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Melanie's Story
Our 9 year old struggled with RND, a syndrome that is similar
to CRPS.
 Our
daughter, Melanie, was injured at a birthday party playing
musical chairs, (yes, musical chairs) on September 24, 2006.
She was 9 ½ years old. The chair was tipped causing
the leg of the chair to come down on the top of her foot.
Another child sat down heavily onto the chair.
Melanie had been an active baby and is an active child. She
dances and swims. She loves to ride bikes and can't sit through
a meal. She leaps through the house and does hand stands in
the middle of dinner. When she was injured, I had no idea
how serious it would become. Four days after the injury, x-rays
showed that the foot was not broken and she was diagnosed
with having tissue damage resulting in a collection of blood
in the foot. The pain was so bad that we gave her crutches.
If you know anything about RND*, you know that was a mistake,
but we hadn't heard of RND yet. One week later, when the foot
had not improved, we were referred to a delightful orthopedic
doctor. New x-rays still showed nothing and this time she
was given a boot to wear. She screamed in pain when I tried
to put the flaps of the boot over the top of her foot; hence,
she never wore the boot. About another week passed and we
ended up in the emergency room at Children's Hospital. A third
x-ray again showed nothing and we had our diagnosis of RND.
I began to do research on the internet and became very frightened.
An MRI confirmed the diagnosis and my heart sank.
By now, about a month had passed. Melanie began physical therapy,
several hours per weekat a facility a few minutes from our
home. The therapists were knowledgeable and kind, but it wasn't
enough. Meanwhile, Melanie saw Dr. Paul Rosen, a compassionate
and dedicated pediatric rheumatologist at Children's Hospital
in Pittsburgh, PA, which is close to home. He made arrangements
for Melanie to be evaluated at The Children's Institute (TCI),
just east of the city.
The next month was challenging as we waited for Melanie to
be admitted to TCI. It was difficult to fit physical therapy
into our weekly routines, and it didn't appear to make any
improvement anyway. Melanie became ill with stomach aches
due, at least in part, to lack of activity. It became harder
to stay on top of her school work and her girlfriends began
fighting for her attention arguing over who would carry her
backpack, for example. Melanie's social life came to a halt.
She could not participate in dance or swimming. There were
few friends whose houses I was comfortable with her visiting.
When friends came to our house, it didn't seem fair to them.
The weather was still nice, but Melanie couldn't ride bikes
or play ball. She could only do quiet, indoor activities.
During this time, Melanie could not wear shoes and she rarely
wore socks. Some nights even the bed sheets hurt her foot.
On November 20th, at lunchtime, Melanie's hand became afflicted
with the RND. By the time school was over, she was barely
able to move it. This made using her crutches much more difficult
and cumbersome. She had taken up the clarinet earlier in the
school year. Now this activity had also come to an end.
One week later, on November 27th, Melanie was thankfully and
finally admitted to TCI for intensive occupational and physical
therapy. Shortly after our arrival, the crutches were taken
from her and a shoe was put on the foot. Each day she had
five hours of intense physical and occupational therapy and
one hour of counseling. The latter consisted of pain and stress
management and coping skills. Shortly before we arrived for
visiting hours (daily from 4 to 9 p.m.), she called us in
tears. Not being allowed to spend the nights with Melanie
was horrible. I work part-time and some days I would sit in
my home office, shaking, and trying to concentrate. I learned
three things very quickly. #1) I needed to eat, #2) I needed
to sleep, and #3) Our youngest daughter needed to see Melanie
every day without exception.
Melanie was strong and brave and we got very few panic stricken
phone calls during the weeks she spent at TCI. We all needed
to be strong and this experience gave new meaning to the words,
"tough love." Soon we developed relationships with
the other families at TCI. The kids asked one another, "What's
wrong with you," while the adults approached the subject
with more finesse. We found strength, comfort, and companionship
in our new friends. My mother was our greatest source of comfort
and help during these weeks, and really the only one I wanted
to talk to. I was grateful for so many friends who kept us
in their thoughts.
Their generosity and their emails helped more than they probably
realize.
Melanie received passes on the weekends to come home for a
few hours each day. She couldn't wait to see the cat, but
unless we had a fun event planned, she didn't want much to
do with the rest of us. She seemed to need this time to de-stress
and play alone. This was next to impossible for our younger
daughter, age 6, to accept. She desperately wanted to play
with her big sister.
On December 7th we were advised that Melanie's gait was getting
worse, not better, and that if she continued walking the way
she was, complications would develop. We made some hard decisions
that day that led to improvement. The team of health care
professionals at TCI is creative and kindhearted. They do
their job, and they do it well.
Never did we imagine Melanie would remain at TCI during the
Christmas holiday. More than anything, I felt awful that her
winter break from school would be spent there. Melanie continued
to be courageous and maintain a positive attitude. Christmas
came and went. My husband was beginning to tire of the routine
of work all day and TCI all night. Our youngest daughter was
having bad dreams and asked if Melanie would ever come home.
We were all near our breaking point, especially Melanie.
Finally, on January 5th, Melanie came home. My emotions were
mixed. I was happy, but I was scared about what lay ahead.
Melanie would have an ambitious home exercise program added
to her already busy schedule. I was concerned about her transition
back to home, school, and activities. There were certain freedoms
she had at TCI that would not exist at home. She had been
receiving only one hour daily of school instruction in the
evenings at TCI. She had lost some of her athletic abilities
and there were some changes that would need to take place
while she continued to regain her strength and muscle tone.
Melanie immediately adapted to being at home, to the routine,
to the rules, and to playing with her sister. Her transition
back to school was totally smooth. Our experiences with her
tutor had been entirely positive and Melanie returned to her
4th grade classroom up-to-date with her schoolwork, ready
to learn, and move forward. She was rewarded with excellent
grades. The last hurdle was activities. This too went well.
In February, six weeks after discharge from TCI, Melanie competed
in three group numbers at a dance competition. She will participate
in a swim meet in March and a band concert in May. She describes
herself daily as "happy and content." She is once
again the healthy, active, easy-going child we knew five months
ago. She is, however, more mature, having seen and experienced
things that most of us never have to endure. What I learned
about her is that she is capable of incredible inner strength
and an overwhelmingly positive attitude. She's a great kid
and I love her very, very much!
*Note: Amplified Musculoskeletal Pain or Reflex Neurovascular
Dystrophy (RND), similar to CRPS, refers to the abnormal
reflex and neurovascular nerve.
For a parent's guide to RND, Click here. |
