Restless Legs Syndrome Foundation Blog

Iron Treatment Shows Promise in Children with RLS or PLMD

By Karla Dzienkowski, RN, BSN, Executive Director, RLS Foundation

Restless legs syndrome (RLS) and periodic limb movement disorder (PLMD) are two neurological conditions commonly treated with oral iron in children. Some children do not tolerate or respond sufficiently to oral iron, and there is not sufficient data to support the efficacy of intravenous (IV) iron in this patient group. This is an important issue, because RLS that is not well managed can have adverse effects on sleep quality and quantity, emotional health, daytime functioning, and quality of life.

RLS diagnostic criteria for children are:

• Urge to move
• Rest induced
• Gets better with movement
• Evening or nighttime worsening
• Sensations not caused by another behavioral or medical condition (may or may not be present)

An RLS diagnosis in children is based on the clinical assessment of reported symptoms and does not require documentation of periodic limb movements in sleep (PLMS); however, PLMS (more than 5/hour) do support a diagnosis of RLS and are present in 60% to 70% of children with RLS.

Researchers have hypothesized a relationship between low brain iron stores in both RLS and PLMD. Brain imaging studies have confirmed the presence of low brain iron levels in adults with RLS. In addition, symptom improvement following iron administration in children with RLS and PLMD is reported in medical publications.

An article in the November 2021 issue of Sleep Medicine titled “Clinical efficacy and safety of intravenous ferric carboxymaltose treatment of pediatric restless legs syndrome and periodic limb movement disorder” evaluates the single administration of IV iron in 39 children with a diagnosis of RLS or PLMD confirmed by two pediatric sleep specialists. The participants in the study included 29 children with RLS (14 boys, 15 girls) and 10 with PLMD (all boys), ages 2–17 years. Children in this cohort were selected using a retrospective chart review; they were referred for iron treatment from June 2019 to December 2020. All children selected to participate in the study had previously been prescribed oral iron but were categorized as “treatment failures” due to untoward side effects (e.g., constipation, vomiting, tooth discoloration) or failure to increase serum ferritin by at least 4 mcg/L after three months of taking an oral iron supplement, in conjunction with a lack of symptom improvement. It is important to note that none of the children in the study had another sleep disorder or a known problem absorbing nutrients from food (malabsorption syndrome).

Seattle Children’s Hospital was the only site selected for this study. The hospital has a dedicated iron infusion clinic for children supervised by a pediatric sleep specialist. The children were carefully monitored throughout the IV iron infusion process, including monitoring for the occurrence of any adverse reactions. All 39 children received a complete medical evaluation. A full iron panel (serum ferritin, serum iron, total iron-binding capacity, transferrin) and Clinical Global Impression (CGI) Scale score was obtained at baseline and eight weeks post-infusion with ferric carboxymaltose.

The study found:

• Pre-infusion CGI symptom severity for the group showed moderate illness. Post-infusion reports revealed “much improved” to “very much improved” CGI scores following one-time administration of IV ferric carboxymaltose.
• Mean ferritin levels for the group rose from 14.6 mcg/L to 112.4 mcg/L.
• Children with PLMD, compared to those with RLS, had similar improvements in symptoms and iron tests.
• Seven study participants experienced mild side effects to IV iron treatment.

In summary, in children with RLS and PLMD, iron is a common treatment consideration. For children who experience a poor response or adverse effects to oral iron therapy, IV iron is a promising new treatment alternative. Future research using randomized, controlled trials is needed to evaluate further the benefits of IV iron therapy in children.

Board Spotlight: Jeffrey Durmer, MD, PhD

By Clara Schlemeyer, Program Coordinator, RLS Foundation

I spoke with Dr. Jeffrey Durmer, a former member of the RLS Foundation’s Scientific and Medical Advisory Board and current member of the Foundation’s Board of Directors. He also serves on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health, and that just begins to list the important professional contributions he makes to the health and wellbeing of RLS patients. Dr. Durmer was awarded an RLS Foundation research grant for his work on pediatric RLS and is currently the chief medical officer at Nox Health, a leader in global sleep health solutions.

Q: How and why did you get involved with the RLS Foundation?

A: I was a pediatric and adult sleep researcher and physician, presenting a poster about my research at the 2003 American Academy of Sleep Medicine meeting. I had studied pediatric RLS and ambulatory leg monitoring, which was the first identification of kids with leg movements in multiple day studies. That’s when Karla Dzienkowski found me at my poster and peppered me with questions about RLS and kids, because she was trying to find solutions for her daughter. At that point she wasn’t even a member of the Board of the RLS Foundation; she was just a mom looking for answers. I introduced her to Dr. Dan Picchietti, a pediatric neurologist with experience treating RLS. Karla and I stayed in touch for many years after that, and she suggested that I get involved with the RLS Foundation as a member of the Scientific and Medical Advisory Board. I received an RLS Foundation grant for pediatric RLS research while I was at Emory University working on phenotyping and genotyping in Iceland and Atlanta. That experience really opened a lot of doors for me in terms of meeting new people in the RLS research world. It kindled in me a desire to be more involved with the RLS Foundation.

Q: How has your experience changed from being on the Scientific and Medical Advisory Board (SMAB) to serving on the Foundation’s Board of Directors?

A: The SMAB is focused on research and the direction of clinical care, and how to marry those two together to advance the Foundation’s mission. The Board of Directors takes a much broader view and considers how to maintain the health of the organization. The Board doesn’t focus solely on patient care. We look at the politics involved in access to patient care–for instance, the access to opioids for refractory cases of RLS. The financial and overall health of the organization is another big focus for the Board, as we try to align our mission with the changes that are currently happening in healthcare.

Q: What do you enjoy most about working with this Board?

A: I really love the comradery of a volunteer board. No one here is looking for anything but a good solid foundation on which to build the organization on behalf of the patients with RLS. Our Board members come from very diverse backgrounds, from someone like me who has done RLS research to people with previous careers in business and education. Some of us are retired and some are currently in the workforce. Some have RLS and others who don’t have RLS are nonetheless dedicated to finding a cure for RLS. This Board has a passion and compassion for people with RLS. That’s what the Board is all about, and I think that’s the best part of serving on this Board.

Q: Do you have any words of advice for those considering Board service?

A: Don’t be shy! It’s not only for people with advanced degrees or board experience. It’s about wanting to serve and having the bandwidth and the desire to effect change and wanting to spend time with people with that same mindset. All you have to do is open the door!

Q: What do you hope to see for the future of the RLS Foundation?

A: The one thing I’m really looking forward to is broadening the message of RLS to reach other patient populations that are suffering with RLS but have primary care physicians who don’t know how to treat it. I’m interested in taking a lead in getting the message out to those in the younger generation through the internet, social media, and even telemedicine.

Q: Your focus is on sleep. What should the RLS community know about sleep?

A: Well, the RLS community knows a lot about sleep deprivation. I think one of the most important things to know about sleep is that culturally, in our country, we are not taking sleep seriously as a fundamental requirement for our health. We have turned the corner on a few things related to the importance of diet and exercise, but that hasn’t happened for the subject of sleep. In fact, we are sleeping less and less as a culture and are reaping the outcome of poor sleep in terms of chronic disease, rising healthcare costs and workplace accidents. Sleep itself is a national security issue. We are in the midst of a cultural epidemic of poor sleep, and RLS is one reason for poor sleep. Good sleep hygiene consists of a routine and takes into consideration sleep duration, timing and quality. The RLS community needs to know this, and so does everyone else!

A Week to Stand Up for RLS

Advocacy is part of the important work of the RLS Foundation that we focus on year-round. Please join us April 4–8 in contacting your representatives to educate them about RLS and our advocacy priorities. To learn more about our advocacy priorities and agenda, check out our prep packet.

Virtual RLS Advocacy week is April 4th-8th and we are inviting the RLS community to participate by sharing your RLS journey with your Congressional representatives! The task may seem daunting but in fact we have outlined the process in 3 easy steps for you to contact your legislators! We have created a handful of short videos to inspire and help you in your advocacy journey.

Click here to Learn How to Find your Representatives

Once you have located your representative and their staffer’s email, your next step is to craft a clear and concise story about your RLS journey.

Click here For Tips on Crafting a Clear and Concise Story

Once you have mastered your RLS story, you will need to put it into action! You can contact your representatives via phone or email, using the information located on their website.

After you have successfully contacted your member of Congress, please send a follow-up email highlighting the information that you touched upon during the meeting or just a general thank you for the meeting.

Click here to Learn How to Follow Up with Congress

To learn why self-advocacy is so important, click here to watch a short video from Board Director Chair Carla Rahn Phillips.

To watch our other advocacy training resources, click here.

Thanks for doing your part to raise awareness of RLS and to advocate for the needs of the RLS community!

RLS Community: Provide Your Comments to CDC by April 10

Background

The Centers for Disease Control and Prevention’s (CDC) National Center for Injury Prevention and Control is in the process of updating the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain. The draft updated Clinical Practice Guideline for Prescribing Opioids is available for public comment in the Federal Register until April 10, 2022. The RLS Foundation urges all RLS community members to add their voice to request that the CDC include chronic diseases like RLS in the treatment guidelines. Below are the 5 steps you can take to let the CDC know that low-total-daily dose opioids must be included as a viable treatment option for RLS patients.

Instructions

1. Start on webpage: https://www.regulations.gov/document/CDC-2022-0024-0001/comment and click on "Comment"

2. Enter your comment using the sample comment below as a template.

3. Identify yourself as an individual, 4. Check the box for reCAPTCHA, and 5. Submit Comment.

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE COMMENT*-----

I thank you for revising the CDC Clinical Practice Opioid Prescribing Guideline, but the draft does not address chronic conditions like RLS that are different from chronic pain. Restless legs syndrome (RLS) is a chronic neurological disease that causes an urgent need to move the legs and, in some cases, other parts of the body as well. The symptoms make it impossible to sleep or even to sit quietly, which seriously affects every aspect of daily life.

In the U.S., nearly 12 million adults and children suffer from RLS. There is no cure. A few prescription medications may relieve the symptoms for a while, but over time those same medications can make the symptoms worse. When all other medical therapies fail, ample scientific research supports the use of low-total-daily-dose opioids to treat severe RLS.

[Tell your own experience with RLS in a short paragraph.]

The first physician to diagnose RLS more than 300 years ago treated it successfully with opioid therapy. Ironically, the 2016 CDC Opioid Prescribing Guidelines often made physicians afraid to prescribe opioids for any reason, even for patients with severe, unrelenting RLS who had been on the same low-total-daily-dose opioid therapy for decades. I urge the CDC to include a section in the 2022 Opioid Prescribing guidelines to address chronic medical conditions like RLS that require opioid therapy as a last resort, in low-total-daily doses, carefully monitored.

Thank you for your consideration of these vital issues, and please consider the RLS Foundation at www.rls.org as a resource for scientifically-based information about RLS, as it is for members like me.

Act NOW!

Add your comments by April 10 to be sure that the committee receives as many comments as possible from the RLS community. Please contact the RLS Foundation for assistance at info@rls.org.

RLS Foundation Certifies UPMC as Quality Care Center

The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Pittsburgh Medical Center (UPMC) in Pittsburgh as an RLS Quality Care Center.

As an RLS Quality Care Center, the University of Pittsburgh Medical Center is certified to provide expert care to patients who have restless legs syndrome, a chronic neurological sleep disorder.

An estimated 2% to 3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on quality of life. As an RLS Quality Care Center, UPMC will serve as a destination for RLS patients who need expert medical care.

“We are honored to receive this designation,” says Avinash Aggarwal, MD, director of the Quality Care Center at UPMC. “Our goal is to provide the best and most comprehensive care for patients who have RLS. Designation as an RLS Quality Care Center certifies that we adhere to the highest standards of care and will identify us as having expertise to treat RLS at all levels of severity. We are particularly proud to be the first in our region to receive this designation.”

UPMC joins a network of 11 institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for regional support groups and for healthcare providers who treat patients with RLS
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome UPMC into the Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face many challenges in managing their symptoms. Having access to healthcare providers who are highly skilled and experienced in treating RLS is essential for patients to get adequate treatment and improve their quality of life.” Dzienkowski adds, “Our goal is to help RLS patients find healthcare providers with expertise in disease management at a Quality Care Center. We look forward to our work in partnership with UPMC to advance the quality of care for RLS patients.”

Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-program.

RLS Foundation Funded Opioid Registry Finds COVID-19 Effect

The RLS Foundation is pleased to announce the publication of the article “Restless Legs Syndrome Severity in the National RLS Opioid Registry During the COVID-19 Pandemic” in the online January 2022 edition of Sleep Medicine.

The National Opioid Registry, funded by the RLS Foundation, is a longitudinal study to evaluate the use of an opioid medication in the treatment of refractory RLS.

The first of its kind, the study evaluates the impact of COVID-19 on RLS severity in this population. An increase in RLS symptom severity was found in this group during the early stages of the pandemic. The study highlights the need for clinicians to monitor and manage changes in patients' RLS symptoms during times of uncertainty with global impacts.

Free access to the article with no signup or registration required is available until March 26, 2022 here:

https://authors.elsevier.com/a/1eXMt4y2Nr15Bu

NIH releases the 2021 Sleep Research Plan

The Sleep Research and Sleep Disorders Research Advisory Board is congressionally mandated to develop the US Sleep Research Plan every five years. Established in 1993 by the US Congress, the National Center on Sleep Disorders Research (NCSDR) is part of the National Heart, Lung and Blood Institute (NHLBI), whose focus is to study the toll that sleep disorders and sleep loss have on productivity, longevity, illness, and mortality. The Sleep Disorders Research Advisory Board (SDRAB), which is an advisory board to the National Institutes of Health and National Sleep Center is responsible for writing the Sleep Research Plan.

RLS Foundation Board Member and SDRAB Member, Linda Secretan, was directly involved with writing the 2021 Sleep Research Plan. She helped to determine the plan’s key strategic goals and priorities.

The plan comprises five specific goals:

1. Sleep and Circadian Mechanisms Underlying Health and Disease
2. Risk Reduction and Treatment of Sleep and Circadian Disorders
3. Clinical Implementation of Sleep and Circadian Research
4. Sleep and Circadian Disruptions and Health Disparities
5. Foster the Development of a Strong and Diverse Workforce for Sleep and Circadian Research

These five goals provide opportunities for research in sleep and circadian rhythms but also encourage research into other areas of interest in the field of sleep. Secretan’s input helped shape the final plan, which includes nine critical opportunities that seek to expand research in the science of circadian and sleep research.

Sufficient sleep is an essential requirement for overall health and wellbeing, yet half of all US adults and three-quarters of teens report sleep deficiency – factors that impair sleep quality, sleep quality, and total sleep time. The 2021 Sleep Research Plan is a comprehensive document that highlights the importance of sleep and personal strategies to ensure restorative sleep. The plan also underscores the importance of sleep in overall health maintenance and disease prevention.

Sleep is an essential pillar to health maintenance just as diet and exercise. However, sleep is often the pillar given the least attention in health promotion activities. Yet, all three pillars need equal attention for optimum health and disease prevention.

The 2021 Sleep Research Plan will advance the science of sleep and circadian research leading to better patient outcomes for those living with sleep disorders.

A special note of thanks to the over 200 RLS community members who attended the Virtual Congressional Briefing on Tuesday, January 25, 2022, to announce the 2021 Sleep Research Plan.