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Pediatric researchers publish about CFS
and FM
By Rebecca Moore
Originally published in The CFIDS
Chronicle, November/December
1999, pages 19-20.
A number of recent papers in the medical
literature have focused on issues involving children and young adults with
chronic fatigue syndrome (CFS) and fibromyalgia (FM). Following is a review of
the research.
An easier tilt table
test?
Dr. Rosendo A.
Rodriguez, MD, PhD, and colleagues at the Children’s Hospital of Eastern
Ontario, report in the August 1999 issue of Pediatrics that it may be
possible to diagnose orthostatic intolerance (OT) in a way that is less
traumatic for children. OT, a condition that involves a dramatic increase in
heart rate and drop in blood pressure when the individual stands up, is normally
diagnosed with a tilt table test that extends to the point where the child
experiences light-headedness, dizziness, blurred vision, nausea or fainting.
The researchers used transcranial doppler
(a type of brain sonar scan) to measure blood pressure in the brain during the
tilt table tests of 27 pediatric patients with a history of fainting. They
report that when a child had an abnormal tilt table test, the doppler showed
that blood flow to the child’s brain decreased before the onset of severe
symptoms and before a decrease in overall blood pressure could be detected.
Their conclusion is that it may be possible to use transcranial doppler to
shorten the test by stopping it as soon as cerebral blood flow changes occur and
before the child becomes uncomfortable.
Rodriguez RA, Snider K, Cornel G, Teixeira
OH: Cerebral blood flow velocity during tilt table test
for pediatric syncope.
Pediatrics 1999 Aug;104(2 Pt 1):237-42.
Why IV saline helps orthostatic
intolerance
IV saline
has been used to treat very severe orthostatic intolerance in some adolescents
with CFS. The reasons for its effectiveness have been suspected, but not known.
Dr. Thomas R. Burklow and colleagues from the Children’s National Medical
Center, the National Institutes of Health and American University have now found
that increasing an individual’s fluid volume with saline alters autonomic
responses that may trigger blood pressure changes controlled by the brain. In
the June 1999 issue of the Journal of the American College of Cardiology,
they describe a study in which 12 adolescents had reproducible drops in
blood pressure during a series of two tilt table tests. Abnormal heart rate data
suggested that the withdrawal of sympathetic tone signaled by the brain caused
the children’s fainting during these tests. After the administration of one
liter of normal IV saline over a period of 20 minutes, all of the adolescents
had a third tilt table test, lasting 30 minutes, and none of them fainted. In
addition, the relaxation of heart muscle previously seen was reversed following
the administration of the IV saline.
Burklow TR, Moak JP, Bailey JJ, Makhlouf
FT: Neurally mediated cardiac syncope: autonomic
modulation after normal saline infusion. J Am Coll Cardiol 1999 Jun;33(7):2059-66
Comparing CFS and FM in
kids
In "Review of
Juvenile Primary Fibromyalgia and Chronic Fatigue Syndrome," published in the
August 1999 issue of Developmental and Behavioral Pediatrics, Lynn Breau,
Patrick McGrath and Lilli Ju compare the prevalence, diagnosis, outcome,
physiological factors, psychological factors and treatment of pediatric CFS and
FM. These psychologists from Dalhousie University in Nova Scotia suggest the
possibility that pediatric CFS and FM may differ from the adult versions of
these conditions. Special emphasis is given to the pediatric diagnostic criteria
that have been developed for CFS (by Dr. David Bell) and FM (by Drs. Yunus and
Masi).
Breau, et al. suggest that pediatric CFS
and FM may be variants of one syndrome, with a common genetic cause. In doing
so, they highlight studies by Bell, Walford, Buskila and Roizenblatt, each of
which found that the parents of children with FM or CFS are much more likely to
have the same disorder as their child than are members of the general
population. For example, Dr. Bell found that 50% of children who had both CFS
and FM (four of eight) had a family member with CFS, and 42% of children with
CFS alone (eight of 19) had a family member with CFS. Because Dr. Bell found
this tendency for both FM and CFS to run in families, and it is common for
children with each disorder to describe similar symptoms, Breau, et al. believe
that there may be common genetic factors contributing to FM and CFS in children.
Breau LM, et al: Review of juvenile primary fibromyalgia and chronic
fatigue syndrome. J
Dev Behav Pediatr 1999 Aug;20(4):278-88.
Cause of dizziness in adolescents
with FM
Researchers at
the Medical College of Wisconsin have found that the dizziness of adolescents
with FM is not caused by malfunction in the brainstem or inner ear. In
"Pediatric Fibromyalgia and Dizziness: Evaluation of Vestibular Function,"
published in the August 1999 issue of Developmental and Behavioral
Pediatrics,
they report that 12 adolescents with FM and dizziness had normal
electronystagnography and rotary chair testing results, and essentially normal
results for a battery of six other tests to diagnose problems with the inner
ear, which play a large role in an individual’s sense of balance. The authors
suggest that "the presence of tender points in the head and neck muscles
responsible for maintaining the sense of orientation in space may very well
explain the complaints of imbalance in these patients." They comment that tender
points in the muscles can cause autonomic disturbances and that autonomic and
tilt table testing might be useful for the evaluation of adolescents with FM and
dizziness.
Rusy LM, Harvey SA, Beste DJ: Pediatric fibromyalgia and dizziness: evaluation of
vestibular function. J Dev
Behav Pediatr 1999 Aug;20(4):211-5.
Siblings also cope with
CFIDS
When children
have CFIDS or other chronic illnesses, they often become the focal point of
family life and healthy siblings "are expected to accept all this and to act as
messengers to the outside world." So writes Elizabeth L. Jackson in "The effects
on siblings in families with a child with chronic fatigue syndrome," published
in the Summer 1999 Journal of Child Health Care. Jackson, a nurse
providing support to families with CFIDS in the UK, has identified the following
factors that place stress on siblings in families where a child has CFIDS:
- Apparent dilution of parental concern or
care;
- Loss of a previously healthy companion
or rival;
- New restrictions imposed on family
activities;
- Deterioration in peer relationships; and
- Uncertainty over how whether and how
much the sick child will recover.
Jackson reviews the psychology literature
about siblings of ill children, describing common coping mechanisms, changes in
siblings’ roles in the family, and the emotions which siblings may experience.
She points out that parents must not ignore the needs of siblings and that
intra-family communication is important. She explains that when age-appropriate
information about the child’s illness is withheld from a sibling, it can result
in fear, anger, frustration and a sense of rejection, all of which may cause
loneliness, withdrawal, sadness and confusion. However, hope can be found in the
conclusion she draws from studying the body of research—while pediatric illness
is very stressful, the majority of siblings cope without developing any
psychiatric illness.
Jackson EL: The effects on siblings in families with a child
with chronic fatigue syndrome. J
Child Health Care 1999 Summer;3(2):27-32.
Essays by siblings and
parents of young persons with CFIDS
are available on the Association’s web site.
CFS, OT and
Ehlers-Danlos syndrome
A study by Dr. Peter Rowe and colleagues at Johns Hopkins University
published in the October 1999 issue of The Journal of Pediatrics explores
the association of CFS and orthostatic intolerance (OT) with Ehlers-Danlos
syndrome, an inherited disease of the connective tissue that causes the skin to
become fragile, hyper-elastic and bruise easily. The researchers found that 12
adolescent patients of 100 referred for evaluation of CFS had all three
conditions, which is highly unlikely to be due to chance, as Ehlers-Danlos is
extremely rare in the general population.
The researchers speculate that the link
between these syndromes can be attributed to abnormal connective tissue in the
blood vessels of individuals with Ehlers-Danlos. Because the walls of their
blood vessels can expand more than normal, those individuals may be more prone
to increased pooling of the blood in the legs and feet, which causes the
symptoms associated with orthostatic intolerance.
Rowe and colleagues suggest that pediatric
patients with CFS and orthostatic intolerance patients be carefully evaluated
for Ehlers-Danlos syndrome, and that more extensive research be conducted to
confirm the connection.
Rowe PC, Barron DF, Calkins H, Maumenee IH,
Tong PY, Geraghty MT: Orthostatic intolerance and chronic fatigue syndrome
associated with Ehlers-Danlos syndrome. The Journal of Pediatrics. October 1999; 135(4).
Originally published in The CFIDS
Chronicle, September/October 1999, page
16.
Pediatricians continue debate
The July 1999 issue of the
journal Pediatrics included several letters in an ongoing debate among
pediatricians about the merits of diagnosing CFIDS in children and adolescents.
In response to a recent paper by Krilov, et al., two physicians wrote to raise doubts that chronic
fatigue syndrome is a "a true medical and scientific entity." The author of one
of the letters argued that the most significant risk in diagnosing CFIDS in
children is the "nonidentification of [other] potentially treatable medical
conditions," and proposes that most children with chronic fatigue symptoms have
psychological/social difficulties or sleep disorders. Krilov, et al. responded
to the criticism by pointing out that the constancy of associated signs and
symptoms and frequent association of acute onset with an infectious illness
justifies the use of CFS as a diagnosis and helps patients and their families
avoid unnecessary multiple medical evaluations and procedures.
Severe symptoms in teens with
CFIDS
Researchers have found
that when teenagers with CFIDS stand upright, in as little as six minutes they
experience orthostatic tachycardia syndrome (OTS), symptoms of which include a
dramatic increase in heart rate and decrease in blood pressure, and their feet
can swell and turn blue.
In a new study in the August 1999
Journal of Pediatrics, Dr. Julian Stewart and colleagues at New York
Medical College found that on a head-up tilt test, 92% of CFIDS patients
experienced OTS and the remaining 8% fainted. In contrast to the OTS response of
the CFIDS patients, in which standing caused the heart to race, the controls who
fainted had a vasovagal response, in which heart rate and blood pressure fell.
The researchers also compared CFS patients
to adolescents with OTS who did not meet the CDC criteria for CFIDS. Although
they had similar responses to the test, the teens with CFIDS tended to respond
sooner and more often have blood pooling in their legs. These may be clues as to
why the CFIDS patients were sicker than any of the other groups, missing an
average of 40% of school days, while the OTS patients and controls only missed
an average of 12% and 5%, respectively.
Stewart JM, Gewitz MH, Weldon A, Munoz J:
Patterns of orthostatic intolerance: the orthostatic
tachycardia syndrome and adolescent chronic fatigue. J Pediatr 1999 Aug;135(2 Pt 1):218-25.
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