Overview
According to the International Association for the Study of Pain, pain is “An unpleasant sensory and emotional experience associated with... actual or potential tissue damage." Pain is a warning signal and an effort for the body to protect itself. Chronic pain is any time pain signaling persists for a long period of time, does not respond to conventional treatment or greatly interferes with one’s daily life activities.For some children, chronic pain can be so disabling that it can prevent them from attending school regularly, participating in music, sports or other organized activities, completing household chores and making and keeping healthy friendships. Chronic pain can greatly affect the child’s development and sense of identity.
When a child suffers, the whole family suffers. Not only are you consumed with finding a way to help your child, but you may be experiencing added stress due to lost work time and other disruptions to your daily life.
Cleveland Clinic Children's Pediatric Pain Rehabilitation Program offers hope to children and families coping with chronic pain and related functional disability, even after standard therapies, surgeries and medications have proven unsuccessful. Our program offers a path to help children and families reclaim their lives from chronic pain.
Our approach is simple
The Pediatric Pain Rehabilitation Program will:- Teach effective pain management skills a child can perform independently.
- Gradually increase a child’s strength, endurance and mobility and appropriate safe use of their body.
- Gradually reduce an unnecessary or unhealthy dependence on devices or interventions that unintentionally promote disability.
- Give parents the tools to effectively support their child’s independence and belief they can accomplish life goals.
To accomplish this after months or years of struggle, families need a team of well-trained professionals to successfully complete rehabilitation. We are here for you.
Where we're located
Cleveland Clinic Children's Hospital for Rehabilitation
2801 Martin Luther King Jr. Dr.
Cleveland, OH 44104
What We Treat
We treat children and adolescents with:
- Complex regional pain syndrome (CRPS) - A complex neurological syndrome that's a major cause of disability. It's characterized by severe, burning pain, extreme sensitivity to touch, tissue swelling and excessive sweating. This condition may also be referred to as RSD (Reflex Sympathetic Dystrophy).
- Chronic headache/migraine - A neurological condition that may arise from migraine, tension-type, post-traumatic (post-concussion) or new daily persistent headache. It's characterized by head pain in various locations occurring 15 days or more per month, and often accompanied by other sensory symptoms such as sensitivity to light or noise and nausea or balance difficulties. These headaches persist after doctors rule-out serious underlying disease, and may not respond to medications, leaving children in pain much of the time.
- Chronic abdominal pain - This can be caused by a variety of digestive disorders, such as irritable bowel syndrome (IBS). It's characterized by pain in various parts of the abdomen, and often accompanied by other symptoms such as acid reflux, constipation and diarrhea. This pain may come and go, but persists after doctors rule-out serious underlying disease, and may not respond to medications, leaving children in pain much of the time.
- Amplified Musculoskeletal Pain Syndrome - A neurological condition where a person has pain that is more intense (amplified) than “normal” pain.
- Juvenile Arthritis - A condition that causes joint inflammation and pain episodes lasting weeks to months, creates significant distress and makes it difficult for children to perform daily activities.
- Postural Orthostatic Tachycardia Syndrome (POTS) - A form of dysautonomia, which means the body’s ability to regulate automatic functions is altered. Chronic pain can be a symptom of this condition.
- Ehlers-Danlos Syndrome (EDS) - A condition that affects the connective tissue throughout the body, often characterized by highly flexible joints, which can be unstable at times. This instability or misuse of muscle groups for movement or holding positions (e.g., sitting or standing for extended periods) can lead to increased or persistent pain. In cases where the full criteria for EDS is not met, patients may be diagnosed with hypermobility syndrome.
There are other conditions that often lead to pain in children, such as back pain, joint pain or pelvic pain. These conditions may also require pain rehabilitation if they have persisted for several months, not responded to traditional outpatient care and/or are leading to significant difficulty in daily life.
In conditions where pain is not the primary symptom, our program may provide some support to other symptoms, but the primary target of rehabilitation is pain associated disability. This rehabilitation program is not designed to assist patients with other conditions that are not directly associated with chronic pain.
Chronic pain can present with additional conditions (called comorbidities). These may include anxiety, depression, insomnia or sleep disorder, trauma history, social skill deficits, or other symptoms. Our team will help you identify if any of these are present and what the proper next steps to treat them may be.
Why Choose Us
The Pediatric Pain Rehabilitation Program blends the expertise of behavioral health, physical medicine and rehabilitation & rehabilitation therapy services. Our team also work closely with nutrition, nursing and recreational therapy.
The program, led by Ethan Benore, PhD, has several marks of excellence, including:
- It's the first interdisciplinary pain rehabilitation program dedicated to children and adolescents to be accredited by the Commission on Accreditation for Rehabilitation Facilities (CARF), demonstrating our commitment to providing the highest quality services.
- Recognized by the American Pain Society as a Clinical Center of Excellence in Pain Management for its distinguished, comprehensive pain care.
- 15+ years of programming to build a strong supportive team and excellent rehabilitation programming.
Program highlights
- Our team first meets with families in our Pain Assessment Clinic to clarify your child’s need and plan for care.
- Children are treated in a cohort fashion—meaning several children are admitted at one time so they know they are not alone, they learn to support each other and they learn to develop identifies and relationships separate from pain.
- Specific therapies such as music, art and recreational therapies are offered to motivate children to apply their rehabilitation skills.
- Biofeedback for enhanced self-regulation training is offered.
- Co-treatment across therapies is provided to help children better learn and apply pain management skills.
- A school teacher assists with academic recovery and planning for school reintegration.
- A pool is used for increased therapeutic movement and gentle resistance training.
- Our team focuses on the family with parent-directed sessions and planning for increased independence outside of the hospital.
- A planned field trip (therapeutic community re-entry trip) helps children recognize how community activities impact their functioning and they can apply the skills they've learned in the pediatric pain rehabilitation in a "real-world" setting.
- Support after discharge with our monthly “Momentum Group” that helps patients and their families solidify the skills learned in rehabilitation.
Outcomes
Our staff is dedicated to improving the lives of our patients through innovative clinical activities and treatment-orientated research. Each year we typically provide care to over 100 children. This allows us to learn from our patients and continuously improve the Pediatric Pain Rehabilitation program.
We are proud of the change that we are able to bring to our patients’ and families’ lives through the Pediatric Pain Rehabilitation Program. Our results consistently show that patients’ pain and functional impairment — typically of two or more years’ duration prior to program entry — are significantly improved. Children who complete the program report substantial improvements in their physical functioning, social activity, and anxiety about pain.
Interdisciplinary Pain Outcomes
Fiscal Year 2021
| Ages served | Age range: 9 to 21 years old; Average age: 15 years old | ||||||||||||||||||
| Top three diagnoses treated | Amplified musculoskeletal pain syndrome (AMPS), chronic daily headache and complex regional pain syndrome (CRPS) | ||||||||||||||||||
| Number of patients admitted | 66 | ||||||||||||||||||
| Average number of occupational and therapy hours per day for inpatient programs | 3 | ||||||||||||||||||
| Average number of other therapeutic treatment hours scheduled per inpatient day (e.g. behavioral health, recreational therapy, etc.) | 3-4 | ||||||||||||||||||
| Average number of days in pain program | 19 | ||||||||||||||||||
| Percent of patients discharged home | 98% | ||||||||||||||||||
| Effectiveness of program* | |||||||||||||||||||
|
|||||||||||||||||||
| *As a group, patients showed significant improvement in all areas of functioning. | |||||||||||||||||||
| Average of parents who would strongly agree to recommend the hospital (5 point scale) |
4.88 | ||||||||||||||||||
| School program | Year-round, 1 hour per day | ||||||||||||||||||
| Number of unplanned discharges to acute medical facilities | 1 |
||||||||||||||||||
Inpatient Services
Pediatric Pain Assessment Clinic
The Pediatric Pain Assessment Clinic is the first step in pain rehabilitation. Our team provides interdisciplinary evaluation of children and adolescents with chronic pain and related functional impairment (e.g., missed school days, withdrawal from friends and activities, etc.). The evaluation is designed to help you determine which treatment services will be most effective in helping your child return to their normal activity. The Clinic is a half-day long and includes assessments by a physician who specializes in pain or rehabilitation medicine, a psychologist and either a physical therapist or occupational therapist. After the evaluation, our team will meet with your family to review all findings and recommendations.
If you're referred for intensive inpatient pain rehabilitation, you and your child will receive a tour of our facilities and have the opportunity to learn more about the services we provide. This gives you a chance to meet our team and observe us in action so that you can decide if we are the right fit for your child's needs.
If any services are recommended, our team is also available to monitor your child's treatment progress and provide additional consultation, as needed.
To schedule an evaluation, please contact Narkeytah Harris at 216.448.6064.
Pain Rehabilitation Program
Our unique program, staffed by an interprofessional team of experts in rehabilitation services, behavioral health and medical care, blends two-weeks of intensive inpatient treatment and one-week of outpatient therapies specifically tailored to meet the needs of each child’s pain condition and functional impairment. Our team works closely with parents and caregivers on how to best support their child so they they can achieve enduring long-term results.
First day
Patients and families should plan to arrive at Cleveland Clinic Children's Hospital for Rehabilitation at 8:30 a.m. on the day of admission. The first day will primarily be information gathering, assessments and evaluations. Parents typically stay through the morning as their child adjusts to hospital staff and routines. Therapists may evaluate your child while you are waiting or speaking with other staff members.
First two weeks
Patients are admitted to Cleveland Clinic Children's Hospital for Rehabilitation and treated on an inpatient basis. They will be evaluated by a:
- Pediatric physician or nurse practitioner.
- Physiatrist.
- Psychologist.
- Occupational therapist.
- Physical therapist.
- Recreational therapist.
After each patient’s needs are evaluated, our team forms a specific, individualized treatment plan for their pain management. Treatment each day often involves 3 hours of physical or occupational therapy (including pool, yoga, modified exercises and educational programs), 1+ hour of psychology (individual, group or family), 1+ hour of school and 1+ hour of recreational therapy.
On Saturdays, patients have free time after their morning therapies to do as they please, but they may not leave the hospital. On Sundays, as long as patients are medically stable and there's no technology prohibiting it, families and patients may go out for a 6-8 hour day pass, where the child and parent can practice the skills they've learned so far.
A family team meeting is held during the second week to ensure everyone is on the same page regarding the treatment plan, the child and family’s progress and the next steps in rehabilitation. Typically, children are discharged on the Friday of the second week to begin the Day Therapy Program the following Monday.
Third week
Children are treated on an outpatient basis during the third week. They start the Day Therapy Program and continue their work from the first two weeks, but return home each night. Each day begins at 8 a.m. so parents should plan to walk their child into the hospital before that time. On the first day of the Day Therapy Program, paperwork will need to be completed so parents should plan to briefly stay. Pick up times may vary throughout the week but are typically 4 p.m.
Children will have homework in the evenings to further their rehabilitation progress.
Near the end of the week, our team will arrange a school-reentry meeting to assist your school in receiving and supporting your child after their discharge.
Additional Staff
The program involves pediatric physical medicine & rehabilitation specialists, psychiatrists, hospitalists, nurses, psychologists and counselors, a social worker, physical therapists, occupational therapists, recreational therapists and a teacher.
Program Coordinator
Diana Musgrave, LISW-S
Additional Staff
- Hillary Alexander, PhD
- Maureen Dowger, RN, BSN
- Deb Faith, RN
- Carrie Kreuer, CPNP
- Kathy Maier, RN
- Lauren Nelson, OT
- Myra Malik, DPT
- Dan Schaefer, DPT
- Jenn Ramasami, PhD
- Gayle Kanary
- Bethany Battershell
Additional Specialties
- Gastroenterology
- Hematology/Oncology
- Nephrology
- Neurology
- Nursing
- Nutrition
- Occupational Therapy
- Physical Therapy
- Recreation Therapy
- Rheumatology
- School Program
- Social Work
Resources
General Information
These resources will help give you a better understanding of our program and the next steps you and your child can take towards finding relief:
- Introduction to the Pediatric Pain Rehabilitation Program
- Pediatric Pain Rehab Program Guidelines
- Parent preadmission packet (learn what to expect, what to bring, what to wear, etc.)
- Patient & visitor information
The below resources will help guide you in learning more about pediatric chronic pain and specific pediatric pain conditions.
- American Pain Society (APS)
- American Migraine Foundation
- Pediatric Pain – Science Helping Children
- International Foundation for Functional Gastrointestinal Disorders (IFFGD)
- National Fibromyalgia Association (NFA)
- National Headache Foundation (NHF)
- National Reflex Sympathetic Dystrophy Syndrome Association
- World Health Organization (WHO) - Guidelines on the management of chronic pain
Video Resources
- Understanding pain in less than five minutes
- Understanding pain and what's to be done about it in 10 minutes
- Tame the beast — It's time to rethink persistent pain
- Chronic pain: an animated journey
- The mysterious science of pain
- How does your brain respond to pain?
- Why things hurt
- What is chronic pain?
Provider Resources
- Innovations in Pediatric Pain Rehabilitation
- Physical Exercises as a Tool To Measure Clinical Improvement in Pediatric Chronic Pain
- Case Study: The Overlap of Complex Regional Pain Syndrome and Functional Neurologic Disorder in Pediatrics
Selected publications from our research team
2020
Benore, E., Fahrenkamp, A., Zhakunets, O. & Banez, G. (2020). School re-entry following chronic pain and disability: A pathway to success. Pediatric Pain Letter (published online), http://ppl.childpain.org/issues/v22n1_2020/v22n1_benore.pdf.
Kempert, Heidi. Clinical Overlap of Functional Neurologic Symptom Disorder and Complex Regional Pain Syndrome in Pediatrics: A Case Report’. 1 Jan. 2021 : 113 – 120.
Kempert H. The Use of Yoga as a Group Intervention for Pediatric Chronic Pain Rehabilitation: Exploring Qualitative and Quantitative Outcomes. Int J Yoga. 2020 Jan-Apr;13(1):55-61. doi: 10.4103/ijoy.IJOY_13_19. PMID: 32030022; PMCID: PMC6937875.
Benore, E., Fahrenkamp, A., Zhakunets, O. & Banez, G. (2020). School re-entry following chronic pain and disability: A pathway to success. Pediatric Pain Letter (published online),
http://ppl.childpain.org/issues/v21n3_2019/v21n3_kempert.pdf.
2018
Benore, E., Brenner, A., Banez, G., Wang, L., & Worley, S. (2018). It Takes Two: The Importance of Attending to Parents within the Pediatric Chronic Pain Experience and Interdisciplinary Rehabilitation Treatment. Rehabilitation Psychology, 63(2), 205-214.Buchannan, K., Banez, G.A., Benore, E., Senders, P., & Coker C. (2018). An initial examination of parent satisfaction following intensive rehabilitation for pediatric chronic pain. Clinical Practice in Pediatric Psychology, 6(3), 238-247.
Benore, E., Webster, E.E., Wang, L. & Banez, G. (2018). Longitudinal Analysis of Patient-Reported Outcomes from an Interdisciplinary Pediatric Pain Rehabilitation Program for Children with Chronic Migraine and Headache. Headache, 58(10), 1556-1567.
Fahrenkamp, A. & Benore, E. (2018). The role of heart rate variability biofeedback in pediatric chronic pain rehabilitation: A case series design. Clinical Practice in Pediatric Psychology (published online), DOI: 10.1037/cpp0000259.
2017
Brannon, E. & Benore, E. (2017). How understanding the function of behavior can improve physical therapy progress: The case for psychology. Pediatric Pain Letter, 19(2), 24-28.
Benore, E., & Monnin, K. (2017). Behavioral Treatment for Headaches in Children: A Practical Guide for the Child Psychologist. Clinical Pediatrics. 56(1), 71-76.
Kempert, H., Benore, E., & Pearson, R. (2017). Physical and occupational therapy outcomes: adolescents’ change in functional abilities using objectives measures and self-report. Scandinavian Journal of Pain. 14, 60-66.
Kempert, H., Benore, E., & Pearson, R. (2017). Easily administered patient reported outcome measures: adolescents’ perceived functional changes after completing an intensive chronic pain rehabilitation program. Archives of Physical Medicine and Rehabilitation, 98(1), 58-63.
Kempert, H., Benore, E., & Heines, R. Easily Administered Patient-Reported Outcome Measures: Adolescents' Perceived Functional Changes After Completing an Intensive Chronic Pain Rehabilitation Program. Arch Phys Med Rehabil, 2017; 98(1), 58-63.
Kempert H., Benore E., & Heines R. Physical and Occupational Therapy Outcomes: Adolescents’ Change in Functional Abilities Using Objective Measures and Self-Report Scandinavian Journal of Pain. Jan 2017; Volume 14; 60–66.
Contact Us
Have any questions?
Email PedsPainRehab@ccf.org.
Additional information
You shouldn’t feel helpless. Your child is not alone, and neither are you. Explore our site further to learn more about specific pain conditions that can be effectively treated through our program and find additional resources that will guide you through the appointment process.
For more information, call 216.448.6064 or 216.448.6110.
Patient referrals
Our program has a specific set of requirements and is not appropriate for all complex patients with chronic pain. Patients must meet all of our program criteria to be considered for admission. This includes:
- Being between the ages of 10-17 years with a primary chronic pain condition and severe functional disability.
- Completed diagnostic work-up and cleared for participation in physical activities for all medical conditions.
- Completion of outpatient therapies with no benefit in function (including all these interventions: medical, psychological/psychiatric and physical/occupational therapy).
- Patient and family are motivated and willing to engage in a functional approach (meaning they are not seeking a procedural or medical solution to pain).
If your patient doesn't meet the above criteria, we recommend that you wait to refer them for a Pain Assessment Clinic evaluation until they do meet all criteria, which usually means further outpatient intervention with local specialists. Ensuring that patients meet program criteria before an evaluation avoids patient/family disappointment when they make the effort to travel to Cleveland Clinic Children's only to hear they're not a candidate for our program.
If your patient does meet all of the above criteria, you may complete a referral to our program by sending this documentation:
- Patient demographic/insurance form or Facesheet.
- Send medical records from all treating providers whom the child has seen, past and present (including medical, psychological/psychiatric, and physical/occupational therapy notes).
- Forward MRIs or X-rays disc, labs or procedural reports, if applicable.
- Complete a letter of Medical Necessity; this is a requirement for both evaluation in our program and insurance authorization for patients to be considered for admission to our program. In this letter you as the referring provider will need to document that the family has met program admission criteria and does not have any contraindicated situations for admission, including instability from a medical and psychological standpoint, or activity restrictions.
Once all the above steps have been completed, received and reviewed by our staff, we will contact the family directly to schedule an initial clinic visit.
Please note: Insurance carriers may require a prior authorization before patients are seen for an initial evaluation that requires additional steps from the referring office; we will contact you if this is the case.
If you have any questions about patient referrals, call 216.448.6064 or 216.448.6110.
