Rehabilitation for Amplified Pain Syndromes (RAPS) Program Children’s Mercy Hospitals & Clinics Kansas City, Missouri

FREQUENTLY ASKED QUESTIONS

GENERAL QUESTIONS: Q: Where do I drop off my child in the morning? A: On the FIRST morning of the program: Please arrive at the Physical Therapy Department (1st floor) at Children’s Mercy Hospital downtown location (2401 Gillham Road, Kansas City, MO 64108) promptly at 7:30 a.m. Allow time to check in through security and be prepared to present a valid form of identification. On the first day you and your child will meet with the medical team for evaluation prior to starting the program. This may take approximately 1-2 hours. On subsequent mornings (Monday through Thursday): Please drop your child off promptly at 7:30 a.m. at the circle drive in the front of the hospital. Patients will be greeted by a RAPS team member and escorted to PT/OT to register and check vital signs. They will then proceed to the locker room to change for pool therapy (if applicable). On Friday mornings: Please drop your child off promptly at 7:50 a.m. at the Don Chisholm Learning Center (610 E. 22nd St, Kansas City, MO 64108; 1st floor), one block north of the main hospital. Typically, there will be no pool therapy on Fridays, and patients will participate in a different activity.

Q: Where do I pick up my child each day? A: Your child will spend the majority of the day at the Don Chisholm Learning Center, Center for Children’s Healthy Lifestyles and Nutrition (610 E. 22nd St, Kansas City, MO 64108; 1st floor), one block north of the main hospital. If there is inclement weather (i.e. snow, ice), all therapies may be performed at the main hospital campus. If this is the case, we will contact you to let you know where to pick up your child; please make sure RAPS staff (i.e. Amy Wagner) has accurate contact information for you during the day. Please arrive to pick up your child promptly at 4:30 p.m.

Q: What is the best way to contact the RAPS Team during the program? A: There is a central e-mail you may use to ask questions or notify us of any concerns. [email protected] will be checked daily by one of the medical team members and we will respond via email or telephone.

Q: Why can't parents be present for therapy? A: During the day, we want your child to be able to concentrate on getting better. Often when parents are present during therapy, patients have a more difficult time pushing through activities. In addition to discussing your child’s progress with you, we may intermittently video your child’s activities to share.

Q: Is lunch supplied or does my child need to bring lunch? A: Lunch is provided as part of their day at no additional cost.

Q: Can I eat lunch with my child? Parents are not allowed at lunchtime so that patients can have lunch with their peers, which will more closely resemble a school day and assist with their transition back to school. Also, some therapy groups will occur during lunchtime.

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Q: How long will the program be? A: The average program duration is 2-4 weeks, and is individualized for each patient.

Q: My child woke up sick. Should I still bring him/her in? A: Unless your child has a fever over 101 F, they should participate in the program. After seeing your child, if we feel he/she is too ill or contagious to participate for the day, we will send them home. In many cases, symptoms that mimic illness such as dizziness, headache, nausea, and diarrhea are associated with amplified pain syndromes, and it is important for your child to work through these symptoms. This will help train the body to decrease and normalize these symptoms prior to returning to school.

Q: What should my child do in the evening? A: Your child should stay active throughout the evening. We encourage you to go out and see the city, etc, in the evenings if staying at Ronald McDonald house or other places in the city. If staying at home, patients should keep up with peers and other activities they typically do in the evening. Patients should go to bed at a normal time. They should not go to bed early during the program to “rest up” for the next day.

Q: What meetings do I need to be available to attend during my child’s treatment?

A: Although it may vary, please expect to be present for the following: • Admission Day: Meet with the admit nursing staff and with the attending physician and/or nurse practitioner (in the morning for approximately 60 minutes) • Parent Group: This is run by the team psychologist for parents of current patients. Parent Group is held on Tuesdays and Fridays from 8:00 - 10:00 a.m at the Don Chisholm Center. • Psychology: The team psychologist will schedule a time to share results of psychological assessment conducted during the program. • Social Work: Upon admission or early on in child’s treatment to coordinate 3

• • • •

school-based issues (based on need/whether school is in session) and housing needs Nurse Practitioner: Will call families weekly to update on discharge plans and to update on progress; calls/meetings as needed/requested. Physician: Calls/meetings as needed/requested. Progress/Discharge Planning: We will have a multidisciplinary team meeting to meet with you prior to RAPS Program discharge to discuss your child’s overall progress and aftercare plans. Discharge Day: If your child is under 18 years old, you will need to be available to complete discharge paperwork.

PHYSICAL/OCCUPATIONAL THERAPY:

Q: What are some of the exercises that my child will do? A: The exercises are individualized according to the needs of each child. There are some that are generally used with most children and many are timed. Patients are expected to beat their times daily until they reach their maximum speed. There are also aerobic and endurance exercises and various forms of desensitization (rubbing, vibration, and patting).

Q: Will my child get pool therapy every day? A: Pool therapy is an important part of the treatment. How much pool therapy each patient gets is individualized depending on many factors. Those factors include, but are not limited to, presence/absence of allodynia, muscle soreness, sport specific training for swimmers, performance during land therapy and sometimes in conjunction with behavioral programs. Patients should bring their swimsuit each day and be prepared for the possibility of pool therapy.

Q: Can the pain get worse or spread? A: Yes. In addition to muscle soreness, it is common for the APS pain to get worse once we start doing a lot of exercises using that body part. The APS pain can also

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spread to different locations. This is generally regarded as a good sign as nerves leading to the site of amplified pain begin to connect and it occurs frequently as the APS pain starts to improve.

Q: My child says the therapists yell at them – What is that all about? A: The physical and occupational therapists have worked with many children with APS and generally have a good idea of what a child can and cannot do. Frequently the child will think that the goals are too hard. The therapists have to be firm and focused but do not yell at the child. They will act as cheerleaders to encourage them and that can be interpreted as yelling, (i.e. “Go, go, go – you can do this- go faster! You can beat your time!). Everyone on the team is dedicated to providing the best care in a sensitive and caring way. Sometimes children procrastinate by avoiding normal form or function and need verbal reminders to correct their form or get started on the next activity. Some children may interpret this as chastisement. Our entire team works closely with your child to support them as they progress through each week of the program.

Q: What do I do if my child has a lot of pain at night after exercising in the program? A: They may be sore in the evening after completing exercise, but they should continue to stay active in the evening. Resting for a few minutes right after the program is fine, but then activity is best. They should also stretch and/or take a hot shower or bath in order to keep muscles from tightening up.

Q: What should my child do on the weekend if they are in the RAPS Program? A: They will have a home exercise program to perform twice each day. Also, we recommend they do something fun with peers. We strongly encourage patients to remain active over the weekend to foster continued progress over the coming week.

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Q: Should I remind them to do their home exercise program? A: In most cases, no. We encourage the patient to take ownership of their recovery, which includes performing their home exercise program independently.

Behavioral Health:

Q: How can/does stress make pain worse? A: Many people keep painful feelings (such as sadness, worry, feeling overwhelmed) inside, and these feelings need a way to be expressed. Sometimes stress and emotions are expressed as physical symptoms, including pain. Stress comes in a variety of forms. Sometimes stress is a “big event”, sometimes it comes from difficulties in school or in the family, and sometimes it comes from managing many different (often enjoyable) activities and we may not even be aware that we are stressed. Physiologically, the body does not care where stress comes from, and reacts the same way. Based on an evolutionary principle, when faced with stress, our bodies prepare for fight, flight, or just freeze, as a way to deal with the stress. This response developed as a way to avoid physical threats (e.g., a tiger chasing you), and allows your body to survive against the threat. Unfortunately, our bodies cannot tell the difference between physical threats, such as a tiger, psychological threats, such as an important test at school, and even exciting events, like going to a party, performance, or competition. When we sense a threat, several changes occur in the body, including an increase in heart rate, increase in breathing rate, changes in hormones, tightening of muscles, increased blood flow to muscles and away from skin, increased perspiration, hypervigilence to the environment, and others. These responses enable us to survive in the immediate future when faced with threats, enabling our muscles to be stronger, our bodies to cool and be slippery, and our minds to be more aware of potential dangers, but leave us vulnerable to other threats, such as pain due to muscle tightening, increased blood pressure, and imbalances in hormone levels. Pain can be a cause of stress and stress can cause pain to become worse or to persist. Dealing with stress helps break this cycle, and decreases the impact of stress on pain.

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Q: What is “Talk Time”? A: Talk time refers to individual and group-based times set aside to talk about a variety of topics relevant to pain, stress, coping, school, and daily life. Group topics may include identifying and coping with emotions, setting goals, dealing with bullies, perfectionism, and so on. Individual talk time topics are based on the needs and interests of each patient.

Q: How does talking make pain better? A: Talking can make pain better in several ways. First, talking provides a way to understand how stress and pain are related. Exploration of stressors and discussion of ways to help identify and cope with stress can help decrease the impact of stress on pain. Learning coping mechanisms (i.e., deep breathing, visualization, distraction, and other cognitive strategies) that one can utilize when experiencing stress can help decrease pain. Also, understanding how one’s own mind tends to cope with stress and with difficult thoughts can lead to improved coping and a more flexible approach to a variety of difficult situations that may arise in day-to-day life.

Q: My child does well in everything... what could he/she be stressed about? A: Stress does not only come from “negative” experiences or situations. Some of the most stressful times in our lives occur when we are happy and doing well, and often occur during times of change. Many people also experience stress by trying to manage several different activities at one time. This can be even more challenging when you like and/or are good at all of these activities and have difficulty prioritizing these areas of your life. What ends up happening for many people is that we are very busy enjoying so many things and feel pressure to continue succeeding at each. This can be stressful, especially for people who have tendencies toward perfectionism.

Q: Why do you need to talk to their outside psychologist or counselor? A: It is important for us to work in conjunction with other professionals, including outside psychologists and counselors treating your child so that messages are consistent and recommendations are feasible and able to be supported after leaving the program. We also have a very limited amount of time to learn a lot about your child 7

and your family, so being able to consult with other professionals who have had contact with you can be very helpful for us to be able to provide you with the best care. It is also helpful for us to consult with other professionals to share our expertise and to make recommendations for discharge in order to help these professionals best support continued healing.

Q: This is my child’s pain…Why are you recommending family therapy? A: As part of normal development, children grow and become increasingly independent from their parents and other family members. Adolescence becomes a time of experimentation and rebellion, much of which is normal and healthy. Parents of medically ill children (e.g. children in pain) may become more and more protective as the children grow, which can lead to struggles with individuation and independence. Changes in relationships with siblings and parents, and in relationships between parents, can be additional sources of stress that may serve a role in causing and/or maintaining pain. Family therapy is often recommended to further assess family dynamics and relationships and help provide guidance about how to help the family function in such a way that all family members experience less tension. Because of the way that stress impacts the body, a reduction of family stress can help decrease children’s pain.

Q: If I don’t ask about my child’s pain, s/he will think I don’t care. How is that helpful? A: Research shows that attention to pain (e.g. asking how your child is feeling, asking what the pain feels like, saying you hope your child feels better) actually makes pain worse. Instead, pain tends to decrease when parents respond to children by distracting their attention to other things (e.g. activities, discussion about things other than pain). It is important to let your child know that you care about him or her and that you want your child to feel better, but that you will no longer ask about or respond to complaints of pain because you know it is in your child’s best interest to help him or her refocus on something other than pain.

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Q: What is parent group and why is this important to attend? A: Parents of children with chronic pain have an important role in helping their children to get better. Some of this is active, like learning how to encourage and coach your child. However, the harder part may be less active, like dealing with your own emotions and fears around your child’s pain and rehabilitation. Parent group serves as a place where parents can support and encourage each other, while also learning to deal with their difficult roles in their child’s recovery. Parent group is an essential and required part of the RAPS program.

Self-Regulation and Creative Arts Therapy:

Q: What is music therapy? A: Music therapy is an established healthcare profession that uses music as a tool to address physical, emotional, cognitive, and social needs of individuals of all ages. Music therapy intervention aims to promote wellness, manage stress, alleviate pain, facilitate expression, enhance self-esteem, increase socialization, and promote physical rehabilitation.

Q: What happens in music therapy? A: Each child in the RAPS Program is provided with music therapy 1-2 times weekly. The focus lies on facilitating methods of coping and promoting self-expression. Methods of coping include music-assisted relaxation techniques to promote relaxation and mind/body connection through deep breathing, music and imagery. Relaxation and deep breathing with music may also help with those having difficulty sleeping. Selfexpression is facilitated via songwriting, music production, lyric discussion and music improvisation. This proves to be a safe and non-threatening way for the child to express and explore his or her feelings and thoughts. The music therapist incorporates functional tasks such as playing of musical instruments to encourage improved extremity function when needed.

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Q: What is the role of yoga in the program? A: Yoga encourages focused attention on breath and body awareness. Increasing body awareness is the first step in developing mindfulness; purposefully noticing the present moment without judgment. As we practice becoming more mindful, we learn to appreciate our bodies in a positive, healthy way. This is especially important when we have experienced that our bodies are a source of pain or disability. Further, yoga helps to develop important skills to reduce the physical and emotional effects of stress. Q: What is self-regulation? A: Self-regulation refers to a number of strategies that regulate activity in the autonomic nervous system. This system is highly responsive to stress, and tends to be dysregulated in people with chronic pain. Regular practice of self-regulation strategies can help people respond to stress more normally, and recover from stressful episodes more quickly and completely. Specific strategies used in the program may include breathing strategies, progressive muscle relaxation, guided imagery, and others.

Education – Returning to School:

Q: Will my child receive school or tutoring while in the program? A: No, your child will not receive school services while in the program because of the intensity of the therapy schedule.

Q: How ill my child make-up school assignments that they missed while participating in the program? A: It is important that you contact your child’s school as soon as you are given an admission date and request that your child’s teachers gather assignments for several weeks of work. Your child will be able to work on those assignments during portions of “flex time”, over the weekends, and in the evenings.

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Q: Why does the program need to contact my child’s school? A: It is important that we plan your child’s school re-entry with staff at the school. This will ensure an optimal school re-entry plan. Upon admission, you will meet with the Social Worker to discuss any school related concerns you may have, as well as the school re-entry plan. At that time, you will be asked to sign release forms allowing communication between the hospital and your child’s school.

Q: Why do I need to sign HIPAA releases for school information? A: The team may review your child’s school records to determine if there are learning issues that require further attention. Additionally, the signed HIPAA allow the Social Worker to collaborate with the school team to plan school re-entry.

Q: Why can’t my child have physical accommodations when they return to school? A: It is our goal that at the end of the program for your child to be fully functional. This includes being able to get around their entire environment, including school, without limitations due to pain.

Q: What are academic accommodations? A: Academic accommodations are adjustments that are made in your child’s class work and homework. Some typical accommodations include reducing assignments in size and extending assignment due dates. These accommodations may be recommended to help children who are behind catch up, or to address any learning issues that may be identified during the program.

Q: How can I make sure my child receives academic accommodations when they return to school? A: The Social Worker will contact the school and verbally request these accommodations. This conversation will be followed up with a letter which is sent to whoever the parent decides is the best advocate for their child. 11

Q: Why can’t my child remain on homebound instruction following discharge from the program? A: It is vital that your child return to school on a fulltime basis. This is a key goal of the program. A return to school on a full-time basis allows your child to maintain all of the functional gains that have been achieved as a result of participation in the program.

Discharge:

Q: When will I find out about progress/discharge? A: Although the team members are in daily contact with each other, on Friday mornings they meet formally to discuss the progress of the patients and their plan of care. Our Nurse Practitioner calls families after our Friday team meeting to review the week’s progress, plan of care and discharge plans.

Q: What if my child or I don’t feel as though they are ready for discharge when the team thinks they are? A: It is not uncommon for parents and patients to be nervous around discharge, especially if they are not pain free, however, sometimes discharge from the program is essential to continuing to improve. For some patients, many more gains are seen once they return to their normal activities. Our decision to discharge a patient from the program is not entered into lightly, and many factors are weighed and discussed by the team prior to determining the date.

Q: When will the pain go away? A: There are 3 parts of the program: Part 1 is the intense RAPS Program (5-hour/day physical and occupational therapy, Talk Time, and self-regulation, etc). Most children regain their function and will start to have a decrease in their pain, and in some, the pain will go away. For most children the reduction in pain is gradual. Part 2 of the program is going home, maintaining normal function (going to school, chores, sports, 12

social activities), doing a home exercise program (about 45 minutes/day) and, for most, going to counseling. It is during the second part that the pain will go away for most children. Part 3 is getting to the point that they do not need to do a home exercise program but just have normal activities without having any pain.

Q: What is expected of my child once they are discharged from the program? A: At time of discharge, patients will be provided with recommendations specific to their needs. In general, they receive a home exercise program similar to their weekend program and are expected to return to school full time without accommodations. It is also generally recommended that patients return to previous sports and or clubs they enjoy. Many patients will also be recommended to continue in individual counseling.

Q: Will my child’s amplified pain syndrome (APS) ever reoccur? A: Each patient is different and so is his or her recovery. An important part of the program is teaching patients the skills they need to be able to manage their own health and overall wellbeing. This includes what they should do if they should ever think their APS is reoccurring. Half of the children who have recurrence say that the pain feels the same and half say that if feels different and cannot be APS. Important clues are when the pain seems to hurt too much for the injury or illness, is prolonged past the time that normal healing should have occurred, or the skin is tender to light touch. APS pain causes more disability than one would normally expect. If any of these clues occur, your child should start to exercise, use that part of the body in a normal fashion, desensitize if it is tender to touch, and think about what stresses are going on in his or her life.

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Rehabilitation for Amplified Pain Syndromes (RAPS) Program

Cara Hoffart, DO Pediatric Rheumatologist Medical Director, RAPS Program

Dustin Wallace, Ph.D Clinical Psychologist Director of Behavioral Health, RAPS Program

Beth Woodford, APRN Pediatric Nurse Practitioner Registered Yoga Teacher

Amy Wagner Program Coordinator

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