CRPS/RSD/Chronic Pain in Children & Adolescents
For awhile it appeared that perhaps children and adolescents didn't contract RSD; we now know that, unfortunately, they can and do acquire it just as easily as adults. Still, the physical, psychological, and emotional toll taken by this syndrome can be particularly acute in young people who can't understand what's happening to them. Thus, a sizable literature now exists, which grows larger every year, concerning the special concerns and challenges experienced by young CRPS patients as well as their caregivers.
Important Note!! Young people have the greatest chance of achieving remission, so if you have or know a child with RSD, it's critical to get them diagnosed and treated, before it becomes chronic!!
In addition to the articles below, the Library has about 30 scientific papers related to CRPS and children.
To go directly to the chapters from the Handbook of Pediatric Chronic Pain, please click here.
American Childhood Cancer Organization "Our mission is to provide information and support for children and adolescents with cancer and their families, to provide grassroots leadership through advocacy and awareness, and to support research leading to a cure for all children diagnosed with this life-threatening disease." These folks know a LOT about supporting children in horrible pain.
An Effective Treatment of Severe CRPS Type 1 in a Child Using High Doses of Intrathecal Ziconotide The patient reported profound pain relief, suppression of her severe allodynia, and improved range of motion on 24 mg of ziconotide per day. (pdf)
Beacon of Hope CRPS Kidz a very nice one-person site, created and maintained by a 16=yr-old. Major sections include what CRPS is, several articles and videos created specifically for adolescents, and the author's journal.
Buprenorphine TTS for children – a review of the drug’s clinical pharmacology an 11-page review of the pharmacology of transdermal buprenorphine in children. This kind of study is essential since children do not metabolize drugs in the same way adults do.
Challenges of functional imaging research of pain in children "Measures of changes in the brains of children have important implications in understanding neural plasticity in response to acute and chronic pain in the developing brain."
Complex regional pain syndrome by vaccination this is a case of complex regional pain syndrome development after a vaccination for inﬂinfluenza A(H1N1). It's very strange - the patient was a 17-year old girl with no remarkable history.
Complex Regional Pain Syndrome in Children From the American Pain Foundation, a very complete article with sections on causes, diagnosis, research, etc.; the largest section is on treatments. A very useful and authoritative article.
Complex regional pain syndrome type I in children The child population differed from adults in that the skin temperature of the involved extremity at onset was more often cooler, the lower extremity was involved more frequently and neurological and sympathetic symptoms were less pronounced.
Continuous Peripheral Nerve Blocks at Home for Treatment of Recurrent Complex Regional Pain Syndrome I in Children "Ambulatory continuous peripheral nerve block associated with an initial Bier block seems to be a significant and novel contribution to treat recurrent pediatric complex regional pain syndrome I. It allows complete pain relief, early mobilization, and rapid return home, representing a psychological advantage for these children."
CRPSKidz: A Beacon of Hope "The vision of CRPSKidz is to provide awareness to the public about the challenges kids with CRPS face. It is a journey through awareness and therapy and a safe place for kids to know they are not alone with their disease."
CRPS/RSD in Children & Adolescents "Intraoperative Anesthetic Management Matters" - this study emphasizes the importance of perioperative anesthetic management, especially in young patients, to avoid unnecessary mortality on the operating table.
Cutaneous sensory abnormalities in children and adolescents with complex regional pain syndromes "As with adult CRPS, the thermal and mechanical sensory abnormalities appear in different combinations in different patients with similar clinical presentations. In a majority of patients, the pathogenesis of pain is seemingly of central origin."
A Day-hospital Approach to Treatment of Pediatric Complex Regional Pain Syndrome "A day-hospital interdisciplinary rehabilitation approach seems effective in reducing disability and improving physical and emotional functioning and occupational performance among children and adolescents with CRPSs that have failed to improve with outpatient treatment"
Distinct CNS processing during symptomatic and recovered CRPS in children the authors of this paper measured the CNS circuitry in children with CRPS Type 1 and healthy people., indicating the the brains of CRPS children process signals differently than those in healthy kids.
Explaining RSD a deceptively excellent site, with a first page aimed at young children, but with many excellent links to medications, insurance, physicians, etc. It also sponsors forums they call "Pain Pals" - one for older children and one for young kids.
The Extra Burdens Faced by Young People with Chronic Illness a great article by a woman lawyer who had to quit her job due to chronic illness. There are many other excellent posts in her series.
Fighting Against RSD "This site is to help not only teenagers but young adults who are dealing with the pressures of living with Reflex Sympathetic Dystrophy Syndrome (RSDS) or Chronic Regional Pain Syndrome CRPS (CRPS). "
Griffin's CRPS (RSD) Treatment by Sandy Boone - GoFundMe GoFundMe.com is a site that sponsors efforts to raise money for children with serious, unusual medical conditions who can't afford the needed treatments. This episode covers a 16-yr-old boy with serious CRPS; there's a lot of information on the site about the illness and its progression in this particular patient.
Handbook of Pediatric Chronic Pain a superlative, comprehensive volume. I have chosen 10 of the 25+ chapters for inclusion here. The term right before the ".pdf" extension denotes the number of pages in that chapter. Thus, since Ch.1's link ends with "-14p.pdf", that chapter is 14 pages long.
Ch1_The Epidemiology of Pediatric Chronic Pain-14p.pdf
Ch2_The Neurobiology of Chronic Pain in Children-11p.pdf
Ch3_Theories on Common Adolescent Pain Syndromes-18p.pdf
Ch6_Psychiatric Considerations in Pediatric Chronic Pain-8p.pdf
Ch7_Clinical Management of Musculoskeletal Pain Syndromes-11p.pdf
Ch16_Complex Regional Pain Syndrome (CRPS)-7p.pdf
Ch18_The Integrative Approach for Management of Pediatric Pain Acupuncture-10p.pdf
Ch20_Pharmacology of Chronic Pain Management-28p.pdf
Helping Children/Youth with RSD/CRPS Succeed in School A great pamphlet from RSDSA, with many suggestions about supporting your child who is trying to succeed academically while fighting RSD/CRPS.
Identification of pain-related psychological risk factors for the development and maintenance of pediatric chronic postsurgical pain "This study highlights the prevalence of pediatric CPSP and the role played by psychological variables in its development/maintenance. Risk factors that are associated with the development of CPSP are different from those that maintain it."
Intrathecal Local Anesthetic Infusion as a Treatment for Complex Regional Pain Syndrome in a Child "The following case study describes a novel and successful use of intrathecal catheter administration of ropivacaine in a child with early, rapidly progressing, and debilitating complex regional pain syndrome."
Is Physiotherapy Effective for Children With CRPS1? In a large, well-controlled study, the authors determined that physiotherapy, when combined with other interventions, "may lead to short-term improvement in the signs and symptoms of CRPS-1".
Lumbar Sympathetic Blockade in Children with Complex Regional Pain Syndromes "Under the conditions of this study, the results provide some direct evidence that a component of pain may be mediated by abnormal sympathetic efferent activity."
Movement disorders associated with complex regional pain syndrome in children "The aim of the present study was to review the history, clinical course, treatment, and outcome of movement disorders in children and young people with complex regional pain syndrome (CRPS)." (pdf)
My Child and RSD (Reflex Sympathetic Dystrophy) "This is a day to day ongoing diary of what it's like for a parent to live with a child who suffers with chronic pain/struggles/fears/ known as RSD. To learn more about RSD (Reflex Sympathetic Dystrophy) please visit the links that I've provided at the bottom of THIS page."
Neuropathic Pain & Complex Regional Pain Syndrome in Children an excellent, 25-page summary of CRPS in children and their special needs, from the University of Edinburgh.
Pain-Free Kids a really great Canadian site, which has such a positive tone throughout that you can tell it's written with kids in mind. Highly recommended!
Pain Rehabilitation Program from the Cleveland Clinic; "Chronic pain can be so disabling that it can prevent a child from participating in normal age-appropriate activities, such as school, social events, and sports. It also can lead to isolation and depression as the child withdraws from friends and family." This is an excellent, multi-page presentation on this clinic's approach to child CRPS.
Painful Hips in Children part of a great, UK-based site offering trusted medical advice written by healthcare professionals. This particular section deals with every conceivable cause of hip pain in children, with several sections on CRPS.
Pediatric Palliative Care - Use of Opioids for the Management of Pain a very complete 24-page review of the use of opioid drugs in children with chronic pain.
Peripheral catheter techniques periperal nerve blocks are a common form of anesthesia in children, including as a therapy for CRPS. This review article goes through the proper techniques for children, with many references.
Plasticity of Complex Regional Pain Syndrome (CRPS) in Children "recent evidence would suggest that the pathophysiology is most likely identical involving endocrine, behavioral, developmental, and environmental factors that distinguish clinical presentation in children from the adult. Behavioral management is a mandatory accompaniment of any program of exercise therapy and the sometimes extreme sensory disturbances and parental enmeshment do distinguish the clinical presentation from that in the adult."
Please don’t hurt me! A plea against invasive procedures in children and adolescents with complex regional pain syndrome (CRPS) this paper makes the point that many young people with initial diagnoses of CRPS are subjected to invasive interventions like SCS, nerve blocks, or catheters, despite the proven success of more conservative protocols.
Quality of life in adults with childhood-onset CRPS Type 1 the literature has many accounts of children achieving cures that last a lifetime. Unfortunately, of early-onset CRPS people, 33% ultimately do relapse into active CRPS.
Reflex Sympathetic Dystrophy in Children a free, streaming 43-minute film (from the International Research Foundation for RSD/CRPS) summarizing the special considerations and challenges of dealing with RSD in children and adolescents. Available for both slow Internet connections as well as broadband.
Reliability of four experimental mechanical pain tests in children "All tests seemed to be reliable measurements in pain evaluation in healthy children aged 8–14 years. Given the small sample size, this conclusion needs to be confirmed in future studies"
RSDHope Teen Corner a very nice, well organized site that focuses on the needs of children from about 10 through adolescence. It doesn't look like it's been updated for over 10 years, so although it still functions, it needs updating and maintenance something awful.
RSDHopeTeens "A support group EXCLUSIVELY for kids and teenagers suffering from reflex sympathetic dystrophy (RSD)/complex regional pain syndrome (CRPS). (Parents, please do not apply, this group is for teens and kids only)."
RESOURCES for CRPS Kidz & Guardians a fairly short site, possibly authored by the young CRPS patient himself. Many useful links to other resources on the Internet.
Symptoms of Pain in Children from the great WebMD site, this section deals with the urgency of determining the source of pain in children, especially that which continues for several days or weeks.
Teens and Kids Fighting CRPS/RSD "Teenagers sharing their stories about CRPS/RSD"
Your Child is Diagnosed with CRPS An excellent, short article from RSDSA, directed to the parents of a child with RSD/CRPS. There are many suggestions for parents to be most supportive, from learning as much as possible about the illness to maintaining open communication with the child's school.