RSDSA :: youth

Youth

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 9½ 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.

A Parent's Guide to RND