Vinton, Virginia

My son, Layne, suffered from RSD in his leg, ankle, and foot when he was eight years old and in second grade. He ran into another child during gym class, flipped and hit his foot and ankle on the concrete wall, thus, causing the damage to his nervous system. It took over three months before he was diagnosed at UVA hospital in Charlotte, VA. The diagnosis came, long after being told by the local medical profession and school personnel that he was “faking it to gain attention” all because they did not have any knowledge of Reflex Sympathetic Dystrophy.

Eventually, the RSD spread from around his ankle to his toes and his knee. Layne did not walk for over nine months, ultimately, developing osteoporosis in his leg. His orthopedic doctor considered amputation. Layne could not bare to have anything touch his leg and foot. He could not even wear a sock or have a sheet touch it. At night, he slept with his foot and leg hanging over the edge of his bed. He felt pain in his sleep. Layne said the pain felt “like ten thousand bees had stung it.”

As suggested by the orthopedic doctor at UVA, Layne participated in daily physical therapy sessions. Weekly, he visited with his local orthopedic doctor and a counselor (to deal with the chronic pain condition). He, occasionally, visited a pain therapy doctor (who could not prescribe any medication because Layne was too young). We administered one dosage of Ibuprofen, once daily, M-F, before his physical therapy sessions. This allowed him to try participating in pt, but did not ease his pain. The Ibuprofen ended up eating the lining of his stomach which caused a whole other host of problems.

Because the accident occurred on school property, it is my firm belief that the guidance counselor and his second grade teacher were in denial of the problem and caused us great emotional turmoil, even going to the point of asking us to transfer Layne to a “handicap accessible school” one week before the end of the school year. Daily, the second grade teacher took his walker from him and placed it on the wall farthest from his desk. Daily, the guidance counselor and teacher announced to me and to Layne that they believed he was faking it. Three days before the end of school, I found out that Layne was being left alone in the classroom with no supervision, up to five times per day, every day, with the lights turned out!

Layne went from being a straight “A”, well loved student who had, previously, participated in the school’s gifted program to a child who, in their eyes, “was making it all up to gain attention”... even though they had five different medical determinations that he truly did have Reflex Sympathetic Dystrophy. Before the accident, he loved school. A few months later, the mistreatment by the school personnel made him dread it!

Months after his diagnosis, a T.E.N.S. unit was given to Layne to use at his discretion. We happened upon the suggestion through a chance meeting with an adult diagnosed with RSD. A few months later there was some improvement in his condition. Eventually he was able to take few steps. The day he was able to take a few steps up the staircase, I knew we were on our way to recovery!

I am proud to say… Layne has just finished his first season of football (undefeated) and wrestling at his local Middle School and is currently on the TRACK TEAM! Two summers ago, he assisted his soccer team in an undefeated season!

I am writing to give encouragement to RSD patients and parents and to loved ones who suffer along with the patients. I was fearful for my son’s future. He went from being a healthy young boy with the world at his feet to nearly not having a foot at all. We are so blessed! There have been no reoccurrences for six years!

To all those suffering from RSD… Keep your chin up! Work through your physical therapy, keep praying and know there is a lady in VA who is rooting for you!