Restless legs syndrome in children: How the kids see it

When I was a kid, my parents used to avoid giving me Coca-Cola after lunch. Not because they were overly concerned about my health. (If they had been, my mom wouldn’t have given me milkshakes when I watched Kung Fu Theater every Sunday afternoon. But that is a different story).  The reason was that I would have really severe problems falling asleep about a quarter of the time. I would feel like I had “too much energy” in my legs and I would be unable to get comfortable. It was not painful, exactly, and it would go away if I got up to go to the bathroom, but come back again when I laid down again. I had one episode in college resulting in an entirely sleepless night and actually gave up caffeine for eight years, until my third year of medical school.

Fast forward to the library at Harvard in 2010 where I was reviewing for my sleep medicine boards, where I read that sufferers of restless leg syndrome (RLS) may complain of “too much energy in their legs”. I realized that I have had intermittent episodes of restless leg since childhood.

Obviously I had heard of the diagnosis before, and even diagnosed patients with it, but I had never heard that description before. RLS is a surprisingly common disorder in children, although it is difficult to estimate how common it is. About two percent of kids may suffer from it, with about 0.5-1% having severe symptoms. Many adult RLS suffers report that they suffered from growing pains in childhood.

RLS in children and adults is characterized by leg discomfort which keeps the sufferer from falling asleep. It is usually worse at night and always improves with movement. The criteria for making the diagnosis are similar to the adult criteria which are summarized at the International Restless Leg Study Group website. A child needs to describe the symptoms in their own words, and, ideally, a close relative with RLS to make the diagnosis. Let’s see how a few children describe these symptoms. (These images are all courtesy of the RLS Foundation, specifically Georgi Bell. You can view them with several other great illustrations here.)

Aleesha age 13: “It feels like I need to stretch my legs. My drawing is showing me being stretched out by ropes because I feel like I need to stretch my legs whenever I go to bed or if it’s late.”

Restless legs syndrome in children: How the kids see it

Jacob age 9: “Bugs crawling in my legs.

Restless legs syndrome in children: How the kids see it

Sarah, age 10: “What I drew was saying that my top part of my body is relaxed and calm, but the bottom wants to run really bad.

Restless legs syndrome in children: How the kids see it

RLS is by its very nature a subjective sensation. There is no test for the disorder. A careful history and physical examination by a physician is usually all that is necessary. There are a few other issues to consider.

  • Although further diagnostic testing may not be necessary, a serum iron test, specifically ferritin is important as iron therapy to increase the levels of ferritin over 50 μg/L may resolve or improve symptoms.
  • An overnight sleep study is not necessary for the diagnosis. It may, however, show the presence of periodic limb movements of sleep(PLMS), which are rhythmic leg twitches which occur commonly in RLS and may disrupt sleep.
  • RLS may be more common in children with attention deficit hyperactivity disorder.
  • It is critical to enforce appropriate sleep hygiene and age appropriate bedtimes in children with RLS to ensure an age appropriate amount of sleep.
  • Treatment for children with more severe sleep disruption frequently includes medication. In most children I prefer clonidine or gabapentin. Other medications which may be used include lorazepam, clonazepam, ropinirole, or pramipexole. Equally important is avoidance of caffeine or medications such as selective serotonin reuptake inhibitors which may worsen this disorder.

Clearly, the assessment and management of this disorder is complex and should be made by a physician experienced in caring for affected children.

For pediatricians and interested parents, here are some links, some of which may lead to articles behind paywalls:

  • A good review article about RLS and PLMS and children.
  • A very nice article with more great drawings of affected children by Dr. Daniel Picchietti is here.
  • Also please check out the information at the RLS Foundation as noted above.

Special thanks to Dr. Picchietti (the real leader in the study of this disease in children) and Georgi Bell for obtaining permission for the images used in this article.

Craig Canapari is a pediatrician who blogs at his self-titled site, Craig Canapari, MD.

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  • natsera

    Hey, I was one of those kids who suffered with RLS, but it was in the 1950′s and I thought everyone had those sensations, so I never mentioned it. Mine were (and still are) like Jacob’s bugs, accompanied by a similar sensation as when you get an electric shock, but not momentary like that. At its worst, it covered the whole dorsal side of my body, and I have had many sleepless nights, which are worst when you have to get up to go to school or work in the morning. Incidentally, my brother and son, and possibly my mother (deceased) all have had it, so in my family, it’s clearly genetic. My mother always thought my brother was hyperactive, but I’m sure he wasn’t and isn’t — he just can’t sleep. All I can say is I am so happy you are studying and publishing about RLS in children, because no one should have to endure the childhood problems that we did!!

  • http://www.facebook.com/fred.doninilenhoff Fred Donini-Lenhoff

    Thank you for sharing this important information. I suffer from RLS, as I believe my daughter does as well. It’s a difficult disease for adults, and more so for kids, who may have trouble convincing skeptical parents/physicians of the reality of what they’re experiencing.