Source:  SFGATE.com (Read Full Article)

By Beth Winegarner

When Beth Wankel’s son, Bowie, was a baby, he seemed pretty typical. But his “terrible twos” were more than terrible: In preschool, he would hit and push his classmates to a degree that worried his parents and teachers.

As Bowie got a little older, he was able tell his mom why he was so combative. “He would say things like, ‘I thought they were going to step on me or push me,’” Wankel said. “He was overly uncomfortable going into smaller spaces; it was just too much for him.” Among other things, he refused to enter the school bathroom if another student was inside.

When Bowie was 3, he was formally evaluated by his preschool teachers. They said he appeared to be having trouble processing sensory input, especially when it came to figuring out where his body is in relation to other people and objects. He’s also very sensitive to touch and to the textures of certain foods, said Wankel, who lives with her family in San Francisco.

Bowie has a form of what’s known as sensory processing disorder. As the name suggests, children and adults with the disorder have trouble filtering sights, smells, sounds and more from the world around them. While so-called neurotypicals can usually ignore background noise, clothing tags or cluttered visual environments, people with SPD notice all of those and more — and quickly become overwhelmed by the effort. Rachel Schneider, a mental-health expert and a blogger for adults with SPD, describes it as a “neurological traffic jam” or “a soundboard, except the sound technician is terrible at his job.”

Brains different

Sensory processing disorder is often seen in children with autism or attention deficit hyperactivity disorder, but new research suggests it also exists independently from those conditions, affecting between 5 and 16 percent of school-age kids. Last year, a team led by Elysa Marco at UCSF became the first to uncover evidence that the brains of boys with SPD are measurably different from neurotypical boys of the same age and IQ.

Now, those researchers want to dig deeper into the world of children with the disorder. While the first study compared brain images from boys with SPD to boys who don’t have it, UCSF is now performing a similar study with scans from girls’ brains. They’re also looking deeper at the boys, watching how their neurology responds as it encounters sensory input, said Pratik Mukherjee, a professor of radiology and biomedical imaging and bioengineering at UCSF and one of the authors of last year’s study.

UCSF is also exploring the genetics behind SPD to see whether children with the condition have any differences in their DNA — and whether those differences are the same ones they’ve seen in kids with autism. They’re beginning to study whether children with sensory processing disorder have measurable trouble paying attention in their environments, and whether a customized program, akin to a video game, can help them train their brains to focus better, according to UCSF researchers.

“We need larger studies to reproduce our findings, and to extend things in other directions,” Mukherjee said.

However, such studies require funding, and because SPD is such a new diagnosis, that funding is tough to come by. SPD isn’t commonly accepted among pediatricians, and it isn’t listed in the Diagnostic and Statistical Manual of Mental Disorders. That makes major donors, such as the National Institutes of Health, reluctant to chip in, especially when it’s struggling against budget cutbacks and the possibility of another government sequestration. On top of that, UCSF’s other major source of research funding — revenue from the hospital and outpatient visits — has declined as insurance reimbursements have fallen, Mukherjee said.

Crowdfunding for research

That has driven teams like the SPD group at UCSF to look for other sources of cash. Last year’s brain-imaging study was backed by a $30,000 grant from the Wallace Foundation, Mukherjee said. Now, UCSF is crowdfunding to raise money for the next phase of research into children with sensory differences. Between now and Dec. 14, the team’s goal is to gather at least $50,000 for the next research stages, he said.

“This is not the typical research model where you’re investing money with any hope of an immediate return,” Mukherjee said, comparing it with the development of a new medication, where the sale of a successful product will more than cover the costs. “With crowdfunding, people are donating without necessarily the idea of a return on that investment.”

But the benefits of UCSF’s work with children who have autism or SPD are profound, say parents whose kids have worked with Marco in her clinical practice.

Gia Vennes fought to get her 13-year-old daughter, Jordan, in to see Marco after hearing that she was “the rock star” physician when it comes to children with sensory issues. Vennes was frustrated and desperate after years of watching Jordan struggle with aggression similar to Bowie’s — and failing to improve after a diagnosis of ADHD and a prescription for antipsychotic medication.

“She had problems with impulse control. She bit kids, she hit kids. She couldn’t control her body,” said Vennes, who moved her family from Orinda to Healdsburg four years ago to provide Jordan with a calmer environment. “As she got older, her behavior wasn’t getting better, it was getting worse.”

Marco discovered that Jordan was lashing out because she was overstimulated by her environment. She prescribed a beta blocker, propranolol, along with motion-related therapies that help calm Jordan’s nervous system.

The combination has helped the teen get a handle on her responses, maintain control and develop positive patterns, Vennes said.

“Dr. Marco’s changed our life, period,” she said.

Vennes supports UCSF’s plan to conduct more research, including brain-imaging studies. She also said she’d like to see them study the brain-training “video game” in greater depth to determine how it affects sensory-sensitive children’s ability to moderate sensory input.

Occupational therapy helps

If UCSF can raise enough money this month, some of the funds will go toward studying how different physical therapies can help bring calm and order to children with the disorder, Mukherjee said. Many parents of kids with sensory processing issues, including Vennes and Julia Martin, said they’ve seen big improvements in their children after periods of occupational therapy.

Martin’s 12-year-old son, Patrick, is predominantly sensitive to noisy environments. For him, auditory therapies, including sessions spent listening intently to metronomes or to music that’s clinically designed to reduce sensitivity to sound, have helped him negotiate daily life.

Patrick was one of the 16 boys with SPD who volunteered to participate in the initial UCSF brain-scan study. Martin said the medical center’s research has been a relief. After years of doctors treating the disorder as an unorthodox or even made-up condition, being able to see physical differences in Patrick’s brain was like vindication.

“We can see a picture of it in his brain,” she said. “That’s been so motivating. We’re so lucky they’re doing this research.”

Beth Winegarner is a freelance writer.

SPD research crowdfunding

Researchers are turning to crowdfunding to pay for the next level of research into sensory processing disorder. To learn more: https://crowdfund.ucsf.edu/spd