently tackled the vaccine debate in a new documentary called "The Vaccine War." Click here to learn more from its website.

10. What to Do About All These Non-Vaccinating Families

Huffington Post

Dr. Bob Sears
Pediatrician and author of "The Vaccine Book" and "The Autism Book"
Posted: May 5, 2010 10:12 AM

Today's USA Today story on the increasing trend of vaccine refusal shared some interesting information, but fell short of actually providing useful or workable answers. The article cites a new CDC study that showed in 2003 only 22 percent of parents refused or delayed a vaccine for their child, whereas in 2008 this number soared to 39 percent.

For many years I believe the CDC has been trying to hide the fact that more and more parents are refusing or delaying vaccines. Why? Because if compliant parents hear that their neighbors or friends are questioning vaccines, they might start to think, "Hmm ... maybe I should begin to question vaccines as well. I think I'll start doing some research and educating myself about vaccines instead of just taking my doctor's word for it."

And this story tries to sugar-coat the issue as well, stating that "parents in 2008 had more opportunities to delay shots than they had five years earlier" because three new vaccines have been introduced. I don't by it. This implies that some children aren't receiving all their vaccines because some vaccines are new. I would look at it differently: More and more parents are beginning to question the vaccine schedule -- not just the new vaccines, but the manner in which so many are being given at a time. This trend has nothing to do with the new shots. Compliant parents wouldn't even question new shots anyway. And they wouldn't even be aware that their baby is getting a new shot because they wouldn't even ask. Again, the CDC doesn't want those parents who are being good little patients and getting all their shots, no questions asked, to start wondering why more and other parents are refusing.

Then the story turns to the measles epidemic that has "ravaged" the country. While measles can occasionally be severe and cause a fatality, the fact is that measles has remained the same in our country over the last decade -- about 100 to 150 cases each year, with NO increase and NO fatalities! If the CDC is going to convince parents to stop questioning vaccines, they'll need to come up with some better arguments than that.

Hey, I know! How about some new and expanded safety research! The only way non-compliant parents are going to stop worrying about vaccines is if we can give them the type of safety research they want: large-scale, prospective, double-blind, placebo-controlled, long-term research. So, 20 years from now we'll have that research. But what do we do in the meantime?

Here's what the AAP says to do in their official policy (found on page eight of the Red Book, sitting in every single pediatrician's office in the country):

• Treat these parents with respect
• Listen to their concerns
• Clearly discuss the importance of vaccines and the risks of the diseases
• If the parents remain non-compliant, the doctor can serve these patient's needs by (and I quote) "developing a schedule of immunizations that does not require multiple injections at a single visit."
• "Continued refusal after adequate discussion (I continue to quote) SHOULD BE RESPECTED."

The number of physicians who actually follow the AAP's advice is dismally small. I've been creating a growing list of Vaccine Friendly Doctor's on my website who WILL listen and respect these patient's wishes and who will provide an alternative vaccine schedule for patients who want to vaccinate differently. But it's slow going. I just don't understand why the AAP would even bother making such a policy if they won't try to get their members to follow it.

Dr. Offit and many other physicians like him who believe we should NOT provide alternative schedules are actually MAKING THE PROBLEM WORSE. By kicking these patients out of their office and refusing to vaccinate these patients in a manner they will comply with, these doctors are leaving such babies unvaccinated. On the other hand, sometimes these doctors DO manage to talk (bully) their patients into starting their little two-month-old babies on the regular schedule. Most of these parents end up leaving such a doctor and going somewhere else.

In my humble (but outspoken) opinion, the ONLY way to increase vaccination rates in our country at this time is to provide alternative approaches that worried parents will feel more comfortable with. The PR campaign that the AAP and CDC are launching probably won't do a thing. That's because the campaign doesn't include new safety research. It isn't saying, "Hey, look America -- we've proven vaccines, and the schedule by which we give them, are perfectly safe!" Instead, it's saying "The diseases can be bad (which they can), so everybody get in line!" I just don't think that's going to work. That's using scare tactics, not education. By adopting the AAP policy of providing alternative schedules, more and more doctors can serve their patients and keep the vaccine-preventable diseases at bay.