Children &Teens with Fibromyalgia
Chronic Fatigue Syndrome
Since 1996 when I first began
my FMS/CFIDS site at www.fms-help.com, I
have heard from many families whose teens or children are showing signs of
this illness. Below is a letter
I recently received from a concerned parent, followed by two helpful articles
Letter From a Concerned
"I feel such a kinship
with your story [www.fms-help.com/fatigue.htm and
www.fms-help.com/fibro.htm], more so
because my 11 year old son back in 1989 developed mono at the end of 6th
grade. He suffered for 3 years and missed 7th, 8th & 9th grades being
unable to function. He complained of going to bed exhausted and waking to
say he had not sleep at all. As you know it continued him on a downward
spiral until I forced to take him out of school and we had a tutor for the first
1-1/2 years through the school system, but at the end of that time they decided
we were "abusing" that he would return to school and they withdrew the tutoring
assistance. I ended up homeschooling, with the help of a tutor and we made
it through. He was determined and did return to school for 10th
grade. I am happy to say that he is very bright and managed to be an A
student, has gone to complete college and seems to be "out of the woods".
I do worry that it may rear its ugly head again. At the time of his
illness nothing was known about fibromyalgia. We did finally get the
attention of a wonderful doctor who sent us to a juvenile rheumatologist and we
got a diagnosis. He was started on Elavil and gradually he started to get
the needed sleep and a year and half after was able to return to school.
I have some minor problems,
although I still work full-time, and I so identified with your story! Even
my daughter has fibromyalgia...she too got mono in 7th grade and afterward it
seemed the slightest cold, virus would take her down. She still has the
tenderness and has to be aware of her needs in order to keep from becoming too
run down and susceptible to illnesses. In the early years before much was known, the worst part [with my son] was the fact that no one believed it was an illness. At one point, when we knew at Christmas that the school would withdraw our tutoring support and my son would according to the school return that January he actually said to me, "Mom, I just wish I had a brain tumor, maybe then they would believe me." It broke my heart. That is when I knew I had to be his lone supporter and we would work through it all somehow. Your network is a tremendous help to those who need all the support they can find as they struggle with this illness. God bless you for sharing and bringing people together...there is strength through a network such as yours. Thank you for your wonderful
[NOTE FROM DOMINIE: For perceptive
comments from Marly McKibben of P.A.N.D.O.R.A. about
children and young people with FMS/CFIDS, go to www.fms-help.com/neuro.htm
and read what I have highlighted in TEAL.]
Recognizing and Coping With Pediatric Chronic Fatigue Syndrome &
by Eunice Beck,
Although CFIDS and Fibromyalgia can occur
at any age, even in childhood, it is poorly diagnosed in the young. Children and
adolescents frequently have a gradual onset of symptoms. However, the types and
degree of the symptoms are similar to that seen in adults.
Pediatric CFIDS/FM can be even more
confusing for doctors and parents because children’s reported symptoms are
frequently inconsistent. And the children often come to think of their symptoms
are “normal” or that they are just having “growing pains.” I imagine many of us
can remember those kinds of feelings as kids. Because the symptoms may seem
strange to them, they are afraid to report them, or they feel guilty for not
feeling well, so they decide they shouldn’t complain. In addition, because of
the gradual onset, pediatric symptoms may not fit the usual diagnostic criteria
until the child has been ill for a number of years.
Unfortunately, kids hear “it’s all in your
head” as often as we do. Their symptoms may be blamed on school phobia or
stress. They may be labeled as lazy, slow learning, or shy. They may be seen as
depressed or as having behavioral problems because of their complaining or
inability to participate in some activities. Or their symptoms may be attributed
to an inability to cope with the social interaction required by school
In an article titled WHY CHILDREN WITH CFS
ARE OFTEN OVERLOOKED (1996)* authors Rebecca C. Moore and Frank Albrecht, Ph.D.,
discuss some of the reasons that these children are so difficult to diagnose.
“Suppose you’re a mother who enjoys normal good health and your female
adolescent says to you: ‘Mom, I’m awfully tired all the time. And my bones hurt,
or something. And I feel like I can’t think straight anymore. I feel weird.’
What might you think?
[To read the
article in its entirety, go to http://go1.warp9ems.com/go.pl?tu=25681922-12467.]
Son's Illness with Chronic
Fatigue Syndrome Launches Mom's
After dealing with her son's worsening
condition for six
years, Stafford County woman becomes an advocate for those
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.
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
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
one could name.
"There was nobody else," she said. "I was his mother. I
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.
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
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
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
Her family doctor didn't believe a child Anthony's age--much less
male--could have CFS. When the disease made headlines in the 1980s,
was called the "yuppie flu" because it affected well-to-do women
30s and 40s.
Today, as many as half a million people of all ages, races
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
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
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
His mother said he started reading at age 3. Now, he sometimes
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.
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
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
His emotional and physical issues are typical of CFS
David Bell, a Harvard graduate and New York doctor who has
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.
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
wanted to go back to college and get a degree, but
health problems stopped
The 40-year-old suffers from lupus, a chronic inflammatory disease
that can affect various parts of the body. She's also legally blind
She moved back to North Stafford with her parents, Toni and
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
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
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
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
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
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
But some children with illnesses look like everyone else,
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,
was Katylynn's habit.
McQuown asked the students to think of ways they
Katylynn. They promised to ask her if she needed to see the nurse
call her parents, or maybe they would just give her a hug.
Shanon's come out here, my daughter has just blossomed," said
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
'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
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
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
principal at Moncure Elementary, nicknamed her
When McQuown held a book-signing at school before summer
autographed copies with a poufy pink pen. It dropped glitter,
or "fairy dust," as she called it, on inside covers as she thanked
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
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
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