How to Manage Chronic Pain in Children&Adolescents
Online Health Chat with Dr. Gerard A. Banez
January 11, 2011
Cleveland_Clinic_Host: Living in constant pain is difficult for anybody – but for children and adolescents, it can be almost unbearable. As a parent or caregiver, you may feel helpless and frustrated as you watch your child: drop out of sports and outside activities, avoid personal and family responsibilities, miss school and stop doing things with their friends, experience increased stress and/or develop symptoms of depression and anxiety, give up their dreams and goals, and feel increased hopelessness.
Your child is not alone...nor are you. The Pediatric Pain Rehabilitation Program at Cleveland Clinic Children's Hospital for Rehabilitation is specifically designed for children and teens whose chronic pain interferes with their normal activities. It is the first and only CARF-accredited interdisciplinary pediatric pain rehabilitation program in the world. Our number one goal is to get your child back to doing things they love to do – despite their pain.
An interdisciplinary team of specialists addresses each child's individual needs, and children are examined by the appropriate pediatric specialist(s) to better understand their pain condition. For example, a pediatric neurologist will evaluate a child with headaches. A pediatric rheumatologist will assess a child with fibromyalgia. Children are admitted into the program when there is agreement that an intensive, coordinated team approach is needed. Over the course of the program, our staff will communicate with you on a regular basis regarding the status of your child.
The two-part program consists of inpatient and day hospital components. The program's length is tailored to each child's needs, but children are typically seen for three weeks – two weeks as inpatients, and one week as day hospital patients. As inpatients, children and adolescents are often initially seen and treated apart from their parents. This allows them to concentrate on their care, and gives our team the chance to observe and treat them independently. Parents will have meetings with various team members and can visit with their children in the evenings.
Our Children's Hospital Pediatric Pain Rehabilitation Program is the only one of its kind regionally. Nationally, it is the only program that consists of both inpatient AND outpatient components.
Gerard A. Banez, PhD, is a pediatric psychologist at Cleveland Clinic Children's Hospital, where he serves as Program Director for the Pediatric Pain Rehabilitation Program. His clinical/research interests include pain-associated disability syndrome, pediatric pain rehabilitation, and elimination disorders.
Cleveland_Clinic_Host: Welcome, Dr. Banez. We are excited to have you join us today! Let's get started with one of the many questions we have already received.
Dr__Gerard_Banez: Thanks - I am excited to chat with you today.
Complex Regional Pain Syndrome (CRPS)/RSD
Rebecca_Ann: What type(s) of treatment are available to help with relief of allodynia pain associated with CRPS? What medications, if any, have been more successful in treating allodynia?
Dr__Gerard_Banez: There are a number of different treatments available, including medications, procedures or devices, and physical/occupational therapies. The most effective treatment for RSD symptoms, including allodynia, is PT/OT. In OT, desensitization is the primary goal.
Ellyn: My daughter, 14, has been suffering with RSD for more than two years. How do I let go of the fear once we get her into remission? I would love to just keep her in a bubble forever, but I know that's not the answer!
Dr__Gerard_Banez: Letting go of the fear is one of the most difficult things for the parents to do.
The goal of any treatment for RSD is to promote independence and autonomy. The more physically able your child becomes, the more confident parents will become of their abilities to function independently. For some parents, meeting with a psychologist or counselor themselves may be helpful in this process.
RA: In relation to CRPS treatment in the pediatric program for pain: Is the intensity of physical therapy tailored for each individual? What happens if the professionals sense it is too much mentally or physically?
Dr__Gerard_Banez: Treatment is individually tailored. If professionals feel the therapy is too much, it is adjusted appropriately. For these kids to improve, it is part of our jobs to push and set the bar appropriately so they progress and see improvement in function.
RA: Do CRPS patients engage in group therapy with other CRPS patients?
Dr__Gerard_Banez: Yes. Patients participate in group and individual physical and behavioral therapies. We have found the social aspects of our program to be very supportive and beneficial to program participation and to outcomes. Many of the kids we see comment that until they have been in the group they had never met another child with CRPS.
gymnastmom: How many children with CRPS have been treated in your program? What is your success rate with respect to regaining full function? What is your success rate with respect to becoming and remaining pain-free?
Dr__Gerard_Banez: In the first three years of our program, 35% of the 195 patients seen were diagnosed with CRPS. More than 90% of the patients returned to function. Function is described as returned to school and previous level of daily activity. At three-year follow-up, our patients have reported almost no need for ER visits or hospitalizations.
sara_f: My daughter was diagnosed with RSD within the last year. Since then, I have noticed more mood swings, and I'm concerned that she is becoming depressed. What can I do to help?
Dr__Gerard_Banez: Always start with the person who made the diagnosis in order to explore the need for a referral to a psychologist experienced with RSD. All pain, including RSD, does have psychological aspects. Stress, mood, and emotions can impact a child in pain, and pain like RSD can lead to increased stress and depression. For that reason, psychological consultation is important for most kids with chronic pain.
Children in Pain
soccermom3: My son sprained his ankle about six weeks ago. It was a mild sprain and appears to be healed. But he is still limping and complains of severe pain. How can I tell if he is truly in a lot of pain or if he's exaggerating?
Dr__Gerard_Banez: Contact your pediatrician if you have concerns about the lingering pain to determine if healing has occurred. Kids in chronic pain have often been affected by an initial injury. Sometimes, the pain can be overwhelming and anxiety producing. It is important to validate and acknowledge your child’s pain while exploring what other stressors he may be avoiding.
puzzled: My daughter has had an intractable daily migraine for nearly five years. She has had MRI’s, a CT scan (last MRI and CT showed narrowing of internal jugular veins), and several spinal taps (first LP was elevated, but after treatment, the rest have been normal). We have seen various specialists, including traditional doctors, alternative therapists, and psychological counselors (including behavioral cognitive group therapy for coping). Nothing to date has worked to manage or reduce her pain. Do you have any suggestions?
Dr__Gerard_Banez: Headache is the second most common diagnosis seen in our program. Many of the headache patients we see have histories similar to your daughter’s and have not responded to standard medical or behavioral treatments. An interdisciplinary rehabilitation approach focused on restoration of functioning can be most effective. Our experience is that as patients return to normal activity, their headaches and other pains become less of a problem in their daily lives.
lizsomebody: We have had numerous diagnoses, the latest being fibromyalgia. Reactive arthritis, polymyatica rheumalgia, central neural sensitization syndrome being some of them. How would you go about confirming/ruling out the diagnosis?
Dr__Gerard_Banez: Our program is most helpful for patients and families who have already undergone thorough medical evaluation and are comfortable with the diagnosis given. The focus of the program is on treatment and not diagnosis. If people are interested in more detailed evaluation, we recommend that it be completed prior to beginning the program. However, if we feel a child in our program requires further evaluation while here, we will make appropriate arrangements.
RA: Do therapists allow acknowledgment of pain levels during OT/PT?
Dr__Gerard_Banez: Yes. However, we try to avoid unnecessary questioning about pain and encourage both patients and families to minimize their “pain talk.” Our concern is that the more that patients dwell on the pain, the more anxious they will be and the worse they will feel.
jec: How involved are the parents during the intensive program?
Dr__Gerard_Banez: Parents participate in a weekly parent education and support group. After an initial assessment and focus on the child's needs and treatment, parents are brought into psychology and therapy sessions so they are prepared to maintain progress at home.
Parents may visit each evening from 5 p.m. to 9 p.m. and longer on weekends to maximize their child's focus on treatment.
Ellyn: Doctors at Children’s in Dallas are currently working to recreate a program similar to yours for my daughter. What can I do as a parent to make her hospitalization most effective?
Dr__Gerard_Banez: As parents, our primary job is to protect our children from painful situations. Kids in chronic pain often lose some of their independence and rely on parents in a way they may not otherwise. It will be most empowering to your child to encourage ownership of her pain and symptoms and, more importantly, her function. You can do this while supporting and promoting her health and participation in treatment.
mlemurphy_1: How do I get my 18 year old to help himself if he is tired and depressed from chronic pain? He has Scheuermann's disease.
Dr__Gerard_Banez: This is a very difficult and common issue. One suggestion would be to engage your 18 year old in a discussion about how he would like his life to be, emphasizing those activities being restricted by the pain. The goal of any treatment for chronic pain is to restore normal activity and function. Use this discussion as a way to motivate him to pursue treatment to get his life back.
lizsomebody: What is the admission process to get into your program given that the patient would be coming from the other side of the world and prior consults would not be possible? We are not in the position to come and visit and then come back to participate in the program.
Dr__Gerard_Banez: We accept referrals from physicians or directly from patients, although a physician referral is ultimately required. The program coordinator manages those referrals. We have many out-of-state and some out-of-country referrals. Those families stay nearby during their child’s hospitalization. Oftentimes, the admission and insurance approval process can be completed prior to travel to the Clinic.
lizsomebody: What facilities are available for family members who would be accompanying the young person?
Dr__Gerard_Banez: Approximately 1/2 of the patients in our program live in Ohio. The remainder of the patients are from out-of-state or country. Most of those families stay at the Ronald McDonald House. Additionally, we have relationships with local hotels and temporary housing.
puzzled: Is under age 18 the cut-off for allowing patients into this program?
Dr__Gerard_Banez: We have seen kids from as young as 8 to as old as 22 years. The criteria for seeing older adolescents and young adults is based on their stage in life i.e., school attendance, place of residence. Many of the young adults that we see feel more comfortable in a pediatric setting versus an adult chronic pain program.
lizsomebody: Do you treat adolescent fibromyalgia? If so, could you describe a typical treatment program for one of these patients?
Dr__Gerard_Banez: Yes. We do. The program for all kids who are seen consists of a combination of medical subspecialty care, psychological and behavioral approaches, and physical, occupational, aquatic, and recreational therapies, as well as a school program. The specifics for any child are individually tailored but coordinated across the disciplines.
jec: After the intensive three-week program, is there a need for follow-up in Cleveland, or is care transferred back to local providers? If not at the completion of the intensive program, when is care typically transferred back to local providers? What type of provider team needs to be in place locally to continue support progress made in the program?
Dr__Gerard_Banez: Upon discharge from our program, we invite patients to return for a 30-day follow-up. For our local families, we have after-care, which includes outpatient PT/OT therapies, as well as psychological and medical follow-up. For all patients, a detailed discharge plan will accompany them for their local providers with local provider recommendations. We also work with local providers to coordinate appropriate care in the patient's community. The goal is to return the patient to typical function without unnecessary medical treatment.
jec: How do you work with the child’s school? Do kids usually go back to school immediately upon discharge from the intensive program?
Dr__Gerard_Banez: Patients in our program participate in our school program one to two hours daily. During that time, they work on material from their home school districts, either catching up on missed assignments or trying to stay on top of current work. This is done in coordination with home school staff. On the final week of their stay, patients and their parents participate with our team in a conference call with the home school to exchange information about the child's progress and to offer recommendations to facilitate a successful transition.
jec: What behavioral health approaches are most typically used?
Dr__Gerard_Banez: Kids in our program are seen by a psychologist in individual and family sessions several times a week. All patients in the program also participate three times per week in a mind-body skills group where they learn about different ways of handling their pain. Kids also have individualized functional plans to help them stay focused on their health and wellness goals
RA: Does Cleveland Clinic use mirror image therapy or hypnosis?
Dr__Gerard_Banez: Our PT and OT programs have used mirror therapy with several of our patients. As far as hypnosis, relaxation and mental imagery - which are the main components of hypnotherapy with children - are regularly taught.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Gerard Banez is now over. Thank you again Dr. Banez for taking the time to answer our questions about How to Manage Chronic Pain in Children and Adolescents.
Dr__Gerard_Banez: Thank you for your participation. Thanks to Kristen Buchannan, LISW, Critical Care Coordinator for the Pediatric Pain Program at Cleveland Clinic Children's Hospital, for providing her assistance in answering some of the submitted questions.
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