Children and Teenagers with Fibromyalgia (FMS) and/or Chronic Fatigue Syndrome (CFS)

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.