Reflex sympathetic dystrophy in children is more common, and more debilitating, than many people think. Reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS), is a neurologic syndrome that causes severe pain.

What is Reflex Sympathetic Dystrophy?
RSD/CRPS begins with an injury or surgery, but the resulting pain is much more intense than would be expected from the initial trauma. Swelling, color changes, skin sensitivity, abnormal sweating and temperature changes are also characteristic of reflex sympathetic dystrophy, but the number of symptoms and severity of pain vary from patient to patient and day to day.

Pediatric RSD/CRPS
Many healthcare professionals are not aware of RSD/CRPS in children, although one study, led by Dr. Charles Berde, reports it is becoming a more frequent diagnosis. In wrist fractures alone, an injury that is common to children, the occurrence of accompanying reflex sympathetic dystrophy was between seven and 37 percent of the time. Berde, arguably the world’s preeminent researcher on pediatric RSD, noted that girls are five times as likely as boys to get the condition, which most often occurs just before puberty.

Reflex Sympathetic Dystrophy Diagnosis
RSD/CRPS can be treated with much greater success in children if diagnosed early, but that rarely happens. Usually, a diagnosis is only made when all other possibilities have been ruled out. One study found the average time between RSD symptoms and diagnosis was one year.

Left untreated, the symptoms often move to the corresponding limb on the other side of the body. Pain can worsen, and the flexor tendons may contract permanently, leaving limbs disfigured. Bone may soften as osteoporosis develops, while joints may become stiff and range of motion limited.

For children, this can mean setbacks in school. Researchers in Boston found that the average child had missed in excess of 40 days of school in the year following the initial trauma. However, after RSD treatment, that dropped remarkably to less than five missed days a year from pain.

Psychological Damage
Reflex Sympathetic Disorder is often misunderstood, or it may be dismissed altogether as psychosomatic. However, the pain is real and it’s very damaging for a child to be ignored or doubted. Although stress affects patients negatively, it often results when a child’s pain is not believed.

Parents Can Help
Because it is not well understood, even in the medical community, parents can print information about RSD/CRPS for school officials, including teachers. A meeting can be arranged between parents and educators with or without the child, and additional telephone conferences can take place as needed.

Accommodating the RSD/CRPS Child in School
The following suggestions for specific accommodations can help the child with reflex sympathetic dystrophy to succeed in school. Talk with your child’s teacher about which options might be particularly helpful. The Reflex Sympathetic Dystrophy Syndrome Association has more information. Here are some tips:

•    Avoid bumps and jostling.
•    Get ergonomic seating.
•    Tape record lectures instead of writing notes.
•    Use a heating pad.
•    Stay in from recess when weather is very cold.
•    Allow student to be excused five minutes early to avoid crowded hallways.
•    Allow student to take breaks when needed.
•    Have student helper assist with books, notes, etc.
•    Consult with parents for accommodations for field trips.
•    Schedule all classes on one level.
•    Allow extra time for homework and tests.