RSD In the News : FWD: Flint Journa

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From: byrd45 (Original Message) Sent: 5/17/2005 9:57 AM
12-year-old has tough trip from twisted ankle to relief

MONTROSE TOWNSHIP
THE FLINT JOURNAL FIRST EDITION
Monday, May 02, 2005
By Rose Mary Reiz


The second of a two-day series

The nightmare began when Allison Switalski, an outgoing, athletic 10-year-old from Montrose Township, twisted her ankle during basketball practice.

In the months that followed, what should have been a minor, half-forgotten injury became a catastrophe. The pain in Allison's ankle worsened and spread, first to her other leg, then to her knees, elbow, shoulder, arm and hand. She had headaches, dizziness and blurred vision.

Unable to put weight on her legs, she had to crawl on her hands and knees up the stairs to her bedroom. A breeze, or the touch of clothing on her skin, could make her cry in pain. She was exhausted but couldn't sleep.

Normally an enthusiastic student, Allison missed a lot of school. Her classmates couldn't understand her frequent absences. Suspicious that she was exaggerating her symptoms to get attention, some withdrew.

"Some kids were really good friends before this, and then they weren't anymore." Allison said.

Allison's parents, Dorthy and Steve, were desperate to get help for their daughter. The squares on their calendar, once filled with social, school and athletic events, were now scribbled black with doctor's appointments.

Most physicians were well-meaning. All were baffled. A sprained ankle couldn't have caused this much pain. X-rays, bone scans and blood tests ruled out arthritis and every other condition they could think of. Pain medication and physical therapy weren't helping.

Some doctors told Allison that she needed to "be patient and wait for the pain to go away." Others suggested that the pain "was in her head." One nurse was convinced that Allison was having an emotional reaction to the World Trade Center bombing.

"The physical pain of RSD is excruciating," Dorthy said. "But the pain of not being believed is almost as bad."

Eight months after Allison twisted her ankle, an orthopedist in Ann Arbor watched her wince in pain while putting on her sock after an examination.

"Have you ever heard of RSD?" the doctor asked. She explained what she knew about Reflex Sympathetic Dystrophy, a chronic pain disorder.

"She didn't know too much about it, but she was the first person to correctly identify what we were dealing with," Dorthy said. "She will always be my hero."

At home, Dorthy logged on to her computer to learn all she could. Everything she discovered convinced her that Allison did have RSD, a little-known and often misdiagnosed neurological condition that causes nerves to misfire and send constant pain signals to the brain.

Through organizations like the Reflex Sympathetic Dystrophy Syndrome Association, Dorthy learned that RSD often follows a minor injury. The disease is not fatal, but it is considered the worst of any chronic pain disorder.

There is no cure. Treated early, usually with medication and nerve blocks, remission is possible. Without proper treatment, RSD renders most patients disabled. There is no single test to diagnose RSD. Most doctors never have encountered it, and many are skeptical that it even exists.

Allison was referred to a hospital in Detroit, where doctors agreed that she was suffering from a pain disorder but couldn't agree that it was RSD. They scheduled her for an epidural, or spinal pain block, and a catheter to deliver pain medication, to be followed by physical therapy.

Allison never got that far. After the epidural, she was in excruciating back pain. It didn't help that a tube connected to her back had been caught on a pole and jerked when she was moved to her bed. The procedure would have to be repeated, the doctor said.

"We couldn't believe they wanted to do it again with her in this much pain," Dorthy said. "Even touching a cotton ball to her skin sent her through the roof. Finally they told us, 'Well, go home and think about it.' "

Allison was discharged. Beyond discouraged, Dorthy and Steve started to drive their daughter home.

"On a scale of one to 10, if four is a bad toothache, then Alli's pain most of the time was a nine," her dad said. "During that period, it was a 15."

The drive home lasted 10 miles.

"Every time we went over a crack in the road, Alli was screaming in pain," her mother said. "We called the hospital and told them we were coming back."

Admitted to the emergency room, Allison was given morphine. Neither that nor anything else brought relief. The drugs caused her breathing and heart rate to drop dangerously low. She was given oxygen.

Every bump of her bed, every needle injection caused the pain to skyrocket. She could sleep for just moments at a time. By the 11th day, doctors admitted they had run out of ideas. They suggested Allison be taken to the Mayo Clinic, the Cleveland Clinic or Children's Hospital in Boston.

Allison was given prescriptions for more pain medication and sent home. By this time, her back pain was so great that even the weight of a T-shirt was unbearable. She couldn't walk or sit.

"We saw her go from crutches to a wheelchair to a reclining wheelchair," her mother said. "That was the lowest point. Seeing her lying in that wheelchair made me think she'd never get up again."

Allison's frantic parents made an appointment for her at the Cleveland Clinic, where, almost a year to the date since her injury, doctors finally confirmed that she had RSD.

"It was the first time that doctors didn't question the pain levels she was having," Dorthy said. "It was the first time we got a definitive diagnosis from someone who knew about RSD and had real ideas on how to treat it."

Home again, this time on steroids and with an appointment for a nerve block, Allison began to improve. She progressed from a reclining wheelchair to a regular wheelchair to walking, a few hesitant steps at a time, on crutches.

Her biggest breakthrough came one Sunday morning while attending Mass with her parents. Allison usually was transferred from a wheelchair to a church pew, where she remained seated during the service.

"This time, when we stood during Mass, she stood next to me and tugged on my sleeve," Dorthy said.

Astonished, Dorthy turned to her daughter, who whispered two words her mother had almost given up on hearing: "No pain."

For a girl who had been long prayed for by family and friends, it was an appropriate setting for a breakthrough that has since led to remission. Almost two years after her fateful twisted ankle, Allison, 12, still struggles with blurred vision, stomach and back aches. But she often is pain-free.

One day, she fell while riding her bike. With blood running down her legs and her elbows scraped raw and studded with gravel, she happily proclaimed to her mom, "It's just normal pain!"

School sports still are off-limits, but Allison is a busy seventh-grader who plays the cornet, is a member of her school's National Honor Society, drama club, student council and swim team.

Allison has lots of friends. The more her classmates and teachers learned about her condition, the more supportive they became, she said.

"One of my friends, when I had to crawl upstairs, would crawl right along with me," she said. "Another boy from school sent me an e-mail apologizing for not believing me when I was sick."

Allison takes medication three times a day, uses a hot tub for pain relief and has regular appointments with a Cleveland RSD specialist. Her prognosis is good. Unlike adults with RSD, children, once in remission, often remain pain-free.

When Allison was a little girl, someone asked her what she wanted to be when she grew up. Her off-the-wall answer, "a plumber," has been the source of family jokes for years.

Lately, she has other career plans.

"I would sort of like to be an RSD specialist," she said.

Allison's mom is all for it.

"We're not anti-doctor," she said. "We just want them to listen and learn more about RSD so that patients can get properly diagnosed."

In the meantime, Allison has become a vocal activist on behalf of RSD sufferers. She recently visited State Rep. John Gleason, D-Flushing, in Lansing to promote legislation that would increase public awareness and mandate education about RSD.

Her mother is not surprised at her daughter's activism.

"One of her former teachers told me, 'Don't underestimate the power of Alli.'

"I never do. She's taught us all so much about life."


What a wonderful story!

Love,

Robyn

RSD In the News : FWD:The Flint Journal/Montrose Girl Battles Attack By Painful Monster
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From: byrd45 (Original Message) Sent: 5/17/2005 9:35 AM
Montrose Township Girl Battles Attack By Painful Monster
THE FLINT JOURNAL FIRST EDITION
Sunday, May 01, 2005
By Rose Mary Reiz
810.766.6353

Allison Switalski knows that there is only one thing worse than being in constant pain: not being believed.

"The worst part was when some of the kids at school started an 'Alli's Faking It' club," said Allison, 12, of Montrose Township.

"It hurt my feelings, but I can understand why they did it. One day I'd be on crutches, then I'd be walking fine, then I'd be on crutches again. They couldn't figure out what was wrong with me."

For a long time, neither could anyone else. Doctors couldn't understand how a simple, twisted ankle resulted in pain so severe that Allison once had to crawl from her sixth-grade classroom to the school office to call her mom.

They couldn't explain why the weight of cloth on her skin was so excruciating that her parents had to cut the backs out of her T-shirts. Or why, when riding in a car, a bump in the road made her moan and cry.

Allison's problems began in the summer of 2003. An outgoing, competitive athlete, she twisted her left ankle while playing basketball. Soon, her ankle was black, blue and swollen to twice its normal size. Allison, irritated at being sidelined, insisted she was fine. X-rays confirmed that no bones were broken.

She should have been back to normal in no time. But the next month, when she went to the first soccer practice of the season, the pain was back with a vengeance. She hobbled off the field.

She attended the next three practices with the same results. Maybe she was trying to do too much, her parents thought. Maybe she should choose between soccer and basketball.

Allison chose basketball. At the first practice, pain again shot through her ankle. Allison staggered off the court and was on crutches for the next three days.

The family pediatrician prescribed ibuprofen and ice. The pain worsened. An orthopedic specialist prescribed a leg brace and physical therapy. The swelling subsided, but the pain persisted. An MRI revealed nothing that should have caused such pain.

When Allison began having pain and popping sensations in her other ankle, confused doctors suspected arthritis. A pediatric rheumatologist examined her, found no signs of arthritis and sent her home. Her mother, Dorthy, balked.

"I said, 'Wait a minute. I can't take her home without getting some help. Something's wrong with her. She can't even walk without crutches.' "

Dorthy almost could feel the doctor resist rolling his eyes. She was beginning to know the frustration of being dismissed as a "difficult" parent. In an obvious effort to appease her, the doctor prescribed more physical therapy.

Although pain was no fun, Allison still was a happy, easy-going girl. She still enjoyed artwork. She still loved filling her pink bedroom with as many Piglet toys and figurines as she could find.

As the youngest of three children and the only daughter, she didn't lack for attention. Neither was she a wimp. She could hold her own when sparring with her two older brothers, Matt, 19, and Andy, 16. While her symptoms puzzled her, she was confident that, between her parents and the doctors, someone would figure out what was wrong and fix it.

In the weeks that followed, Allison's elbow began to make popping noises and hurt. The pain spread to her shoulder. She still often needed crutches and began having headaches. She sometimes needed Tylenol with codeine just to get to sleep.

Seven months after Allison first twisted her ankle, she rolled it again while walking to the front of the class to turn in a paper. The pain was ferocious. She hobbled back to her seat and waited until everyone else left, then hopped out on one leg.

By the time she got to her locker, the hallway had emptied of students. Now in too much pain even to hop, she crawled on her hands and knees to the school office to call her mom.

The family doctor wrote a referral to a University of Michigan Hospital orthopedist. While waiting for the appointment date, Allison's symptoms multiplied. She began having stomachaches. Pain in her wrist became so severe she couldn't grasp a pencil. Both her knees ached.

Dorthy and Steve tried to maintain a positive attitude in front of their daughter. In private, they fretted and cried. Allison seemed under attack by some monster they couldn't name and didn't know how to fight. Her condition, physical and emotional, worried them sick.

"I noticed that she was starting to shut down a little," Steve said. "She still had that spark, and she was still saying things like, 'It's OK. I'll play soccer in the spring when I'm better.' But she was more quiet than usual."

Pain was consuming most of Allison's energy. What little she had left, she spent trying to stay upbeat in front of skeptical friends, teachers and doctors.

"Why do you get to stay home so much from school?" envious classmates asked. "How come sometimes you need crutches and sometimes you don't?" "What's wrong with you, anyhow?"

One day, a teacher, frustrated with the amount of school Allison was missing, chided her, "You know, Alli, it's just as easy to be in pain in school as it is at home."

Doctors hinted that Allison might be exaggerating symptoms to get attention and that her parents were "enabling her."

"I was furious," Dorthy said, "but I kept my cool because I needed their help. All I said was, 'How do you enable someone not to be able to walk?' "

Nine months after Allison's original injury, the pain in her left ankle still was constant. She also had pain in both knees, her right elbow and left wrist. In between bone scans, X-rays, physical therapy and a smorgasbord of pain medications, Allison tried to go to school. Sometimes she made it through the first hour, only to return home with an excruciating headache or leg pain.

Dorthy and Steve, a test mechanic at General Motors, held their breath each day until they knew how Allison was doing. On a good day, she got up and went to school. On a bad day, she could only lie in bed, moaning.

Once she described the pain in her left ankle as "bombs exploding." On some days, when her parents asked, 'What hurts?' she could only cry and mumble, "Everything."

"She got to the point where the pain was so bad she couldn't even cry," her mom said. "There's a point where the pain reaches a level that's beyond tears, where you don't have the energy to cry."

Allison's parents felt heartbroken and helpless.

"It's a terrible feeling when there's nothing you can do or say to make it better," Steve said. "When she was in a lot of pain, all we could do was try to distract her by putting a movie on or bringing the dog in."

Allison's brothers no longer teased their sister but instead carried an extra television set to her room for her to watch from bed. When she was in so much pain that she had to crawl up the stairs to her bedroom, the family dog, Daizee, waited patiently at the top.

Classmates, homework and sports seemed far away. Dorthy, a school board member and normally a stickler for homework, no longer cared whether her daughter opened a textbook.

"That's really something coming from me," Dorthy said. "But it was all we could do just to survive. Alli couldn't concentrate or read. It took all she had just to be."

Survival meant lots of prayers - that Allison would be healed, that the next doctor would have an answer, that the next day would be better than the last.

And the prayers of any parent whose child is in pain.

"You just wish it was you instead of her," Dorthy said.

Allison, bleary from pain and medicine, prayed, too.

"My prayer was just, 'Help me.' "

Help finally came from a doctor in Ann Arbor. While Allison was getting dressed after yet another unproductive examination, the doctor noticed her wince in pain just from touching her sock to her foot.

The doctor then asked a question that would change Allison's life.

"Have you ever heard of RSD?"

Continued.......................................



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