Restless Legs Syndrome Foundation Blog

How to Manage Your Child's RLS in the Coming School Year

Restless legs syndrome (RLS) does not only affect adults. In the United States alone, RLS is believed to afflict an estimated 1.5 million children and adolescents.

Although most research has focused on adults, RLS symptoms often begin during childhood or adolescence. In fact, about 35 percent of patients report RLS onset prior to age 20, and one in ten report that the syndrome appeared during the first decade of life. Additionally, research has shown that RLS has a genetic component, which causes RLS to oftentimes run in families.

Like adults, children with RLS tend to seek relief from their discomfort by moving their legs — often by fidgeting, stretching, walking, running, rocking or changing position in bed. Parents or healthcare providers often mistakenly label the child’s discomfort as "growing pains." Unlike most adults with RLS, children with RLS often complain of sensations more during the day than at night. However, RLS still causes the quality and quantity of a child's sleep cycle to diminish. This sleep deprivation can result in moodiness, irritability, inattentiveness, fatigue or hyperactivity.

In the classroom setting, attempts to relieve the uncomfortable feelings of RLS may be interpreted as inattentiveness, hyperactivity or disruptive behavior. RLS, however, is a real medical condition that calls for proper evaluation, diagnosis and treatment. Here are some tips to ensure that your child has the resources he or she needs to manage their RLS, especially at school.

Young Children and Adolescents

1. Have an open dialogue among family members about your child's RLS

It is essential for your child to feel supported at home, especially when they are struggling with a disease that they may not understand. Educating your family and your child about RLS will help create a comforting and safe environment for them to discuss their symptoms. The Foundation has a number of resources to educate both parents and children about RLS.

Our newest children's publication, The Adventures of Patty Pillow, is a great tool for your child to learn how to monitor their symptoms, triggers and other patterns. There is a spread in this booklet that allows for your child to keep a "kid-friendly" journal of his or her sleeping patterns and to track symptoms.

2. Talk to your child's teacher

Make an appointment to speak with your child's teacher(s), school nurse and/or coach(es) about your child's RLS. By discussing this important aspect of your child's health, these individuals can help create a plan so he or she can stretch/stand during class when they need to. Applying ice or heating pads may also help your child during class while they are sitting at their desk. You can also give these educators Foundation handouts so that they can learn about this often misunderstood disease - they may have another student with RLS in the future!

3. Establish a routine

A solid bedtime routine will help your child fall asleep faster and for longer. Here are some good rules of thumb:

• Go to bed and wake up at the same time every day. Having a regular routine will make it easier for your child's body to shut off for sleep at night.
• Avoid large meals or snacks right before bed. Caffeine in soft drinks, energy drinks, and chocolate (chocolate milk, candy and ice cream) before bed will also make it difficult for your child to fall asleep. Note: Teach your child how to read labels for RLS triggers, like caffeine.
• No electronics before bed. Blue light from a computer, tablet or phone screen can make your child's body think it's time to wake up. Instead, encourage he or she to take a bath, read a book or do some other quiet activity to get their body ready for rest.
• Play! Getting outside in the sunshine and exercising every day will help your child have a healthy sleep-wake cycle.

Teens

Teens typically require about 9 hours of sleep per night. Staying up late doing homework can contribute to poor sleep quality and restlessness, and can have negative effects on waking life. Encouraging your teen to establish a routine will help them get a restorative night's sleep.

Additionally, see if your teen can schedule their physical education class (or something similar) around mid-day so that they can get a break from sitting at their desk. Alcohol and nicotine can also exacerbate RLS symptoms, so this is also important to discuss with your teen. Read our Teen Guide for more strategies on how your teen can cope with their RLS symptoms.

Want more information on RLS and your child? Email us and we will get you what you need!

Providing RLS Care in Southern Switzerland

Mauro Manconi, MD, PhD, a current member of the Foundation's Scientific and Medical Advisory Board, has devoted much of his career to sleep medicine. In 2016 he partnered with the RLS Foundation as director of the second European RLS Quality Care Center (QCC), the Sleep Center at the Neurocenter of Southern Switzerland.

"The fact that an international organization certified Sleep Center at the Neurocenter of Southern Switzerland is of great satisfaction to us," Manconi said. "It is an important recognition that comes at the end of a long period of clinical and research work by our team... This acknowledgment confirmed that we are on the right track and it further motivated us, but above all it explained to the general administration of our institute the importance of this disease and the need to face RLS with a competent and multidisciplinary team."

Manconi also teaches at the Master School of Medicine at Bern University, the Institute of Communication and Health at the Italian Swiss University of Lugano, as well as at the Professional University School of Italian Switzerland. His research focuses on sleep disorders, specifically sleep-related movement disorders like RLS and PLMS, and he currently serves on the Scientific Board of the European Restless Legs Syndrome Study Group. At the RLS Foundation, Manconi is an active member of the Medical Bulletin Committee.

"The RLS Foundation QCC in Lugano, Switzerland offers individuals with RLS living in Europe a centrally located clinic with access to experts who are specialists in the care and management of individuals with restless legs syndrome," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Finding a knowledgeable provider is an important first step leading to symptom control and improved quality of life."

At the Neurocenter of Southern Switzerland, RLS patients receive a complete diagnostic pathway that begins with clinical and laboratory assessments, using the most sophisticated neuroimaging and video-polysomnographic instrumental examinations when needed. This allows for the certified RLS healthcare providers to rule out secondary RLS or other diseases that enter differential diagnosis along with RLS. At the Sleep Center, each patient receives an individualized therapy, including the management of other possible internist, neurological or psychiatric comorbidity that are periodically discussed by a local multidisciplinary team.

"The Center is always updated on the latest treatment available, participating in clinical trials and research in order to offer a large spectrum of assistance to our patients," Manconi said.

You can find more information on the Sleep Center at the Neurocenter of Southern Switzerland below:

Sleep Center, Neurocenter of Southern Switzerland

Civic Hospital of Lugano

Via Tesserete 46

Lugano, Switzerland 6900

Phone: 0041 (0)91 811 6825

Certified Healthcare Providers:

• Mauro Manconi, MD, PhD (QCC Director)
• Sylvia Miano, MD, PhD
• Stephany Fulda, PhD
• Pietro-Luca Ratti, MD, PhD

What You Need to Know

Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity and restless legs syndrome (RLS). Prior to diagnosis, an RLS healthcare provider may check a patient's iron (ferritin) levels to see if they have low iron.

"Keeping iron levels mid-range (75mcg/L and above) correlates to RLS symptom improvement," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Every individual with RLS needs to know their ferritin level, as it is a key component in the management of RLS symptoms."

Iron is essential for all living cells in the body. It works with the oxygen in your body to produce energy for your cells. When an individual has low iron stores, the amount of iron going into the bone marrow increases. When someone is severely iron deficient, as much as 99 percent of the body's iron will go directly into bone marrow, effectively starving other organs, including the brain, of iron.

There are a number of ways for someone with RLS to ensure that they keep their iron stores up. Eating meat, fish and liver provide the most absorbable form of iron for the body. While leafy green vegetables also contain iron, it is not always broken down adequately by the human digestive tract. Thus, the same amount of iron in a vegetable may not deliver the same amount of iron as in meat or liver.

Additionally, many RLS sufferers turn to supplementation to assist with their iron intake. Iron pills should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux, as they drastically reduce iron's absorption into the body. Some individuals increase this absorption by taking their iron pills with either Vitamin C or orange juice. It is essential for someone with RLS to consult with their physician before taking any supplements or altering their current RLS treatment plan, as this helps ensure the proper monitoring of iron levels, as well as looking out for the development of iron overload known as hemochromatosis.

In severe cases, some individuals with RLS use intravenous iron infusions. Currently, there are five different formulations of IV iron available for use:

• iron dextran
• iron sucrose
• iron gluconate
• ferumoxytol
• ferric carboxymaltose

It is important to note that the low molecular iron formulations present a low risk for allergic reaction, and therefore IV iron usually only considered if iron pills fail to improve iron stores.

The Foundation has a number of publications available in the Member Portal that cover iron and RLS, including our brand new Medical Bulletin. Not a member but need information? Send us an email at info@rls.org and we'll get you what you need!

Board Member and Longtime Friend of the Foundation

Jacci Bainbridge, PharmD, FCCP, a current member of the Foundation's Board of Directors, has a long history with the RLS Foundation. Beginning in 2007, Dr. Bainbridge served on the BOD for eight years. After a two year hiatus, she returned to the board in 2017.

"I have a vested interest in educating our patients, physicians and the public on RLS and neurologic medications," Dr. Bainbridge said. "I chose to serve on the RLS Foundation Board in order to assist in filling a knowledge gap in education and research relating to RLS awareness and medication usage."

Dr. Bainbridge serves as a clinical pharmacy specialist at the Anschultz Outpatient Pavilion's Neurology Clinic, an extension of the Neurology Residency Teaching Program at The University of Colorado Denver. She is also a professor in the Department of Neurology at the university's School of Medicine, and teaches at the Skaggs School of Pharmacy and Pharmaceutical Sciences, where she is a three-time Professor of the Year (2010-2012).

"Jacci is a committed educator and researcher in the RLS field," Executive Director Karla Dzienkowski said. "She brings her knowledge as a PharmD to the board and fully supports the Foundation’s education and awareness outreach, as well as providing valuable insight on research proposals under funding consideration at the board level."

Dr. Bainbridge manages patients with neurologic disease states such as epilepsy, Parkinson disease, multiple sclerosis, migraine and restless legs syndrome. She is currently involved in research projects funded by the Colorado Department of Public Health & Environment using marijuana. In her recent past she has had projects funded by the NIH, spanning subjects such as epilepsy, multiple sclerosis and neuroprotection trials in Parkinson disease.

Click here to read an article from the Winter 2015 edition of NightWalkers that Dr. Bainbridge co-authored with Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM, where they examine the relationship between medical marijuana and RLS.

Our RLS Healthcare Provider Directory

It is often difficult for those of us with RLS to find a physician that fully understands this often misunderstood disease and the various treatment options that are available. Thus, to better serve our members, the Foundation maintains a directory of healthcare providers who have expressed interest and knowledge in the treatment of restless legs syndrome. This directory includes doctors in the U.S. and Canada, and patients can search by city or state/province to find a healthcare provider nearby.

"We get frequent requests from members for physicians knowledgeable in the treatment of RLS," Membership Coordinator Faith Duncan said. "We do our best to provide referrals and if necessary, elevate the level of expertise to one of our Quality Care Centers. We rely on our many constituents to provide feedback to us regarding our listed healthcare providers, as well as their recommendations for physicians we might be able to add to our online directory."

The Foundation also offers a network of certified RLS Quality Care Centers in the U.S. and Europe. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management. To learn more about QCCs and their certification requirements, click here.

"The RLS Quality Care Center and Healthcare Provider Directories are excellent resources for individuals in the RLS patient community in search of a physician," Executive Director Karla Dzienkowski said. "As we know, finding a doctor who can identify and manage RLS removes a barrier to treatment, and will ultimately improve symptom management."

We are always looking to grow our Healthcare Provider Directory. If you are satisfied with your current RLS doctor, please ask them to complete the HCP Referral Form so others seeking help with their RLS can get help.

User Responsibilities: Any decision to visit a healthcare provider from this directory is the sole responsibility of the user. These healthcare providers have expressed an interest in treating RLS. Each person is encouraged to make his/her own investigation prior to consulting for treatment. By using this directory you are assuming full responsibility for using this information and understand and agree that the RLS Foundation is neither responsible nor liable for any claim, loss, or damage from its use.

RLS Foundation Disclaimer: Information provided in this directory is a courtesy of the Restless Legs Syndrome Foundation. While we try to keep this information as accurate as possible, we disclaim any representation about its accuracy, completeness, or appropriateness for a particular purpose.

The RLS Foundation makes no representations concerning the quality of medical care or level of professional skills of any specific healthcare provider. In addition, the listing of these persons does not constitute or imply a recommendation or endorsement by the RLS Foundation.

Tennessee's RLS Quality Care Center

The RLS Foundation offers a network of certified RLS Quality Care Centers (QCCs) around the U.S. and Europe. These QCCs are renowned for their outstanding performance in the field, and are staffed by leading RLS specialists who provide expert care and specialized disease management.

Among these Centers is Vanderbilt University Medical Center, located in Nashville, Tennessee. Accredited by the American Academy of Sleep Medicine, the Vanderbilt Sleep Disorders Center has won a Five Star Excellence Award four years in a row for scoring in the top 10 percent of clinics in the U.S. for patient satisfaction. The Center offers specialized care for sleep apnea, restless legs syndrome, narcolepsy, insomnia and other general sleep problems. At the helm of this RLS Quality Care Center is Arthur S. Walters, MD, serving as QCC Director.

Throughout his career, Dr. Walters has focused his research on sleep-related movement disorders. Additionally, as the founder and first chair of the International Restless Legs Syndrome Study Group (IRLSSG), he helped establish the universal clinical criteria for the diagnosis of RLS.

He also played an integral role in the history of the Foundation, going back as far as 1992 when the Foundation received its nonprofit status. Dr. Walters was a key player in establishing and validating the first scale to be used for the measurement of RLS severity, a scale that is now the most widely used for measuring RLS severity in both academic and industry sponsored studies. He is currently serving as chair of the Foundation's Pediatrics Committee, and is also a member of the Opiate Committee.

“Dr. Walters served as the first Chair of the Medical Advisory Board," Executive Director Karla Dzienkowski said. "Under his leadership, he set the scope and role the MAB would serve as an Advisory Board to the Board of Directors. We are thankful to Dr. Walters for his continued work with the organization, as well as fostering the growth of other clinicians and researchers in the RLS field.”

Other certified healthcare providers at the Vanderbilt University Medical Center include:

• Kanika Bagai, MSCI, MD
• Jennifer Hensley, EdD, CNM, WHNP, LCCE
• Beth Ann Malow, MS, MD
• Althea Robinson-Shelton, MD
• Raghu Pishka Upender, MD

Vanderbilt’s location in Nashville makes it accessible to individuals in various regions of the U.S. that are seeking expert care in the treatment of RLS. The Vanderbilt Quality Care Center has one of the largest staffs of certified healthcare providers in our QCC network, and they treat both children and adults living with RLS. To make an appointment, call 1-615-936-0060.

To achieve certification, Centers undergo review by the RLS Foundation's Scientific and Medical Advisory Board (SMAB), and must demonstrate a high level of expertise and experience treating restless legs syndrome. To learn more about the qualifications and how to apply, click here.

Foundation Awards 10th Recipient of the Ekbom Award

The RLS Foundation is pleased to announce that Christopher J. Earley, MB, BCh, PhD, FRCPI, of Johns Hopkins Medicine, is the recipient of the prestigious 2017 Ekbom Award.
Dr. Earley has been a passionate champion of our mission for many years. Through his medical practice, he has helped many with severe RLS manage their symptoms, worked on many important research advancements for RLS, and has been an outstanding leader of the Foundation's Scientific and Medical Advisory Board (SMAB), which he chairs. Dr. Earley also serves as co-director of the Johns Hopkins Center for Restless Legs Syndrome, the very first RLS Quality Care Center.
"Dr. Early is committed to working with patients to find the best treatment program to manage their RLS so they can get back to enjoying life," Executive Director Karla Dzienkowski said. "Dr. Earley helps to drive the work of the RLS Foundation forward by ensuring that our programs fulfill our mission and goals of awareness, education and supporting research that will lead to better treatments and one day, a cure."
The Ekbom Award is awarded to an individual for meritorious service to the Foundation. Dr. Earley was a member of the Medical Advisory Board (MAB) for 16 years, and also served as MAB Chair. In 2015, Dr. Earley became the first Chair of the new SMAB.
"Dr. Earley’s work as both a RLS clinician and researcher give him a unique perspective and passion for the cause," Dzienkowski said. "I am thankful for his service and willingness to provide guidance, comment or feedback on issues surrounding the work of the Foundation."
Past winners of the Ekbom Award include Drs. Art Walters (1999), Richard Allen (2000) and Michael Silber (2014), all of whom are active members of the SMAB. Other awardees include former Executive Directors Cate Murray (2001) and Pickett Guthrie (2008) - also a founding member - founding members Robert Balkam (2003) and Sheila Connolly (2005), Wayne Henning (2008) and New Hampshire Support Group Leader and former board member Roberta Kittredge (2016).
Stay tuned for a full article about Dr. Earley and his contributions in the summer issue of NightWalkers.

Foundation Attends SLEEP Meeting in Boston for Second Year in a Row

The annual SLEEP Meeting, hosted by the Associated Professional Sleep Societies LLC (APSS), is a three-day conference that brings together the best and the brightest clinicians and researchers in sleep medicine. It is the leading world forum to present and discuss the latest updates in the field - and the RLS Foundation was there to give the RLS community a seat at the table.

“The annual SLEEP meeting is the largest gathering of sleep professionals, featuring course presentations and an exhibit hall with other sleep organizations and businesses in the sleep industry," Executive Director Karla Dzienkowski said. "This forum provides the RLS Foundation the unique opportunity to spread awareness and to educate sleep professionals about RLS.”

Restless legs syndrome was a popular topic in Boston this year, covered in a number of presentations. All Foundation staff members attended one particular course, "RLS Treatment Advances in Post-Mainly-Dopamine Era," moderated by the Foundation's Scientific and Medical Advisory Board (SMAB) member Dr. Richard Allen. A panel discussion and Q&A session followed the presentation, featuring Drs. Christopher Earley, Daniel Picchietti and Diego Garcia-Borreguero. Earley and Picchietti are also both active members of the Foundation's SMAB, while Garcia-Borreguero is a former member of the Foundation's Medical Advisory Board. Research conducted around iron, opiates, augmentation, and RLS and children were discussed.

"The audience was engaged and many physicians asked the panel of experts about RLS treatment standards and findings to implement current standards for their practice," Program Coordinator Chiara Corey said. "The topic of prescribing opiates was frequently asked as many physicians expressed roadblocks on the legislative side that impact their patients."

When they weren't attending sessions, Foundation staff were managing a booth in the Exhibit Hall of the Hynes Convention Center, distributing information about RLS to healthcare professionals and researchers. In fact, many healthcare providers were particularly interested in learning about pediatric RLS, scooping up multiple copies of the RLS Teen Guide and Children's Booklet that staff had available at the booth.

"This year we had more clinicians who knew who we are and have sent patients our way," Chiara said. "Last year more physicians were just learning about who we are and what we do, and even seemed surprised we were there. We met many pediatric care providers and gave them the Children's Booklet and the link to the 'Kids & RLS' section of our website. We heard from researchers that were just beginning to get involved in RLS research, and we pointed them towards our research grant program. "

The Foundation also used this gathering of sleep medicine professionals as an opportunity to hold the annual in-person meeting of its SMAB. During the meeting, the prestigious Ekbom Award was presented to Dr. Earley for his longtime dedication to the RLS Foundation and its goals. Additionally, Dr. Michael Silber, active member of the SMAB and chair of the Opiate Committee, was awarded the Outstanding Educator Award during the SLEEP Conference by APSS. Congratulations to them both!

Next year SLEEP 2018 will be held in Baltimore, Maryland - we'll see you there!

SLEEP 2017 was the 31st Annual Meeting of APSS, a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS). This annual meeting provides evidence-based education to advance the science and clinical practice of sleep medicine, disseminates cutting-edge sleep and circadian research, promotes the translation of basic science into clinical practice and fosters the future of the field by providing career development opportunities at all levels.

Be Visible, Be Heard

By Linda Secretan, RLS Foundation Board Member & Support Group Leader

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine

SDRAB. In some ways an appropriately dreary acronym, but hidden within is sunny opportunity. As one of your RLS Foundation board members, I drew the lucky straw when the opportunity came around for one of us to serve on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health (NIH) last year. When Congress authorized the NIH to develop a Sleep Research Plan, it also provided that it be updated every five years. This is the year, and we, the RLS community, have a seat at the table.

A decade and a half ago, RLS Foundation Board of Directors members Bob Balkam and Bob Waterman (chair emeritus) stormed the doors of the NIH to create awareness about RLS. From this came the early conferences about sleep and sleep disorders and the recognition of RLS as a real concern affecting the lives of real people – like us, our children, our parents. Thanks to our two advocates, to successive RLS Foundation boards and to you, the scope of that early effort has grown, and we are still invited to participate in shaping the research to come.

Here I need to sort out any impression that I’m sharing scientific expertise with my brainy cohorts who are leaders in sleep research. The title I’ve privately given myself is “ordinary person on the board.” It’s exciting to hear what leading researchers and clinicians are up to, but it can be intimidating to step up, to speak and to contribute. When that happens, I remember the words: You are not alone.

Truly, I am not alone at that long conference table. All of you, over 4,000 [members] strong, are right behind me. I hear your frustrations, your questions, and your hope for better treatments and a cure ringing in my ears. I remember how positive action spirals upward. I remember that I am the voice for all of us in this larger community. That is the role for which I have a clear charter. I represent patients – the ones whose concerns are not visible even to physicians and may be ignored by the research community.

You know someone with asthma, don’t you? You may have heard the sound of wheezing and seen the effect of breathing disorders on an active life. Physicians are in the business of helping, fixing and making it better. With asthma, they can see, hear and understand what’s right in front of them, and manage it from a solid base of knowledge and training. With sleep disorders? Not so much.

Research helps because it quantifies. It supplies proofs. When a physician can consult research, he or she is on solid ground for then managing or unearthing a cure. But where is the link when the doctor can neither consult research nor see the symptoms, and has not been trained to look for the effects of sleep disorders – insomnia, fatigue, depression, job loss and diminished quality of life – or even to ask the questions? This missing link is what our contribution to SDRAB is all about.

On SDRAB, we are starting to draw together the many strands of this Sleep Disorders Research tapestry to create the 2016 Research Plan. What is the thread that runs through it all? Over and over again in the margins of my notes there is one word. Over and over I reach for the mic to speak the word again. Over, many times over, I play my broken record in our working group. You have guessed already. The word is awareness. Awareness is fundamental to our aims. If you start to unravel the fabric, you’ll have a hard time finding the beginning, so tightly is the need for awareness woven into the whole.

Without medical school training, physicians will continue to be blind to our disease. Without important research to back up the need, medical schools will not incorporate training. Without the prize of recognition that accompanies well-funded landmark studies, researchers will ignore opportunities to pursue the byways of sleep.

Without awareness of the impact of disordered sleep on lives, careers and families; of what one can contribute and who one can become, there will be no reason for deep-pocket sponsors to fund research. The NIH is a source of major funding, but underwrites only 10–15 percent of the proposals that come their way. To secure a portion of this funding, proposals for sleep research must ride in on rails of urgency.

As individuals, we give what we can through the RLS Foundation, providing crucial funds for studies that can grow to NIH stature. This generosity is a vital ingredient and has enabled big leaps in our understanding of RLS. But there is more: It is up to us to raise our voices wherever we are. We don’t usually think of ourselves as fist-raised, storm-the-barricades activists. Yet simply by being prepared to champion something we believe in and take action wherever we can, we will make strong that thread of awareness. We can assure that our voice is heard. You already have, you know. I applaud your efforts!

So many of you answered the urgent call to comment on the Request for Information from the NIH* that you jammed the NIH communication center with calls to report a faulty email link! Rarely does the public respond so well when invited to give input. Congress hears from only 4–5 percent of constituents – even with email and click-and-send forms. Be visible. Be heard. Even a small step, like sending a memo will help. And it will make you feel more alive, more enriched and happier. How can I be sure? There is research to support that!

*Editor’s note: In May 2016, the NIH sought public input on its Sleep Disorders Research Plan

Stay tuned for the Winter 2017 NightWalkers for advocacy tips from Linda!

The 11th Addition to Our QCC Network

On Jan. 15 Massachusetts General Hospital was certified as an RLS Quality Care Center. Located in Boston, Massachusetts, Mass Gen is a nationally-ranked teaching hospital for Harvard Medical School, as well as a biomedical research facility. According to U.S. News & World Report, the hospital is among the highest in the country for 16 adult and five pediatric specialties.


This brand new Quality Care Center is staffed with four certified RLS healthcare providers:

John W. Winkelman (Director) MD, PhD
Kenneth C. Sassower, MD
Aleksander Videnovic, MD, MSc, FAAN, FAASM
Matt Bianchi, MD, PhD

To make an appointment with one of these physicians, contact Massachusetts General at 617-724-7426. All QCC contact information is also listed on our website.

The RLS Foundation offers a network of certified RLS Quality Care Centers across the country and in Europe. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management. Through education, sharing of best practices and quality improvement projects, the Quality Care Center Network aims to improve the quality of healthcare for all people living with RLS.

These QCCs are renowned for outstanding performance in the field. To achieve certification, Centers undergo review by the RLS Foundation Scientific and Medical Advisory Board and must demonstrate a high level of expertise and experience treating the disease. These Centers:

1. Are recognized as centers providing care to RLS patients by RLS experts

2. Serve as information and referral resources for regional support groups and for healthcare providers who treat patients with RLS

3. Promote understanding of the patient and family role in quality care improvement through educational offerings and literature

4. Share information with other Centers to improve clinical best practices

5. Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

Looking to join the network? Here’s how to apply.

"Growing Pains" - Signs and Symptoms of RLS in Children

At the Foundation, we often receive calls from people with restless legs syndrome who first identified their symptoms as young children. Many of them say their children and grandchildren are also plagued with this devastating disease.

An estimated 1.5 million children and adolescents in the United States are afflicted by RLS, yet many are not diagnosed until adulthood (if at all), their symptoms being attributed to "growing pains." In fact, roughly 35 percent of RLS sufferers report experiencing symptoms prior to the age of 20. One in ten report RLS during the first decade of life.*

It wasn't until 2007 that groundbreaking research partially funded by the RLS Foundation confirmed what so many had been wondering - RLS runs in families. Dr. David Rye confirmed this genetic component by discovering the first gene variant that contributed substantially to the risk for RLS. Today, PubMed lists over 40 articles discussing genetic risk factors for RLS.

Unfortunately, RLS is still not widely recognized. Oftentimes, these children are misdiagnosed with attention deficit hyperactivity disorder (ADHD), labeled as the “problem child” in the classroom or otherwise wrongly punished for a disease that is misunderstood.

Children are among the most vulnerable in society, and those with RLS need a support system that caters to their needs. The Foundation has resources available on our website for both kids and their parents, including the brand new children's booklet, The Adventures of Patty Pillow. This publication, geared towards children between the ages of 7 and 12, teaches kids how to cope with RLS, while not taking away from who they are and what they love.

Additionally, the Foundation has just released its newest publication, the Children & RLS brochure. This brochure provides critical information to healthcare providers concerning the treatment of RLS in kids, and has experts weigh in on RLS and Periodic Limb Movement Disorder in children and adolescents. This and other publications can be access in the Members Only section of our website.

For more information about RLS and your child, call 512-366-9109 or email us. You are not alone!

*Walters AS, Hickey K, Maltzman J et al. A questionnaire study of 138 patients with restless legs syndrome: the ‘Night-Walkers’ survey. Neurology 1996;46:92-5.

*Montplaisir J, Boucher S, Poirier G, Lavigne G, Lapierre O, Lesperance P. Clinical, polysomnographic, and genetic characteristics of restless legs syndrome: a study of 133 patients diagnosed with new standard criteria. Mov Disord 1997;12:61-5.