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Get help for your child as they return to school in
the fall.
A sourcebook named "TEACH-ME" has been written to guide teachers and
parents, who work
with students who have M.E./CFS or Fibromyalgia. For further information on
TEACH-ME, click here. |
Fibromyalgia in Children
2007 Jane Kohler-Lutz
While Fibromyalgia affects over 5 million Americans,
it is a little known fact, that one sufferer out of every six, is a child. Fibromyalgia
affects children the same as adult sufferers, with chronic pain, fatigue, lack of
restorative sleep and stiffness. The criteria for tender points in children is different
from that of adults. A diagnosis for a child can be based on as few as 5 tender points,
most commonly located in the neck, chest, hips, thighs, and buttocks.
Currently, Fibromyalgia can not be detected by any
known lab tests. The doctor will most likely have you take your child for x-rays, scans
and blood work, for the purpose of ruling out other conditions that mimic Fibro, such as
MS or Lupus. Once other disorders have been ruled out, a diagnosis will be made, based on
the child's symptom history and the location of tender points. Doctors and parents have
learned that growing does not hurt, complaints of chronic pain, soreness, fatigue, lack of
sleep, and depression should be taken seriously by the parent, and the childs health care
provider.
Fibro symptoms in children usually start during
adolescence, between the ages of thirteen to fifteen, with girls more likely to develop
the condition than boys. Fibro is known to be passed on by genetics, if you as a parent,
or other family members suffer from Fibro, your child is more likely to develop the
disease. Research shows that children with other, pre-existing condions may be at risk of
developing Fibro, conditions such as Irritable Bowel Syndrome, Premenstral Syndrome, or
Sleep disorders.
Your child may not have the words, or experience
needed to explain their symptoms, and pain, in terms the adults in their world can
understand. It may fall on you, the parent, to understand and advocate for them with
health care professionals, family members and educators. Don't assume that your doctor
will know what to look for, tell them everything that is affecting your childs life.
Including, but not limted to:
- Lack of sleep, or consistent fatigue despite a full
nights sleep.
- Constant aches, chronic pain.
- Problems with the digestive system.
- Inability to function after physical exertion.
- Brain fog, the inability to concentrate on school work
or remember details.
- Heightened skin sensitivity.
- Headaches
Treatments for fibromyalgia in children may include
physical therapy, exercise and medication. The most common medications used are for
restoring the sleep pattern, prescription pain medication is VERY rarely used.
It will be important to remember that your child may
suffer from depression. It is equally important to realize that the depression is a result
of the constant pain and fatigue, not the cause of it. Anyone living with pain, fatigue
and memory problems everyday is susceptible to depression. Antidepressants and counceling
can be useful tools. It is important to reinforce the fact that your child is not to blame
for the changes in their life. They will not understand what is happening to them and
uneducated friends and family members may say things that could raise feelings of guilt or
shame in a child. If anyone insists that your child is faking it, or is just lazy or
unmotivated because they can not walk the whole zoo, or play a game of baseball or do
their homework in one sitting, it will fall on you to support them and advocate on their
behalf. It is important that you educate their teachers, friends and families on their
condition and limitations. Be your child's best ally, always strive to keep them guilt
free as they deal with people outside of your immediate family.
It will fall on you to adjust your childs life and
day to day activities. Depending on the severity of your childs illness, you may have to
cut out certain activities and change their schedule.
All children with Fibro will need:
- Love and support
- Therapy
- Exercise
- Cognitive-behavioral therapy
- Medication
- A healthy diet.
- Avoidance of over exertion
Pain, Pain Go Away:
Helping Children with Pain is a booklet to help parents understand pain.
Pediatric Pain Letter
( PPL) provides free, open-access, peer-reviewed commentaries on pain in infants, children
and adolescents. Book reviews and announcements of events related to pediatric pain are
also accepted. Links are provided to PubMed abstracts for citations in PPL. Sign up for
the newsletter.
SleepyTeenzzz
discussion group A web-based forum for young people with CFIDS. View their
website. SleepyTeenzzz
website.
CFS-20s An
online support forum for those in their 20's with CFS/ME/FMS. This list is unique in that
it allows your spouse or significant other to join as well for support and a better
understanding of what you are dealing with. To subscribe, send the following command by
e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-20s Yourfirstname Yourlastname
Teen Fibro Support Discussion Forum for adolescents and their parents
CFSCFS-20s An online support forum for
those in their 20's with CFS/ME/FMS. This list is unique in that it allows your spouse or
significant other to join as well for support and a better understanding of what you are
dealing with. To subscribe, send the following command by e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-20s Yourfirstname Yourlastname
Fibromyalgia
affects over 5 million Americans. About one in six of those are under 18. That's almost 1
million kids and teens in the United States alone. More.
WHY
CHILDREN WITH CFS ARE OFTEN OVERLOOKED 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?
Read
Article.
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Online Support For
Parents/Caregivers |
Parenting Kids with FM
Parents/Caregivers
of Young Persons with CFS Discussion Group (CFS-P) An e-mail list for parents of
children and young adults with CFS/CFIDS/ME. Subscribe HERE Or send
an email to Address: cfs-p-request@tertius.net.au
Subject: [Leave this blank]
Message: subscribe your_e-mail_address
The Young Person with CFIDS Parent/Teacher Bridge Builder - Good
website.Use the message board to get support and information from other parents and
educators.
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The CFIDS Association of
America Find listings by state of CFIDS/CFS support groups and contacts. If you would
like a list of support groups in your area, mail your name and postal address to CFIDS@cfids.org. You can also request a list via the
post office by mailing the following address; The CFIDS Association of America,
Attn: Support Group Info, PO Box 220398, Charlotte NC 28222-0398.
Wisconsin
Teens.
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* Pain in Children
* The
tendency to develop FMS may be inherited. Devin Starlanyl.
* Pediatric Arthritis & Other Rheumatic Diseases. Fibromyalgia
Lucile Packard's Hospital at Standford.
* Comer Children's Hospital at the University of Chicago has a Childrens
Fibromyalgia Program.
* Juvenile Primary Fibromyalgia Syndrome (JPFS) Cincinnati Children's
Hospital Center.
* Social context of pain in children with Juvenile Primary Fibromyalgia
Syndrome
* Guideline for the management of fibromyalgia syndrome pain in adults and
children.
* Children's Hospital of Central California addresses Fibromyalgia.
* Abstracts for References 1 and 6-10 of 'Fibromyalgia in children and
adolescents
* A Cognitive-Behavioral Approach in the Treatment of Children and
Adolescents Diagnosed with Fibromyalgia
* Family
Factors. Studies report a higher incidence of fibromyalgia among family members.
* Children's Hospital in Boston has a Fibro program for children.
* BNF
For Children. Chronic musculoskeletal and other idiopathic pain syndromes
* Fibromyalgia Syndrome in Children and Adolescents.
* The
Children's Hospital of Philadelphia.
* Guideline for the management of fibromyalgia syndrome pain in adults and
children
Pain in Children
Treating pain in children
The health care profession has made strides in the areas of neonatal (newborn) and
pediatric (relating to children) pain management. When treating children for pain, health
care professionals should tailor care to the child’s level of development. Some
additional factors to consider include a child’s:
- Understanding of medical procedures
- Verbal skills
- Ability to separate from parents
Pain measurement in children
The most difficult task involved with treating pain in children is obtaining an objective
and accurate measurement of pain. Most of the methods available do not apply to all age
groups. No single method has been accepted universally.
Methods for measuring pain in
children can be divided into three categories:
- Self-reported measures of
pain—These measures include routine questions, verbal scales, numeric scales, and
pictorial scales.
- Behavioral measures of pain—Such
measures include motor responses, facial expressions, crying, and behavioral responses
(such as sleep-wake patterns).
- Physiologic measures of
pain—These include blood pressure and pulse changes, in addition to measurement of
palm-sweating.
Considerations when using drugs to
treat pain in children
It is important to remember that children are not just small adults. For example, they
metabolize drugs differently and have a higher percentage of body weight as water and less
as fat than do adults. This affects the way drugs work and also how the drugs are broken
down and removed from the body.
Examples of pain relievers for
children include NSAIDs, acetaminophen, and opioids. The use of NSAIDs (non-steroidal
anti-inflammatory drugs) in children—except for newborns —is not much different
than its use in adults. NSAIDs (such as Motrin) generally are not recommended for babies
who are younger than 6 months old. Acetaminophen (Tylenol), another medicine available
over-the-counter, is commonly used to treat pain in children. Most opioids (such as
codeine) used to treat pain in children also produce good pain relief. These are
prescription-only medicines.
While these medicines are the same as
those given to adults for pain, it is important to know that the dosing is not the same
for children. The dose of medicine will likely be smaller for children than for the
average adult because it is based on the patient’s weight. In addition, pain
medicines for children can be given via different routes (such as nasally or as
lollipops).
Other drugs used to treat pain in
children include antidepressants and patient-controlled analgesia (PCA). Children who are
4 to 6 years old might be able to use PCA with the help of a parent or nurse. Children who
are as young as 7 can independently use the PCA pump.
Other methods of pain relief in
children include epidural analgesia.
© Copyright 1995-2006 The Cleveland
Clinic Foundation. All rights reserved
Chronic Pain
Management in Children and Adolescents Santhanam Suresh, MD
Younger Adults Do Not Appear To Cope as Well With
Pain as Their Elders.A study by
University of Michigan Health System . Jan. 2005 Click Here to View entire study.
A
Cognitive-Behavioral Approach in the Treatment of Children and Adolescents Diagnosed with
Fibromyalgia
Overview
of the November 13, 2001 session sponsored by the Association of Rheumatology Health
Professionals. The team was made up of professionals who are looking for any information
that might help them treat their young patients despite the abscence of research
pertaining to FM and children and young adults.
Participants were affiliated with Schneider Children's Hospital in New Hyde Park,
NY. They included: Gail R. McIlvain-Simpson, MSN, RN, CS; Beth S. Gottlieb, MD; and
Pamela J. Degotardi, PhD.
Dr.
Gottlieb discussed medication options and the role of the physician in treating FM.
She talks about young people wanting to remain active and how to get them to
"pace" themselves as well as how to recognize symptoms. She urges care givers to
search for secondary conditions that could account for some of the symptoms.
Dr.
Gottleib reported that the diagnostic criteria for children and adolescents may differ
from that of adults. She reports that the tender points were most often in the neck and
shoulders, the medial fat pad of the knee, and the joint line of the wrist. She described
Whereas adults must have pain in all four quadrants of the body for more than three
months, children must have pain in only three sites for a period greater than three
months, in addition to five or more activated tender points and three of ten minor
criteria. (headache, IBS, Fatigue and more).
This
program features an explanation of the diagnosis discusses treatment options.
They encourage going to school, maintaining normal daily routines while making
do with fewer extracurricular activities.
They
rely on relaxation techniques, adjusting sleep patterns, psychology to
instill lifestyle changes.
At the
Schneider program, the staff functions as a team made up of a rheumatologist, a
psychologist, a physical therapist, and a primary care physician.
They
discuss medications, trigger point injections and more. Also discussed are alternative
therapies such as biofeedback, acupuncture and supplements.
They
encourage the parents to play an active role in their childrens health and tell them how
to stay calm.
Their
initial session is two hours, and follow-up includes psychological booster sessions and
monthly meetings for six months.
Click
here for more information.
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Recognition of
childhood depression.
Personal reminiscences.J Affect Disord. 2003 Oct;77(1):1-9.
Cytryn L.
GeorgeWashington University School of Medicine 9513 Midwood Road, 20910,
Silver Spring, MD, USA
Prior to 1970, childhood depression was not considered a valid clinical
entity by American psychiatrists. One of the early clues was provided in
the 1950s by the author's observation of depressive symptoms in children
and young adolescents with undescended testicles. This finding was
extended to children with several chronic diseases, many of whom
exhibited depressive symptoms as well. Eventually, depressive
symptomatology was found in children without any physical disorders.
This was followed by the introduction of a diagnostic instrument, called
the Children's Affective Rating Scale (CARS), later converted into a
more formal system called the Child Assessment Schedule (CAS). A
provisonary classification of childhood depression was published in
1972. Our examination of children with depressive disorders has revealed
several modes of family interaction, of which the most important were:
separation from important love objects; depreciation and rejection; and
affective disorders in parents. Several children with bipolar disorder
stimulated our interest in this disorder and led to a pilot study of
children of bipolar, lithium-responding parents. Some of these children
with bipolar illness had a clear-cut response to lithium and were strong
augmenters of the average evoked potentials (EPs). Next, our group
investigated the urinary excretion of norepinephrine and its metabolites
in chronically depressed children who differed from a normal control
group. The foregoing studies, along with major contributions by other
child psychiatrists, eventually led to the acceptance of childhood
depression as a clinical entity in US psychiatry. The acceptance of
juvenile bipolar disorder had to await further research by a new
generation of child and adult psychiatrists.
PMID: 14550930
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Gastrointestinal
distress to serotonergic challenge: a risk marker for
emotional disorder?
Campo JV, Dahl RE, Williamson DE, Birmaher B, Perel JM, Ryan ND.
Western Psychiatric Institute and Clinic, University of Pittsburgh
Medical Center, 3811 O'Hara Street, Pittsburgh, PA 15213, USA.
campojv@msx.upmc.edu
OBJECTIVE: Serotonin is an important mediator of gut sensation and
motility. The authors' aim was to determine whether inadvertent
gastrointestinal (GI) distress to serotonergic challenge predicted
future major depressive and/or anxiety disorders in exposed children.
METHOD: l-5-hydroxytryptophan was administered to 119 prepubertal
children free of psychiatric disorder as part of a psychobiological
cohort study initially designed to examine familial loading for mood
disorder as the exposure of interest. Subjects were followed
longitudinally with standardized psychiatric interviews to identify
new-onset mood and anxiety disorders over 90.3 +/- 29.2 months, with the
average assessment interval being 16.6 +/- 6.2 months. Reports of GI
distress in a subgroup during serotonergic challenge led the authors to
examine GI distress to infusion as an exposure post hoc and to perform
survival analysis using major depressive and/or anxiety disorders as the
outcomes of interest. RESULTS: GI distress to serotonergic challenge was
experienced by 23 subjects, with 7 (30.4%) developing an emotional
disorder during follow-up in comparison to 12 (10.4%) of 96
nondistressed subjects. The distressed group was at significantly
greater risk of subsequent major depression and/or anxiety (p =.026),
even after controlling for family history of psychiatric disorder.
CONCLUSIONS: GI distress to serotonergic challenge in childhood is
associated with heightened risk for subsequent major depressive and/or
anxiety disorders. Studies of serotonergic neurotransmission may aid our
understanding of nonrandom associations between functional GI symptoms
and emotional symptoms and disorders.
PMID: 14560172
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Education of
Children with Disabilities According to administrative data from the U.S. Department of
Education
5.3 million children and adolescents participate in federally supported programs
for students with disabilities. This figure comprises 582,000 young children (under age 6)
in preschool programs and 4.7 million students aged 6 and above attending primary and
secondary schools. In all, 12.2 percent of students enrolled in American schools in the
1993-94 school year were officially designated as having disabilities.
Of the 4.7 million primary and secondary students with disabilities, just over half (51.2
percent, or 2.4 million persons; see Figure 1) are
identified as having learning disabilities, while most of the remaining students have
speech or language impairments (21.2 percent, or 1.0 million), mental retardation (11.3
percent, or 536,000), or serious emotional disturbances (8.7 percent, or 413,000). Smaller
numbers have hearing (63,000), orthopedic (56,000), or visual impairments (24,000). The
remaining 215,000 students include those identified as having multiple disabilities
(108,000), "other health conditions" (82,000), and deaf-blindness (1,000).
Taken together, emotional problems and mental impairments, including learning
disabilities, affect more than two-thirds (at least 71 percent) of American students
identified as having disabilities. Speech and language impairments affect an additional
one-fifth of students with disabilities. By contrast, only a tiny fraction (2 percent) of
primary and secondary students with disabilities have sensory impairments alone.
Mainstream versus segregated education
A large majority of students with disabilities (70.4 percent during the 1992-93 school
year) spend a substantial fraction of their school day attending classes with non-disabled
students. Some 40.5 percent spend at least four-fifths of the day in mainstream classes;
these students are identified in Figures 2 and
3 as
attending regular classes. An additional 29.9 percent spend at least two-fifths of their
class time with non-disabled students, with the rest of their day allotted to special
education in so-called resource rooms.
Most of the remaining students, who spend between zero and two-fifths of their class time
with non-disabled peers, attend separate classes in regular schools (24.1 percent of all
students with disabilities). An additional 5.5 percent attend separate schools or other
facilities, where they have even less exposure to children without disabilities.
Because of a strong belief in the benefits of mainstream education for most children with
disabilities, as well as for their non-disabled peers, recent national policy has promoted
increased placement of students with disabilities in integrated classrooms. As shown in Figure 2, the
proportion of students attending integrated classes at least two-fifths of the day
(regular class or resource room) has increased from 69 percent in 1988-89 to 72 percent in
1992-93. A much larger gain has been made in the proportion of students attending
mainstream classes for the bulk (at least four-fifths) of the school day, which rose from
about 30 percent to 40 percent during that period.
Access to mainstream education varies greatly by the nature of the disability, as shown in
Figure 3.
Nearly all students with speech or language impairments (92.4 percent during 1992-93)
spend significant time in integrated classes, as do three-quarters (78.7 percent) of those
with learning disabilities and two-thirds (66.4 percent) of those with visual impairments.
Roughly half of those with orthopedic, hearing, or emotional impairments spend at least 40
percent of class time with non-disabled students (55.1, 49.2, and 46.3 percent,
respectively).
Those least likely to spend much time in integrated classes are students with mental
retardation (33.9 percent, with only 7.1 percent in regular classes for four-fifths of the
day or more), multiple disabilities (26.5 percent), or deaf-blindness (22.4 percent).
Educational outcomes
According to data for the 1991-92 school year, a majority (57.3 percent) of students with
disabilities leave secondary school as high school graduates. Most of these (43.9 percent
of the total) graduate along with their non-disabled peers, receiving an ordinary diploma.
The remaining 13.4 percent graduate via a certificate of completion or a modified diploma.
The likelihood of graduating depends on the nature of the disability, as does the means of
graduation --- diploma versus certificate (see Figure 4).
Students with sensory impairments are the most likely to graduate, with nearly
three-quarters of such students (73.0 percent of those with hearing impairments and 72.6
percent of those with visual impairments) doing so, mostly with standard diplomas. Almost
two-thirds of students with orthopedic impairments, mental retardation, multiple
disabilities, and learning disabilities graduate (66.2, 63.8, 63.0 and 60.5 percent,
respectively), but only 36.1 percent of students with mental retardation and 38.7 percent
of those with multiple disabilities receive ordinary diplomas. Half (51.3 percent) of
students with speech or language impairments graduate, while only one-third (34.6 percent)
of those with serious emotional disturbances do so, the lowest graduation rate for any
identified category of disability.
Post secondary education
Department of Education statistics from 1992-93 indicate that 6.3 percent of college
undergraduates and 4.0 percent of graduate and professional school students identify
themselves as having a disability. Only specific causes of disability were asked about:
learning disabilities, visual and hearing impairments, orthopedic impairments, speech
impairments, and health-related disabilities. Because approximately 8.4 percent of primary
and secondary school students have conditions from the above list, according to
administrative data, it is probable that students with disabilities are less likely to go
on to college than their non-disabled peers, and still less likely to continue their
education through graduate or professional school.
A 1990 survey of former special education students indicated that 16.5 percent had gone on
to college and 14.7 percent had entered vocational programs. Students with visual
impairments were more likely than any other disability group to go on to college (53.9
percent), while those with mental retardation and multiple disabilities were least likely
(2.5 and 8.0 percent, respectively).
NOTES: Data in this
abstract come from:
U.S. Department of Education. National Center for Education Statistics. 1996. Digest of
Education Statistics 1996. NCES 96133. By Thomas D. Snyder. Washington, DC.
U.S. Department of Education. 1995. Seventeenth Annual Report to Congress on the
Implementation of the Individuals with Disabilities Education Act. Washington, DC.
PUBLISHER: Published by U.S. Department of Education, National Institute on Disability and
Rehabilitation Research (NIDRR). CREDITS: AVAILABILITY: The full text of this public
domain publication is available at the Department's home page at www.ed.gov
Individuals with disabilities may obtain this document in an alternative format (e.g.,
Braille, large-print, audio tape, or computer diskette) on request.
For more information, please contact:
U.S. Department of Education
OSERS/NIDRR
Room 3431, FB6
Washington, DC 20202
WWW.ed.gov"
E-mail: david_keer
Telephone: (202) 205-5633
Individuals who use a telecommunications device for the deaf (TDD) may call the Federal
Information Relay Service (FIRS) at 1-800-877-8339 between 8 a.m. and 8 p.m. Eastern Time,
Monday through Friday.
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Personalized
Oral, Jaw-Positioning Appliance Improves Childhood Sleep Apnea
January 10, 2002
(American Thoracic
Society) -- The respiratory symptoms of a group of children with obstructive sleep apnea
(OSA) either completely regressed or improved considerably following their use for 6
months of a personalized oral, jaw-positioning appliance, Italian researchers reported.
After a 6-month trial,
the respiratory symptoms of all 14 treated patients improved considerably, with half
undergoing complete regression of their symptoms. The results of the sleep study test
after the 6-month trial showed that apnea-hypopnea index scores were significantly lower
for the treated children but unchanged for the control group of 9 children. (All
appliances of the type studied work their therapeutic action by enlarging the upper
airway.)
All young people in
the treated group were fitted with an acrylic resin oral bite plate for lower jaw
(mandible) positioning. All appliances were designed by an orthodontist to correct each
patient's mandibular malpositioning in three spatial planes. They were checked monthly by
the orthodontist to monitor functioning of the oral appliances.
The research appears
in the first issue for January of the American Thoracic Society peer-reviewed American
Journal of Respiratory and Critical Care Medicine.
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Teen
Chronic Fatigue Symptoms Studied
NEW YORK, Jan 05
(Reuters Health) -- Adolescents with chronic fatigue syndrome have characteristic changes
in heart rate and blood pressure in response to changes in posture, according to results
of a study published in the January issue of Pediatrics.
These findings suggest
that the symptoms of chronic fatigue syndrome (CFS), such as debilitating fatigue, muscle
and joint pain, headache, sleep disturbances, cognitive difficulties, and post-exercise
malaise -- may be due to a disorder in the autonomic nervous system.
The findings come from
a study of 26 adolescent CFS patients, ages 11 to 19 years, conducted by Dr. Julian M.
Stewart and associates at the New York Medical College in Valhalla, New York.
Study participants
were tested on a tilt table, a bed that can be raised from horizontal to a near-vertical
position while heart rate and blood pressure are monitored. Researchers compared the CFS
patients to 13 healthy "control" teenagers and 26 teens being evaluated for
fainting episodes who were otherwise healthy.
The tilt test was
deemed positive if the participant had a significant drop in blood pressure, with or
without a decline in heart rate, or severe symptoms of dizziness, weakness and fatigue,
headache, nausea, and retching.
For 25 of the 26 CFS
patients, the tilt test elicited dramatic changes in heart rate and blood pressure. Of the
25 patients, 15 had tachycardia -- increased heart rate -- with significant drops in blood
pressure, and 3 patients had tachycardia alone.
The other 7 patients
fainted during the test as their blood pressure dropped and heart rate declined to less
than 75% of the resting heart rate.
Only 18 of 26 patients
with fainting episodes had a positive test, as did 4 of 13 healthy controls.
Orthostatic
hypotension, or low blood pressure due to change in body position, "may contribute
importantly to fatigue" in patients with CFS, Stewart and his colleagues write.
SOURCE: Pediatrics 1999;103:116-121
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A Guidebook
By and For Young People with CFIDS.
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).
Research on
Children with CFIDS Published By David M. Hoh Originally published in Youth Allied By
CFIDS, Summer 1997 Volume 3, No. 2 of the Journal of Chronic
Fatigue Syndrome reports on research involving children and adolescents with CFIDS
Heart
Rate, Blood Pressure Problems Triggered by Standing Upright In Teens With CFS Research findings may help explain
debilitating symptoms, excessive school absences
VALHALLA, NY —
Researchers have found that when teenagers with chronic fatigue syndrome (CFS) 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 legs and 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 percent of CFS patients (23 of 25)
experienced OTS and the remaining eight percent (two of 25) fainted. None of the controls
had OTS, although 70 percent of adolescents with a prior history of fainting and 31
percent of healthy controls fainted. In contrast to the OTS response of the CFS patients,
in which standing caused the heart to race, the controls who fainted had a vasovagal
response, in which both heart rate and blood pressure fell.
In addition, standing
upright caused the legs and feet of CFS patients to swell and turn blue, meaning that
blood was pooling in their legs, depleting the remainder of their body (most significantly
the heart and brain) of oxygen. This response was seen in 80 percent of the CFS patient
group, but only five percent of the fainting controls and none of the healthy controls.
The researchers also
compared the CFS patients to adolescents with OTS who did not meet the U.S. Centers for
Disease Control (CDC) criteria for CFS. Although they had similar heart rate and blood
pressure responses to the test, the adolescents with CFS tended to respond sooner and more
often have blood pooling in their legs. These may be clues to why the CFS patients were
sicker than any of the other groups, missing an average of 40 percent of school days,
while the OTS patients and controls only missed an average of 12 percent and five percent,
respectively.
"This study helps
us understand why young people with CFS have trouble standing and sitting upright, and why
that makes it so difficult for them to attend school on a consistent basis," said
Kimberly Kenney, Executive Director of The CFIDS Association of America. "It also
provides an important clue to the pathophysiology of CFS. Additional research will
determine the prevalence of this abnormality in CFS patients of all ages."
Reference: Patterns of
orthostatic intolerance: The orthostatic tachycardia syndrome and adolescent chronic
fatigue. Julian M. Stewart, MD, PhD, Michael H. Gewitz, MD, Amy Weldon, Jose Munoz, MD.
Journal of Pediatrics, August 1999, pages 218-225
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The
Desperate Moments: Suidical Thoughts By Sharon Walk Originally
published in Youth Allied By CFIDS, Spring 1996
"It's like you're standing on the edge of a cliff and just one inch in front of you
is this sheer drop - straight down, and you're just teetering there one deep breath away
from going over." - Sisters: "A Path Through the Snow," NBC-TV
Almost everyone I know
with CFS has thought about suicide at some point. In the book Hope and Help for Chronic
Fatigue Syndrome, a woman was quoted as saying, "It's hard bucking illness and
disbelief every day. You begin to feel very little desire to continue. I know that I have
gone to bed thinking seriously, 'please God, let me go to sleep and just not wake up in
the morning.'"
All thoughts of
suicide, no matter how they are expressed, need to be taken seriously. Thoughts of suicide
are both a wish for freedom and a cry for help. It is common for people with any chronic
illness to get depressed. Sometimes people with CFS try to ignore these feelings, but
there is nothing wrong with getting depressed. It doesn't mean CFS is not a physical
illness, and it doesn't mean that you're crazy. Depression is a totally normal reaction to
a stressful situation, and having CFS is very stressful. Although depression makes a
person more likely to have suicidal thoughts, it is possible to have them without being
depressed. For this article, I've decided to talk about four different situations that I
feel represent the four categories that suicidal thoughts fall into. You can probably
relate to one or more of these categories.
Fleeting Thoughts
First, there are suicidal thoughts without depression. These thoughts are more common than
you may think. Nearly everyone, healthy or sick, has them. They often appear as a passing
thought that just pops into your head out of nowhere. These thoughts can be most dangerous
in people who tend to act on impulse. Although the thoughts are not really serious and you
really don't want to die, if you are the kind of person who acts first and thinks later,
you could do something you don't want to do. Talk to an adult who cares and to your pen
pals; they will understand and may be able to help you deal with it. If these thoughts
continue or become more specific (like if you have a plan), call and get some help
immediately.
A Mild Depression
Second, there is a mild depression that most of us go in and out of. It worsens at
stressful times, when you're extra sick or sometimes with no apparent reason. It comes and
goes, usually lasting less than a couple of weeks. You can distract yourself from it and
little things can cheer you up. During these down times you may have an increase in
suicidal thoughts. Again, talk to your pen pals and an adult that you trust. Consider
going to a support group. Going to a counselor may help you find a way to keep your mood
more stable, but make sure to find someone experienced in treating young people with
chronic illnesses. Your doctor or a CFS support group can probably help you find a
counselor.
A Deeper Despair
Third, is a deeper, longer lasting, more serious depression. This kind of depression can
be expressed in a variety of ways: changes in eating or sleeping habits, fatigue, feeling
sad. All of those can also be symptoms of CFS, though. Because of that, I use the
following criterion to determine if someone with CFS is deeply depressed: his or her
interest in life. If you find that you are losing interest in things you usually like to
do or wish you could do, that is a strong sign that you have a problem with depression.
Also, you may have more intense thoughts of suicide, including thinking of specific
methods and having stronger urges.
If you find yourself
in this category you probably have a medical problem with depression. You should seek
professional help immediately. There are medications that can help you get through it.
Seeking help or needing medication is not a sign of weakness, it is a sign of strength.
You are saying, "I will survive this illness, I just need some help to do it."
The Crisis Moments
Last, there are what I call crisis moments: times when your depression is so deep and
thoughts of suicide are so strong that you are in real danger of hurting yourself. One CYA
member told me about her desperate moment, trying to fight the urge to overdose. She had
the pills in her hand. The feelings were so intense she was scaring herself.
In moments like these,
you need help. And you need help right then! Almost every area has a 24-hour suicide
prevention hotline. CALL!! Its staff can help you through the crisis and put you in touch
with a counselor who can help you. I've been there and I promise you it will get better.
You just have to get through the crisis.
Find Something to Want
This dialogue from the TV show Sisters was spoken by a character about her crisis moment.
"I was crazy that night trying to find a way to do it. and I had this crummy old TV
on in the background and I heard that Five Easy Pieces was starting. And I stopped to look
at it, just for a second, and then I started watching, and then two hours had passed. Then
the announcer said that The Last Picture Show was going to be up next, and I wanted to see
that too.
"But, the point
is that I wanted something. Even something as dumb as an old movie on TV. And the next day
it was something else, and the day after that, and the day after that. Until I found
myself actually looking for something to want because I knew that was what was going to
keep me alive."
You see, there is
always something to want, a reason to keep going. Seeking help during a crisis moment is a
sign of your inner strength, of still having - or wanting to have - a reason to keep
living, despite battling CFS and emotions that are difficult to work through.
Trust in your friends
who are also fighting CFS. Turning to counseling or other medical help is not saying that
you don't want to confide in your friends, but that you need more help than they can give.
They will understand when you tell them that your feelings have gotten persistent or
frightening, and they will not let you down. They, too, have experienced feelings of
sadness, frustration or helplessness during difficult times. Share your feelings and work
through them together. By sticking together we will all be able to survive the bad times.
And, finally, never give up!!!
Return
to Top
A
Sourcebook for Teachers of Children with ME/CFS &/or FM
ADVANCING CIVIL RIGHTS FOR PEOPLE WITH
DISABILITIES CHILDREN WITH DISABILITIES AND FAMILY SUPPORT SERVICES
Benefits For Children With
Disabilities. New! This booklet is written
primarily for the parents and caregivers of children with disabilities and adults disabled
since childhood. It illustrates the kinds of Social Security and Supplemental Security
Income (SSI) benefits a child with a disability might be eligible for and explains how we
evaluate disability claims for children.Millions of children already get benefits from
Social Security. This will help you decide if your child, or a child you know, is eligible
for Social Security or SSI.
Attending School
with CFIDS/FMS. Hints, tips and a letter you can ask your doctor to sign to explain
your condition and limitations to the educators.
The
Three Ways A Child Can Get Benefits From Social Security Or SSI
CFS and School
Success: What parents can do. An explanation of law 94-142. Special education needs
and more.
The Young Person with CFIDS Parent/Teacher Bridge Builder - Good
website.Use the message board to get support and information from other parents and
educators.
Return
to Top
The
Health Site.org. School health projects. Teen reporters, updated information.
Running a Support Group for Youth and their
Families
Juvenile Fibromyalgia
and CFIDS. Site has up to date studies and information about children, teens and young
adults.
Teen & Young Adult Guide to FMS. This
is an excellent site for information, support, suggested reading and more.
Starting a Support Group for Youth and Parents
Patchworx Online Community provides fun
and support for young people with disabilities and chronic illness.
Return
to Top
Edited by Dr Anne MacIntyre
This document forms part of the material
being used as "work in progress" by the
Chief Medical Officer's Working Group on CFS/ME
Jane Colby LAMSC; Cert Ed
Dr Alan Franklin FRCP; FRCPCH; DCH; DRCOG
Dr Anne MacIntyre MB; ChB
Dr Lyn Michell MSc; PhD
Jill Moss BA; MEd (Special Needs)
Jacqueline Siner BA; MA; MSc; CPsychol; AFBPsS
Dr Nigel Speight MA; MBBCh; FRCP; FRCPCH; DCH
February 1999
For further information on specific contents, please contact:
Dr Alan Franklin (Medical Section) at the ME Association
Jane Colby (Education Section) at Young Action Online
Jill Moss (Social Services Section) at AYME
1 Introduction
2 Medical Section
2.1 Clinical presentation and diagnosis
2.2 Neurocognitive and psychological problems
2.3 Management
2.4 Epidemiology
2.5 Prognosis
3 Education Section
3.1 Introduction
3.2 Purpose of education
3.3 Effects of ME on cognitive function
3.4 Effects of ME on physical performance
3.5 Implications for school based learning
3.6 Special educational needs
3.7 Wider implications for education
3.8 Joint health-education plans
3.9 Social education
3.10 The multidiscliplinary approach
3.11 Statementing
3.12 Assessment and examination
3.13 Post 16 education
Appendix to education section
4 Social Services Section
4.1 Statutory social services
4.2 Non-statutory social support services
5 Service Facilities
6 Summary
Appendix A Case Studies
Appendix B Authors and Referees
Appendix C Diagnostic Descriptions
1 Clinical features of myalgic encephalomyelitis (ME) (Ramsay
1986)
2 Diagnostic criteria for chronic fatigue syndrome (Fukuda et al
1994)
3 References
4 Resources
1 Introduction
Background to this document
The National Task Force on Chronic Fatigue Syndrome / PostViral Fatigue
Syndrome / Myalgic Encephalomyelitis published a report in September 1994.
This was followed by a report from the Royal Colleges of Medicine,
Psychiatry and General Practice, published in October 1996. Although there
were sections in each report about the illness in children and young people,
it has become evident that there is a need for more detailed information
about diagnosis, management, and education of young people with ME. These
guidelines have been written by members of the medical and educational
professions who understand the problems this illness causes for children and
their families.
In recent years, ME/CFS has increasingly been accepted as a clinical entity.
In July 1998 the Chief Medical Officer, Sir Kenneth Calman, announced before
retiring that the Department of Health recognised the existence of this
illness, and that a working party would be established to produce advice and
information .
Our intention is to provide information about the existence and diagnosis of
the illness in children, for all professionals and families who are involved
with young people suffering from ME. Although in these guidelines published
evidence is referred to where it exists, much of the information is
distilled from the clinical experience and observations of practising
paediatricians who have cared for many young patients with ME/CFS.
Names of the illness
An illness with clinical features of muscle pain, neurocognitive problems
and exercise induced fatigue has existed for centuries. In the 20th century,
epidemic outbreaks were recorded from 1934 until the 1950s. Earlier names
included 'English sweats', 'epidemic neuromyesthenia', and 'atypical polio'.
The term myalgic encephalomyelitis (or ME) was coined in 1956, (Ramsay 1985)
following a series of world-wide outbreaks, and ME has been well documented
in children. The name chronic fatigue syndrome (CFS) was preferred for the
diagnostic criteria developed in the USA in 1988. CFS is the name used by
doctors internationally, especially for research, however, the illness is
still called ME by patients and many doctors. We believe the name 'myalgic
encephalomyelitis' (or encephalopathy) is more appropriate than 'chronic
fatigue syndrome', as it describes a specific condition with muscle and
neurological symptoms, not only fatigue. In this document both names may be
used.
Clinical observations and research evidence point to ME being a real,
organically based illness which affects many organs in the body but
particularly the brain. As with neurological disorders such as brain tumour
or multiple sclerosis, ME may produce bodily and neuro-cognitive symptoms.
The brain disturbance leads to cognitive problems, autonomic nervous system
dysfunction, and emotional symptoms. Secondary psychological problems due to
the effects of the illness may complicate the picture, as with any chronic
condition.
Most paediatricians with an interest in this illness comment on the
remarkable resilience of children with ME. Many children and their families
show no psychological disturbance, in spite of sometimes severe and
prolonged illness in the child. However children with ME do become very
frustrated that they cannot take part in normal activities at home and at
school.
The most important first step is to establish the diagnosis. Medical
management is based on recognition of the symptom picture and hence
diagnosis, followed by an explanation about the illness, with symptomatic
treatment and support by other professionals. The majority of children make
some recovery, especially if they are emotionally supported and allowed to
rest. However in a few children, ME may lead to chronic illness and severe
disability.
Potential problems for any child with long term illness include loss of
schooling and social contact with peers. There are conflicting needs of
ensuring some level of ongoing education, while allowing the child to
recover without being pressured into returning to school too quickly, or
meeting unrealistic goals. Some pupils may be too severely affected to
contemplate any form of education.
"No-one who has experienced this illness, or who has had the responsibility
of caring for a family member who has the misfortune to suffer from it, can
have any doubt not only about the extent of the pain and distress it can
cause, but also as to the disastrous effect it can have on social
relationships and life in the community. This is particularly the case among
child sufferers, for whom the effect upon their educational development and
social well-being may be catastrophic, particularly when child and family
encounter unsympathetic professionals. The consequences may last for years".
(Pheby, 1997)
2 Medical Section
2.1 Clinical Presentation and Diagnosis in Children and Adolescents
"Without diagnosis there is no rational treatment" (Carl
Gerhardt 1873)
2.1.1 Diagnosis is important
One of the greatest sources of anxiety to many parents is to observe a sick
child whose illness is not recognised and named. Parents may fear their
child has a serious or malignant disease which the doctor is missing, and to
be told "all the tests are normal" without being given a diagnosis can be
extremely frustrating. Furthermore, when children are unwell, but at the
same time their illness is not validated or is undiagnosed, this discrepancy
may affect how they are treated by both family members and professionals.
2.1.2 Diagnostic criteria
Special diagnostic criteria for children and adolescents have not yet been
defined. The diagnostic criteria for CFS in adults (Fukuda 1994) were
defined chiefly for research purposes. Young patients may not always fulfil
CFS criteria, and yet still have a typical clinical picture of ME/CFS. (See
Appendix C for description of ME - Ramsay 1986 - and the CDC 1994 criteria
for CFS). There are some clinical features in children that are different
from those in adults, especially in children under 10 years of age. The
onset is often more gradual in young children, and their daily behaviour is
more variable, without a clear history of an initiating infection. Certain
symptoms - intractable headache, abdominal pain, loss of appetite, and
nausea - are more common in children. There is no clinical difference, once
the illness is established, between children whose onset is rapid, usually
following an acute febrile episode, and those with a gradual onset, as is
seen more often in young children.
The diagnosis is more difficult in young children because they cannot
articulate symptoms such as fatigue and cognitive difficulties. Parents and
teachers need to observe and assess symptoms such as onset of pallor and
exhaustion, both in and out of school. Their observations of children or
pupils whom they know well should be respected.
It is better for the child and family to allow for a firm diagnosis after 2
to 3 months of symptoms, instead of the minimum of 6 months as required for
adults (Royal Colleges 1996), because good management can be instituted
early in the illness and might prevent further deterioration.
2.1.3 Common Symptoms and Signs
1. The commonest feature for diagnosis of ME is persistent fatigue. This
is better described as exhaustion, asthenia or weakness, which is usually
post-exertional, developing up to 3 days following moderate effort, and is
not relieved by rest/sleep. The fatigue may appear as orthostatic
intolerance1 (dizziness or faintness when upright) rather than simple
tiredness or sleepiness. The fatigue may be physical or mental, can be
severe and often fluctuating, and leads to significant reduction in normal
activities.
2. Severe malaise (feeling 'poisoned'), particularly following physical
or mental exertion
3. Persistent headache, not responding to painkillers.
4. Disturbance of normal sleep pattern. Hypersomnolence is commonest
initially, often progressing to sleep reversal, or else insomnia.
5. Neurocognitive disturbance is invariably present (e.g. loss of
attention, concentration, and short-term memory, forgetting names, inability
to understand a written paragraph).2
6. Visual disturbance (eye pain, blurring, especially when reading).
7. Sensitivity to sound and/or light.3
8. Recurrent sore throat and/or swollen glands (misleading in children,
who develop them with every infection. Prolonged adenopathy may need
investigation to exclude TB or malignancy).
9. Muscle or joint pain, especially of lower back and lower limbs.
10. Nausea, abdominal pain, loss of appetite.
11. Balance disturbance, or dizziness on sudden change of position.
12. Altered subjective temperature regulation (inappropriate sensations of
fevers or chills, night sweats), and maybe objective reversal of
sleep/temperature rhythms.
13. Facial pallor, especially with the onset of severe fatigue (Ramsay
1986).
14. Altered skin sensitivity, paraesthesiae (numbness, tingling),
transient rash..
15. Mood changes (irritability, depression, anger and frustration) that
are out of character.
1 Measured by recording blood pressure recumbant, then at 5 minute
intervals standing still. In health, blood and pulse pressures can be
maintained while standing for at least one hour.
2 This disturbance of neurocognitive function can cause acute distress to
adolescents who are usually keen to return to school, but find they are
unable to function normally. It is not appropriate to return a child to
school immediately, without further educational assessment. That this
disturbance is part of the illness and not due to psychiatric co-morbidity
has been confirmed by Deluca and colleages (Deluca 1997).
3 These are part of the great difficulty children with ME have in coping
with normal input - whether cognitive, visual, aural or visceral - because
of rapid brain fatigue.
A marked feature of ME is the fluctuation of symptoms from day to day, and
the tendency for relapses and remissions over months. There is a combination
of key symptoms that is remarkably similar from patient to patient:
Post-exertional fatigue, malaise and cognitive dysfunction are invariably pr
esent. It is important for medical professionals to recognise the
multiplicity of symptoms that commonly occur, as well as 'fatigue'.
Severe cases of ME. The more severe forms of the illness in children and
adolescents include symptoms such as dizziness, unremitting headache, severe
muscle spasms that may require splinting to prevent contractures in the
hands or feet, shaking episodes or pseudo-seizures without loss of
consciousness, difficulty swallowing and paresis or paralysis of limbs,
bladder irritability and a disturbed mental state.
2.1.4 Differential Diagnoses
Conditions which may be confused with ME/CFS should be excluded:
1. Anaemia (severe)
2. Immunodeficiency conditions (AIDS may be congenital in young children)
3. Chronic infection e.g. TB, toxoplasmosis.
4. Migraine
5. Hypothyroidism, hypopituitarism, and Addisons disease
6. Juvenile rheumatoid arthritis (Still's disease)
7. Chronic renal disease
8. Chronic hepatitis
9. Crohn's disease
10. Gluten sensitivity
11. Cerebral tumour
12. Subdural haematoma
13. Anorexia nervosa
14. Chronic abuse (all kinds)
15. Childhood depression
16. Somatisation
17. School phobia
Many of these conditions are rare, but may be worth excluding in individual
patients.
ME/CFS compared with Depression, Anorexia Nervosa, School Phobia, and
Somatization.
It is important to distinguish ME from primary depressive illness (which can
occur in childhood), anorexia nervosa, and phobic anxiety state. Primary
depression in childhood may be difficult to diagnose, and severe depression
in childhood can occur in its own right as a biological condition, for
example at the beginning of a psychosis. If emotional symptoms are apparent,
it is important to explore their origin. For example, were they present
before ME started, or did they coincide with the onset of the illness? Or
has depression developed after months or years, secondary to the persistence
of the illness?
There is uncertainty about the role depression might play in young patients
with ME. Family dynamics form a good guide, and a well functioning family is
less likely to produce a depressed child. It is important to look at the
intra-familial communication and autonomy that existed before the onset of
symptoms of ME, before assuming that depression could be the cause of the
child's symptoms. The modern trend is to regard most depressive symptoms in
young people as a mental reaction to an underlying chronic organic illness,
or to severe adverse circumstances, and many children and young people
eventually develop depressive symptoms with any chronic illness. (Koplewicz
and Klass 1993)
It is quite common for children and adolescents to develop anorexia
secondary to ME. This is frequently due to nausea, and/or to muscle fatigue
which affects chewing and swallowing. This loss of appetite and reduced
intake might be confused with anorexia nervosa, especially in girls in early
puberty. Anorexia nervosa is associated with a distorted body image, self
induced vomiting, progressive weight loss, and frequently abuse of
laxatives.
It is important to make the distinction early if weight loss occurs. The
most important distinguishing feature of anorexia nervosa is a distorted
body image and a phobic refusal of food, coupled with a fear of getting fat.
Although weight loss is commonly seen, some young people with ME gain
weight, and obesity may be associated with comfort eating, lack of exercise,
or possibly water retention .
Phobic anxiety state, particularly school phobia, is associated with panic
attacks and use of the avoidance response about the most feared situation.
Symptoms associated with school phobia usually resolve during weekends and
school holidays. This does not occur with ME, whose symptoms may be worse at
weekends and persist through school holidays, when children try even harder
to tackle the activities they enjoy face on with the family. The main reason
that the pupil is reluctant to go to school is because of rapid onset of
fatigue, myalgia, and loss of concentration after a short time in class.
Somatization disorder may resemble ME in that the patient has multiple
symptoms which cannot be explained by any known medical condition or by use
of abusive substance or medications. In ME there is typically no secondary
gain from having the symptoms, whereas this is a common feature with
somatization. When evaluating the child's bodily symptoms, it is important
to be aware that a child often cannot articulate about the condition, and
may be stressed by the attitudes of others to the illness. In a few cases,
somatization could be difficult to differentiate from ME, and there may be
hidden stresses; a child can be unwilling or unable to communicate about
sources of anxiety.
A study in the US evaluated the symptoms, severity, social support and ways
of coping in 69 adolescents with ME/CFS. The results showed nothing to
suggest that ME is primarily a psychiatric or psychosomatic illness, nor
that adaptive coping styles reduced the severity of the illness. (Bell,
1996). However exposure to stress does increase the severity of the
symptoms. The existence or incidence of co-morbid psychiatric illness in ME
patients under 20 years of age has not yet been formally established, but is
probably present at the same incidence as in the general population.
2.1.5 Investigations
Medical investigations should exclude conditions such as those listed above,
and might include as appropriate:-
1. 24 hr temperature record, pulse and BP (lying and standing)
2. Growth / weight record
3. Urine microscopy and culture if positive
4. Full blood count and ESR (ESR is low or normal)
5. Quantitative immunoglobulins (raised IgM indicates active infection)
6. C reactive protein
7. Viral titres (within 3 months), ASOT and throat swabs
8. Liver function tests, urea and electrolytes
9. TSH, T3, T4 (thyroid function)
10. Where indicated, CT and/or MRI head scan, SPECT, or PET4 scans.
11. Ultrasound of abdominal viscera for severe abdominal symptoms.
12. In some cases a psychiatric assessment is needed to identify
depression, anorexia nervosa or other psychological conditions that might
confuse the diagnosis. For this there needs to be liaison between paediatric
and mental health services.
4 SPECT and PET scans are potentially helpful diagnostically; they can
differentiate between ME/CFS, depressed patients, and healthy individuals,
by the demonstration of different perfusion patterns over the cerebral
cortex, the brain stem and basal ganglia, corresponding with the areas of
disturbed brain function. (Schwartz 1994; Costa 1995) However, these tests
would be technically challenging in small children, and at present are only
used for research.
Because the diagnosis of ME/CFS is based on clinical features, excessive
investigation should be discouraged, and is unlikely to profit the child or
investigator. Careful and long-term follow-up is essential, either to
confirm the diagnosis, or to review each symptom in case a second disease
process is operating.
2.1.6 Pathogenesis of the Illness
There is still uncertainty about the patho-aetiology of ME and CFS. Several
studies have suggested that viruses may initiate the response (Komaroff
1996) but there is little laboratory evidence to suggest persistent
infection (Gow 1997). Clinically there are similarities between post-polio
syndrome and ME/CFS (Bruno 1996), suggesting a common response to specific
enterovirus infection. In some patients there is reduced circulating blood
volume, which contributes to the postural hypotension (dizziness and
confusion when upright) so frequently experienced (Streeten and Bell 1997).
Low dose chemical exposure is known to have a damaging effect on the central
nervous system, and ME is clinically similar to illnesses resulting from
known organophosphate exposure (Behan 1997), and to Gulf War illness (Jamal
1996). Publicity has been given to the possible role of OP poisoning in
causing ME in some children who have been treated for head lice using a
pesticidal anti-lice shampoo containing OPs.
Stress, in its broadest meaning, is a precipitant of ME/CFS, and in most
cases is probably a co-factor with other triggers that include infection,
immunisation or chemical exposure.
In trying to co-ordinate the many research findings, Professor John
Dickenson (1997) has drawn attention to the effects of damage to the
Reticular Activating System in the mid-brain and brain stem, producing many
of the reported symptoms of ME. Some researchers have proposed that
pre-existing psychiatric disorder, mainly depression, may be a predisposing
factor for ME/CFS (Cope 1994) but there have been no studies to date which
implicate this causative factor in children. Kopelwitz and Klass (1993)
state in their book on Childhood Depression that nearly all children with a
chronic illness eventually develop depressive signs, even if they are
secondary to an original organic illness.
The illness has consistencies that allow it to be diagnosed as an entity;
however it is becoming increasingly obvious that it may be triggered by a
number of different factors. There may also be a genetic predisposition, in
view of the not uncommon occurrence of ME affecting more than one member of
a family.
2.2 Neurocognitive and Psychological Problems
2.2.1 Effects of the illness on the child
ME is an illness that affects the central nervous system, and therefore has
identifiable effects on brain functioning. Cognitive disturbances are part
of the illness, and produce lack of concentration, short term memory loss,
confusion, and also nominal aphasia. In addition to this, many children with
ME suffer episodes of mood disturbance, such as depression, irritability,
frustration and anger, and these may be part of the brain disturbance as
well as being secondary to the effects of the illness on daily life. Because
of the chronicity of the illness there is frequently loss of normal
childhood and adolescent activities (school, friendships, sports, going out
with peer groups). This can lead to isolation at home, being 'passed by',
and sometimes to depression or despair.
One serious consequence is that adolescents with ME may remain at an
immature level emotionally, and become too dependent on a parent, usually
the mother. But more often, children who suffer from long and serious
illness develop an emotional maturity beyond their years. Such maturity may
however be unhealthy, and can be associated with loss of normal childhood
and adolescent stages of emotional development.
One outstanding mood in the child with ME is frustration, rather than
depression. In a small number of cases, abnormal illness behaviour or total
withdrawal may develop. These behavioural problems can also feature in other
chronic illnesses and are not confined to ME, or to children.
2.2.2 Effects of the illness on family and friends
In most chronic illnesses, the patient and family's attitude to the illness
follows a series of changes. Doubts regarding the nature of the diagnosis
may arise in some family members, (but usually not mothers), leading to
denial, anger, depression and eventually acceptance. A family member's
belief about the illness may influence the sick child's response. The
illness causes total disruption to normal family life, leading to sorrow,
depression, and loss of spontaneity. ME has a huge impact on the family.
Conflicting advice from health professionals can mean that the parents are
confused: on the one hand they may be encouraged to treat the child as being
ill, on the other hand they may be urged to treat the child as normally as
possible. Familial overprotection may need to be considered if an attitude
of rigid obstruction develops to prevent medical intervention, but
Munchausens syndrome by proxy is rare and should not normally be considered.
It is the normal response of a parent to be concerned about a sick child,
and to explore all possible means to secure recovery.
Parents of children with any chronic illness may be perceived as being
overprotective by health and education professionals, and this inappropriate
accusation is often levelled at the families of young ME patients by
professionals who do not understand or accept the profound impact of this
illness on the parents. The emotional issues arising from ME are often
compounded by ignorance, prejudice, or conflicting opinions of the
professionals involved with child and family. Sometimes members of the
extended family, such as grandparents (who may hold old fashioned views
about illness) may be influential in determining the parents' responses to
the child's illness.
Most parents find managing their child's illness extremely difficult. For
example enforcing the best balance between rest and activity, and of finding
a balance between giving some independence and privacy and giving enough
support without encroaching into the child's needs to have some personal
control. If a child does not improve, or deteriorates, the parents may feel
they are somehow to blame, or else may blame outside professionals who have
been trying to help (either of which may be correct). Ongoing medical
support and good communication from the medical profession are very
important.
2.2.3 Effects on siblings
Research has shown that the brothers and sisters of children who are
seriously ill can suffer adverse effects. In a study (Sloper,1996) of the
siblings of child cancer sufferers, 6 months after diagnosis 24% of siblings
were showing adjustment problems and behavioural difficulties. In interview
the siblings said they felt resentment at the lack of attention they
received, and guilt that they felt resentful. Many mentioned their sadness
at the loss of normal family life. Although there are differences between
these conditions, siblings of children with ME are likely to experience
similar effects.
2.3 Management
2.3.1 The first step in management should be a diagnosis, which should be
based on the pattern of symptoms over an appropriate period of time (2-3
months or longer), and will also involve the exclusion of other conditions
which could be causing fatigue and other symptoms. The doctor who confirms
the diagnosis should take time to explain the nature of the illness to the
patient and the family, how it will affect the child's future progress and
prospects, and its impact on the family.
Recognition of the illness by the medical practitioner will help to
establish a bond of trust between the doctor, patient and family, and it is
important to recognise the value of this in the ongoing management. Where
the diagnosis is uncertain, a further opinion should be sought from a
colleague with more experience or specialist knowledge.
The patient and family may need financial and welfare support, such as DLA
and carers' allowance, and community care of a chronically ill child may be
difficult to achieve. (See Social Services Section).
If possible, most children should be managed in their own homes, under the
supervision of their local primary care teams, with appropriate out-patient
support where possible from a paediatrician with experience of the illness.
Numerous GP surgery visits and hospital appointments can be energy and
emotionally draining, especially if the outcome of such consultations is
unhelpful. However most families find it helpful to see the family GP
regularly to monitor progress and to assess any new symptoms (which could be
due to other illnesses).
However, we recognise that at present many GPs lack experience in the
recognition, diagnosis and management of ME/CFS, and hope that these
guidelines may go some way to informing health care professionals about the
illness in childhood. The GMC has issued appropriate guidelines (Duties of a
Doctor, 1995) which could help to prevent the confrontational attitudes
which often seem to develop in the medical management of ME/CFS.
Reference to child psychiatrists may be perceived by the family as
threatening, although in practice many psychiatrists fail to find any
psychiatric illness in children with ME referred to them. A psychiatric
opinion may form part of the initial assessment, to identify possible
aggravating psychological factors. If stress has been a causative factor
then this needs to be addressed, as do any continuing emotional pressures on
the child from family or school.
Professional mental health services, such as family therapists who
understand the severity and impact of the illness, may be able to help
children and families deal with the emotional problems that can develop in
the child, parents or siblings, as with any prolonged childhood illness.
(Koplewitz and Klass 1993)
If a child has to be admitted to hospital for investigations or intervention
for an acute problem (e.g. instituting naso-gastric feeding) due to ME, this
should ideally be on a short term basis, to a medical paediatric unit, with
access to psychiatric input ifthis is needed. The experience of a typical
hospital ward can be intolerable for anyone with ME because of the stress of
the environment - constant noise, bright lights, disruption to the routine -
in addition to any lack of understanding from nurses and doctors. Hospitals
are not good places for restful sleep!
2.3.2 Management of energy
The most important measure for children and adolescents is to be able to
recognise their energy limitations, and to learn to stop before they become
too tired. This is difficult for adults and almost impossible for children.
Ideally an individual daily timetable should be discussed with the child and
family, one which enables the sick child to live within his or her limits
without increasing symptoms, and in which the activities can be repeated
daily without distress. In practice this is very difficult, especially for
ill teenagers, who may rebel against imposed rules or timetables. And in
addition, ME is an illness characterised by fluctuating energy and symptoms,
so it may not always be feasible to follow a strict daily timetable,
especially if there are unforeseen stresses (e.g. an infection or family
crisis), which can lead to increased symptoms or a relapse.
Exercise and rehabilitation
When considering how much activity should be undertaken, it is important
that young patients, parents and advising health professionals should
recognise whether the child is in an acute stage of the illness when
increasing activity is counterproductive, or in a stable phase with few
symptoms other than fatigue, when cautious increase in activity should be
encouraged. (Franklin 1994)
However, many ME patients already operate at the limit of their energy
levels, and for these any increase in activity may be inappropriate
(Friedberg and Krupp 1994). Clinical experience suggests that exercising
beyond the individual's energy limits could be as harmful as absolute rest,
and this has been confirmed in recent studies by an exercise physiologist at
the University of Pacific, USA. (Stevens 1995), and by Dr Charles Lapp (Lapp
1997).
Evidence of defective muscle metabolism in some cases of ME, (Lane 1995,
Behan WMH, 1998) could explain why overenthusiastic rehabilitation
programmes using graded aerobic exercise may fail in some children, and
often leads to increased disability.
Total bed rest is harmful, except for a short time during the acute phase,
and leads to postural hypotension (low blood pressure) and loss of muscle
strength. However most young ME patients retain muscle tone, and get up for
toilet purposes even when in a relapse. These complications can be minimised
during an acute phase of illness by the application of gentle passive
physiotherapy.
The best way for a child to maximise energy and improve daily functioning is
by careful pacing of activity - i.e. alternating activity and rest, and also
alternating physical with mental activity. (Westcare: Task Force Report,
section 14, pp 66-69). The eventual aim is for gradual increase in overall
activity, as the child's tolerance improves.
Cognitive behaviour therapy
C.B.T. has been advocated as a way to improve functional activity in some
adults with ME/CFS (Sharpe 1996), but has not been formally evaluated in
children. However, a team at St Bartholemew's Hospital in London recently
reported a pilot study of a multidisciplinary inpatient rehabilitation
programme, using CBT and graded activity, for severely incapacitated adults
with ME/CFS. (Essame 1998) None were cured, but most improved their fatigue
scores (Karnofsky) using a biopsychosocial approach. It may be more
difficult to apply these methods to children, although addressing the
problems of sleep disturbance, general weakness, and weight loss would be
relevant. A key feature in this study was the care planning with family
members prior to discharge from hospital.
Physiotherapy
In severe bed-ridden cases, gentle physiotherapy can be given to maintain
muscle tone and joint mobility. This can be taught to parents by a
physiotherapist who understands the illness. Fixed contractures of fingers
may sometimes develop in severely ill patients who have uncontrolled muscle
spasms, and splinting may be necessary.
Gradual increase of an activity agreed with the individual child may be
encouraged at weekly or fortnightly intervals. But rigid physiotherapy
regimes that are beyond the ability of a sick child are potentially
physically harmful and emotionally abusive.
School attendance (see also Education Section)
Clinical experience confirms that mental activity is also energy consuming
(Deluca,1995; Smith,1996) so that immediate return to school without
recognising this should not be encouraged (Colby 1996), even though most
children want to return to the company of their peer group as soon as
possible. When they are able to do so, they find this to be a positively
motivating experience, but if pressed to return to school too early, it can
have a negative impact. (See Appendix A, case history 2) Re-entry to school
should be gradual and planned with the school authorities.
The experience of US paediatricians (Bell 1996) suggests that a school child
should be capable of spending up to three hours in a public place - e.g.
shopping centre - with friends, without subsequent deterioration in the
following 12 to 48 hours, before they are ready to return to school.
Social activity
A key feature of ME/CFS is exhaustion from social interaction, whether
talking and listening face to face with more than one person, or using the
telephone. This has far reaching consequences especially for young people,
however much they want to be with their friends. Other peer group
friendships can however be developed using support groups for young ME
patients (see Resources)
2.3.4 Nutrition and Diet
A properly balanced diet of mainly fresh foods is appropriate for most young
patients. It is important that the child with ME has enough calories and
protein for growth, and that if there is loss of appetite the meals are
appetising and easy to swallow. The diet should include complex
carbohydrates to prevent symptoms of hunger and faintness, which are common
in ME due to autonomic dysfunction. Small frequent meals may be easier for a
sick child with poor appetite to cope with.
Special exclusion diets for food allergies or intolerance are not needed for
most children, although a proportion of them may have experienced diet
dependent migraine before the onset of the illness. If they have significant
symptoms suggesting food intolerance (for example migraine, joint pains or
gastro-intestinal symptoms), a dietetically supervised exclusion diet of a
few safe foods for 7-10 days may lead to significant improvement. In view of
the immune system involvement (Tirelli 1996) it is not surprising to find
indigestion and intolerance to foods developing.
The most common foods worth testing by elimination and challenge are: Milk
and milk products, wheat, sugars, citrus fruits, and chocolate.
(Hadisavassiliou 1996).
Severely affected cases with anorexia (not Anorexia Nervosa) and nausea may
become malnourished and fail to maintain weight. The nausea is centrally
mediated, and is a very common symptom of ME/CFS (Komaroff 1995). Poor food
intake can also result from weakness of the chewing and swallowing muscles.
Liquid oral feeds or even naso-gastric tube feeds may get such children
through a difficult patch, provided they are tolerated by the child. A
regime of liquid or tube feeding can be established in the patient's home
with appropriate supervision from a district nurse and children's dietician.
2.3.5 Medication
There is no curative drug treatment, however certain drugs can help some
symptoms. It is generally accepted that treating sleep disorder, depression,
or pain where these are prominent, improves the quality of life. ME/CFS
patients of all ages are usually highly sensitive to psychoactive drugs, and
extreme caution with dosage in children is needed.
Analgesics Simple painkillers including paracetamol and non-steroidal
anti-inflammatories can be tried. Severe migraine may be helped by specific
drugs - for example Migraleve or Imigran - but only in adolescents over 14
years.
Diamox (Acetazolamide) may be effective for severe intractable headaches,
which may be associated with low circulating blood volume (Streeten and Bell
1998).
Muscle relaxants Magnesium has been anecdotally reported by some adults to
help muscle spasms and insomnia, taken by mouth. Intramuscular magnesium,
though promoted in one earlier trial, is no longer considered appropriate,
and is very painful. Occasional diazepam (Valium) can be tried for severe
muscle spasms, but tends to be addictive.
Antidepressants These may be required if sleep disorder and /or depression
are present, but do not cure the underlying condition. SSRIs (fluoxetine,
sertraline etc) are not recommended for children, and a double-blind
controlled trial of fluoxetine (Prozac) found it had no benefit over placebo
for adults with ME/CFS. (Vercoulen 1995). However, anecdotal reports show
that tricyclic antidepressants used in small doses (e.g. amitriptyline,
dothiepin, doxepin, starting at 10mg nocte) may be useful to treat sleep
disturbance, and reduce anxiety and pain. An alternative remedy, Hypericum
(or St John's Wort) has been found to be as effective as amitriptyline for
moderate sleep disorder and depressive symptoms (Linde 1996).
Hypnotics Temazepam in a moderate dose can be used occasionally, but is not
recommended for children, and the benzodiazepine group of drugs are
addictive. For persistent sleep disturbance with frequent waking and
nightmares, low dose tricyclics seem to be the best option. Melatonin has
also been suggested as being vital to maintain the body's diurnal rhythms
and promote sleep at night, however there is no information about its
relevance in children (Soutzos 1998), and at present it is not available on
prescription in the UK.
2.3.6 Immunisations
Anecdotal experience has shown that immunisations may bring on a relapse in
ME/CFS. As with any illness, non-essential immunisations should be avoided
until the child is well.
2.3.7 Managing Psychological Issues
The psychological effects of being seriously ill must be taken into account
in the management of ME/CFS. One of the most damaging psychological effects
for the child will be the feeling of having no control over what is
happening. Another is the effect of having to cope with the attitudes of
others who misunderstand and trivialise the illness. This can cause further
withdrawal from society to avoid the pain of insensitive or hurtful
comments.
From a review of research on psychological issues for children who are ill
or disabled, Prosser (1992) concluded that the right to exercise a level of
control over one's life is essential for self esteem and optimal
psychological development. Good psychological management of the child with
ME would include restoring to him or her an element of control, as described
in Higgins and Siner (1996).
The GMC advises doctors to respect the rights of patients to be fully
involved in decisions about their care. Article 12 of the UN Convention on
Rights of the Child (1991) makes it clear that children and young people
have the right to participate in decisions about themselves. Ambiguity about
the diagnosis of ME adds to the difficulties the child may experience within
the family. In some cases, family therapy linked with ongoing GP contact has
been useful in helping the child, and enabling the parents to feel more
competent about their parenting. Good psychological management will not
underestimate the importance of maintaining a healthy self esteem, and any
attempts to involve adolescents in cognitive behavioural therapy should hold
this to be of primary importance
Young people with ME are often adolescents, at a time when personal
appearance and conforming with peers is very important. Being unable to take
part in the same activities as friends, and having little contact with them,
may cause feelings of isolation. Some severely affected youngsters have no
social contact with their peers for months or years. Social support groups
can help by enabling contact with others through post, phone or E-mail (see
Appendix C). A common source of distress is the inability to attend school
full time because of the limitations imposed by the illness, and the
resulting loss of education. Liaison with and informing school authorities
about ME/CFS would assist teachers to deal with the variability of the
illness in a particular child. (see Education, and Resources)
We are aware of the views of some child and adolescent psychiatrists, which
concentrate almost entirely on possible psychological causes of ME/CFS,
and/or the psychological responses of young patients. It is appropriate to
take into account the psychological responses of a young person to the
illness, however this should not be considered in isolation from the
physical features of the illness.
The use of cognitive behaviour therapy, for example, can be useful by
enabling the child to rethink feelings of helplessless and lack of control,
or feelings of lack of worth. But CBT is not helpful when attempts are made
to get children to rethink themselves out of a state of physical illness.
Intensive regimes of graded exercise and therapy within in-patient
psychiatric units are often counterproductive for this reason.
2.4 Epidemiology
2.4.1 Outbreaks of ME
Many accounts have been documented since 1934. Of these, thirteen make
specific mention of children, and one is concerned wholly with this age
group (Bell 1992, 'Children with ME/CFS - an overview of literature). Most
of the accounts of outbreaks of ME in children and adolescents find peak
prevalence at puberty, and seven note the relapsing nature of the illness,
and tendency to chronicity. Three documented outbreaks specify a
predominance of female gender, summer/autumn onset, and clustering of cases
in schools or families.
An outbreak in Iceland in 1947-8 was documented by Sigurdsson (1950) under
the description "a disease epidemic simulating poliomyelitis." There were
over 400 cases, and the outbreak centred on the high school in Akureyri,
where teachers were also affected. The peak age was between 15 and 19 years
with a 3:1 female to male ratio. Of those affected who are still alive, most
still have disabilities today (Hyde 1988). In a Lancashire epidemic (Lyle
1956) children bore the brunt of the illness, which clustered in schools and
families; Echo 9 enterovirus was isolated. In 1959 Acheson reviewed 15
outbreaks worldwide, noting, in particular, late childhood onset and
chronicity.
2.4.2 Schools
The largest epidemiological study of ME in children and adolescents to date
is by Dowsett and Colby (1997), and findings mirror those of earlier
studies. Schools' long-term sickness absence statistics were collected over
a five year period from 1991 to 1995. Since the 1991 School Attendance
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