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Random Eruptions: Things could always be worse
By Randy Erickson


I try to look on the bright side. Some see the glass as half empty and some see the glass as half full, whereas I usually don't even worry how much is in the glass because I figure I've got a free refill coming.

The past couple months, though, have put the optimist in me to the test. That's what happens when your children are suffering, but I try to keep telling myself it could be worse. And it really could.

I mean, the doctors could have missed diagnosing the mysterious pain my 11-year-old daughter, Becca, was having several years ago. She had done something to her ankle in gymnastics class - nothing serious - but the pain just would not go away. In fact, it kept getting worse, although there was no swelling to indicate a sprain or a broken bone.

By the time we got her in to see a specialist, she couldn't stand to walk on her right foot. Luckily, the doctor recognized Becca's strange collection of symptoms - unexplained or unexpectedly intense pain, unusually sensitive and cold skin in the affected area and skin discoloration - as reflex sympathetic dystrophy. If the doctor hadn't known what it was and what to do, the symptoms could have kept spiraling into more and more pain.

With this syndrome, known as RSD for short, a minor injury somehow triggers a reaction in the sympathetic nervous system that begins sending constant pain signals from the area of the injury. With the escalating pain, the RSD sufferer immobilizes the injured area, trying to avoid pain, and with time, the ability to move the affected part is severely limited or even lost.

After the diagnosis, Becca went through about a month of physical therapy. The pain finally subsided and she was back to normal. The optimist in me wanted to believe it was gone for good. Wishful thinking.

The RSD flared up three or four times in the next couple years after she was originally diagnosed, but we recognized what was happening and hit the physical therapy hard, so the episodes were mercifully short.

Then this winter, a playground bully pushed down my 8-year-old daughter, Annie, and she came home from school with a sore wrist. Nothing broken. In fact, it didn't even raise a bruise, but it started hurting so bad she didn't want to move it. RSD strikes again.

While we were doing physical therapy at home on Annie and waiting to get her in to see the specialist, Becca's RSD flared up again, too. By the time Annie's appointment came, she was back to normal, thanks to home physical therapy, but Becca was on crutches with her worst episode yet.

That was two months ago, about a month before we decided to rent a wheelchair for Becca so she wouldn't have to crutch for long distances if we wanted to go to the mall or out for a family walk. Becca has made little if any progress in the past month and at times is in pain beyond any she has ever known.

Last week, we finally decided she couldn't continue attending school. The pain is too much of a distraction, and the medication she is on makes her dizzy at times, kind of a hazard if you're trying to crutch her way down a crowded hall. If the medication doesn't produce improvements soon, the doctor says the next step is a nerve block, which involves shooting some kind of substance into a strategic spot in her spine to block the nerve signals from her ankle.

I'd be bummed out about all this if I weren't so lucky. It could be so much worse.

Becca could have a deadly disease instead of a painful affliction. Or she could be paralyzed, requiring constant care instead of relatively minor concessions to her condition.

We could be dealing with this ordeal alone instead of having the help of my wife's mother, whose invaluable assistance has limited the amount of work we've had to miss and given Becca a chance to spend more time with her grandma.

And what if we had no health insurance? Scary.

Even the timing of Becca's latest battle with RSD seems lucky. Thanks to a People magazine cover story about Paula Abdul's struggle with the chronic pain of RSD, public awareness of this bizarre syndrome is probably at an all-time high. USA Today this week came out with a spread on chronic pain, and we have found another local family whose struggles have been remarkably similar to Becca's. This week, we don't feel so alone.

Yes, I have a daughter (maybe daughters) with a syndrome that could develop into a lifelong debilitating disability, but you know, my cup runneth over.

June 28, 2006

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