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Youth
 
Your Child is Diagnosed with CRPS
By Daria Charlesworth, RN, MS

It may be a mild sprain, a sports injury, a turned ankle, or a broken bone that doesn’t heal—all you know is your child is suffering with extraordinary pain that goes far beyond what anyone would expect from such an injury. If you are lucky, your pediatrician or orthopedist recognizes and diagnoses CRPS, and refers you to a pain management specialist, hopefully one who has experience with CRPS in children. If you are not as lucky, the physician may attribute the pain to malingering, attention seeking, or school avoidance; may prescribe analgesics that do little for the pain yet cause distressing side effects; or worst of all, may take a “wait and see” approach that delays a correct diagnosis by weeks, months, or possibly years.

When your child is diagnosed with CRPS, you must become a fierce advocate. The pain s/he is experiencing is real. The mechanism that generates it is still poorly understood, even among the most informed and up-to-date pain specialists. Many generalist physicians are not aware of the new research on neuropathic pain, yet claim to be prepared to treat CRPS. Be aware of this: in Nelson’s Textbook of Pediatrics, 16th edition, published in 2000 (Phila.:WB Saunders Co.), which is a 2,300+ page book, approximately eight inches of half-column text is devoted to CRPS, much of it under the sub-head “Psychosomatic Illnesses.” This gives us a clue as to what many physicians are learning about pediatric CRPS, even in year 2001. The footnote references are all from sources at least five years old, some much older. Neuropathic pain research has advanced by miles in the past five years, so a parent must insist on an up-to-date and informed physician as a starting point.

As a parent you must become an CRPS expert as well. All of us have “reinvented the wheel” in attempts to gather information to help our children, but here are some ideas to make that task easier:
  • When you come across good printed information on CRPS, get multiple copies for teachers, school nurses, school administrators, family and friends. Don’t forget the parents of your child’s friends. One of the best pamphlets for this purpose is the Fact Sheet on Reflex Sympathetic Dystrophy put out by the U.S. Department of Health and Human Services, National Institute of Neurological Disorders and Stroke (NIH Publication #96-4173). This is available through the RSDSA office. Highlight important features that relate to your child’s specific situation, and use it as a starting point for conversations with the important people in your child’s life.
  • Keep communication open with your child’s school. Be as clear as possible about what CRPS is and what it means for your child in the classroom. Teachers and students will be unaware that “bumping” in the hallway can be a major problem unless you (and your child) tell them.
  • Use the Internet to become as informed as possible, with the understanding that not everything on the Internet is true and verified information. You can begin with the RSDSA site.
  • Find support for yourselves as parents of a child with CRPS through?
  • Take cues from your child or teen as to whether s/he wants to participate in a support group. These can be scary and overwhelming for many kids. Communicating online with other children with CRPS can be much more helpful and developmentally appropriate.
  • Children and teens are dealing with independence issues at the same time they are dealing with CRPS, which makes parental intervention and support difficult to negotiate. Your child is suffering and is possibly withdrawn due to the pain s/he is experiencing, yet needs to own these symptoms and advocate on his/her own behalf. Allow and encourage your child to speak up with health care professionals, rather than communicating through you.
  • Keep a positive attitude. With appropriate medication, aggressive physical therapy, social and psychological support, and an up-to-date health care team, pediatric CRPS is often resolved, and the long-term prognosis is better than with adult onset CRPS.

RSDSA Review. Summer 2001. Volume 14, Issue 2.

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