Treating kids with CFS
Pennsylvania
doctors learn from noted clinicians
By Patti Schmidt
The CFIDS
Chronicle July/August 1998
Lehigh Valley Hospital and the CFS
Association of the Lehigh Valley sponsored a seminar May 20 called "Chronic
Fatigue Syndrome in Children and Adolescents."
Herbert L. Hyman, MD, a gastroenterologist
who treats many Allentown, Pa.-area CFS patients, John D. VanBrakle, MD,
pediatrics department chairman, Lehigh Valley Hospital, and the hospital's
Center for Educational Development and Support sponsored the series. Featured
speakers were David S. Bell, MD, and Charles W. Lapp, MD, both well known for
their experience with young people with CFS (referred to as chonic fatigue
syndrome or CFS rather than CFIDS in medical research and, therefore, in this
article).
The event consisted of an afternoon session
for medical professionals and an evening session for patients, friends and
family members.
Diagnosing kids &
adolescents
After a brief introduction, Dr. Bell, also
well known for his research, talked about treating PWCs for more than a dozen
years. In 1985, he identified an outbreak in his small community of Lyndonville,
N.Y., as a distinct illness. His talk focused on diagnosing children and
adolescents.
"It's been frustrating to those of us who
study CFS that no one medical specialty has come forward to claim the illness. I
feel it should be the general practitioner or pediatrician," he said.
Bell pointed out the controversy
surrounding diagnosing children less than 10 with CFS and said most doctors
won't feel comfortable doing so until a better definition is decided upon. With
young children, he pointed out, it's often difficult to quantify their
symptoms.
"Sometimes kids have no previous state of
non-fatigue to compare their present fatigued state to," reminded Dr. Bell.
After age 10, he said most kids find it easier to talk about their
symptoms.
Gradual onset typical
Dr. Bell has found that although adults are
more commonly hit with an acute onset, children more often become gradually ill
with CFS, and while in adults CFS is diagnosed more often in females, in kids
both genders get it equally.
Despite the controversy in diagnosing young
children, Dr. Bell finds CFS tends to have a "very characteristic symptom
pattern" in children.
"The child may look healthy, but you'll
find that functionally, he's not," said Bell. His study found that children have
rashes, abdominal pains and dizziness more often than adults.
Dr. Bell divided his CFS diagnostic
presentation into four parts: fatigue, neurologic difficulties, pain and
sensitivities.
Fatigue, he said, is an inaccurate term for
what PWCs feel.
"Asthenia is a more accurate description,"
he said, "meaning loss or lack of bodily strength, weakness, debility. The
fatigue occurs abruptly, is often mixed with orthostatic intolerance and is made
worse by exertion."
Kids learn how to work around their
activity limitations naturally, he noted. They'll be more active at a certain
part of the day when their bodies allow them to be; they'll also tend to be more
tired at certain parts of the day.
A slide with Karnofsky scores in hour-long
periods showed the typical ups and downs of a PWCs daily fatigue fluctuations.
He also showed a graph that plotted a PWCs energy levels over a month-long
period. This kind of graphing would be helpful for PWCs of any age, because it
shows individual fatigue patterns.
"You also might find neurologic problems in
these kids," Dr. Bell told the medical professionals present. "Cognitive
dysfunction, balance disorders, parasthenia and dizziness are
common."
Pain can also be a part of CFS for many
children, he said. In a recent study of pediatric PWCs, 70 percent of them had
fibromyalgia. "I think it's the same illness," said Dr. Bell.
Sensitivities help in
diagnosis
Sensitivities are also common in pediatric
CFS, he noted. Many kids are sensitive to light, noise, odor, drugs, temperature
changes and foods. This does not happen in hypochondriasis, he noted, and can be
used to rule that out.
The biggest difficulty in pediatric CFS may
be the emotional toll it takes, he said. "Children get confused when they're
sick with an illness like CFS," said Dr. Bell. "They wonder, are they sick or is
it an emotional issue?"
He spoke about kids having "health identity
confusion," in which they mix up who they are with why they're sick. Appropriate
counseling can help, but he said that nothing takes the place of caring,
supportive parents and a family doctor who believes the child and takes his or
her complaints seriously.
One of Dr. Bell's recent studies of 214
adults and 47 kids found CFS occurs in families more often than previously
reported. During the evening session, Dr. Lapp reported that Dr. Walter Gunn,
formerly of the Centers for Disease Control (CDC), had told him privately that
they'd found a 10%-15% occurrence in families.
About 80 percent improve
Bell has continued to follow his outbreak
patients, and has found that 37% of the CFS cases resolved completely; 42% are
well, but are not completely resolved; 11% remain quite ill; and 8% are very
ill.
"So after 15 years," he said, "80% have a
satisfactory outcome, and 20% an unsatisfactory outcome."
Of those in his study, no one recovered
within 12 months of onset. Twenty-two percent recovered within 12-23 months of
onset; 11% recovered within 24-35 months of onset; 33% recovered within 36-48
months of onset; and 33% recovered after four years or more.
"I haven't found that CFS is short-lived in
my pediatric patients," said Dr. Bell. Previously, the NIH has said that CFS in
kids usually resolves itself within two years.
His study also found that CFS has a
profound impact on education for young PWCs. Forty percent missed little or no
school; almost 23% missed up to six months; almost 9% missed between six and 12
months; almost 6% missed between 12-24 months; and almost 23% missed more than
two years of school.
"The amount of school missed is an
important indicator of outcome," he noted. In other words, the more school a
child misses, the more likely it is that he' ll be sick longer.
Seeing kids' points of view
Dr. Lapp, director of the Hunter-Hopkins
Center in Charlotte, N.C., and associate clinical professor at Duke University
Medical Center, talked about CFS management from the viewpoint of a practicing
clinician.
"Kids with CFS are frustrated and angry at
their doctors," said Dr. Lapp. "But once diagnosed, they feel relief and
closure. I tell my patients that most people get better over time. It might be
years until they feel better, so I tell them they must develop coping
strategies."
Lapp's initial suggestions: avoid strict
bedrest and balance light activity with frequent rest. Stretching is important,
he said, so yoga and tai chi are great.
"I teach all my patients to deep-breathe
and to watch their posture," he said. "Interval exercise has been found to be
helpful in Ben Natelson's clinic, so I recommend interval exercise for many of
my CFS patients," he said. "Find something you like to do, do it for five
minutes, rest, do it again for five minutes, then rest again."
Lapp believes hydrotherapy helps a sluggish
lymph system get going again, and that hot and cool packs, massage, acupuncture
and ultrasound all have their place in a typical treatment regimen.
Watch eating, sleeping habits
"Eat a prudent diet," he told the patients
present. "Carbohydrate-based, with lots of fruits and vegetables but light on
meats."
Lapp has always told his patients to avoid
sugar, caffeine, alcohol, Nutrasweet and tobacco, as well as dairy and wheat if
they're particularly sensitive.
He also recommends a good-quality
multivitamin, B-12, CoQ10, minerals and Omega 3 and 6 fatty acids.
"Get sleep, headache and myalgia issues
under control," he recommended.
With kids, Lapp said good sleep hygiene is
particularly important. Don't allow children to make their bed the center of
their world: make it simply for sleep. Find another place for them to lie down
when they're up out of bed--a recliner or sofa, for example. Help kids develop a
bedtime routine--brushing their teeth, reading for a few minutes, perhaps taking
proper medications an hour previously.
"Allow a 30- to 60-minute wind-down period
before bedtime," he said.
For sleep problems in pediatric CFS, Lapp
recommends Benadryl first, then Tylenol PM or Excedrin PM. If that doesn't help,
0.5 mg of Klonopin or 10 mg Doxepin usually work. Occasionally, with older
children, he'll try Trazadone, Valium or Ativan.
For fatigue, Lapp uses SSRIs or dopamine
agonists to take care of the low serotonin in the brain and serum of CFS
patients.
Treatment for pain
For headache relief for children, he likes
to first use cool packs at the front and back of the head, and then he'll try
NSAIDs such as Tylenol. Only if those two do not work separately or
concurrently, he'll try Diamox, calcium channel blockers or analgesic sedatives.
In the worst of cases, he'll use Midrin or Imitrex.
For pain, he's careful to medicate only
when absolutely necessary.
"Sometimes you can distract children from
their pain, so try that first," Dr. Lapp said. "Cool packs are good. If those
don't have any effect, use NSAIDs, then narcotic analgesics. Also try
erithropoietin or epoetin alfa."
For kids with neurally mediated
hypotension, he finds that water, salt tablets, Florinef, or beta blockers like
Norpace CR can help with the dizzy spells and fainting. "Our studies are showing
total body water is low in PWCs," he said. "It may be a renal
deficit."
Dr. Lapp noted that it can be hard to
differentiate between CFS and Attention Deficit Disorder, so he urged physicians
and parents to make sure their patients and children were tested
appropriately.
Psychosocial issues critical
But Lapp stressed that with kids, the
psychosocial implications are doubly important.
"These kids may look healthy, and yet can
be severely ill," he said. The effects of a chronic illness on a child or teen's
self-perception can be enormous, he noted.
In a study of children and teens, Lapp
found that 98% felt different than their peers in physical appearance, motility
and vocation.
Sympathy and understanding from the
health-care team and parents are very important for youngsters suffering from
this illness, he said.
"Allow them to discuss their feelings," he
encouraged, "and make sure you're communicating well with their teachers
and school officials" about their schoolwork.
Remember that the Individuals with
Disabilities Act provides for children with CFS: they can be considered under
the part of the act that allows "other health-impaired" kids to be eligible
for options like having more time for assignments, tutors, waivers of physical
activity and help with testing.
"The ultimate goal should be to get the kid
back in school," Dr. Lapp noted. "I first try full-time with accommodations.
Then we try part-time. Only in the worst cases do we try to school the child at
home."
Panel discussion
A panel discussion followed, with Drs. Bell
and Lapp joined by John F. Campion, MD, chief of the division of adolescent
inpatient psychiatry at Lehigh Valley Hospital; Martha A. Lusser, MD, clinical
associate professor of pediatrics at Pennsylvania State University College of
Medicine in Hershey, Pa., and an adult and pediatric neurologist on staff at
Lehigh Valley Hospital and St. Luke s Hospital; Karen F. Senft, MD, director of
outpatient pediatric rehabilitation at Good Shepherd Rehabilitation Hospital;
and John D. VanBrakle, MD, chairman of the department of pediatrics at Lehigh
Valley Hospital.
When asked about prevalence, Dr. Bell said
he believes doctors have seen "only the tip of the iceberg."
Dr. Lapp noted that the latest figures show
that 200 per 100,000 people in the U.S. have CFS.
Dr. Poesnecker, a CFS specialist in
Quakertown, Pa., said he found that many CFS patients first noticed symptoms
related to low blood pressure. Dr. Bell said he sees lots of prior syncope in
his pediatric patients.
A panelist remarked that Dr. Peter Rowe is
trying to determine if those who suffer from syncope are more at risk for CFS in
his studies at Johns Hopkins. However, while vasovagal syncope might cause
fatigue up to 12 hours later, people with that illness can sleep and feel better
the next day.
An audience member asked about melatonin to
help PWCs sleep. Dr. Lapp recommended 1-6 mg, but noted that there have been no
studies to determine a proper dosing for children.
Dr. Campion was asked if he thought CFS was
"a primary psychiatric disorder."
He mentioned that in his practice, two
children suffer from simple chronic fatigue: one is bipolar, he said, and the
other has a school avoidance issue. Neither suffers from CFS then, noted Dr.
Bell.
Another audience member asked about
depression and CFS, and Dr. Lapp responded, "I deal with that as a separate
issue. If appropriate, I urge you to send the child to a psychologist or
psychiatrist."
It's not depression
When yet another person in the audience
asked about the differences between CFS and "a coping problem," Drs. Bell and
Lapp began a well-orchestrated rebuttal.
"There are distinct differences," began Dr.
Bell. "CFS patients have a suppressed HPA axis, while the opposite is true in
depression. CFS patients will have slow brain waves and large amounts of beta
activity and a SPECT scan will show a marked decrease in blood flow to the
brain. Ninety-six percent of CFS patients have NMH."
Dr. Lapp picked up the assault.
"In Australia, they're finding unique amino
acid differences in CFS patients," he said. "For instance, serine is frequently
decreased in CFS patients. They're also finding altered gut flora in CFS
patients, with (a much higher) percent of E. coli than is normal. Serine is a
fairly common treatment in Australia."
Dr. Lapp continued:
"Dr. Mark Demitrack has shown that CFS
patients show a marked decrease in cortisol, which results in the suppression of
the HPA axis. The effects are profound hormonal changes and phase shifting - a
diurnal shift in which patients find themselves falling to sleep later and
later."
"There is a physiological basis to this
illness," said Dr. Bell.
"Any depression doesn't cause sore throats,
lymphodenapathy, fevers and cognitive problems of the kind we see," noted Dr.
Lapp. "There's just no way to blow off all of the CFS symptoms to
depression."
At this point, the audience got the
picture, and asked if any of the physicians used stimulants in their CFS
patients.
"Low doses of amphetamines can speed up the
brain waves," Dr. Lapp said. "At the Cleveland Clinic, it was noticed that
many CFS patients had ADD. I think you'll find that Ritalin is good for
cognitive problems, low energy and low blood pressure."
Dr. Bell added, "The irony is that every
primary care physician knows how to treat this. It's a difficult diagnosis to
make; doctors would be much more comfortable with a diagnostic test."
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