Autism Services for free?

Easter Seals in the Peoria and Bloomington areas of Illinois are looking for volunteer families to participate in the P.L.A.Y. project. Some families will be given one year in a community standard intervention group. Some will be chosen for one year in a community standard group plus the P.L.A.Y. project. Either way, your child would be getting extensive and sometimes expensive services at no cost. Easter Seals is offering this to find out whether kids in the P.L.A.Y. project have more success than those who do not participate.

Requirements: Your child must be 2 1/2 to 51/2 years old and diagnosed with an Autism Spectrum Disorder or in the process of getting that diagnosis. You have to be willing to spend 1-2 hours a day doing playful interaction with your child. You must agree to have your child periodically evaluated and you cannot be receiving more than 10 hours a week of therapy services for your child at this time.

If you or a family you know is interested, contact Jim Runyon at Easter Seals: (309) 686-1177 Ext. 2306

The last time I checked, they were looking for 5-6 families in Bloomington and 5-6 families in Peoria.

Easter Seals Peoria-Bloomington to Participate in The P.L.A.Y. Project Research Grant from the National Institute of Mental Health

Grant to Fund Research on Play-based Early Intervention for Autism; Confronts Increasing Numbers of Young Children on the Spectrum

Peoria, IL - Through the support of a $1.85 million grant from the National Institute of Mental Health (NIMH), Richard Solomon, MD, is conducting a three-year study of The Play and Language for Autistic Youngsters (P.L.A.Y.) Project Home Consulting model, a parent-training program that addresses the need for intensive early intervention for young children on the autism spectrum. Five sites have been selected for study participation throughout the Country, and local Easter Seals affiliate will serve as two of those five sites.

Today, approximately one in every 91 to 150 children is diagnosed with an autistic spectrum disorder (AAP and CDC). As the fastest growing disability in the U.S., autism continues to gain public attention, yet there is a national shortage of personnel trained in intensive approaches as recommended by the National Academy of Sciences (NAS). The P.L.A.Y. Project addresses this shortage by using a ‘train the trainer’ approach, which promotes rapid dissemination of the program.

Developed by Dr. Solomon, P.L.A.Y. is a practical, family-friendly application of renowned child psychiatrist Dr. Stanley Greenspan’s Developmental, Individual-differences, Relationship-based (DIR) framework, popularly known as Floortime. Through structured monthly home visits focused on modeling, coaching and video feedback, consultants train parents to engage their child with autism in ways that promote emotional connection and communication. By training parents to participate in their child’s intervention, the program also promises to be cost-effective. The P.L.A.Y. Project costs under $4,000 per year, in comparison with other interventions that cost $40,000 to $60,000 per year.

Details of the study: With research-design guidance from Michigan State University, and community-outreach support from Easter Seals, The P.L.A.Y. Project is conducting a randomized, controlled, and blinded clinical trial. Drawing participants from five Easter Seals autism service locations, including Peoria and Bloomington, the study compares the outcomes of 60 children who participate in The P.L.A.Y. Project with the outcomes of 60 children who receive standard, community interventions, making it the largest study of its kind. Before and after the 12-month intervention, each child is assessed with a battery of tests to measure developmental level, speech and language, sensory-motor profile, and social skills.

“Preliminary research and early dissemination into community agencies, schools and hospitals around the world has demonstrated the effectiveness of our model,” said Dr. Solomon, medical director of The P.L.A.Y. Project. “Positive research outcomes would support efforts to encourage private insurers and government agencies to approve increases in funding for play-based autism intensive intervention services and ultimately, help children with autism become more engaged with the world around them.”

About The P.L.A.Y. Project®

Created by Richard Solomon, MD and based on the DIR® (Developmental, Individual-differences, Relationship-based) theory of Stanley Greenspan, MD, The P.L.A.Y. Project emphasizes the importance of helping parents become their child’s best P.L.A.Y. partner through evidence-based practice. Practical, affordable, and family-friendly, the P.L.A.Y. Project Home Consulting model has become widely practiced with positive clinical and research results. The program is operating in three countries and 26 states in the U.S., including many Easter Seals locations. More than 300 trained Home Consultants serve over a thousand children on the autistic spectrum every year. For more information about The P.L.A.Y. Project, visit www.playproject.org.

-NewsAnchorMom Jen

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Gov't keeping baby's DNA

FROM CNN:When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.

While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.

It's simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.

In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center.

Many parents don't realize their baby's DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government's possession.

"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."

According to the state of Minnesota's Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research.

Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.

However, he added that storage of DNA for long periods of time is a different matter.

"I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous."

DNA given to outside researchers

Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns.

Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state. (To find out how long your baby's DNA is stored, see this state-by-state list.)

Brad Therrell, who runs the federally funded genetic resource consortium, says parents don't need to worry about the privacy of their babies' DNA.

"The states have in place very rigid controls on those specimens," Therrell says. "If my children's DNA were in one of these state labs, I wouldn't be worried a bit."

The specimens don't always stay in the state labs. They're often given to outside researchers -- sometimes with the baby's name attached.

According to a study done by the state of Minnesota, more than 20 scientific papers have been published in the United States since 2000 using newborn blood samples.

The researchers do not have to have parental consent to obtain samples as long as the baby's name is not attached, according to Amy Gaviglio, one of the authors of the Minnesota report. However, she says it's her understanding that if a researcher wants a sample with a baby's name attached, consent first must be obtained from the parents.

More Empowered Patient news and advice

Scientists have heralded this enormous collection of DNA samples as a "gold mine" for doing research, according to Gaviglio.

"This sample population would be virtually impossible to get otherwise," says Gaviglio, a genetic counselor for the Minnesota Department of Health. "Researchers go through a very stringent process to obtain the samples. States certainly don't provide samples to just anyone."

Brown says that even with these assurances, she still worries whether someone could gain access to her baby's DNA sample with Isabel's name attached.

"I know the government says my baby's data will be kept private, but I'm not so sure. I feel like my trust has been taken," she says.

Parents don't give consent to screening

Brown says she first lost trust when she learned that Isabel had received genetic testing in the first place without consent from her or her husband.

"I don't have a problem with the testing, but I wish they'd asked us first," she says.

Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.

"It's really a black mark against her, and there's nothing we can do to get it off there," Brown says. "And let's say in the future they can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."

Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company.

Caplan says taking DNA samples without asking permission and then storing them "veers from the norm."

"In the military, for instance, they take and store DNA samples, but they tell you they're doing it, and you can choose not to join if you don't like it," he says.

What can parents do

In some states, including Minnesota and Texas, the states are required to destroy a baby's DNA sample if a parent requests it. Parents who want their baby's DNA destroyed are asked to fill out this form in Minnesota and this form in Texas.

Parents in other states have less recourse, says Therrell, who runs the genetic testing group. "You'd probably have to write a letter to the state saying, 'Please destroy my sample,'" he says.

He adds, however, that it's not clear whether a state would necessarily obey your wishes. "I suspect it would be very difficult to get those states to destroy your baby's sample," he says.

I looked at the state list. It seems Illinois keeps your child's DNA for 2 months if none of the tests come back positive and four months if the child is at high risk of certain illnesses. That doesn't sound too bad. However, if your child tests positive for something, their DNA is kept indefinitely!I don't know a whole lot about this, but I wonder if that is really necessary. What is the point? And wouldn't that be expensive? How often is the DNA used?

-NewsAnchorMom Jen

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Pregnancy Brain

Oh Man! I completely thought pregnancy brain was true! During my last pregnancy, I actually forgot to take the keys out of my van when I got to work. It sat in the parking lot running all day! I was frantically searching the building for my car keys. When I finally walked outside, I realized where they were! That had to be the pregnancy! I have never done anything like that before!

FROM NBC: The term "pregnancy brain" has been used to describe the forgetful tendencies of pregnant women -- but a new study finds the condition can be added to the long list of pregnancy myths. Researchers in Australia followed a group of one thousand women for eight years.

The participants underwent memory tests every four years. During the study about half the women became pregnant, yet experts did not find any significant change on their memory test performance.

Researchers say pregnant women may have shifted their attention to their baby, or the fatigue linked to pregnancy can make them lose concentration. So, while many pregnant women and mothers will disagree, researchers say locking your keys in the car for the fourth time in two months cannot be blamed on baby!

-NewsAnchorMom Jen

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Happy 5 Months

I love, love, love this age. My baby is five months old this week. I can hardly believe it. I came home tonight and he cried for me to pick him up. Then he stuck his thumb in his mouth and put his little head on my shoulder. I love it when they start understanding what is going on around them and they smile constantly! It is so wonderful!

-NewsAnchorMom Jen

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Top 50 Child Health Blogs

NewsAnchorMom.com is #11 on the top 50 child health blogs! I thought you might want to check out the list. Some of the blogs focus on specific illnesses.

-NewsAnchorMom Jen

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More recalls due to lead paint

Playmates Toys, in conjunction with the U.S. Consumer Product Safety Commission, is recalling about 252,000 Tiny Tink and friends children's toy jewelry sets. The metal connector on the charm may contain excessive amounts of lead. Consumers should throw the items away, and can contact the company at www.playmatestoys.com for information for a replacement.

Meanwhile, Schurman Fine Papers is recalling its children's greeting cards with bracelets as well. about 174,000 of the cards are under the recall. The paint coating on the Chinese-made bracelets contain excessive lead levels. Consumers should stop using them and contact Schurman Fine Papers at 888.990.9095 for information on how to get a refund.

-NewsAnchorMom Jen

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Controversial Genetics Test

I actually don't have a problem with this if it is just to help the parents prepare for a baby who may have difficulties. I would imagine the controversy comes in when parents do in vitro just to make sure they are getting a healthy baby. I wouldn't have a problem with that if the genetic testing could be determined before the embryo is formed. Obviously that is not how in vitro works though. I can see why a lot of people would be upset by this test. I don't want to judge the parents who decide to use it. Maybe they have determined it is best for their family.

FROM CNN: A simple new test raising complicated issues. A California company is promising parents-to-be a look into the future -- to see if their children would be at risk for more than 100 different diseases. But after the test.. what do you do?

They are eager to start a family. Ally Zwahlen and her husband Steve are both in good health. But are they at risk of having children with a rare, inherited disease? The answers could come from this bold, new form of genetic screening. Ally Zwhalen: "I'm confident that it's going to alleviate a lot of uncertainties, and provide peace of mind."

Some doctors are unabashedly "gushing" about the new test. Dr. Aimee Eyvazzadeh from John Muir Health Systems: "I'm very enthusiastic about it, I tell all my friends about it. You know, my girlfriends who are getting married right now and who are planning a pregnancy? I tell them: 'before you get pregnant, do this test'. " Unlike "traditional" genetic tests that require a blood sample to help carriers of find one specific disease, the new test uses a little saliva to look for genetic markers linked to 109 inherited diseases from Cystic Fibrosis and Pompe Disease to sickle cell and Tay-Sachs disease.

Ramji Srinivadsan: "We are looking for mutations that parents unknowingly carry ... before today, it had never been easy, convenient and reliable to get a pre-pregnancy test at home. "For $350, the samples are analyzed at this lab near San Francisco; screened, simultaneously, for more than 400 genetic mutations with the results available in less than a week. If both husband and wife test positive for the same disease, there are steps they can then take... including invitro fertilization where doctors could check each embryo and implant only those that appear free of the specific disease.

We contacted many geneticists. While excited about the new test they do urge caution. Dr. Priya Kishnani from Duke Univ. Med. Center:"This new genetic test is an important first step. However the jury is still out on whether it can deliver everything it promises." More such tests are now likely to follow-- offering families a greater chance for a healthy baby.

-NewsAnchorMom Jen

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Dr. Andrew Wakefield and Autism

This is pretty interesting. If you know about the autism/vaccine controversy, you have heard about Dr. Wakefield. Here is the story that aired on NBC last week. I wish I had seen it! I am curious to know what you guys think about this one...

FROM NBC: It's been a controversy for years: is there a link between autism and a common childhood vaccine? Now, one medical group has declared that Dr. Andrew Wakefield, the doctor who first raised that possibility, carried out his research in an unethical and irresponsible manner. A finding he flatly denies.

Dr. Andrew Wakefield's 1998 study suggesting the possibility of a link between autism and the MMR vaccine gave many parents around the world a reason to stop vaccinating and parents of children with autism a possible answer to the devastating question---- why?

Dr. Wakefield: "They took their children to be vaccinated, and then something happened; their children fell apart." But in the years following his publication in the "Lancet", no large-scale study could reproduce exactly what Dr. Wakefield's small study found and to investigative reporter Brian Deer, **that** raised a lot more questions than answers.

Deer: "He was not an independent researcher." Deer learned that Wakefield was working as a paid expert in a class action suit being planned against makers of the MMR by parents who believed their children were damaged by the vaccine. Brian Deer: "Dr. Wakefield was being paid by a firm of lawyers for two years before he ever published this report." sot matt lauer "no disputing that?" Brian deer "no disputing that."

Deer says it was a conflict of interest that should have been disclosed in the study, but never was. In an exclusive interview this summer, Dr. Wakefield *admitted* he was paid to conduct research on behalf of the plaintiffs, but said it was for a **later** study, one that never got published.

Matt Lauer: "So you'll look at me in the eye and say that at the time you were doing your research, you were guilty of no conflict of interest whatsoever in-- in either research or the dealing with those children you studied?"

Andrew Wakefield "No, not at all. And had I been, it would've been disclosed."

Because of Deer's reports, the general medical council -- which licenses physicians in the UK-- began investigating Dr Wakefield, including looking at the unusual way he got children's blood samples for his research.

Andrew Wakefield "We needed some control blood from children who were entirely normal. and So I asked my children and my wife said, 'we've got a birthday party coming up. we've got some medical friends. why don't we ask them if they'd be prepared to let their children do it, too?' so seven or eight children said, 'sure.'"

Matt Lauer "I don't know why that sounds funny to me, but it does. At a children's birthday party, blood samples being drawn from children. Were they paid for the samples?" Andrew Wakefield "They were rewarded. They weren't paid."

Matt Lauer "How were they rewarded?" Andrew Wakefield "At-- at the end of the party, they were given five pounds about-- at the time, I guess about-- eight dollars." Matt Lauer"Why isn't that paying them?" Andrew Wakefield: "Well, it's not saying up front by coercing them, 'you do this. we're gonna give you money.' it's saying at the end of it, 'here's a reward for-- for helping.' it's a-- it's a different thing in-- in ethical terms."

The British Medical Council disagreed. Now, two and half years after they began their inquiry, found that Wakefield's actions were unethical, and that he had acted "dishonestly and irresponsibly." Still, Wakefield's supporters are standing firm and Dr. Wakefield vows to press on. Wakefield: "The allegations against me and against my colleagues are both unfounded and unjust. The science will continue in earnest."

Dr. Wakefield will learn his fate this summer, when the general medical council decides whether to strip him of his license to practice or to do nothing at all. In the meantime, he continues his work here in the U.S., where he is Director of Research for an Autism Treatment Center in Austin, Texas.

-NewsAnchorMom Jen

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