Overview

Overview

When a Child Hurts the Whole Family Hurts

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 your 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 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 proved unsuccessful. Our program offers a path to help children and families reclaim their lives.

The approach is simple

Our program will:
  • Teach effective pain management skills a child can perform independently.
  • Gradually increase the 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.

While the approach seems simple, 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

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*
  At PAC (N=37) At Discharge (N = 34)
  • Pain Intensity
 7.43  5.97
  • PROMIS Pain Interference
 24.81 14.68 
  • PROMIS Fatigue 
 29.97 14.74
  •  PROMIS Mobility
12.27  23.91
  •  BAPQ Pain Worry
16.57 7.94
 *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
What We Treat

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 - 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

Why Choose Us

Our program blends the expertise of behavioral health, physical medicine and rehabilitation and 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.

Outcomes

Our staff is dedicated to improving the lives of our patients through innovative clinical activities and treatment-center 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.

Inpatient Services

Inpatient Services

Pediatric Pain Assessment Clinic

  • The Pediatric Pain Assessment Clinic is the first step in 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.). Our evaluation is designed to help you determine which treatment services will be most effective in helping your child return to normal activity. It's a half-day in length and includes assessments by a physician who specializes in pain or rehabilitation medicine), a psychologist and either a physical therapist or occupational therapist. The team will then meet with your family to review all findings and recommendations.
  • If referred for intensive inpatient pain rehabilitation, you and your child will receive a tour of our facilities and have opportunities to learn more about the services we provide. This will give you a chance to meet and observe us in action so that you can decide if we are the right fit for your child and family.
  • If any services are recommended, our team is also available to monitor your treatment progress and provide additional consultation as needed.
  • To schedule an evaluation, please contact Narkeytah Harris at 216.448.6064.

Pain Rehabilitation Program

Patients and families should plan to arrive to the hospital 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 of the first day as their child adjusts to hospital staff and routines. Therapists may evaluate your child while you are waiting or speaking with other staff members.

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 with one week of outpatient therapies specifically tailored to meet the needs of each child’s pain condition and functional impairment. We work closely with parents and caregivers how to support their child to achieve enduring long-term results.

The 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:
  • Pediatric physician or nurse practitioner
  • Physiatrist
  • Psychologist
  • Occupational therapist
  • Physical therapist
  • Recreational therapist

After we evaluate each patient’s needs, we form a specific, individualized treatment plan to provide pain management. Treatment often involves 3 hours or physical or occupational therapy each day (including pool, yoga, modified exercises and educational programs), 1+ hour of psychology per day (individual, group or family), 1+ hour of school and 1+ hour of recreational therapy.

On Saturdays, children creatively use downtime after morning therapies but 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 learned thus 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. Here the child and parent can schedule their time appropriately and practice the skills learned thus far.

The third week

Children are treated on an outpatient basis during the third week. They arrive to the Day Therapy Program and continue the work of the first two weeks, but return to their families each evening.
Each day begins at 8 a.m. Parents should walk children into the hospital before 8 a.m. On the first day there will be paperwork that needs to be completed and you should plan to stay briefly. Pick up times may vary throughout the week but are typically 4 p.m.

Children will have homework in the evening to further their rehabilitation progress. 

Near the end of the week, we will arrange a school-reentry meeting to assist you school in receiving and supporting your child after discharge.

Program/Hospital Information

The below resources will help you better understand our program and the next steps you and your child can take towards finding relief.

Our Doctors

Our Doctors

Additional Staff

Additional Staff

  • Hillary Alexander, PhD
  • Bethany Battershell
  • Maureen Dowger, RN, BSN
  • Deb Faith, RN
  • Gayle Kanary
  • Heidi Kempert, PTA
  • Carrie Kreuer, CPNP
  • Kathy Maier, RN
  • Myra Malik, DPT
  • Lauren Nelson, OT
  • Jenn Ramasami, PhD

Additional Specialties

Contact Us

Contact Us

Have any questions?

Email PedsPainRehab@ccf.org.  

Additional information & referrals

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 or to refer a patient, call 216.448.6064 or 216.448.6110.

Resources

Resources

General Information

The below resources will help guide you in learning more about pediatric chronic pain and specific pediatric pain conditions.

Recent selected publications from our 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. Scandanavian 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.