A frustrated mother called the Brain Injury Association of Utah y, looking for help.

Her two children, who were in a car accident last year, are struggling in school, having trouble with memory and acting out. But their doctor dismissed it as normal behavior.

"The teachers are seeing it and the families are seeing it. But the doctor just really doesn't see it," said Ron Roskos, the association's executive director.

He said the plea for help is all too typical: Children aren't initially properly diagnosed as having a brain injury and then struggle to find appropriate care once they are.

But now, Utah doctors are joining a new national effort to develop standardized, evidence-based care for childhood brain injuries, which mainly result from car accidents, auto-pedestrian accidents and falls.

Today, the Sarah Jane Brain Foundation will name the University of Utah's pediatrics department as a center selected to help in its effort to improve children's brain care -- from paramedics to hospitals to rehabilitation, and in the transition to adulthood.

The New York foundation -- named for a 4-year-old who was shaken by her babysitter when she was 5 days old, causing severe brain injury -- is naming lead centers in each state, plus Washington, D.C., and Puerto Rico.

Although pediatric acquired brain injury is the leading cause of death and disability for children and young adults, children's care is a "crap shoot," said Patrick Donohue, Sarah Jane's father and founder of the foundation.

He said the nation's top 20 pediatric neurosurgery departments would treat a similar patient differently, with no evidence to determine which method is better.

"Almost all of the care for all of these kids and young adults is based off of anecdotal information" or adult care, he said. "Kids are not little adults."

The U.'s pediatrics department, in partnership with Primary Children's Medical Center, will create a statewide master plan to coordinate and improve children's care. Their job will include preventing injuries, providing support to families and schools, and contributing to research.

Primary Children's is Utah's sole provider of care for children with moderate to severe brain injuries. But Kim Statler, associate director of its intensive care unit, acknowledged, "There's lots we don't know about pediatric brain injury."

Statler, who is coordinating Utah's efforts in the national plan, added: "We do the best that we know, but there's so much that we don't know."

For example, doctors used to think younger children had a greater capacity to recover after a head injury. But they don't: Older children are more likely to regain lost skills after an injury than children who never learned the skills in the first place, she said.

The national plan still needs funding -- an estimated $125 million annually from Congress. With funding, Statler said, families would have a case worker to help them navigate rehabilitation and reintegration into schools.

West Jordan mother Brooke Gonzalez said such help is definitely needed. Her son Nathan Ruiz, now 17, was hit by a car moving 45 mph when he was 12 and lost a portion of his brain and skull.

She is happy with the care he received at Primary Children's but felt like she had to "fight my way through" everything that came after: applying for financial assistance for physical therapy, reintroducing him to school, and now, helping him transition to adult services even though he's mentally more a child than an adult.

"It's like the small little details of their everyday quality of life people kind of miss, and don't realize how important it is to help them with those things," she said, recalling how she had to work to get teachers to allow him to wear sunglasses because lights were too distracting. "You have to find your own way."

Donohue said care for his daughter, who cannot walk, talk, crawl or sit up on her own, also was a lot of "trial and error." For parents, "there's very little common shared experience," he said. "We're going to change that."

hmay@sltrib.com