One day in Hebrew School, January 29, 2008 to be exact, when I was in 5th grade, my foot started to hurt. I told my parents when I got home. In typical Chinn-home fashion, they ignored me. But the pain was still bothering me days later. My mother eventually took me to see Dr. Zamarin, an orthopedist. The X-ray was negative, but the part of my foot that hurt is near a joint that is often sprained by dancers like me. I was able to use a walking boot to get around. Weeks later, I was feeling even more pain and it hurt too much to put the boot on. I couldn’t even put my foot on the floor and I couldn’t stand on it at all. The pain was burning, throbbing, and terrible. My foot hurt to the slightest touch. I couldn’t put on shoes or sleep with my foot under the covers. I hopped around until we borrowed some crutches. We went back to Dr. Zamarin who diagnosed a pain syndrome and told me to start physical therapy. My mom started researching Pain Syndromes and RSD, which no one thought I had because it comes with another set of symptoms like sweaty, shiny skin. Then, when we went to the physical therapist, he pointed out that my foot was swollen, blue, and cold to the touch. This made my parents really nervous. For those who think pain syndromes are all in your head, this was what convinced my Dad that something was seriously wrong. My parents found a website for an organization called RSDSA. They helped us find a doctor in our area who specialized in children with RSD and CRPS. It turned out my friend and pediatrician, Dr. Mattone, knew the same doctor at CHOP, Dr. David Sherry, and so we were able to get in to see him pretty soon. He confirmed my diagnosis. He made me do a lot of really hard painful things, like wear a shoe. He wouldn't let me use my crutches either. Dr, Sherry said I had to resume all of my normal activities while I was doing physical therapy. I went back to dance class but it was really difficult and to my field hockey team but it was hard to run. Dr. Sherry runs a program at CHOP for RND where kids have to do 5-6 hours of physical therapy a day, but the waiting list is about a yearlong. I continued to see a physical therapist 3 times a week, but my parents did therapy with me 3-4 hours a day to help me get better. After 8 weeks of physical therapy, I was functioning and the pain was less, but it took even longer to fully go away. Before that happened, it went into my other foot too. By the start of 6th grade I thought I was done with my RSD. I was a normal, functioning, kid who participated in normal activities. I danced and played field hockey for the school team. I occasionally would have pain in my feet but nothing that could slow me down. This was what my life was like until the start of 9th grade. When freshman year started my pain came back. I had a bad flare and along with pain in both of my feet it moved to my back and stomach. I immediately started physical therapy and met with Dr. Sherry who told me to continue everything I was doing before the pain, with one hour of physical therapy a day. He also recommended that I meet with a therapist. I followed all of his instructions until my RSD spread to my arms, shoulders, and neck. I went back to see him again and was put on the waiting list for the intense program. On May 14th 2012 I entered the program. It was A LOT of hard work with long exhausting days. I was a day hospital patient so that meant I had to get u at 6 to drive into town for 8 hours of therapy every day but then I would go home to sleep. My schedule included two hours of physical therapy, two hours of occupational therapy, one hour of pool therapy, and two hours of either music art or talk time. I was in the program for four weeks and discharged on June 8th. Although my pain did not go away while I was in the program, Dr. Sherry and his team helped me become stronger and handle my pain better. A few months out of the program I still have pain but I learned how to manage it and to push myself even on my worst days.
I met a lot of great people at CHOP. I had great physical therapists, occupational therapists, psychologists, and nurse practitioners. I also got to see Dr. Bernal, and Dr. Sherry. Besides all of these people I got to get to become friends with a lot of great kids who also have RSD. Together we will all be running a 5K. We are all raising money for the Childhood RND Educational Foundation, which was formed to educate health professionals and the lay population about the characteristics and treatment.
Join the Conversation
PO BOX 7762
WILMINGTON, DE 19803
The Childhood RND Educational Foundation, Inc, a 501(c)(3) non-profit organization dedicated to educating health professionals and families.
for this Cause
Anyone can set up a fundraiser for this charity. It's quick. It's easy.
And it's free!