Daughter’s narcolepsy diagnosis led mom to become a parent advocate
Dealing with 2 sleep disorders taught 1 mother to always 'keep pushing'
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Restless leg syndrome is marked by limbs that don't keep still, even in the middle of the night. (Image from iStock)
When Karla Dzienkowski’s daughter started experiencing abnormal restlessness and daytime sleepiness as a preteen, Dzienkowski initially assumed that these symptoms were simply manifestations of the transition from childhood into adolescence.
“She was 11-and-a-half and I just thought, you know, she’s going through puberty. We just need to bear it out. She was cranky, always tired, exhausted,” Dzienkowski said in an interview with Narcolepsy News.
But over time, it became apparent to Dzienkowski that her daughter wasn’t just pubertal, but was dealing with a medical disorder. “What really tipped me off is you shouldn’t fall asleep at Disney World,” Dzienkowski said.
Dzienkowski’s daughter was soon diagnosed with restless legs syndrome (RLS), a chronic condition marked by the urgent need to move one’s legs. This explained why the preteen felt the need to get up and walk around at night — though the diagnosis didn’t fully explain the unusual episodes of sleepiness during the daytime, despite the fact that RLS can cause disruptions with sleep.
A nurse, Dzienkowski started to suspect her daughter might also have narcolepsy, a rare disorder defined by unusual sleepiness during the day.
“I kept saying, I think that this child might have narcolepsy on top of this. So not only did we [have to get a] clear, appropriate diagnosis for one sleep disorder, it was two,” Dzienkowski said.
Getting a diagnosis of narcolepsy wasn’t easy, however. Dzienkowski took her daughter to a half-dozen different doctors across various specialties, but it wasn’t until she sought care from an out-of-state pediatric sleep specialist that she finally confirmed that her daughter had both RLS and narcolepsy.
“Realizing I really needed to get to a pediatric expert in sleep disorders … was the key to getting [an] appropriate diagnosis and starting treatment for both sleep disorders,” she said. Dzienkowski encourages other parents who think their kid has a sleep disorder to be persistent in seeking out expert care, even in the face of dismissals or disbelief.
“You have to keep searching … You know your child best. You need to continue to keep pushing till you find that provider who’s an expert in this area,” she said.
Of course, getting accurate diagnoses is only the first step of dealing with any medical condition, including RLS and narcolepsy. Dzienkowski then had to find ways to manage the two diseases, both at school and at home.
A sleep disorder in the house ‘impacts everybody,’ mom says
At school, helpful accommodations for Dzienkowski’s daughter included arranging her classes to frontload academics and have gym midday. Another was allowing her to sit in the back of each classroom so she could get up when she needed to without being disruptive.
At home, extracurricular activities were scheduled during the day on the weekend, and Dzienkowski leaned on friends so that all her children, with or without sleep disorders, could get the attention they needed.
“A lot of people don’t realize that when you have somebody who has a sleep disorder in your house, it impacts everybody,” Dzienkowski said.
As her daughter grew older, Dzienkowski took proactive steps to make sure her kid was equipped to manage her disorders independently when she left home for college.
“We would have these scenarios and I’d ask her … how do you think you should handle this? … And then I’d have her repeat. It was like a teaching/learning situation,” she said. “When she went off to college, she could … take care of medications, figure out her triggers, [and manage] her sleep hygiene.”
Mother now heads the RLS Foundation
Dzienkowski now serves as the executive director of the RLS Foundation, an organization dedicated to supporting people with RLS. She first became aware of the group late one night while researching her daughter’s condition, then joined a patient meeting where she connected with others affected by RLS. This led to her joining the board and eventually leading the organization.
Much of the RLS Foundation’s work has focused on education and outreach, crafting educational resources to help people learn about RLS and manage the condition. The foundation also runs more than 70 RLS support groups, and it has certified more than a dozen quality care centers for RLS across the U.S. and Europe.
“The foundation is the leading resource for patients with RLS. We provide science-based information regarding the condition so [patients] can learn about the disease, so they can become their best advocates. Because you have to be the best advocate for your health care,” Dzienkowski said.
In addition to supporting patients, the RLS also offers grants to help fund scientists who are trying to better understand the biological underpinnings of RLS and identify new treatment strategies. This type of research has helped uncover that RLS may be partly driven by problems with the body’s ability to absorb iron – a finding that has had practical applications for Dzienkowski’s daughter managing the condition.
“Managing her iron levels was key to her success with her RLS. … That’s why we all say you’ve got to check iron levels on RLS patients every year, because if you can mitigate symptoms in that way, that’s the easiest way to kind of get things under control,” Dzienkowski said.
Daughter has earned a dual master’s degree
Dzienkowski says her now-adult daughter is doing well – she finished undergrad with a triple major, then earned a dual master’s degree.
This success was only possible because she got an accurate diagnosis and stayed on top of her care, her mother stressed.
“None of this would have happened if it wasn’t for … first acknowledging she has a problem, getting to the right doctor, [getting] treatment, and staying with those follow-ups,” Dzienkowski said.
She noted that doctors should routinely screen for medication side effects as well as iron status.
“You have to follow up annually with your doctor and make sure that your treatment is working,” Dzienkowski said. “That tells you you’re in a good place with a great doctor, because they’re doing what they need to do to make sure that you’re appropriately managed and you’re living your best life.”
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