Dr Linda Helps - Katie is our friend who for three years has been battling chronic pain associated with RSD (Reflex Sympathetic Dystrophy). Katie, at the age of ten, is one of an estimated 6 million people who suffer from this complex multi-symptom pain syndrome. Children who face chronic illness have to endure stress few of us ever experience. Prayer is what keeps Katie’s spirit strong. Here’s a letter from Katie.

RSD AND ME by Katie

It had been a great evening. Third grade had just started. My friends and I were laughing and walking home from the Autumn Festival. I was chasing my dad with a big balloon hammer I’d won. All of a sudden, I slipped on some wet grass. I had mud in my mouth and twisted my left foot. When we got home, my mom put some ice on it. My foot felt a little better the next day so I went to the roller skating party. After that, the pain in my foot was really bad.

One doctor said I had a sprain. When the pain didn’t go away, we saw another doctor, who said my foot might have a hairline fracture. He put a big, black Velcro cast on it. When that didn’t help, I received a regular cast, and still the pain was getting worse. Then I was diagnosed with RSD. The major symptom of RSD is burning pain. I had to start physical therapy and pool therapy to make my foot stronger. The first time I walked across the short end of the pool in the water, I cried because it hurt so much. My feet were different colors and different temperatures, especially after exercise. It was really weird!

My mom and dad did a lot of research on the Internet. We asked the doctors lots of questions to try and understand this rare disease. We found out there is no cure for RSD, but it can go into remission. I got a TENS unit, which provided electrical stimulation to my foot to help manage the pain. I took Tylenol 3 every four hours for the pain and lots of other medications—Clonodine, Neuontin, and Prilosec—and had an ulcer too. The pain was still pretty bad, but I was able to go to school. I couldn’t go to gym or play outside at recess. I was sleepy from the medications all the time and had trouble sleeping at night. These are also part of having RSD. I missed the things I used to be able to do, like playing tag on the playground equipment and playing basketball. I had to use a wheelchair to go longer distances and crutches for a while.

My leg got stronger, even with the pain, and we went to Wisconsin for vacation. I bumped my right foot on the side of a boat. By the next day we knew the RSD had spread to my other foot. Once you have RSD, it’s likely to move into other parts of your body, starting with the limbs. Children usually get RSD from minor injury like surgery or a car accident.

I could hardly walk because I had so much pain in both feet. I saw a pain management doctor, who administered a series of twelve nerve blocks in my spine. First I had to get an IV, and then I was put to sleep. The doctor injected some medicine into my spine. The blocks helped for only a few hours, and then the pain would come back. I went to pool therapy, used a cane, and took my medicine. Pain is always rated on a scale from 0 to 10. Ten is the worst pain you can imagine, and 0 is no pain at all. My pain stayed at a 6 to 8.

My doctor suggested we try an experimental treatment for RSD. It was a hyperbaric oxygen chamber or HBO. Every day for a few months, I put on hospital scrubs, and we drove to the HBO chamber. It looked like a submarine with fish painted outside. I was the youngest person there. Once the chamber was sealed, I stayed inside for one and a half hours with a big black oxygen mask on my face. My feet started to feel better.

My pain kept going down. Now my pain is a 1 to a 4. I still have to go to pool therapy, and my feet still hurt, but I can do more things than before. I was able to keep up with my schoolwork even though I missed the entire third quarter of fourth grade.

I am so thankful for all the people who prayed for me. The doctors and nurses I’ve met say they’re surprised at how well I’ve handled all of this. My mom and I tell them it’s because of everyone’s prayers and because I know God loves me.

Katie covets your prayers. Her battle is not over. If you would like to email Katie a word of encouragement, do so at drlinda@silaspartners.com

For more information about RSD go to http://www.rsdnet.org