Complex Regional Pain Syndrome in Children
Complex regional pain syndrome (CRPS) is a condition that involves chronic, excessive pain, usually in one limb (the arm, leg, hand or foot). Also sometimes called reflex sympathetic dystrophy, CRPS is rare, and in most cases, children may develop it after experiencing a trauma or injury, such as fractures, sprains, automobile accidents, limb immobilization/being in a cast, surgery, or small injuries such as bruises and cuts. With CRPS the child continues to experience pain even after the initial injury has healed.
In CRPS, the nervous system responds to an injury in a way that magnifies the effects of the injury. The cause of CRPS may be damage to the central and peripheral nervous systems, but it is unclear why one child may have CRPS after an injury, while another child with the same injury may not have CRPS. It can affect children of any age, though it is seen most often in adolescent girls.
One of the symptoms of CRPS is severe, prolonged pain in the affected limb. It may feel like a burning, shooting or stabbing pain, or a “pins and needles” or squeezing sensation. The pain may start out in the area of the original injury, but may spread to the rest of the limb and may become worse when the child tries to move the limb.
Children with CRPS will often experience increased sensitivity in the affected area, in which normal contact with the skin will feel very painful.
Our Approach to Treating Complex Regional Pain Syndrome
Because CRPS can affect children physically, mentally, and emotionally, our team of experts takes a holistic approach to treat the physical, psychological, and emotional aspects of your child’s condition. Research has shown that early diagnosis and treatment that includes an intensive exercise or rehabilitation program contributes to good outcomes for children and teenagers with CRPS (who generally have better outcomes than adults with CRPS). A team of pain specialists, psychologists, and occupational and physical therapists will create an individualized program to help patients regain their daily functions.
Physical and Occupational Therapy
Physical and occupational therapy focuses on developing an exercise program to keep the painful limb moving to improve blood flow and lessen the circulatory symptoms. Rehabilitation focuses on decreasing nerve sensitivity by teaching the patient techniques to slowly increase muscle use, and pacing their return to activity.
We work with your child on strength, endurance and functional activities to help them return to normal functioning. Rehabilitating the affected limb can help to prevent or reverse the secondary brain changes that are associated with chronic pain, such as nerve hypersensitivity. We work with your child to decrease nerve sensitivity in the affected limb so that normal contact with the skin feels less and less painful.
CRPS can be a painful and disabling condition associated with major changes in lifestyle and mood. Children with CRPS may develop depression, anxiety, or post-traumatic stress disorder, all of which heighten the perception of pain and make rehabilitation efforts more difficult. Our psychologist treats these concerns and teaches your child skills to reduce their fear of pain and help them develop coping strategies to manage pain.
We also focus on weaning your child off pain medicines as appropriate, especially opioids. Decisions to stop or start medications for anxiety or depression are made depending on your child’s individual condition.
Inpatient CRPS Rehabilitation Program
For patients with CRPS whose pain has persisted after attempting outpatient services or other treatments, we provide an inpatient CRPS rehabilitation program. This program is designed to be a brief intensive inpatient program that focuses on returning children with CRPS back to normal functioning. The program consists of a structured daily schedule in which patients see providers from multiple areas for different aspects of their care and return to functioning. Patients are referred for this program after assessment by the chronic pain management team at Johns Hopkins All Children's.
Patients with CRPS may not move their limbs due to intense pain and fear of pain returning. As part of the inpatient program, we place a catheter to numb the affected area under general anesthesia on the first day of the program. The patient receives a continuous infusion of local anesthetic to keep the extremity numbed. The catheter is often removed after four to five days. This approach allows us to numb pain signals, allowing your child to use their affected limb and take part in rehabilitative therapies without experiencing their CRPS pain.
Your child's lack of pain response then allows us to provide them with intensive physical therapy (PT), occupational therapy (OT) and psychology. PT and OT help your child build strength and endurance in the limb they have been avoiding, which in turn reverses the nerve hypersensitivity they have been experiencing.
Psychology focuses on teaching relaxation and cognitive behavioral therapy skills to address self-regulation, mood, and fear of pain and of using the affected limb when the anesthesia is withdrawn.
Our programs goals for your child include:
- Reducing their need for or use of opioids or other pain medications
- Being able to walk independently without a walker or wheelchair
- Improved ability to take part in activities at home or at school
- Increased ability to take part in physical activity
- Decreased fear of pain, anxiety, and depressive symptoms
- Decreased pain
What to Expect
Most patients will spend about 7 days in the inpatient program, though it can last from 5-14 days depending on progress, pain and insurance.
While your child's CRPS can fully improve, pain that has lasted for months typically requires a long-term solution. While your child may still experience some pain and difficulty in daily activity after this program, patients typically see a reduction in pain, and a significant improvement in their overall functioning, physical activity, and thoughts or fears related to pain after completing this program.
During the program, your child will receive a daily schedule tailored to the needs of their individual treatment plan. The program does not involve group therapies, so all care providers will work with your child one-on-one.
Caregiver visits are scheduled from 5 to 8 p.m. We want patients to focus on rehabilitation throughout the day with minimal distractions. Additionally, we want to provide patients adequate time for relaxation, rehabilitative skills practice, and sleep routine at night. During the weekend of the patient’s stay, caregivers are allowed to and encouraged to spend the entire weekend with the patient. Therapy resources are reduced over the weekend so we teach the parents the PT/OT exercises to help the patients practice during down time. This is helpful for after discharge as well.
Each day your child will work with services including occupational therapy, physical therapy, psychology, music therapy and Child Life. Patients will also have time set aside to independently practice their PT/OT and psychology exercises, as well as complete their school work.
After your child completes the inpatient program, he or she will have a follow-up appointment with the chronic pain management clinic within two weeks. Your child will also continue to see OT/PT and psychology to maintain the gains they made during the program. Our team will help to coordinate any necessary referrals at discharge.
For more information or to make an appointment, give us a call at the phone number below. We serve families in the greater Tampa Bay area and beyond.
Read inspiring stories about our patients.
After a Long Journey with Pain, Brielle Dives into Life
Brielle experienced a two-year journey with pain that dramatically altered her life, and ultimately led her more than a thousand miles from home to Johns Hopkins All Children’s Hospital for answers. An intensive week-long in-patient program helped get Brielle, a swimmer, back in the water.
After suffering from years of debilitating pain, a journey that would ultimately lead her to Johns Hopkins All Children’s Hospital, 13-year-old Adelaide has finally found her footing again.
Taking an Active Approach to Pain Management
When leg casts and physical therapy couldn’t help Rebecca recover from pain from an injured ankle, her parents turned to the Johns Hopkins All Children’s Pain Management Clinic.