A ground-breaking treatment available at Kansas City's Children's Mercy Hospital and Clinics is giving some young patients relief from the symptoms of restless legs syndrome; allowing their bodies to finally receive the restorative sleep they need.
Once a month, 17-year-old Jessica Seidel makes the three-hour round-trip from her Topeka, KS, home to CMH on Kansas City's Hospital Hill for the intravenous iron infusion that helps keep her RLS symptoms at bay. The treatment itself takes another four hours, but Seidel said it's worth it.
Without the infusions, "I'm moving just as much in my sleep as when I'm awake, if not more," she said.
Because RLS strikes when a patient is unconscious, Seidel didn't know it was happening until the night her father, David Seidel, checked on her and couldn't believe his eyes.
"Literally just watch her go in circles in the bed," he said, "legs and arms in the air, crazy."
Dr. Bob Beckerman is a sleep medicine doctor at CMH. He treats about 700 children with RLS and those same symptoms.
"It's like a jerking movement of the legs, the arms, the whole body sometimes," Beckerman said. "It looks like a seizure, convulsions sometimes."
The patients of his who are old enough to speak also talk about a tingling sensation in their limbs before falling asleep. One said it felt like sand moving up and down their legs causing a gritty and irritating burning. Others said it seems like there are insects on them.
"It feels like there's bugs crawling on me," Jessica Seidel said.
With sleep comes the seizure-like convulsions that are anything but gentle.
"(It) sounded like someone kicking in the front door," David Seidel said. "She (Jessica) put two small holes in the wall."
"I fell out of bed quite a bit," she added, "and one time even broke my arm."
RLS has been tied to very low iron levels. While most of Beckerman's pediatric patients find relief from taking an iron supplement, Jessica Seidel's body doesn't allow her to absorb iron orally.
That's the reason for the monthly IV infusions. To avoid making her sick, the iron has to be delivered at a slow and deliberate pace into her blood stream. The method is labor-intensive and costly.
Until this treatment, Jessica Seidel found it impossible to stay alert for more than a few hours, let alone attend a full day of school.
"I can definitely see why they say sleep deprivation is one of worst forms of torture there is," she said.
Intravenous iron infusions have long been used to treat anemia. CMH is one of just a few hospitals in the country using the method for children with RLS.
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