CRPS: 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 CRPS, congratulations;
it is not an easy road to travel.
Our 12-year-old daughter, Jessica, was diagnosed with CRPS
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 CRPS 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 CRPS and more progressive in truly
effective treatment.
Editor's note: Currently, Dr. Sherrry is working at Children's
Hopspital in Philadelphia.
You may purchase a DVD about his treatment program by visiting
www.childhoodrnd.org
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