Disability Scoop: Doctors Often Skip Protocols For Antipsychotics, Study Finds

As an increasing number of kids are prescribed powerful antipsychotics, a new study finds that many doctors are deviating from established medical guidelines when they dole out the scripts.

In nearly half of cases, physicians failed to conduct lab tests to measure cholesterol and blood-glucose levels in patients before and after they began taking antipsychotics, according to findings published this month in the journal Pediatrics.

Such lab tests are recommended to mitigate the elevated risk of conditions like high cholesterol and diabetes associated with such medications, researchers said.

Nonetheless, the study found that physicians were generally prescribing antipsychotics to the right patients. In 92 percent of cases, doctors were using the drugs to address situations where they were warranted, most commonly as a secondary treatment for aggression or mood instability.

For the study, researchers sent surveys to every physician in Vermont who prescribed antipsychotics to children covered by Medicaid between July and October 2012. Ultimately, 147 of the doctors — who accounted for prescriptions for 647 patients — responded to questions about their prescribing habits.

The findings suggest that more needs to be done to ensure that doctors follow established protocols when they prescribe antipsychotics, researchers said. Specifically, better training, greater sharing of records and use of electronic medical records to remind providers about blood work could help, they said.

“I’m not anti-antipsychotics; I just want to make sure they’re used very carefully,” said David Rettew of the University of Vermont who led the study. “These findings could help us design a game plan for measures to improve best-practice prescribing.”

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NYT: More Differences Than Similarities Are Found in Autistic Siblings

Most siblings with a diagnosis of autism do not share the same genetic risk factors for the disorder and are as distinct in their behaviors as any brothers and sisters, scientists reported on Monday in a study that came as a surprise to many doctors, if not to parents.

Scientists analyzed genetic material from 85 families, using a technology called whole-genome sequencing. Unlike other approaches, which illuminate a sample of a person’s genetic material, the whole-genome technique maps out the entire voluminous recipe, every biological typo, every misplaced comma or transposed letter. Each of the families had two children with a diagnosis of autism.

The researchers focused their analysis on about 100 genetic glitches linked to the development of autism. They found that about 30 percent of the 85 sibling pairs in the study shared the same mutation, and about 70 percent did not. The sibling pairs who shared a genetic glitch were more similar to each other, in their habits and social skills, than those pairs whose genetic risks were different, the study found.

The finding drives home the exasperating diversity of autism, even in the most closely related individuals. And it suggests that scientists will need to analyze tens of thousands of people, perhaps more, to tell any meaningful story about its biological basis.

Experts said the report, in the journal Nature Medicine, would most likely encourage changes in clinical practice. Some hospitals analyze the genetic profile of the eldest affected sibling to try to understand an infant, or to advise parents of the odds of having another child with the same disorder. That approach is not informative in most cases, the study authors said.

“This is very important work for people like me,” said Valerie South, an emergency nurse in Oakville, Ontario, outside Toronto. Her sons Cameron, 20, and Thomas, 14, have severe autism. In a family of four or more, the odds of having two children with autism is about one in 10,000. Continue reading NYT: More Differences Than Similarities Are Found in Autistic Siblings

LA Times: Autism genomes add to disorder’s mystery

Less than a third of siblings with autism shared the same DNA mutations in genes associated with the disorder, according to a new study that is the largest whole-genome sequencing for autism to date.

Canadian researchers sequenced whole genomes from 170 siblings with autism spectrum disorder and both their parents. They found that these sibling pairs shared the same autism-relevant gene variations only about 31% of the time, according to the study published online Monday in the journal Nature Medicine.

More than a third of the mutations believed to be relevant to autism arose in a seemingly random way, the study also found.

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Disability Scoop: Lawmakers Look To Improve Care For Kids With Complex Needs

Finding care for children with medically complex or rare conditions can force parents to tap into networks of highly specialized physicians and hospitals scattered around the country.

This is especially challenging when the children are covered by Medicaid, because each state-run program has a different benefit package, payment structure and provider network. Conflicting regulations and paperwork requirements can delay treatment and lead to unnecessary hospitalizations. Medicaid’s state-based rules also have thwarted efforts to develop a national clinical database researchers could use to find ways to improve the care of children with rare conditions.

A new bill in Congress would amend the 50-year-old Medicaid law to make it easier for health care providers in different states to coordinate the complicated care of these kids.

The proposal — the Advancing Care for Exceptional Kids Act — also calls for the creation of a national database of Medicaid claims data that researchers could use to study complicated conditions that affect one in 25 children nationwide. Continue reading Disability Scoop: Lawmakers Look To Improve Care For Kids With Complex Needs

The Hill: For better brain health, reason to celebrate

As we kick off the new year, those of us working toward better brain health have something to celebrate. Tucked into the spending measure passed by Congress and signed by the president on Dec. 16 was the gift of increased funding for neuroscience priorities, extending good will toward millions of Americans affected by Alzheimer’s disease, autism spectrum disorder, traumatic brain injury and many other conditions signified by cognitive impairment.

The bill contains a $21 million increase for brain-related projects at the National Science Foundation, including the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Described by the White House as having “the potential to do for neuroscience what the Human Genome Project did for genomics,” the BRAIN Initiative is a multi-agency effort to develop new technologies to map the brain’s structure and processes used in thinking and memory. The initiative also taps the expertise of high-tech firms, academic institutions and scientists — all united in pursuing the goal of better preventing, diagnosing and treating brain impairments. Continue reading The Hill: For better brain health, reason to celebrate

CNN: How deep brain stimulation could unlock secrets of Tourette’s

“Sitting in class, second grade, teachers would put me outside the hallway because I had been ticking so loud I was a ‘distraction,'” recalled 25-year-old Amber Comfort. “Teachers would walk by me back and forth and say ‘you’d better stop that before you get into my class next year.’ Things that were just completely obscene, that you would never expect the world to be, and I had to deal with on a daily basis.”

From the age of five, Comfort has suffered from Tourette’s syndrome, a neurological disorder that causes her to make involuntary movements and loud noises, known as tics.

For almost 20 years, the condition has shaped every moment of her life. “I don’t remember any parts of ever being tic free,” she said. “There’s not a day that’s gone by that I don’t remember moving or making noise when I couldn’t help it.”

But she has not let Tourette’s dictate how she lives. Comfort graduated from high school with honors and was even accepted to college on full scholarship. But her uncontrollable outbursts have made it hard to continue her education or even hold down a steady job.

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The Amazing Story Of The Blind Engineer (Who Is Also A Triathlete)

Patricia Walsh is one of those people who seems to excel at everything she does. After several years in a successful and coveted stint as an engineer at Microsoft, she left to join Austin, Texas-based mobile payment app Mozido—a job she loves—in 2013. A longtime marathon runner, Walsh completed her first triathalon in 2010 and began breaking records a year later. She launched a motivational speaking business and wrote a book.

She’s also blind.

Walsh lost most of her vision when she was 14 as the result of a pediatric brain tumor and subsequent complications from the surgery to remove it. Today, her field of vision is a six-degree “tunnel of light, dark and motion.” She went from being a student on track to graduate from high school early finding it hard to read children’s books in Braille.

The trauma of losing her vision took a toll on Walsh. Depressed, angry and frustrated, she was living with her father in northern Ontario, Canada. Then her father started having health issues, including two strokes and two heart attacks in less than a year. To cope with the trauma of losing her eyesight and to get herself healthier, she started running.

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The Spirit Club

Their mission  is to create socially inclusive and integrated opportunities for those who may need extra guidance and encouragement to learn to maintain and appreciate a healthy & active lifestyle.

From the Spirit Club website:  “The S.P.I.R.I.T. Club (acronym for Social, Physical, Interactive, Respectful, Inclusive & Teamwork) is an 8-week health and fitness program for teens and adults with developmental disabilities. Since April 2013, our weekly class of 6 people has grown to 6 weekly classes of over 60 people!

Physically, the S.P.I.R.I.T. Club focuses on improving its member’s balance, stability, flexibility, agility, strength, cardiovascular endurance and nutritional habits. Mentally and emotionally, the program is designed to encourage high levels of social interaction and integration to ensure that every member feels comfortable and excited about the healthy and active choices that they are making. Each class meets once per week and lasts for one hour.”

The Maryland Assistive Technology Network

The Maryland Assistive Technology Network (MATN) is a premier professional learning network which connects educators, families, and educational leaders engaged in improving learning and teaching through the effective use of assistive and universally accessible technologies in education. MATN is a service of the Johns Hopkins University, Center for Technology in Education (JHU CTE). MATN membership is free and open to all.

By becoming a member of their online community, you exchange ideas, questions and recommendations with educators, families, researchers, leaders and policy makers around assistive technology tools, services, and processes. This vibrant network strives to help support individuals’ learning and independence.

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