PDD-NOS

Autism And Motor Skills Correlate To Improved Adaptive Behaviors

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Parents of children with autism spectrum disorders often face greater challenges finding the best learning therapies for their child. A new study looks at children with autism who have better fine motor skills and if having those skills improves learning development. The researchers found that the participants with higher levels of fine motor skills did indeed display stronger daily living skills including better social and communication abilities.

Autistic children with better gross motor skills tended to have stronger daily living skills as well.

Results of the study suggests that helping children with autism develop stronger fine motor skills may improve their adaptive behavior skills as well.

Fine motor skills involve the small muscles of the body that enable such functions as writing, grasping small objects, and fastening clothing. They involve strength, control and dexterity.

Gross motor skills refer to movements that involve large muscle groups and are generally more broad and energetic than fine motor movements. These may include walking, kicking, jumping, and climbing stairs.

The study, led by Megan MacDonald, PhD, of the School of Biological and Population Health Sciences at Oregon State University, looked at whether autistic children’s motor skills were related to their adaptive behavior skills.

Researchers studied 233 children, aged 1 to 4, who had varying diagnoses of developmental delays or disorders.

Among these children, 172 had autism spectrum disorder, 22 had pervasive developmental disorder-not otherwise specified (PDD-NOS), and 39 had developmental delays that were not related to autism.

The researchers assessed the children’s development with an instrument that measures their gross motor skills, fine motor skills, visual reception (nonverbal problem solving), receptive language (comprehending/listening/understanding language) and expressive language (expressing one’s self through language).

Then the researchers used a different test to assess the children’s adaptive behavior skills, which included overall behavior, daily living skills, communication skills and adaptive social skills.

The children’s age, non-verbal problem-solving skills and the severity of their disorder were taken into account.

The researchers found that the children’s levels of fine motor skills predicted how well they scored on all the sections of the adaptive behavior skills assessment.

In addition, the children’s motor skills predicted how well the children did with daily living skills.

The children who had weaker fine or gross motor skills also had greater difficulties with adaptive behavior skills.

“The fine and gross motor skills are significantly related to adaptive behavior skills in young children with autism spectrum disorder,” the researchers wrote.

“Motor skills need to be considered and included in early intervention programming,” they wrote.

Glen Elliott, MD, PhD, a clinical professor at the Stanford University Department of Psychiatry and Behavioral Sciences, offered his perspectives on the study’s findings.

“This study nicely demonstrates that, on average, children with autism show a correlation between fine- and gross-motor skills and a range of daily living skills and adaptive behaviors,” Dr. Elliott said.

“The authors imply that this may suggest the value of emphasizing early intervention on motor skills along with other areas of deficits,” he said.

“However, it is possible that they are confounding correlation with causation: that is, their observations might equally reflect some other factor, such as overall developmental delays that result in both delayed motor skills and delayed adaptive behaviors,” Dr. Elliott suggested.

“Still, given the increasing evidence of the importance of early interventions in help maximize ultimate outcomes in children with autism, research to explore the usefulness of interventions focusing on motor skills well might be merited,” he said.

This study was published in the November issue of Research in Autism Spectrum Disorders.

http://www.kvue.com/news/health/kids-doctor/226761311.html

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More Apps For Autism

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NEW TECH CITY: FIVE GREAT APPS FOR KIDS WITH AUTISM

Five-year-old Quentin, who is autistic, uses an iPad to help him communicate

My name is Melissa Morganlander and my 5-year-old son, Quentin, has been diagnosed with PDD-NOS, a form of autism. Here are five great apps that have helped him greatly, which I have reviewed on my blog, the iQ Journals.

1. Kid in Story – Social stories are step-by-step picture books that help children with autism understand a social event that might otherwise be confusing, frustrating or simply upsetting. This app allows you to create your own social stories and include your child’s photo and record your own audio. I loved using it to prep my son for our trip to Disney World.

2. Model Me Going Places – This great little app does not get nearly enough praise as it should, in my opinion. It uses video modeling to depict some social situations that children with autism often struggle with. Quentin has watched all the videos, multiple times. The best part? It’s free!

3. VAST Autism 1 – Core – This app uses video modeling for speech. Like so many children with autism, Quentin learns best with visual imagery. This app is packed with extreme close-up videos of a mouth speaking basic words and phrases. It’s a little odd to watch at first, but for children who struggle with expressive language, it could prove to be really helpful.

4. Toca Boca Hair Salon – While this app is not specifically for children with autism, I discovered it helped my son so much with something he struggled with: getting a haircut. Like most apps from Toca Boca, this is about open-ended play. Being able to be in control of an animated client in the salon chair can really put your haircut-fearing child at ease after several rounds.

5. Go Go Games – This app, designed by graduate students at Stanford University, is a set of games specifically designed for kids on the autism spectrum. The games focus specifically on the skill of matching objects, which can be difficult for some people with autism.

http://www.wnyc.org/shows/newtechcity/2013/jun/04/five-great-apps-kids-autism/

New Culprit: Folic Acid Deficiency

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Hot off the presses! Folic acid taken during pregnancy may (or may not) lower the risk of having a child with autism.  Good right? Maybe.  As with all scientific studies, I urge caution as the population that was studied, might not be representative of every woman.  In this case that population was 85,000 Norwegian kids, whose mothers and mothers’ obstetricians filled out surveys.  The study also excludes AS and PDD-NOS.  Do any of you know how much folic acid is in your multivitamin? Anyone? Anyone?  Not the best study design, you have to admit.  Also, check out the ‘critical window’ period; from 4 weeks before conception to 8 weeks gestation.  

What happened to other recently touted ’causes’ for autism: pollution, maternal obesity, autism in other/older siblings, some of the above, or all of the above.  Just another shot in the dark about the multitude of possible etiologies of Autism.  Can you envision a soon-to-be-mom taking mega doses of vitamin B-9 (that’s folic acid) because she worries about her child being diagnosed with autism?  In case any of you are wondering: yes, you can overdose from folic acid, which is also found in food sources, and that information is listed in the second article below.  

I’m not really trying to pooh-pooh this study; just looking at it with my own perspective.  Take a deep breath, read up on it, talk it over with your doctors, and take your vitamins. -Ed

STUDY LINKS FOLIC ACID TO LOWER AUTISM RISK

Pregnancy

Women who took folic acid supplements before and during pregnancy were about 40% less likely to have a baby later diagnosed with autism, according to a provocative new study generating high interest in the scientific community.

The dramatic increase in the prevalence of autism spectrum disorders, which affect one in 88 children, has generated intense interest in learning the causes of autism, as well as better ways to treat and prevent the condition.

In the new study, which included more than 85,000 Norwegian children, doctors asked pregnant women to fill out a questionnaire about supplement use, both before and during their pregnancies. Researchers then followed the children, born between 2002 to 2008, for an average of six years. The study was published online Tuesday in the Journal of the American Medical Association.

Doctors have encouraged women to take folic acid before and during pregnancy for years, because it can reduce the risk of birth defects.

In this study, the critical window for folic acid consumption was four weeks before conception through the eighth week of pregnancy. Overall, women who took supplements during this window were 27% less likely than others to have a baby with any autism spectrum disorder, which includes autism disorder — the most severe form — as well as Asperger’s syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS).

Women who took folic acid during that window were about 40% less likely to have a child later diagnosed with autism disorder.

Taking folic acid in mid-pregnancy, measured at week 22, was not associated with a decreased risk. Researchers also found no link between fish oil supplements and autism risk.

In addition, researchers found no decrease in the individual risk of two milder subtypes of autism — Asperger’s syndrome or pervasive developmental disorder — which tend to be diagnosed later. It’s possible that children in the study, at an average age of 6, were too young for these disorders to have been diagnosed, says study co-author Pal Suren, of the Norwegian Institute of Public Health in Oslo.

The study’s results confirm findings from earlier, more preliminary studies linking folic acid and autism risk, says Craig Newschaffer, director of Drexel University’s Autism Institute in Philadelphia. Other studies also have found that children whose mothers took folic acid were less likely to have language delays.

While scientists will need to confirm the results with additional studies, Newschaffer says “it provides additional evidence that we may eventually be able to develop solid strategies to effectively prevent some forms of autism.”

Folic acid, a B vitamin, is essential for synthesizing and repairing DNA, Suren says. It appears to play a key role in the first days and weeks of embryonic life, before women even know they’re pregnant. Scientists can’t explain, however, exactly how folic acid prevents birth defects.

Folate, the natural form of folic acid, is found in lentils, spinach, black beans, peanuts, orange juice, romaine lettuce and broccoli. Most people don’t get enough folic acid from food, however. Two-thirds of women don’t even know it’s important, according to the March of Dimes.

For that reason, doctors recommend all women of childbearing age take 400 micrograms of folic acid a day. In the USA, grains such as flour, rice and cereal have been fortified with folic acid since 1998. Norway does not add folic acid to foods.

Many women wonder what they can do to reduce the risk of autism, especially if they already have one autistic child.

“We get questions from women all the time, asking, ‘What can I do? What can I do?’ ” says Alycia Halladay, senior director for environmental and clinical sciences for Autism Speaks, an advocacy group.

But Halladay notes that taking folic acid doesn’t guarantee that women won’t have a child with autism. Some women in the study still had an autistic child after taking the supplements.

“I do worry that women who didn’t take folic acid during that critical time period might feel somewhat responsible, that it’s the ‘mother’s fault’ again,” Halladay says.

And although the symptoms of autism often become clear only after a child’s first birthday, this study is one of many suggesting that the biological changes driving autism occur either before conception or during pregnancy, Suren says.

Doctors have isolated genetic causes for only about 15% of cases of autism, according to the National Institutes of Health, although studies show couples with one autistic child are at increased risk of having another.

Additional factors contributing to autism include premature birth, low birth weight, prenatal exposure to certain medications or air pollution and maternal infections during pregnancy. Children are also more likely to develop autism if they’re born to older fathers or they’re born less than a year after an older sibling, studies show.

Doctors say the condition should really be called “autisms.” That’s because research strongly suggests that autism is not a single condition, but a group of conditions with similar symptoms and different causes, says co-author Deborah Hirtz, of the National Institute of Neurological Disorders and Stroke, which helped fund the study.

Autism is an incredibly diverse diagnosis. Some severely disabled children are unable to speak and prone to injuring themselves, while many adults with Asperger’s syndrome have successful careers in science.

Both doctors and parents have wondered why the prevalence of autism has grown so dramatically in recent decades.

The new study raises additional questions, says Cathrine Hoyo, a professor of epidemiology at Duke University School of Medicine in North Carolina. These include:Could changes in American diets — which now include fewer fruits and vegetables than in the past — affect folic acid levels, influencing autism rates? Could rising rates of overweight and obesity, which may affect how much folic acid women need, contribute to the problem?

“We’re certainly not going to be able to find any one environmental factor that will be the cause of autism,” Hirtz says. “I’m sure there will be multiple causes that interact with genetic susceptibilities.”

http://www.usatoday.com/story/news/nation/2013/02/12/folic-acid-autism-risk/1911043/

 

FOLIC ACID OVERDOSES IN PREGNANCY

Folic Acid Overdoses in Pregnancy

Folic acid, or vitamin B-9, is a water-soluble vitamin available in food and supplement form. Orange juice and tomato juice contain folic acid. Women need folic acid during pregnancy but should ideally be taking folic acid prior to pregnancy, the American Pregnancy Association explains. Folic acid helps to prevent neural tube defects that may happen within the first 28 days of pregnancy in women if they have not been taking the recommended dose of folic acid.

Function

Your body uses folic acid together with vitamins B-12 and C to break down, use and synthesize protein, “The New York Times Health Guide” explains. Folic acid helps your body create red blood cells and synthesize DNA. Your body uses folic acid to grow tissue and keep cells functioning within normal parameters. Folic acid also protects the DNA of your cells from changes that can cause cancer, Drugs.com notes. Folic acid can be combined with other medications to treat pernicious anemia.

Dose

Women over the age of 18 should take about 400 mcg of folic acid daily, MayoClinic.com notes. Pregnant women should take 600 mcg of folic acid per day. Breastfeeding women need about 500 mcg of folic acid daily. The tolerable daily upper intake level for women between 14 to 18 years of age is 800 mcg of folic acid. Women who are 19 years old and older can take up to 1,000 mcg of folic acid daily without suffering adverse effects. These tolerable upper intake doses apply to both breastfeeding and pregnant women in these age groups.

Overdose Effects

Exceeding 1,000 mcg of folic acid daily can hide the symptoms of vitamin B-12 deficiency, the American Pregnancy Association explains. Taking 15,000 mcg or more of folic acid daily can damage the central nervous system of developing babies. Other overdose symptoms include numbness or tingling of the mouth, pain in the tongue and exhaustion, Drugs.com notes. Folic acid overdose can also cause a general sense of confusion and difficulty concentrating. Nevertheless, excessively high levels of folic acid don’t usually cause harm because your body routinely purges excess amounts when you urinate, “The New York Times Health Guide” notes.

Food Sources

Leafy green vegetables such as spinach, broccoli and lettuce contain folic acid, MayoClinic.com explains. Cereals and bread also contain folic acid. Bananas, melons, citrus fruits, legumes and mushrooms have folic acid. You can also get folic acid from poultry, pork, shellfish and liver, “The New York Health Guide” notes.

http://www.livestrong.com/article/444202-folic-acid-overdoses-in-pregnancy/#ixzz2KnxYFMhl

ConnectMe Is Looking For You

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DOCTORS WITH THE CONNECTME STUDY ARE LOOKING FOR FAMILIES AFFECTED BY AUTISM

Please click this link to view the video:  http://www.wusa9.com/video/default.aspx?bctid=2129988973001

WASHINGTON, DC (WUSA) — Do you have a child with autism?  Do you know a family who is affected by autism, Asperger’s Disorder, or PDD-NOS?

Doctors at Children’s National Medical Center are looking for families affected by autism, in the testing of a novel drug that targets the symptoms at its core.  It is part of a nationwide program calledConnectMe.

Dr. Adelaide Robb, Principal Investigator for the ConnectMe research program at Children’s National Medical Center says, “It is looking at, for the first time, the core symptoms of autism.  That means difficulty with social relatedness.  How do you play with kids, how do you communicate with other kids?”

Dr. Robb says the medicine may also boost language skills, and cut down on repetitive behaviors and mannerisms that make it hard for children on the autism spectrum to communicate.

The program is for children between the ages of 6 to 12 and may last up to 52 weeks.  For families who are interested in the DC area you can call the research study line at Children’s (202) 476-6067.  For those outside of the metro area check the website for the nearest research site near you. www.clinicaltrials.gov.

http://www.wusa9.com/rss/article/240625/28/Doctors-With-The-ConnectMe-Study-Are-Looking-For-Families-Affected-By-Autism

You’ll Grow Out Of It – Maybe (But Keep Working At It Just In Case)

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First and foremost, as is stated in this article, this is an extremely small sample size for a study so everyone should factor that into the formation of their opinions.  Not to put too fine a point on it but just as there are a multitude of factors that may cause (or contribute to the cause of ) each individual’s autism diagnosis, there exists a multitude of possible outcomes as well.  This study is not groundbreaking when reasoned intuitively: even neurotypical persons change (intellectually, behaviorally) over the course of their lifetime.  It is no stretch to suppose that autistics are capable of those same changes, albeit at a different rate; adaptation is the hallmark of all humans, especially if assisted with appropriate therapies aimed at that improvement.  Does this mean autistics can ‘recover’ as (gulp) a certain Playboy model/mother/media whore claims happened to her son?  Can HFAs truly ‘grow out of it’? Sounds like semantics to me.  Or rather, it sounds like the natural order of things; like I’ve said before: Onward and Upward.  The possibilities are endless -Ed

CHILDREN ‘MAY GROW OUT OF AUTISM’

Some young children accurately diagnosed as autistic lose their symptoms and their diagnosis as they get older, say US researchers.

The findings of the National Institutes of Health study of 112 children appears to challenge the widely held belief that autism is a lifelong condition.

Four-year-old boy with autism

Is a label of autism lifelong?

While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism.

But experts urge caution.

Much more work is needed to find out what might explain the findings.

Dr Deborah Fein and her team at the University of Connecticut studied 34 children who had been diagnosed with autism in early childhood but went on to function as well as 34 other children in their classes at school.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes”

Dr Thomas Insel, Director of the National Institute of Mental Health

On tests – cognitive and observational, as well as reports from the children’s parents and school – they were indistinguishable from their classroom peers. They now showed no sign of problems with language, face recognition, communication or social interaction.

For comparison, the researchers also studied another 44 children of the same age, sex and non-verbal IQ level who had had a diagnosis of “high-functioning” autism – meaning they were deemed to be less severely affected by their condition.

It became clear that the children in the optimal outcome group – the ones who no longer had recognisable signs of autism – had had milder social deficits than the high-functioning autism group in early childhood, although they did have other autism symptoms, like repetitive behaviours and communication problems, that were as severe.

The researchers went back and checked the accuracy of the children’s original diagnosis, but found no reason to suspect that they had been inaccurate.

boy with autismSymptoms may be masked as they learn how to adapt to their condition

Label for life?

The researchers say there are a number of possible explanations for their findings.

It might be that some children genuinely outgrow their condition. Or perhaps some can compensate for autism-related difficulties.

Dr Thomas Insel, director of the National Institute of Mental Health, said: “Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes.

Autism:

  • People with autism usually have difficulties with social communication, social interaction and social imagination
  • It is a spectrum condition meaning while all people with autism share certain difficulties, the condition affects them differently
  • There are over 500,000 people with autism in the UK – that’s one in every 100
  • There is no cure but there are a range of interventions available

“Subsequent reports from this study should tell us more about the nature of autism and the role of therapy and other factors in the long term outcome for these children.”

It could be that autism cannot always be accurately defined or diagnosed, particularly since the condition affects people in different ways.

Indeed, experts have disagreed about what autism is.

The American Psychiatric Association is currently revising its diagnostic manual – the “bible” for doctors that lists every psychiatric disorder and their symptoms.

Its new version proposes changes he UK’s National Autistic Society says could affect the way diagnoses will be given to people on the autism spectrum.

“With intensive therapy and support, it’s possible for a small sub-group of high functioning individuals with autism to learn coping behaviours and strategies which would ‘mask’ their underlying condition”

Dr Judith Gould, National Autistic Society

Instead of using the current terms of autistic disorder, Asperger’s disorder, childhood disintegrative disorder and PDD-NOS (pervasive developmental disorder not otherwise specified), people will be given an umbrella diagnosis of “autism spectrum disorder”.

And their impairments will be reduced to two main areas – social communication/interaction and restricted, repetitive patterns of behaviour, interests, or activities.

Most diagnoses in the UK are based on the International Classification of Diseases (ICD), published by the World Health Organization, which is up for revision in 2015.

According to the National Autistic Society, more than one in every 100 people, more than 500,000 people in all, in the UK have autism.

About a fifth, an estimated 106,000, are school-aged children.

Dr Judith Gould, director of the National Autistic Society’s Lorna Wing Centre for Autism, said: “Autism is a lifelong disability affecting the way that people communicate and interact with others.

“This study is looking at a small sample of high functioning people with autism and we would urge people not to jump to conclusions about the nature and complexity of autism, as well its longevity.

“With intensive therapy and support, it’s possible for a small sub-group of high functioning individuals with autism to learn coping behaviours and strategies which would ‘mask’ their underlying condition and change their scoring in the diagnostic tests used to determine their condition in this research.

“This research acknowledges that a diagnosis of autism is not usually lost over time and it is important to recognise the support that people with autism need in order to live the lives of their choosing.”

She said getting a diagnosis could be a critical milestone for children with autism and their families, often helping parents to understand their children better and helping them to support their children in reaching their full potential.

http://www.bbc.co.uk/news/health-21029593

Denial + Insanity = Vaccine Injury and Million Dollar Award

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One definition of ‘insanty’ is doing the same thing over and over again, and expecting different results.  If this is indeed the case, the US Dept. of Health and Human Services, their lawyers and in fact the government, are all insane.  How else would you describe their endless cries of “vaccines don’t cause autism” but agree that vaccines (eventually) cause autism by causing an initial injury.  So… paying millions of dollars toward the care of two autistic children is… generosity? a gift? a coincidence? The government will pay for ABA and other approved autism-related therapies for these children, but will deny that vaccines are at the root of the problem.  Textbook Big Pharma legal mumbo-jumbo at work here.  Sheer insanity -Ed

VACCINE COURT AWARDS MILLIONS TO TWO CHILDREN WITH AUTISM by David Kirby, via The Huffington Post.

The federal Vaccine Injury Compensation Program, better known as “vaccine court,” has just awarded millions of dollars to two children with autism for “pain and suffering” and lifelong care of their injuries, which together could cost tens of millions of dollars.

The government did not admit that vaccines caused autism, at least in one of the children. Both cases were “unpublished,” meaning information is limited, and access to medical records and other exhibits is blocked. Much of the information presented here comes from documents found at the vaccine court website.

Some observers will say the vaccine-induced encephalopathy (brain disease) documented in both children is unrelated to their autism spectrum disorder (ASD). Others will say there is plenty of evidence to suggest otherwise.

What’s more, these cases fit the pattern of other petitions, (i.e., Poling and Banks) in which the court ruled (or the government conceded) that vaccines had caused encephalopathy, which in turn produced permanent injury, including symptoms of autism and ultimately an ASD diagnosis.

And most of these children now have taxpayer dollars earmarked for applied behavioral analysis (ABA), an effective therapy specifically designed to treat ASD.

Meanwhile, parents, grandparents, friends and neighbors of both children testified they were developmentally normal, if not advanced for their age when they developed seizures, spiking fevers and other adverse reactions to their vaccines. According to these eyewitnesses, the children never fully recovered, and instead began losing vocabulary, eye contact and interest in others around them, all classic symptoms of regressive autism.

In the first case, involving a 10-year-old boy from Northern California named Ryan Mojabi, the parents allege that “all the vaccinations” received from 2003-2005, and “more specifically, measles-mumps-rubella (MMR) vaccinations,” caused a “severe and debilitating injury to his brain, described as Autism Spectrum Disorder (‘ASD’).”

The parents, who did not want to be interviewed, specifically asserted that Ryan “suffered a Vaccine Table Injury, namely, an encephalopathy” as a result of his MMR vaccination on December 19, 2003.” (“Table injuries” are known, compensable adverse reactions to immunizations.)

Alternatively, they claim that “as a cumulative result of his receipt of each and every vaccination between March 25, 2003 and February 22, 2005, Ryan has suffered . . . neuroimmunologically mediated dysfunctions in the form of asthma and ASD.”

In vaccine court, the U.S. Department of Health and Human Services acts as the defendant and Justice Department attorneys act as counsel.

In 2009, Ryan’s case was transferred to vaccine court’s Autism Omnibus Proceedings, according to the docket. A year-and-a-half later, the government conceded that MMR vaccine had indeed caused Ryan’s encephalopathy.

HHS agreed that “Ryan suffered a Table injury under the Vaccine Act — namely, an encephalitis within five to fifteen days following receipt,” of MMR, records show. “This case is appropriate for compensation.”

Whether HHS agreed with Ryan’s parents that his vaccine-induced brain disease led to ASD is unknown. The concession document is under seal.

In December 2003, when Ryan was nearly two, he received his first MMR and hepatitis B vaccines before his family left for an extended trip overseas. That day, his mother testified, Ryan began shaking with uncontrollable tremors and “was really uncomfortable, he didn’t feel well at all.”

The nurse at Ryan’s pediatrician said the symptoms were “pretty normal after the vaccination,” and advised Tylenol. The next day, Ryan began crying, “but it’s not a normal crying,” his mother testified. “He didn’t go to sleep, he was without energy.”

The family considered postponing their holiday, but that wasn’t feasible. The doctor’s office said it was fine to travel. Prior to leaving, Ryan’s mother said, the boy had difficulty breathing and “was without energy and sleepy.” He could no longer hold his head up, something “he could do prior to the vaccinations.” At the airport, Ryan began “screaming,” she recalled. “He was just opening and closing his eyes so hard, he was pulling my hair.”

After his shots, she added, Ryan “stopped saying those words that he had, even mommy and daddy, that he had repeated a hundred times before.”

In early January, while still abroad, Ryan was rushed to the hospital with vomiting, high fever and red spots covering his body “from head to toe in a measles-like rash,” the attending physician said. Ryan was diagnosed with “febrile convulsion, probably related to MMR.”

The next day, another doctor diagnosed him with “high fever, skin rash, tremors, and lethargy,” which were “most likely due to an adverse reaction to multiple vaccines he received earlier.”

Two days later, Ryan returned to the hospital with a persistent fever of 104 or more.

Ryan’s parents testified that, upon returning home, they expressed worry to their pediatrician about behavioral problems, non-responsiveness and language loss, which later produced an ASD diagnosis.

At trial, however, the government argued powerfully that written medical records, and the recollections of Ryan’s doctor, were inconsistent with his parents’ testimony. If Ryan had truly suffered an MMR encephalopathy, for example, his family would never have taken him overseas. And his parents’ complaints of ASD symptoms were raised a full year after returning from abroad, they alleged. It looked like the family had a weak case.

But then something changed.

In October, 2010, Ryan’s attorney filed four new exhibits (under seal) and proposed amending the court’s “findings of fact.” In January and May of 2011, several more exhibits were filed, along with a motion to further supplement the findings of fact.

A month later HHS conceded the case, which moved into the damages phase.

Award details were announced a few days ago: A lump sum of $969,474.91, to cover “lost future earnings ($648,132.74), pain and suffering ($202,040.17), and life care expenses for Year One ($119,302.00),” plus $20,000 for past expenses.

Another undisclosed sum, several millions more, will be invested in annuities to cover yearly costs for life, which could total $10 million or more, not accounting for inflation. Nearly $80,000 was earmarked for ABA in the first two years.

The second case involves a girl named Emily, whose mother, Jillian Moller, filed back in 2003 and has been fighting in vaccine court since. The docket, crammed with 188 items, documents Moller’s extended but victorious struggle to win compensation for Emily, who has seizure disorder and PDD-NOS, a form of ASD.

Moller alleged that Emily was severely injured by a reaction to the DTaP vaccine at 15 months (when MMR, HiB and Prevnar were also given). “She had a vaccine reaction and she just spiraled out of control,” Moller said in an interview.

Emily’s fever spiked to 105.7 and she began screaming. She stared blankly and developed seizures. Before long she began “shaking episodes” at night and “repetitive behaviors, including arm flapping and spinning,” court documents show. Like Ryan, she developed a measles-type rash.

Things went from bad to worse. Emily’s medical record is filled with damage and suffering. One neurologist, for example, noted that Emily “had staring spells and an abnormal EEG.” Another diagnosed “encephalopathy characterized by speech delay and probable global developmental delay that occurred in the setting of temporal association with immunizations as an acute encephalopathy.”

Moller filed for an encephalopathy Table injury in 2003, unaware her daughter would be diagnosed with ASD.

Two hearings were held in 2005. “I was badgered and harassed for four hours on the stand,” she said. “They said Emily couldn’t have been that sick, or else I would’ve taken her to the ER. But I took her to my doctor and he said not to bring her to the hospital!”

Government lawyers insisted that Emily had suffered neither a vaccine injury nor encephalopathy. But every alternative cause they suggested “made no sense, because she showed no signs of those things before that vaccination,” Moller said.

The case dragged on for years, with motions and counter-motions, status reports and expert medical reports. In 2007, Moller filed for summary judgment. That also took years, as more medical records were submitted to bolster Emily’s case.

After the ASD diagnosis, the judge reportedly became convinced that Emily would prevail. “My attorney said she was angry, she felt forced into a corner with no choice but to find for us,” Moller said. “She said, ‘Emily has autism, and I don’t want to give other families who filed autism claims any hope.'”

The government agreed to settle. Last spring the case went into mediation and, on December 3 HHS made its proffer, which was entered into the record on the 28th. Emily was awarded a lump sum of $1,030,314.22 “for lost future earnings ($739,989.57), pain and suffering ($170,499.77) and life care expenses for Year One ($119,874.88) plus $190,165.40 for past expenses.” Some of that money will go to ABA therapy.

Based on the first year payout, another estimated $9 million will buy annuities for annual expenses through life, which after inflation has the potential to pay over $50 million dollars.

HHS did not admit that vaccination caused encephalopathy or autism, but merely decided not to dedicate more resources to defending the case.

“I don’t understand why they fought so hard,” Moller said. “We had the evidence: the EEG, the MRI, everything was consistent with encephalopathy, post-vaccination. How can government attorneys claim what our doctors said happened, didn’t happen?”

Perhaps the feds were loath to concede yet another vaccine case involving autism. Four cases in the Autism Omnibus Proceedings were recently compensated. Three of those cases are marked with asterisks, indicating the government did not conclude that autism can be caused by vaccines. But the fourth autism case that was paid out in 2013 (Ryan’s case? We don’t know) has no such caveat.

As for Emily, she is “not too good,” Moller said. “Her emotional state is fragile, at best. She has seizure problems and autoimmune issues… And it’s a constant fight when you have a vaccine-injured child. It’s not just the disability, it’s the ignorance. The hatred from the medical community towards families like ours is intense.”

Meanwhile, even as HHS says it “has never concluded in any case that autism was caused by vaccination,” it is still underwriting autism treatments such as ABA for children in its vaccine-injury program.

http://www.huffingtonpost.com/david-kirby/post2468343_b_2468343.html

Have A Heart

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A heart is needed at the Hospital of the University of Pennsylvania.  Yes, donor hearts are always needed and welcomed, however the heart needed is for those on the transplant board who literally make life and death decisions.  The heart needed is for those board members to provide compassion and courage.  The heart is a vital reminder of the relative frailty of the human body; without it, life ends.  A patient may be comatose for decades, but lives as long as the heart survives. 
One out of every 88 children is affected by autism, and this rate is certain to rise in the years to come, due mainly to better screening at earlier ages.  It is safe to hypothesize that the rate was always this high, even in decades past simply because many were misdiagnosed or not diagnosed at all, but are still out in every community.  For those who did receive a diagnosis like Paul Corby and his family, who by all accounts have done an admirable job in raising and transitioning him to adulthood, shouldn’t they have an expectation to receive the same advancements in medical care that neurotypical adults get? 
Many hospitals have their own exclusionary criteria for heart transplant recipients, while many like the University of Maryland Medical Center (UMMC) do not and develop their own, based on guideline set by the International Society For Heart and Lung Transplantation.  It seems, based on a brief overview that the Hospital of the University of Pennsylvania has conveniently lumped Autism Spectrum Disorders with Mental Retardation and Dementia in order to exclude Paul Corby from obtaining a heart transplant. 
Knowing that transplant decisions ultimately hinge upon deciding the question of who is most likely to benefit, why wouldn’t Paul Corby be a fitting candidate? He meets all the inclusion criteria, and has the social network of family and friends in place to adhere to the four areas of psychosocial concern: compliance, comprehension, quality of life and social evaluation. 
Back to my point about the autism rate: it is inevitable that as persons with Autism grow older, they will develop the same medical problems that plague ‘the rest of us’, and will need the same medicines, technologies, and compassion that we all do.  Putting off life-saving decisions that are thinly veiled as ‘sorta, kinda, maybe’ fitting an exclusion criteria will only serve to further isolate Autistics from society, and will not make that inevitable wave from going away.
 
 
Have a heart, University of Pennsylvania; do the right thing and save a life.  You owe it to society to get this right.-Ed
 
 
Paul Corby, 23, (front, left) with family, was rejected for a heart transplant. His mother, Karen Corby (front right), is protesting.
Paul Corby, 23, (front, left) with family, was rejected for a heart transplant. His mother, Karen Corby (front right), is protesting.

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

Doctors at the Hospital of the University of Pennsylvania have said they are, according to Paul’s mother, Karen. She disagrees and is using an online petition and the support of a network of autism advocates to make her case. Karen Corby says she was “stunned” by Penn’s decision, then inspired by another family’s successful fight with Children’s Hospital of Philadelphia over a similar decision.

“I guess they thought we would accept it and just wait for the inevitable,” said Corby, of Pottsville. She said she has not been told how long her son, who has a heart condition called left ventricular noncompaction, might live without a transplant.

Paul Corby initially took the decision well, but has since grown so depressed that his mother worries about how he’d react to another rejection.

“At first he was OK with it because he thought, ‘At least I don’t have to go through that surgery,’ ” his mother said, “and then he thought, ‘Why not? Why don’t they like me?’ ”

Paul Corby’s situation is a window into the complex decisions that patients and doctors face when vital organs begin to fail. Organ transplantation is one of the few areas of modern medicine with overt and unavoidable rationing. There simply are not enough donated organs to go around, so doctors must make life-and-death choices. Nationally, 331 people died while waiting for heart transplants last year.

Karen Corby released a letter she received from Penn cardiologist Susan Brozena in June 2011. In it, Brozena said that she recommended against Paul Corby’s getting a transplant “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

Corby said her son – who is diagnosed with Pervasive Developmental Disorder Not Otherwise Specified – is high functioning and spends his days playing video games and writing the sequel to his pre-teen, self-published novel, Isaac the Runner. He carried his ever-present Princess Peach doll with him to his transplant evaluation. He takes medicine for an unspecified mood disorder, his mother said. He has shouted loudly enough that police have been called “three or four times” to the family’s home.

Citing privacy rules, the Penn health system said it could not comment on Paul Corby’s case. It released a written statement that said the transplant program reviews “all aspects” of a patient’s condition, including his health status and post-transplant prognosis, and other health problems that could affect transplant success along with the interaction of drugs he takes and those he’ll need after the transplant.

“Our criteria for listing an individual for transplant are regularly reviewed in comparison with national standards, but we always encourage patients to seek another opinion.”

After Karen Corby said she was willing to give permission for Penn to discuss her son’s case, health system spokeswoman Susan Phillips said that “the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment.”

Phillips said Penn’s transplant team has performed at least one other heart transplant in an individual with autism.

Thirty-eight percent of patients evaluated for heart transplants during the last two years there were told no, mostly because of other medical conditions that would affect their survival or quality of life after a transplant, Phillips said.

Karen Corby decided to start a petition on the website change.org after reading in January about 3-year-old Amelia Rivera, who was denied a kidney transplant at Children’s because she was “mentally retarded.” Her family’s petition led to an outpouring of support. The hospital apologized and Rivera’s family now says she has been cleared for transplant.

Corby’s petition drew only about 4,000 signatures until Joslyn Gray, a freelance writer from Drexel Hill who has two children with Asperger’s disorder, also part of the autism spectrum, wrote about Paul on the Babble.com website last week. The count had climbed to about 10,700 Monday.

Gray sees an issue that can only get bigger as more children with autism get older.

While autism was just one of the reasons listed for denying Paul Corby a transplant, Gray said she was “extremely disturbed that autism in and of itself was listed as an exclusionary factor.”

With help from other parents, Karen Corby has now contacted the Mayo Clinic and two hospitals in Pittsburgh about putting Paul on their lists.

Transplant patients often face a difficult recovery and are on a complex drug regimen for the rest of their lives. The experience of being rescued from death by someone else’s death is challenging emotionally even for people who go into the experience with superior social skills.

Robert Weinrieb, a psychiatrist who specializes in working with transplant patients at the Hospital of the University of Pennsylvania, said patients were rarely turned down for psychosocial reasons. People who are actively addicted to drugs or alcohol are excluded. In cases of serious psychiatric or cognitive problems, doctors want to know that patients have enough support from family members to manage their medications. Doctors don’t want to have to sedate patients to perform minor procedures. To make the best use of organs, patients must be willing participants in rehabilitation.

Weinrieb, who has not met Paul Corby, said the social skills deficiencies common in autism can be a problem if patients need a long hospitalization.

Steroids, which are given in high doses after transplants, greatly magnify emotions. Weinrieb likened it to drinking 20 to 30 cups of coffee. Someone who already has trouble with anger or impulsiveness is “virtually guaranteed” to get worse on the drug, he said.

Daniel L. Coury, professor of pediatrics and psychiatry at Ohio State University and medical director for the Autism Speaks Autism Treatment Network, said it’s hard to predict who will have a hard time with steroids.

People with autism have trouble with verbal and nonverbal communication and with transitions. They often have limited interests, Coury said. Those characteristics can make them challenging patients, but there are ways to help them through difficult medical procedures. He said he had not heard anything about Corby that would disqualify him from a transplant. “To deny him outright doesn’t sound quite appropriate to me,” he said.

Karen Corby said her son is already on 19 medications, most for his heart condition. Although he always has someone with him, he takes the medicines by himself. He struggles with anxiety and has night terrors. He’s a loner. He has not been diagnosed with specific mood disorder, she said, but takes a mood stabilizer. He’s been more depressed and upset since Penn said no.

His heart problems make him breathless when he climbs stairs. He has to sleep practically sitting up. His father died of a stroke at 27 – Corby doesn’t know if he had the same heart problem – and she fears for Paul.

He spends a lot of time working on his second book. The first was about a group of kids on a quest. It’s not great literature, but it reveals an active mind. In the third chapter, the hero Isaac tells his mother he’s embarking on a quest. “Do you mind if I go out for adventure?” he asks. “Rick’s candy has been stolen from an evil ogre robot Chris Jerky.”

During a visit last week, Paul answered questions with short, simple sentences, mostly averting his eyes. He is a pudgy young man with freckles and an auburn beard. There was no hint of emotion in his face even when he described strong feelings.

He said he worries about going out sometimes. “I feel like I might get nervous, and I might act out in public.” Asked how he acts out, he said, “I push people. I break things.” His mother said medication helps with that.

Autism, he said, has made him creative. He still feels “desperate” for a transplant. He’s tired of being tired all the time and he’s not scared of the surgery or a long stay in the hospital.

“I don’t care how long I’m in there,” Paul Corby said. “I just want my life to be saved. That’s all.”

http://www.philly.com/philly/health/20120814_Medical_debate__Should_autism_block_a_man_from_betting_a_heart_transplant_.html?viewAll=y#ixzz23WmdH4ia