Kids with RLS often misdiagnosed

Seventeen-year-old Ali Dzienkowski loves to play the piano. It's hard to believe that just six years ago, deep pain in her legs made it tough to even sit still.

"It's kind of like sitting on your foot for a while and it falls asleep," said Ali.

Ali was diagnosed with restless legs syndrome, or RLS, a neurological disorder characterized by an uncontrollable urge to move.

"It occurs when the child wants to sit quietly, sit and do homework or go to sleep," said Pediatric Doctor Daniel Picchietti.

Dr. Picchietti is one of the nation's foremost RLS researchers. He says many people don't realize RLS can strike kids. Recent research shows 2 percent of children in the U.S. have the condition, making it more common than epilepsy or diabetes.

Still, RLS can be tough to diagnose. Ali's mom Karla remembers her frustration.

"We saw numerous doctors. It was one of the hardest things I ever went through," said Karla Dzienkowski.

That's because many doctors are not familiar with the condition in children. And a key symptom -- intense leg pain -- is often dismissed as growing pains.

"In addition, most children with restless legs now have jerking in sleep," said Dr. Picchietti. "As a result of this impact on sleep, the children become irritable and have difficulty in school." Side effects that are often mistaken for attention-deficit hyperactivity disorder, or ADHD.

While the exact cause of RLS is unknown, Dr. Picchietti believes genetics does play a role.

"There has now been a gene isolated that accounts for about 50 percent of RLS cases," said Dr. Picchietti. "In children, it very often runs in the family."

Ali and Karla now speak on behalf of the RLS Foundation. They want other families to know they aren't alone.

"I'd like them to know that it's real and that there's help out there," said Ali.

"There is hope, there is treatment," said Karla. "Let's find a cure together."

For more information about the symptoms and diagnosis of restless syndrome in adults or children:


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