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RSD—A Parent’s
Perspective
By Kris Filon
If you are lucky or persistent enough
to have reached the point of your child being diagnosed with
RSD, congratulations; it is not an easy road to travel.
Our 12-year-old daughter, Jessica,
was diagnosed with RSD in November 2001. Her condition developed
as the result of a leg injury one month earlier. X-rays and
bone scan did not show any structural damage, however, her
pain level continued to increase after the injury rather than
to subside. She was unable to bear weight on her leg and ended
up spending over four months on crutches and in a wheelchair.
Due to the negative test results, her increased pain and other
symptoms, and our commitment to push through doctor appointments
and insurance company hassles, we went to Dr. Ronald Hadden,
a pediatric neurologist, in an effort to determine if there
was some type of nerve damage. He was well versed in RSD and
provided us with a diagnosis and initial treatment plan.
We began treatment with pain medication,
a TENS unit and physical therapy three days per week. However,
as the weeks progressed, our daughter’s pain level increased.
As we became more educated regarding the condition, our level
of concern also increased on how slow her progress was. We
became aware of the progressive stages of the condition, the
increased risks of permanent physical damage and reduced quality
of life, and how critical it was to get her walking again.
Because Jessica was making minimal
progress in local physical therapy we were told of a comprehensive,
multifaceted pediatric pain clinic at Seattle Children’s Hospital.
We were convinced Jessica needed to be treated there when
the neurologist said, “If it was my daughter, I’d fight to
get her there.” We did end up obtaining insurance company
approval to have her treated in Seattle.
Jessica and I lived for four and one
half weeks in Seattle (our home is in Arizona). She spent
the first week as an in-patient and the remaining time as
my roommate in hospital-sponsored family housing. Her treatment
each day included six hours of intense therapy. On the first
day of her treatment, she was using only one crutch, by day
two she was walking (Her crutches were kept under lock and
key until we flew home.). The intensity of the program was
a challenge for both Jessica and us. The pain levels she has
experienced have been significant, and although her pain is
not gone, she has her function and her quality of life back.
She is committed to a daily exercise program and we have high
hopes that her pain will continue to diminish.
The level of professionalism, the commitment
to the children and the effectiveness of the clinic in Seattle
are top notch. Dr. David Sherry is the head of the Rheumatology
Department and manages the clinic that has successfully treated
hundreds of children from all over the country (there is typically
a waiting list for this treatment program). I would only hope
that more of the medical community around the country would
become better versed in RSD and more progressive in truly
effective treatment. |
