Son's Illness with Chronic Fatigue Syndrome Launches Mom's Crusade
July 6, 2005
After dealing with her son's worsening condition for six years, Stafford County woman becomes an advocate for those with Chronic Fatigue Syndrome.
By CATHY DYSON
Doctors told her she was overreacting, that there was nothing physically wrong with her child. Teachers called her a "bulldog" and warned others about the way she fought the system for special services as her son got sicker.
Her husband couldn't deal with the stress or the specialists, or maybe it was the many meetings with school officials. He left for work one morning and never came home.
In the past six years, Shanon McQuown often felt as if she was the only one who believed her son's body was being ravaged by an illness no one could name.
"There was nobody else," she said. "I was his mother. I was his doctor. I was his advocate. I was his friend. I was his warden."
McQuown also has become his spokesperson and a voice for others suffering from the disease that changed her only child.
Anthony, now 18, has chronic fatigue syndrome. He was diagnosed in 2001, after more than a dozen specialists checked him out for everything from cancer to digestive disorders.
Things were so bad in 1999 that Anthony was hospitalized. He couldn't have normal bowel movements and was in such pain he either crawled around or was confined to the bed.
Treatments to break up the blockages included vile medicine and nose-to-stomach tubes and were almost as painful as the cause, McQuown recalled.
Anthony never regained his strength after that. He continued to visit doctors, but his mother said no one could explain the extreme fatigue and weakness.
Several said the problems were in his head. McQuown laughs about it now, but it wasn't funny then, when doctors suggested depression as the cause.
Her family doctor didn't believe a child Anthony's age--much less a male--could have CFS. When the disease made headlines in the 1980s, it was called the "yuppie flu" because it affected well-to-do women in their 30s and 40s.
Today, as many as half a million people of all ages, races and social backgrounds may have a CFS-like condition, according to the National Institutes of Health.
Some members of the medical community are still "skeptical of the syndrome," but the number of those diagnosed is likely to rise as "doctors see CFS as a real disorder," an NIH fact sheet stated.
No one knows what causes CFS or how to cure it and it's not even new to the medical world. Doctors reported seeing similar symptoms in the 1860s.
Not 'crazy or lazy'
As McQuown battled for help and a diagnosis, she watched Anthony wither. CFS changed a bright, active preteen into an 18-year-old who doesn't have the stamina for sports, music or church.
His mother said he started reading at age 3. Now, he sometimes can't remember what he's just read. He also complains that he can't always see the print because the words seem to jump off the page.
The teenager is so weak at times that he sleeps up to 22 hours straight. He has problems with short-term memory and processing too many instructions at once. He can't stand for more than 15 minutes without losing strength in his legs.
Anthony was able to graduate from North Stafford High School a few weeks ago, but he had to roll across the stage in a motorized wheelchair.
His emotional and physical issues are typical of CFS patients, said David Bell, a Harvard graduate and New York doctor who has studied the disorder for 15 years.
CFS is so complex, and can impact so many systems in the body, that it's difficult to address, he said. He shares as much information as he can about the baffling disease and recently spoke at a workshop for Stafford County school nurses.
"The biggest obstacle for kids is growing up and not feeling well and not knowing if they're crazy or lazy," the doctor said.
No child would have those feelings if McQuown had her way.
His sickness, her cause
McQuown always wanted to go back to college and get a degree, but health problems stopped her.
The 40-year-old suffers from lupus, a chronic inflammatory disease that can affect various parts of the body. She's also legally blind in one eye.
She moved back to North Stafford with her parents, Toni and S.H. Kelly, after her husband left. Her mother is deaf, and McQuown is proficient in sign language.
It's come in handy on the job. She works with children with brain injuries and learning disabilities at Anne Moncure Elementary School in Garrisonville.
She's helped children with special needs, but never imagined she'd be on the other side of the table, requesting services.
But when Anthony developed problems, McQuown realized she had to get him help.
He couldn't sit in a classroom all day, so she lobbied for homebound teachers. He couldn't always hold a pencil to form letters, but he could draw, so she talked with teachers about adapting to Anthony's changing skills.
McQuown started keeping a journal of the obstacles she faced with doctors and school officials and pledged to write a book some day.
Her own ailments had kept her from meeting some of her goals, but her son's sickness became her cause. She just published "Harnessing the Wind," a 162-page account of their experiences.
She's also become an outspoken advocate for other CFS sufferers.
She arranged the recent workshop in Stafford and led part of the discussions. She's also traveled to other states to help adults and children understand the disorder.
McQuown flew out West, in a snowstorm, several winters ago to see Katlynn Styvar, a 12-year-old plagued by CFS problems since the second grade.
McQuown met with Katlynn's teacher and principal, then sat down with her classmates. She talked about diseases, and how it's easy to tell that someone in a wheelchair is handicapped.
But some children with illnesses look like everyone else, she told the youngsters. At school, they may feel so tired they have to put their heads down on the desk, as Anthony did, or suck their thumbs, as was Katylynn's habit.
McQuown asked the students to think of ways they could help Katylynn. They promised to ask her if she needed to see the nurse or call her parents, or maybe they would just give her a hug.
"Since Shanon's come out here, my daughter has just blossomed," said Clarence Styvar, who lives in Cheyenne, Wyo. "Shanon sat down and talked with school people and explained to them what CFS was and how you need to approach the educational aspects of it.
"Katylynn became more accepted after that and made more friends," he said. "I can't speak highly enough of Shanon. She's a great person."
'She wants the best for him'
Heather Reed, a North Stafford teacher who worked with Anthony a few years ago, had heard a different story about McQuown. She'd been "forewarned" about her from other teachers. McQuown "definitely had a reputation," the teacher said.
But as Reed learned about the frustrating years of doctor visits and the ongoing health problems, she began to view McQuown in a different light. "What I saw the first time I met Shanon was a mother who so absolutely loves her son, she wants the best for him and isn't going to let anyone keep her from getting that," Reed said.
McQuown's co-workers say her tenacity is matched only by her personality. She's always wearing a smile when she comes to school--along with something pink or purple. Ellise Mussington-Vigilant, the principal at Moncure Elementary, nicknamed her "Pinky LaRue."
When McQuown held a book-signing at school before summer break, she autographed copies with a poufy pink pen. It dropped glitter, or "fairy dust," as she called it, on inside covers as she thanked her friends for their encouragement and support.
Few in the group realized how extreme Anthony's problems had been, even though they worked with McQuown daily. "I just started crying," said teacher Debbie Ramsey. "It is just so overwhelming what she has been through."
McQuown isn't necessarily comfortable being photographed or standing up in front of groups of people. She'll do both, though, if that prevents another parent and child from enduring what she and Anthony did.
For more information, visit groups.msn.com/YPWCParent TeacherBridgeBuilder
Source: The Free Lance-Star. Copyright 2005, The Free Lance-Star Publishing Co. of Fredericksburg, Va.
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