In early November, our daughter B was completely healthy and happy—just the same way she'd been the rest of her life. She was busily engaged in activities at middle school, from theater to orchestra to Model UN—and filming a movie she and her friends were writing together.

Her legs looked like this:

Normal.

On November 20, she complained of a sore back, a bad headache, and was running a high fever. Doctors were concerned about meningitis. By that night she landed in the ER with severe abdominal pains. Then doctors were concerned about appendicitis. Over the next few days, she suffered more headaches, more high fevers, and migrating pain. On November 22, she awoke and couldn't move below the neck, because the pain was so intense. It took both Chris and me (Noelle) to get her out the door to the hospital. Doctors, perplexed, tested her for Lyme disease, juvenile arthritis, rheumatoid arthritis, and parvovirus (fifth disease). Her test results came back positive for fifth disease, a normally benign childhood virus that results in (at most, typically) red cheeks and some joint discomfort. Heading into the Thanksgiving weekend, they told us not to worry, to wait it out and that she would get better. We were still distressed, but relieved.

In the meantime, B's leg and foot started to look like this:

They are in this locked, rigid position 24/7--even when she is sound asleep. The doctors agreed this was unusual, and not the typical presentation for fifth disease. A pediatrician friend suggested another explanation: a disorder called RSD (reflexive sympathetic dystrophy). Two days later, we say a pediatric rheumatologist who gave us that same diagnosis.

Chances are, like our family, you'd never heard of RSD. It's a rare, chronic neurological disorder that attacks the sympathetic nervous system.  Also called CRPS (complex regional pain syndrome), the disease is characterized by (and I quote the RSD Syndrome Association here):
• severe burning pain
• pathological changes in bone and skin
• tissue swelling
• extreme sensitivity to touch


B also experiences intense involuntary muscle spasms in her thigh and ankle a few times a day. How intense? Think labor pain-intense. And they last from five minutes (blessedly short) to 25 minutes (grindingly awful). She often has to bite down on a washcloth to keep from screaming.

A simple touch hurts her--at times, it hurts too much to keep a blanket on her leg, even when she is cold.

Right now, she gets around on crutches at home and in her wheelchair at school and in public. School for her has gone from being a delight to a challenge: Kids ask her what's wrong with her leg all day, and when she's going to get better. She never knows what to say. Her three hardcore pain medications (which so far do little to mitigate the pain, in my opinion) make her tired, and occasionally confused. Even though she has an accommodation plan in place, not every teacher seems to really understand what she's up against.

She is also in physical therapy five days a week. Plus we need to do exercises with her once an hour. Each time, they cause bouts of terrible agonizing pain, so it's hard on everyone. (The dog has been treated for stress and anxiety this week, and I am knocking back Pinot Noir some days at 3 PM.)

Despite all of this, B is keeping an upbeat attitude 90 percent of the time. We give her tremendous credit for that. She is just 11 years old, and was leading a perfectly normal life what feels like 5 minutes ago. Every night, after I coach her through the pain spasms, she thanks me and it breaks my heart just a little. Or what's left of it after watching her white-knuckle it through a trip to the kitchen, or after our dog merely brushes past her toes.

If there is any good news here, it's that we caught this early. Children with the best shot at full remission and no recurrences were diagnosed early and aggressively treated. There are no cures and no guarantees--many kids get flare-ups in years to come. And if love alone could bring her leg back to the way it was, she would have been healed weeks ago. But we are doing everything we can, and are determined to conquer this.

For more on RSD go to: http://www.rsds.org/aboutCRPS.html or http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm