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Your Child is Diagnosed With RSD
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 RSDS/CRPS, and refers you to a pain management
specialist, hopefully one who has experience with RSD 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 RSD, 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 RSD. 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 RSD, much of it under the sub-head “Psychosomatic Illnesses.”
This gives us a clue as to what many physicians are learning
about pediatric RSD, 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 RSD
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 RSD, 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
Syndrome 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 RSD 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 (rsds.org).
- 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 RSD can be much more helpful and developmentally
appropriate
- Children and teens are dealing
with independence issues at the same time they are
dealing with RSD, 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 RSD is often resolved,
and the long-term prognosis is better than with adult
onset RSD
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